Genetic counseling was a breeze. At my meeting with Dr. M., she gave me some information on the genetic test, including a 23-minute DVD and a Patient Guide. I went through it all the night before so I'd be up to speed. These educational meetings are OK; I'm glad they're taking the time to really make sure I know what's going on. On the same token, though, it is like school (which I haven't been a fan of since about sixth grade) and they tell me a lot of stuff I already know. I just want to go in, learn, ask questions, and get out. My parents, on the other hand, have more questions and don't have the same set of knowledge, so that made things take a little longer. I guess that's OK because I want them to have all their questions answered too, and I appreciate their support and interest.
Genetic testing, to me, is a little creepy futuristic science fictiony. It feels like I'm in a movie about the future, and people know their DNA and life isn't a surprise anymore. That's being overly dramatic, I know, but it does sorta give me the creeps.
Anyway, I'm glad that I learned about genetic testing because it arms me with more information concerning immediate choices, such as surgery, and also information that will impact the rest of my life, like a potential increased likelihood of ovarian cancer.
Usually at a genetic counseling appointment, you map out your family tree and fill in information on cancer history. As the Nurse AW said, my map would just be one circle, representing me, because I was adopted and have no records of any family cancer history. So a family tree wouldn't be helpful in my situation. Which meant we could skip on!
From the Patient Guide:
" Hereditary breast and ovarian cancer syndrome is an inherited condition that causes an increased risk for ovarian cancer and early onset breast cancer (often before age 50). The vast majority of hereditary breast and ovarian cancer is due to an alteration of mutation in either the BRCA1 or BRCA2 genes. These mutations can be inherited from either your mother or father."
The guide shows a little table explaining some risk percentages for BRCA mutation carriers. Someone with a mutation has a 56-87% chance of breast cancer, compared to just a 7% chance for the general population. Someone with a mutation has a 27-44% chance of getting ovarian cancer, compared to less than 2% chance of the general population. And someone with a mutation has a 48-64% to get a secondary primary breast cancer (a completely new breast cancer and not a recurrence), but the general population's risk is only 2-11%.
Ways to manage the knowledge that you have a mutation involves increased surveillance, with extra exams and imaging, chemoprevention, meaning using drugs to reduce risk (which doesn't really apply to me, due to my specific cancer being ER/PR-), and preventive surgery, meaning mastectomy (removal of the breast) or oophorectomy (removal of the ovary). All these things reduce risk.
There are three types of tests, and depending on how much you know about your family, you can choose between a Comprehensive BRACAnalysis (when you don't know anything about your family and need the full sequence examined), Single Site BRACAnalysis (when someone in your family has already had the test performed and knows where the mutation is) or Multisite BRACAnalysis (when you're of Ashkenazi Jewish ancestry... whatever that's about).
There are three types of results you can get, which is weird because you'd think it would just be YES or NO. Unfortunately there's a MAYBE. If your result is positive, then you have an increased risk of cancer and medical management should be based on recommendations for mutation carriers. If it's negative and and a mutation has previously been identified in the family, then you have no increased cancer risk and fall under the cancer screening recommendations for the general public. If it's negative and no mutation has previously been identified in the family, then your chance of hereditary breast and ovarian cancer is significantly reduced and medical management should be based on personal and family history. BUT, if your result is "uncertain variant," it means they didn't find the specific mutations we know about, but there was something weird on your genes. That indicates that your cancer risk is not fully defined, and medical management should be based on personal and family history. This is all sorta BLAH BLAH BLAH for me because I already know I have cancer, so my risk can be called 100%. But it would be good to know my risk level for ovarian cancer. Cuz I don't want that-- cancer sucks. Carrie hates cancer.
If you have a mutation, your chance to pass it on to your children is 50%.
Some of you may be wondering if finding out about your genetic makeup will affect insurance stuff. Apparently laws have been passed so that you can't be discriminated against based on genetic information, and nobody has had to take anybody to court about it. So that's good.
The test is super expensive, somewhere over $3,000. There's only one lab that performs the test, so they control all the marbles. I had an issue about that, because all the informational and education tools were created by this lab, Myriad Genetic Laboratories, Inc. The information seemed biased; there were no real down sides to testing in the information. Anyway. The nurse told me about a grant that's out there that would certainly cover the cost of testing for me, since my income isn't very much. My parents want to pay for all this, anyway; I think it makes them feel like they're really helping (which they are!) and they don't want me to have to spend all my hard-earned and harder-saved pennies on being sick. Either way, it turned out that my insurance would pay for most of it, leaving me with $424 to pay. Not bad.
So I went ahead and did it. The blood was drawn and sent. On Tuesday, August 5, someone called to tell me how much I would have to pay, and I agreed and gave them the go ahead to do the test. The woman on the phone said I'd have my results in two weeks or less. So now all I have to do is wait and hope for a negative result. To all my friends and other readers, please pray for a negative result!
For more information on the test, or to see the pretty diagrams, click here.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Chemo School!
Chemo school was very informative. We went through a check sheet about all the wonderful side effects of Taxol, my first chemotherapy drug and new best friend for the 12 weeks we'll spend together. I got some handouts and nifty little books about chemo, side effects, and nutrition.
The side effects are these, directly copied from my handout:
The side effects are these, directly copied from my handout:
- Bone Marrow Suppression (Myelosuppression): Your red blood cell (RBC), white blood cell (WBC), and platelet coutns will all drop after Taxol, reaching their lowest point (nadir) at 1-2 weeks. This makes you more prone to anemia, infection, and bleeding. All counts will recover by themselves. No specific diet or activity will hasten this.
- Hair Loss (alopecia): Hair loss is temporary. It will grow back after chemotherapy is completed. Hair loss will start 2-3 weeks after Taxol is given.
- Decreased Fertility: May cause absence of periods, decreased sperm count, or permanent sterility. Continue to use contraception!
- Fatigue: You could have a certain amount of fatigue throughout the entire treatment period. Moderate exercise, good nutrition, and rest can help remedy fatigue.
- Neurotoxicity (Nerve damage): Numbness and tingling may occur in your hands and feet. May get worse with additional Taxol treatments. Usually improves slowly after Taxol is stopped.
- Muscle and Joint Pain: Can start 1-2 days after Taxol infusion and lasts 4-5 days. Usually well controlled with over-the-counter pain meds like ibuprofen or Tylenol. Prescription medication may be given if pain persists.
- Hypersensitivity Reaction (Rare): Can include flushing, blood pressure changes, nausea, or difficulty breathing. You will be given medications through the IV prior to the Taxol to decrease the chance of a hypersensitivity reaction occurring. Usually occurs within the first 5-15 minutes of infusion, if at all.
- There was also a bunch of talk about nausea, constipation, diarrhea and oral hygiene. Boring. Yuck.
So that sounds like fun...
We also talked about some warning signs to be aware of. If I get a fever over 100.5 degrees, chills, shortness of breath, dizziness, blah blah blah, I have to call the office and let them know.
Now that I know, I'm prepared for this chemo thing. I hope I don't experience too many negative side effects, or at least not too severely. I guess we'll see... Stay tuned...
Monday, July 28, 2008
Appointments
So today someone at Front Range Cancer Specialists called to give me my grocery list of appointments for the week. Should be a busy one!
Tuesday: Chemo Education
At "chemo school," as my parents named it, a nurse will talk to us about the side effects of Taxol, my first chemotherapy drug.
Wednesday: Genetic Counseling
Genetic counseling is another educational appointment where the same nurse as the day before will explain a little about what hereditary breast cancer is and what to expect from a genetic test. If I decide to do it, I'll have a blood test afterwards.
Thursday: PET Scan and Port Implantation Surgery
This is going to be a busy day! Because I chose to go with Dr. S., my port placement surgery will be in Denver. So in the morning I need to go get a PET Scan, which is a full body scan, and then race down to Rose Medical in Denver to get this port put in. Whew! The port placement was actually scheduled with a separate doctor's office, which made it a little more difficult to coordinate. But the sooner the port is in, the sooner I can start chemo. So let's go go go!
Friday: EKG
I have to get a baseline EKG to check on my heart. Apparently one of my chemo drugs' side effects is weakening of the heart muscle, so Dr. M. wants to make sure that my heart is in good shape. It will also serve as an image to compare any changes to my heart.
My brother is coming for a visit on Wednesday, which will be really nice. I think he's been really worried because he's all the way out in Buffalo, NY, and doesn't really have a feel for the day-to-day situation or how serious things are. I think he'll be relieved to see that things aren't so different for me. Anyway, it's before his pre-season for soccer, so it makes for a good time to visit anyway I think.
Tuesday: Chemo Education
At "chemo school," as my parents named it, a nurse will talk to us about the side effects of Taxol, my first chemotherapy drug.
Wednesday: Genetic Counseling
Genetic counseling is another educational appointment where the same nurse as the day before will explain a little about what hereditary breast cancer is and what to expect from a genetic test. If I decide to do it, I'll have a blood test afterwards.
Thursday: PET Scan and Port Implantation Surgery
This is going to be a busy day! Because I chose to go with Dr. S., my port placement surgery will be in Denver. So in the morning I need to go get a PET Scan, which is a full body scan, and then race down to Rose Medical in Denver to get this port put in. Whew! The port placement was actually scheduled with a separate doctor's office, which made it a little more difficult to coordinate. But the sooner the port is in, the sooner I can start chemo. So let's go go go!
Friday: EKG
I have to get a baseline EKG to check on my heart. Apparently one of my chemo drugs' side effects is weakening of the heart muscle, so Dr. M. wants to make sure that my heart is in good shape. It will also serve as an image to compare any changes to my heart.
My brother is coming for a visit on Wednesday, which will be really nice. I think he's been really worried because he's all the way out in Buffalo, NY, and doesn't really have a feel for the day-to-day situation or how serious things are. I think he'll be relieved to see that things aren't so different for me. Anyway, it's before his pre-season for soccer, so it makes for a good time to visit anyway I think.
Friday, July 25, 2008
The Oncologist Appointment!
The day I've been awaiting since my diagnosis has finally come! Mom, Dad and I met with Dr. M., my oncologist, today at 4:00. She was really nice, as everyone said, and comes highly recommended by just about everyone in town, it seems. She's Romanian, but I was too shy to try out my Romanian on her. I can say hi, how are you, fine, and garlic. We ended up having to go out a special exit because she stayed well after closing to answer our questions, which was really nice. Another thing that was great was that she told me right off the bat that I would be leaving with a plan for treatment. What a relief! All this talking, all these appointments, and now finally I will know what the hell is going to happen!
(BTW, I'm posting ALL this old stuff weeks after it happened because I'm really behind. So I've probably forgotten a lot of stuff. I apologize. This was a pretty important one, but most of the others are just so I remember. I don't even know if people are going back to these old ones to see what's been added. Hmmm. Just FYI.)
We talked about all sorts of stuff, so I guess I'll rehash as it comes back to me. She did some background on breast cancer with us, but that was review since every doctor had done that and we'd all done our fair share of reading. She explained that based on the size of my tumors, whether measured alone or together, would still qualify my cancer as a Stage 2 Infiltrating Ductal Carcinoma. I was under the impression that staging had to be done in conjunction with surgery, so it was good to hear she thought I was Stage 2 and not more advanced, although we don't know much as to the lymph involvement.
She told me that she was pretty certain I won't be infertile after treatment. She was an absolute whiz with statistics, and she said she thought I had a 15-20% chance that my period wouldn't come back, meaning I would be infertile and have to go through menopause early (ugh). I think that's still a pretty high percentage, but it's not that bad. And maybe if I am infertile, it's some sort of sign that I was meant to either not be a parent because I'd suck or hate it, or that I'm meant to do it through other venues. Either way, I took the 80-85% chance of maintaining my fertility status as good news.
She also explained to us that my tumor was ER/PR-, which means it isn't stimulated by hormones. That's good news because these tumors respond really well to chemotherapy, as Dr. S. told us. It's bad news because it rules out all hormonal treatments, thus narrowing my scope of treatment.
She discussed and educated us on how we find out whether cancer has spread and how to learn more about lymph node involvement. Essentially, so far we hadn't seen anything on the imaging to suggest that the cancer has spread to my lymph nodes, but after having a something called a PET Scan, which is more sensitive and will scan my body from head to mid-thigh, we'll know a little more. Surgically speaking, there are two methods to determine whether cancer has spread to the lymph nodes: a sentinel node dissection and an axillary node dissection. I'm hoping to have a sentinel node dissection because lymphedema sounds really sucky.
I told Dr. M. about my two meeting with the surgeons and how I was confused about what my options really are. I expressed to her that I am really hoping to "preserve the breast," as she put it, but that I'm prepared to do what I have to do. She seemed more skeptical than I had hoped about the lumpectomy (and I cried a little :( ), saying that as there are two tumors, taking them out might leave me cosmetically unhappy. She also brought up the topic of genetic testing, which both surgeons mentioned, and I think that deserves its own paragraph (actually, I had an educational course about genetic testing, so I'll get into further detail on that post).
Apparently there is now a genetic test that can determine whether a breast cancer patient has mutations to the two known breast cancer genes, BRCA1 and BRCA2. While there are probably unknown breast cancer-causing genes, these two constitute 85% of genetic breast cancers. It's a simple blood test. And since I have no family history of breast cancer because I have no family medical history whatsoever due to the fact that I was adopted, Dr. M. strongly recommended that I consider and pursue the test. Which costs over $3,000, but we'll get into that later. Anyway, the results of a genetic test would be very important to all surgical decisions because a patient with a genetic mutation has a significantly higher risk of a second primary breast cancer (an entirely new cancer) and ovarian cancer. Hooray. So for a patient who gets a positive result, a mastectomy would certainly be the recommended course of action, as would an oophorectomy (removal of the ovaries) once child bearing is completed, but ideally before the age of 35. You can see why you don't want your genetic test to come back positive.
We talked about chemo ports, which are port implanted under the skin with a catheter (not for peeing) attached so that you don't have to get an IV put in every time. Sounds nice. Plus they can draw blood from it. I'll have to get that put in sometime next week I guess. And we agreed that Dr. S. would be my surgeon, so Dr. M. said she'd give her a call to get on the same page.
We talked a little about clinical trials, but those scared me. I know that each participant receives the standard treatment, but I worry about unknown side effects later down the road. Dr. M. could see the idea just stressed me out further, and anyway, there weren't any trials for people opting to do chemo first.
We also talked about the fact that chemo before surgery is equally effective as chemo after surgery. Since I'm hoping still for a lumpectomy, though she was fair and DID warn me that that may not be a possibility for me, we decided that chemo first was going to be part of my plan.
Then Dr. M. presented the choice of doing the drug Taxol in either a large dose, once every two weeks for a duration of 8 weeks, or in a smaller dose, every week for a duration of 12 weeks. I didn't have much time to think about it, but I decided that the smaller dose sounded better. The side effects were supposed to be lesser, and it's not like I'm exactly on a time crunch, though I don't want treatment to last forever.
So doing the lighter dose means Taxol will be first, then followed by another drug (whose name I don't remember) in 4 doses every other week for a duration of 8 weeks. So 20 weeks of chemotherapy treatment, or 5 months.
This lead me to ask about skiing. In 20 weeks from now, it'll be approximately Christmas, when it's safe to assume there will indeed be moguls. Dr. M. broke the bad news that there will probably be no skiing for me this year. After chemo, I'll have a month of recovery before surgery. And if it's a mastectomy, then there will be no skiing because boob bouncing cannot happen, and the recovery is pretty long. Oh well, next year I guess.
So the plan is in place, and I have to do a bunch of appointments next week. But Dr. M. implied I'll be starting chemo soon-- sometime around August 4. They're going to call me on Monday to schedule them.
To clarify, it looks likes this:
1. Chemotherapy for 5 months.
2. Do the genetic test. If positive-- probably mastectomy followed by reconstruction. If negative-- probably lumpectomy followed by radiation for 6 weeks.
Then Dr. M. told me she was going on vacation (to Keystone! Why not WP?) for the next week but that there would be people I could talk to at the office or I could email her.
It felt really good to have a plan in place, but I was really disappointed that she wasn't as confident or enthusiastic about a lumpectomy as I had hoped. I tried not to get my hopes up about it because I hate being disappointed, but it didn't work. Oh well. Roll with the punches. And get ready for another week of appointments. Whew.
(BTW, I'm posting ALL this old stuff weeks after it happened because I'm really behind. So I've probably forgotten a lot of stuff. I apologize. This was a pretty important one, but most of the others are just so I remember. I don't even know if people are going back to these old ones to see what's been added. Hmmm. Just FYI.)
We talked about all sorts of stuff, so I guess I'll rehash as it comes back to me. She did some background on breast cancer with us, but that was review since every doctor had done that and we'd all done our fair share of reading. She explained that based on the size of my tumors, whether measured alone or together, would still qualify my cancer as a Stage 2 Infiltrating Ductal Carcinoma. I was under the impression that staging had to be done in conjunction with surgery, so it was good to hear she thought I was Stage 2 and not more advanced, although we don't know much as to the lymph involvement.
She told me that she was pretty certain I won't be infertile after treatment. She was an absolute whiz with statistics, and she said she thought I had a 15-20% chance that my period wouldn't come back, meaning I would be infertile and have to go through menopause early (ugh). I think that's still a pretty high percentage, but it's not that bad. And maybe if I am infertile, it's some sort of sign that I was meant to either not be a parent because I'd suck or hate it, or that I'm meant to do it through other venues. Either way, I took the 80-85% chance of maintaining my fertility status as good news.
She also explained to us that my tumor was ER/PR-, which means it isn't stimulated by hormones. That's good news because these tumors respond really well to chemotherapy, as Dr. S. told us. It's bad news because it rules out all hormonal treatments, thus narrowing my scope of treatment.
She discussed and educated us on how we find out whether cancer has spread and how to learn more about lymph node involvement. Essentially, so far we hadn't seen anything on the imaging to suggest that the cancer has spread to my lymph nodes, but after having a something called a PET Scan, which is more sensitive and will scan my body from head to mid-thigh, we'll know a little more. Surgically speaking, there are two methods to determine whether cancer has spread to the lymph nodes: a sentinel node dissection and an axillary node dissection. I'm hoping to have a sentinel node dissection because lymphedema sounds really sucky.
I told Dr. M. about my two meeting with the surgeons and how I was confused about what my options really are. I expressed to her that I am really hoping to "preserve the breast," as she put it, but that I'm prepared to do what I have to do. She seemed more skeptical than I had hoped about the lumpectomy (and I cried a little :( ), saying that as there are two tumors, taking them out might leave me cosmetically unhappy. She also brought up the topic of genetic testing, which both surgeons mentioned, and I think that deserves its own paragraph (actually, I had an educational course about genetic testing, so I'll get into further detail on that post).
Apparently there is now a genetic test that can determine whether a breast cancer patient has mutations to the two known breast cancer genes, BRCA1 and BRCA2. While there are probably unknown breast cancer-causing genes, these two constitute 85% of genetic breast cancers. It's a simple blood test. And since I have no family history of breast cancer because I have no family medical history whatsoever due to the fact that I was adopted, Dr. M. strongly recommended that I consider and pursue the test. Which costs over $3,000, but we'll get into that later. Anyway, the results of a genetic test would be very important to all surgical decisions because a patient with a genetic mutation has a significantly higher risk of a second primary breast cancer (an entirely new cancer) and ovarian cancer. Hooray. So for a patient who gets a positive result, a mastectomy would certainly be the recommended course of action, as would an oophorectomy (removal of the ovaries) once child bearing is completed, but ideally before the age of 35. You can see why you don't want your genetic test to come back positive.
We talked about chemo ports, which are port implanted under the skin with a catheter (not for peeing) attached so that you don't have to get an IV put in every time. Sounds nice. Plus they can draw blood from it. I'll have to get that put in sometime next week I guess. And we agreed that Dr. S. would be my surgeon, so Dr. M. said she'd give her a call to get on the same page.
We talked a little about clinical trials, but those scared me. I know that each participant receives the standard treatment, but I worry about unknown side effects later down the road. Dr. M. could see the idea just stressed me out further, and anyway, there weren't any trials for people opting to do chemo first.
We also talked about the fact that chemo before surgery is equally effective as chemo after surgery. Since I'm hoping still for a lumpectomy, though she was fair and DID warn me that that may not be a possibility for me, we decided that chemo first was going to be part of my plan.
Then Dr. M. presented the choice of doing the drug Taxol in either a large dose, once every two weeks for a duration of 8 weeks, or in a smaller dose, every week for a duration of 12 weeks. I didn't have much time to think about it, but I decided that the smaller dose sounded better. The side effects were supposed to be lesser, and it's not like I'm exactly on a time crunch, though I don't want treatment to last forever.
So doing the lighter dose means Taxol will be first, then followed by another drug (whose name I don't remember) in 4 doses every other week for a duration of 8 weeks. So 20 weeks of chemotherapy treatment, or 5 months.
This lead me to ask about skiing. In 20 weeks from now, it'll be approximately Christmas, when it's safe to assume there will indeed be moguls. Dr. M. broke the bad news that there will probably be no skiing for me this year. After chemo, I'll have a month of recovery before surgery. And if it's a mastectomy, then there will be no skiing because boob bouncing cannot happen, and the recovery is pretty long. Oh well, next year I guess.
So the plan is in place, and I have to do a bunch of appointments next week. But Dr. M. implied I'll be starting chemo soon-- sometime around August 4. They're going to call me on Monday to schedule them.
To clarify, it looks likes this:
1. Chemotherapy for 5 months.
2. Do the genetic test. If positive-- probably mastectomy followed by reconstruction. If negative-- probably lumpectomy followed by radiation for 6 weeks.
Then Dr. M. told me she was going on vacation (to Keystone! Why not WP?) for the next week but that there would be people I could talk to at the office or I could email her.
It felt really good to have a plan in place, but I was really disappointed that she wasn't as confident or enthusiastic about a lumpectomy as I had hoped. I tried not to get my hopes up about it because I hate being disappointed, but it didn't work. Oh well. Roll with the punches. And get ready for another week of appointments. Whew.
Thursday, July 24, 2008
A Breast MRI, An Appointment Cancelled
Today I had my first MRI. It was sorta a special one, I think (I obviously don't have anything to compare it to) because I was on my chest with my head facing down. When I got there, I had to change into comfy scrubs. Then a nurse put an IV into my arm, which wasn't fun, but whatever, it wasn't that bad. The IV was to put in some sort of contrast to make my images come out more clearly and easier to read.
Then I was led to the MRI room, and a technician explained what was going to happen. She got me all situated, which involved putting my boobs into two holes, propping up my head, and putting cushions under my arms and legs. I couldn't breathe to deeply, cough, sneeze, itch, wipe my nose, or move in general because it would blur the images. She told me could hear me if I needed anything, and that she'd communicate with me to tell me how long each one would be, etc.
She slid me in, which was fun, and we got started. In the MRI tube, you hear a bunch of weird noises that sound like really boring electronic music. They give you earphones because it's pretty loud, but you can still hear it. I hate to holding still when someone tells me to because it just makes me want to move. I can hold still in general, but it's hard to do when someone says I have to! I had to do one twice because I moved. The whole process took maybe a half hour, and then I got to get the damn IV out of my arm. I hate the way it feels to have a tube in my vein.
And that was it!
I decided to cancel my Friday appointment with Dr. C., the third opinion surgeon. For one, Dr. G. seemed very confident that Dr. C. would agree with Dr. D., and for two, I just wanted to talk to my oncologist before hearing any more opinions. I can't take any more opinions before I talk to her tomorrow. I can't wait!
Then I was led to the MRI room, and a technician explained what was going to happen. She got me all situated, which involved putting my boobs into two holes, propping up my head, and putting cushions under my arms and legs. I couldn't breathe to deeply, cough, sneeze, itch, wipe my nose, or move in general because it would blur the images. She told me could hear me if I needed anything, and that she'd communicate with me to tell me how long each one would be, etc.
She slid me in, which was fun, and we got started. In the MRI tube, you hear a bunch of weird noises that sound like really boring electronic music. They give you earphones because it's pretty loud, but you can still hear it. I hate to holding still when someone tells me to because it just makes me want to move. I can hold still in general, but it's hard to do when someone says I have to! I had to do one twice because I moved. The whole process took maybe a half hour, and then I got to get the damn IV out of my arm. I hate the way it feels to have a tube in my vein.
And that was it!
I decided to cancel my Friday appointment with Dr. C., the third opinion surgeon. For one, Dr. G. seemed very confident that Dr. C. would agree with Dr. D., and for two, I just wanted to talk to my oncologist before hearing any more opinions. I can't take any more opinions before I talk to her tomorrow. I can't wait!
Wednesday, July 23, 2008
Plastic Surgeon... Never Thought It Would Be For This...
I met with Dr. G. this morning, a plastic surgeon who works in Greeley. I told me parents I wanted to do this one alone, since it's pretty personal. My appointment was super early, and I felt a cold coming on.
For one, a plastic surgeon's office is totally different from a regular doctor's office. Everything inside was lush and plush and beautiful, even the staff! When I got there, they offered me something to drink. How weird is that?
Dr. G. came in and talked to me about some general things about the surgery, most of which I already knew from talking with Dr. D. He showed me the different implants, and I felt like I was on Dr. 90210, with the saline implant in one hand and the silicone in the other. I hadn't really organized many questions because the whole thing was sudden and foreign. He too needed to do an exam, and he took some measurements and had an assistant take photos. I aked him if breasts ever came out of reconstruction looking better than before. He told me he had to be honest, that he couldn't beat nature, and that given the fact that I have no stretch marks or sagging from breastfeeding, they won't be better than they are. I also asked if he was the one to ask about for sizes, because if I have to have reconstruction, you better bet they'll be bigger. He said he wouldn't let me go crazy, and if I said I wanted a D-cup, he'd say no. Good to know (BTW, I'm thinking a happy C-cup, what do you think?).
I told Dr. G. about the two opinions I had gotten from the surgeons. He was surprised at Dr. S.'s advice, and told me that he didn't think my oncologist would go for that. To be honest, my guess is that he's not that knowledgeable about new developments in breast cancer, so I sorta took that with a grain of salt. Anyway, if the oncologist says no, she could tell me on Friday at our appointment. I told him I had another appointment for a third opinion with a Dr. C., and Dr. G. said he would get money that Dr. C. would recommend a mastectomy as well. That wasn't such good news.
After he was done talking to me, he sent in a woman I would describe as "the deal closer." She was probably just an appointment setter, but I had made sure that both she and the doctor knew that I wasn't for sure having a reconstruction. She just kept telling me how women just feel so much better with their reconstructions all done, and how good of a doctor Dr. G. is. She kept saying "you know what I mean?" which was driving me crazy.
If I were to end up with Dr. S. but still need a mastectomy, I would have to work with another plastic surgeon since Dr. G. is in Greeley. So then another appointment.
I left the appointment with a really strange feeling. For one, plastic surgery is much different from regular surgery, so in a way they really are trying to "sell" you a surgery. And that's sorta how I felt, like I had just listened to a sales pitch. Not to say they weren't kind and respectful; they certainly were. And with the two options from Dr. D. and Dr. S., my head was still swimming trying to figure out what to think. I would say that given the earliness of the appointment, my head cold, and the ever-contrasting opinions of the surgeons, I wasn't as focused as maybe I should have been for this appointment.
For one, a plastic surgeon's office is totally different from a regular doctor's office. Everything inside was lush and plush and beautiful, even the staff! When I got there, they offered me something to drink. How weird is that?
Dr. G. came in and talked to me about some general things about the surgery, most of which I already knew from talking with Dr. D. He showed me the different implants, and I felt like I was on Dr. 90210, with the saline implant in one hand and the silicone in the other. I hadn't really organized many questions because the whole thing was sudden and foreign. He too needed to do an exam, and he took some measurements and had an assistant take photos. I aked him if breasts ever came out of reconstruction looking better than before. He told me he had to be honest, that he couldn't beat nature, and that given the fact that I have no stretch marks or sagging from breastfeeding, they won't be better than they are. I also asked if he was the one to ask about for sizes, because if I have to have reconstruction, you better bet they'll be bigger. He said he wouldn't let me go crazy, and if I said I wanted a D-cup, he'd say no. Good to know (BTW, I'm thinking a happy C-cup, what do you think?).
I told Dr. G. about the two opinions I had gotten from the surgeons. He was surprised at Dr. S.'s advice, and told me that he didn't think my oncologist would go for that. To be honest, my guess is that he's not that knowledgeable about new developments in breast cancer, so I sorta took that with a grain of salt. Anyway, if the oncologist says no, she could tell me on Friday at our appointment. I told him I had another appointment for a third opinion with a Dr. C., and Dr. G. said he would get money that Dr. C. would recommend a mastectomy as well. That wasn't such good news.
After he was done talking to me, he sent in a woman I would describe as "the deal closer." She was probably just an appointment setter, but I had made sure that both she and the doctor knew that I wasn't for sure having a reconstruction. She just kept telling me how women just feel so much better with their reconstructions all done, and how good of a doctor Dr. G. is. She kept saying "you know what I mean?" which was driving me crazy.
If I were to end up with Dr. S. but still need a mastectomy, I would have to work with another plastic surgeon since Dr. G. is in Greeley. So then another appointment.
I left the appointment with a really strange feeling. For one, plastic surgery is much different from regular surgery, so in a way they really are trying to "sell" you a surgery. And that's sorta how I felt, like I had just listened to a sales pitch. Not to say they weren't kind and respectful; they certainly were. And with the two options from Dr. D. and Dr. S., my head was still swimming trying to figure out what to think. I would say that given the earliness of the appointment, my head cold, and the ever-contrasting opinions of the surgeons, I wasn't as focused as maybe I should have been for this appointment.
Tuesday, July 22, 2008
Good News? How Unfamiliar..
I met with Dr. S. in Denver today, and I finally feel like I've gotten some better news. It's nice to get another perspective too, and I have to say, I'm really glad my second opinion came from a woman.
Dr. S. is a tiny little surgeon who is very confident, informative, and smart. She was so nice, but mostly she wowed me with her intelligence. She told me that her office was mostly devoted to breast surgeries, and that 8% of all breast cancer cases in Colorado go through her practice. That's pretty impressive to me.
Both Dr. D. and Dr. S. were quick to notice my age, and even though it might sound silly, they were both perfectly sensitive to what it means for a 25-year-old single woman to face breast cancer. Somehow it just seems easier if you're already married and don't really have to worry about being perfect and attractive for dating. I know that sounds silly; it makes me even roll my eyes at myself for worrying about my aesthetics when my life is sorta at stake, but I am terrified to come out of this all ugly. How vain. But seriously.
Anyway, Dr. S. did a cool thing, which was that she talked to me before looking at my test results and films. She said she liked to do that so she could get a feeling for what a patient is hoping for, and what kind of lifestyle and general situation she's in. That ways she doesn't have a preconception for what should happen and what can be possible. I let her know that the prospect of a bilateral mastectomy at my age is... horrifying. Terrifying. Not ideal, in any case. She warmly told me that I definitely have options, which was good to hear, but as she had not seen my films, I didn't want to get my hopes up. She also disagreed when I told her the first surgeon seemed convinced that my cancer is genetic. She said it wasn't necessarily genetic.
So after talking to us about what I was hoping for and my general situation, she went to look at my films. My parents left and I undressed. All these appointments seem to have breast exams... she was like the fifth stranger that week to have her hands on my breasts... She did a quick exam and then I redressed. My parents came back and we got ready for the big pow-wow.
First she gave us a rundown on breast cancer, which we sorta already knew but she gave a more detailed explanation and drew pictures. And she drew them upside-down so we could see them right-side-up!
Dr. S. had new information from my pathology that Dr. D. didn't have on Friday. This may or may not have affected why their opinions ended up being so different. Anyway, she told me that my tumors are ER/PR negative, meaning they are not stimulated by hormones. This is both good and bad news. It's bad news because it means I do not have the option of hormonal treatments, narrowing my scope of treatments. It's good because ER/PR negative tumors respond really well to chemotherapy. She said "They just melt away, implode!" That's a great thing because it meant that if I were to do chemo first, which is a relatively new method but results in the same chances for survival, my tumor would shrink down considerably (such to the point that sometimes surgeons can't find them anymore save for the metal markers that are placed inside!) and a lumpectomy would still be possible. Hooray! Even if it's a long shot, it means there's still a chance, and a bilateral mastectomy isn't my only answer. Of course, my oncologist would have to agree that that's the best way to go, so it's not like I'm in the clear or anything. And she did bring up the genetic test, because if it is indeed a genetic cancer, then mastectomy might be the smartest and safest choice.
Dr. S. kept repeating that I do have choices here, which was comforting. She also said she has no ego, and if she functions only as a second opinion, that's fine with her. She spent ample time with us, and that was great.
I left this appointment feeling a new sense of hope, but trying not to get my hopes up too much because the bad news is just so crushing. But at least we knew more than before, and I really liked her method.
I guess we'll see what the oncologist says. I'm really looking forward to meeting her now because these two surgeons have given me two totally contrasting opinions, and I have no clue what's going on again.
Dr. S. is a tiny little surgeon who is very confident, informative, and smart. She was so nice, but mostly she wowed me with her intelligence. She told me that her office was mostly devoted to breast surgeries, and that 8% of all breast cancer cases in Colorado go through her practice. That's pretty impressive to me.
Both Dr. D. and Dr. S. were quick to notice my age, and even though it might sound silly, they were both perfectly sensitive to what it means for a 25-year-old single woman to face breast cancer. Somehow it just seems easier if you're already married and don't really have to worry about being perfect and attractive for dating. I know that sounds silly; it makes me even roll my eyes at myself for worrying about my aesthetics when my life is sorta at stake, but I am terrified to come out of this all ugly. How vain. But seriously.
Anyway, Dr. S. did a cool thing, which was that she talked to me before looking at my test results and films. She said she liked to do that so she could get a feeling for what a patient is hoping for, and what kind of lifestyle and general situation she's in. That ways she doesn't have a preconception for what should happen and what can be possible. I let her know that the prospect of a bilateral mastectomy at my age is... horrifying. Terrifying. Not ideal, in any case. She warmly told me that I definitely have options, which was good to hear, but as she had not seen my films, I didn't want to get my hopes up. She also disagreed when I told her the first surgeon seemed convinced that my cancer is genetic. She said it wasn't necessarily genetic.
So after talking to us about what I was hoping for and my general situation, she went to look at my films. My parents left and I undressed. All these appointments seem to have breast exams... she was like the fifth stranger that week to have her hands on my breasts... She did a quick exam and then I redressed. My parents came back and we got ready for the big pow-wow.
First she gave us a rundown on breast cancer, which we sorta already knew but she gave a more detailed explanation and drew pictures. And she drew them upside-down so we could see them right-side-up!
Dr. S. had new information from my pathology that Dr. D. didn't have on Friday. This may or may not have affected why their opinions ended up being so different. Anyway, she told me that my tumors are ER/PR negative, meaning they are not stimulated by hormones. This is both good and bad news. It's bad news because it means I do not have the option of hormonal treatments, narrowing my scope of treatments. It's good because ER/PR negative tumors respond really well to chemotherapy. She said "They just melt away, implode!" That's a great thing because it meant that if I were to do chemo first, which is a relatively new method but results in the same chances for survival, my tumor would shrink down considerably (such to the point that sometimes surgeons can't find them anymore save for the metal markers that are placed inside!) and a lumpectomy would still be possible. Hooray! Even if it's a long shot, it means there's still a chance, and a bilateral mastectomy isn't my only answer. Of course, my oncologist would have to agree that that's the best way to go, so it's not like I'm in the clear or anything. And she did bring up the genetic test, because if it is indeed a genetic cancer, then mastectomy might be the smartest and safest choice.
Dr. S. kept repeating that I do have choices here, which was comforting. She also said she has no ego, and if she functions only as a second opinion, that's fine with her. She spent ample time with us, and that was great.
I left this appointment feeling a new sense of hope, but trying not to get my hopes up too much because the bad news is just so crushing. But at least we knew more than before, and I really liked her method.
I guess we'll see what the oncologist says. I'm really looking forward to meeting her now because these two surgeons have given me two totally contrasting opinions, and I have no clue what's going on again.
Monday, July 21, 2008
The Second Surgical Opinion
I went back to WP for the weekend to work. I was still thinking about the information Dr. D. had given me to digest. There just had to be another opinion, right? This couldn't be the end-all decision for my future, could it?
My parents and my brother had both heard really good things about a surgeon in Denver, Dr. S. She was the surgeon my mom's gynecologist went to when she was diagnosed with breast cancer. I called to get an appointment, but the nice guy on the phone said I couldn't be seen until August 12, and that seemed way too long away to both of us. I was really disappointed.
But I wasn't giving up! I called back later to give the guy my phone number in case of ANY cancellations. He took it down, but then I also asked if I could leave a message on the doctor's voicemail, as many of the doctor's I'd been working with were astonished by my young age and tried their hardest to get me in. Hey, it was worth a shot! He said OK and I left a message. In case that wasn't going to work, though, I called another general surgeon in Fort Collins whom someone recommended. I got an appointment with for Friday morning.
Later in the day, I got a call from Dr. S.'s medical assistant. It just so happened that Dr. S. had a cancellation for the very next day, and could I take the appointment? YES! Finally some luck had come my way!
As far as the rest of my week looks, I have an appointment with the plastic surgeon Wednesday, a breast MRI on Thursday, an appointment with another surgeon Friday morning and finally, an appointment with my to-be oncologist, Dr. M. on Friday afternoon. I'm really looking forward to speaking with the oncologist...
My parents and my brother had both heard really good things about a surgeon in Denver, Dr. S. She was the surgeon my mom's gynecologist went to when she was diagnosed with breast cancer. I called to get an appointment, but the nice guy on the phone said I couldn't be seen until August 12, and that seemed way too long away to both of us. I was really disappointed.
But I wasn't giving up! I called back later to give the guy my phone number in case of ANY cancellations. He took it down, but then I also asked if I could leave a message on the doctor's voicemail, as many of the doctor's I'd been working with were astonished by my young age and tried their hardest to get me in. Hey, it was worth a shot! He said OK and I left a message. In case that wasn't going to work, though, I called another general surgeon in Fort Collins whom someone recommended. I got an appointment with for Friday morning.
Later in the day, I got a call from Dr. S.'s medical assistant. It just so happened that Dr. S. had a cancellation for the very next day, and could I take the appointment? YES! Finally some luck had come my way!
As far as the rest of my week looks, I have an appointment with the plastic surgeon Wednesday, a breast MRI on Thursday, an appointment with another surgeon Friday morning and finally, an appointment with my to-be oncologist, Dr. M. on Friday afternoon. I'm really looking forward to speaking with the oncologist...
Friday, July 18, 2008
Meeting with a General Surgeon
Today I had a meeting with Dr. D., a general surgeon who supposedly does a bunch of breast cancer surgeries in town. He was a really nice doctor, and very tactful as far as talking to me about my plans for a family before my parents came in. I appreciated that.
Dr. D. gave us a rundown about breast cancer in general, since he was the first doctor we had seen since my diagnosis. He also described the two typical surgical options a breast cancer patient is faced with: lumpectomy vs. mastectomy. With a lumpectomy, just the cancerous tumor and a margin of healthy tissue around it are removed to make sure all the cancer is out. Afterwards, the patient has to go through about 6 weeks of radiation, 5 days a week, to zap any cancer cells left behind. With a mastectomy, all the breast tissue, including the nipple (!!!!) is removed. This is clearly a more invasive surgery with a longer recovery time, and is sometimes (but apparently not always, which I had not considered) followed by reconstructive surgery. When the patient wants to try to stay around the same size of her original breasts, the reconstruction can take place at the same time as the mastectomy and sometimes no further surgery is needed. However, if she wants to go bigger, tissue expanders are placed behind the muscle to make space for an implant. The expanders have a place where a needle can be inserted through the skin and saline put in to make them... expand. About four months later, the plastic surgeon puts the implants in, and apparently that surgery isn't too bad. And about four months after that, the plastic surgeon can make you some fake nipples and have a cosmetic tattooist tattoo on some color. The fake nipples look really real, from what I've seen, but they won't have the nice special feeling the real ones have.
He implied that he was pretty certain my cancer was genetic, due to its early onset. This could be determined by a genetic test that can show mutations to the BRCA1 or BRCA2 genes, two of the known genes that cause breast cancer. If I were to be positive for a genetic cancer, then Dr. D. would highly recommend a bilateral mastectomy (both boobs) to significantly reduce my risk of recurrence. He also mentioned that he tried to perform the surgery within 3 weeks of diagnosis, which seemed soon. Both a good thing and a bad thing-- I want to get going on all this, but I really need some time to learn more and make the right decision.
That was definitely NOT what I wanted to hear. At the age of 25, you don't want to think about losing your breasts for the rest of your life. It's such a drastic measure, and it's a lot to have sprung upon you when you've only been diagnosed for two days. I don't like that option. I'd much prefer a lumpectomy, but if that's not safe for my health, then I know what I'll have to do. It'll just take a lot of getting used to.
The other thing he told me that I didn't like was that I was almost definitely going to have to have chemo. When the nurse told me the wrong cancer, there maybe could've been no chemo. But there will probably be chemo. :(
Dr. D. had one of his assistants make me an appointment with Dr. G., a plastic surgeon in Greeley whom he strongly recommended. My appointment was for Wednesday the next week.
I left the appointment feeling a little upset by my options, and definitely wanting another opinion.
Dr. D. gave us a rundown about breast cancer in general, since he was the first doctor we had seen since my diagnosis. He also described the two typical surgical options a breast cancer patient is faced with: lumpectomy vs. mastectomy. With a lumpectomy, just the cancerous tumor and a margin of healthy tissue around it are removed to make sure all the cancer is out. Afterwards, the patient has to go through about 6 weeks of radiation, 5 days a week, to zap any cancer cells left behind. With a mastectomy, all the breast tissue, including the nipple (!!!!) is removed. This is clearly a more invasive surgery with a longer recovery time, and is sometimes (but apparently not always, which I had not considered) followed by reconstructive surgery. When the patient wants to try to stay around the same size of her original breasts, the reconstruction can take place at the same time as the mastectomy and sometimes no further surgery is needed. However, if she wants to go bigger, tissue expanders are placed behind the muscle to make space for an implant. The expanders have a place where a needle can be inserted through the skin and saline put in to make them... expand. About four months later, the plastic surgeon puts the implants in, and apparently that surgery isn't too bad. And about four months after that, the plastic surgeon can make you some fake nipples and have a cosmetic tattooist tattoo on some color. The fake nipples look really real, from what I've seen, but they won't have the nice special feeling the real ones have.
He implied that he was pretty certain my cancer was genetic, due to its early onset. This could be determined by a genetic test that can show mutations to the BRCA1 or BRCA2 genes, two of the known genes that cause breast cancer. If I were to be positive for a genetic cancer, then Dr. D. would highly recommend a bilateral mastectomy (both boobs) to significantly reduce my risk of recurrence. He also mentioned that he tried to perform the surgery within 3 weeks of diagnosis, which seemed soon. Both a good thing and a bad thing-- I want to get going on all this, but I really need some time to learn more and make the right decision.
That was definitely NOT what I wanted to hear. At the age of 25, you don't want to think about losing your breasts for the rest of your life. It's such a drastic measure, and it's a lot to have sprung upon you when you've only been diagnosed for two days. I don't like that option. I'd much prefer a lumpectomy, but if that's not safe for my health, then I know what I'll have to do. It'll just take a lot of getting used to.
The other thing he told me that I didn't like was that I was almost definitely going to have to have chemo. When the nurse told me the wrong cancer, there maybe could've been no chemo. But there will probably be chemo. :(
Dr. D. had one of his assistants make me an appointment with Dr. G., a plastic surgeon in Greeley whom he strongly recommended. My appointment was for Wednesday the next week.
I left the appointment feeling a little upset by my options, and definitely wanting another opinion.
Wednesday, July 16, 2008
My Date Which Will Live in Infamy
It's actually September 20 today, but I recently realized that I somehow neglected to write a post about the day I was diagnosed. I have no idea how this happened... it's sorta major! So I'll try to remember what happened...
I remember my arm was still really sore from my biopsy. I went over to my parents' house to hang out and watch episodes of the Gilmore Girls on DVD with my mom and sister. The results from my biopsy were supposed to be ready maybe late Thursday, but probably Friday. So when my cell phone rang and the Women's Clinic's phone number showed up, I was a little surprised and nervous. I answered and left the room, went upstairs and talked with a nurse.
She told me that my results were in and they were positive for Intraductal Carcinoma. She wasn't particularly comforting or apologetic or anything, which sort of surprised me, as I'm 25 and the diagnosis is pretty serious and life-changing. She told me she'd set up an appointment for me to meet with a surgeon and call back. I was shocked, but I didn't cry right then. I was just trying to keep it together so I could remember what she said and know what to do next.
After we hung up, I went downstairs and told my mom and sister the news. I couldn't help but cry, even though we sort of had a feeling this was going to happen. I didn't cry much or for long, but all three of us were pretty upset and scared I think.
I remember calling my dad pretty soon after that, and I think I must've called some other people. Informing people was a process that lasted throughout the day, and I didn't tell everyone right away. A weird feeling, for sure-- it was like I was telling people something I knew was true, but still somehow didn't believe. I still have trouble believing it even now, with a port in my arm, with very little hair on my head, with chemo drugs coursing through my veins.
I also remember googling Intraductal Carcinoma and feeling somewhat relieved. Here's a definition from the National Cancer Institute:
I remember my arm was still really sore from my biopsy. I went over to my parents' house to hang out and watch episodes of the Gilmore Girls on DVD with my mom and sister. The results from my biopsy were supposed to be ready maybe late Thursday, but probably Friday. So when my cell phone rang and the Women's Clinic's phone number showed up, I was a little surprised and nervous. I answered and left the room, went upstairs and talked with a nurse.
She told me that my results were in and they were positive for Intraductal Carcinoma. She wasn't particularly comforting or apologetic or anything, which sort of surprised me, as I'm 25 and the diagnosis is pretty serious and life-changing. She told me she'd set up an appointment for me to meet with a surgeon and call back. I was shocked, but I didn't cry right then. I was just trying to keep it together so I could remember what she said and know what to do next.
After we hung up, I went downstairs and told my mom and sister the news. I couldn't help but cry, even though we sort of had a feeling this was going to happen. I didn't cry much or for long, but all three of us were pretty upset and scared I think.
I remember calling my dad pretty soon after that, and I think I must've called some other people. Informing people was a process that lasted throughout the day, and I didn't tell everyone right away. A weird feeling, for sure-- it was like I was telling people something I knew was true, but still somehow didn't believe. I still have trouble believing it even now, with a port in my arm, with very little hair on my head, with chemo drugs coursing through my veins.
I also remember googling Intraductal Carcinoma and feeling somewhat relieved. Here's a definition from the National Cancer Institute:
"intraductal
carcinoma (IN-truh-DUK-tul KAR-sih-NOH-muh)
A noninvasive condition in which
abnormal cells are found in the lining of a
breast duct. The abnormal cells
have not spread outside the duct to other
tissues in the breast. In some
cases, intraductal
carcinoma may become invasive
cancer and spread to other tissues, although
it is not known at this time how to
predict which lesions will become
invasive. Also called ductal carcinoma in situ
and DCIS."
In the end, the nurse on the phone told me the wrong cancer condition. Later on (maybe a day or two), my dad asked a doctor friend of his to recommend a surgeon, or moreover to see if his friend would recommend the same surgeon the nurse made me an appointment with. His friend was able to read my pathology report which said I had Infiltrating Ductal Carcinoma, which is very different, and means that the cancer cells have spread outside of the breast duct, and often times into lymph nodes. This came as terrible news, another terrible shock. His friend told him, and then my dad told my mom and me that it meant I would have to have chemo and probably have to have a bilateral mastectomy. I cried again when I heard this news.
What a crappy day. I will never forget this date.
Tuesday, July 15, 2008
Biopsy Fun
I came home on Monday for my biopsy. My appointment was early; I think it was at 8:30. My sister, mom and dad met me for breakfast, and then mom and dad drove me to my biospy appointment. I could have taken some anxiety pills, but chose to be mentally present for this experience. Might choose differently next time, but there better not be a next time!!!
I had a different doctor for my biopsy, Dr. P. She was really nice and comforting, and seemed very confident. I told her I didn't know if she could say, but how worried should I be? She said, "I can tell you this, my level of concern is very high." And she also said something like, "I'm pretty sure you'll be having these things out." So that wasn't good news, but at least she was honest and I could gauge what was coming a little. But she, the nurse, my mom, and I all agreed that it could still be nothing. Though honestly, nobody in that room really believed that my masses were nothing.
For the biopsy, they got me all comfy on a bed in a dim room. The nurses prepped me by cleaning the area, putting drapes on me and preparing the ultrasound machine which would guide the biopsy needle to my masses. Then the doctor came and numbed the area with litocaine. That hurt because she was sticking a needle relatively deeply into my breast. Then the doctor makes a small incision. The biopsy needle, which is hollow with a second needle inside, is guided by ultrasound into the tissue and then the mass. Next the inner needle shaves a sample through the core of the mass. A vaccuum sucks the sample out and into a little cup filled with some sort of fluid. About 3-6 samples are taken, and in my case the whole thing was performed twice because I had two masses. The sample is sent to Pathology and results are typically available in about 2 business days. The nurse then cleaned me up and stuck steri-strips (essentially tape) onto my wounds because they weren't big enough for stitches. She helped me redress and then I was on my way. I got the award for bravest and best patient, or at so they told me.
The litocaine worked well the first time, and I couldn't feel the incision. All I could feel was the pressure of her pushing the biopsy needle into my breast tissue, which was pretty intense. Being 25, my breast tissue is pretty dense and firm, so imagine trying to stick a wooden skewer through an 8-inch thick raw sirloin steak. She really had to work to get that thing in. I was certainly awake and aware of that, plus I could see the needles entering my tissue on the screen. FREAKY! The second biopsy was more painful. It felt like the needle was going past the numbed area. But on a pain scale, I'd put it at probably a 4 or 5 out of 10.
After my biopsy, I went to my parents' house to relax and recover. My sister and mom had gone out to get me all sorts of presents while I was in WP, and that was really nice, generous and thoughtful. But in the end, I just sorta slept and took it easy. After I felt better, I went home to my house on FTC and slept just fine. During this whole ordeal, I stayed up scared and crying only once, and now I sleep really really well. I think I'm the only one who can!
I had a different doctor for my biopsy, Dr. P. She was really nice and comforting, and seemed very confident. I told her I didn't know if she could say, but how worried should I be? She said, "I can tell you this, my level of concern is very high." And she also said something like, "I'm pretty sure you'll be having these things out." So that wasn't good news, but at least she was honest and I could gauge what was coming a little. But she, the nurse, my mom, and I all agreed that it could still be nothing. Though honestly, nobody in that room really believed that my masses were nothing.
For the biopsy, they got me all comfy on a bed in a dim room. The nurses prepped me by cleaning the area, putting drapes on me and preparing the ultrasound machine which would guide the biopsy needle to my masses. Then the doctor came and numbed the area with litocaine. That hurt because she was sticking a needle relatively deeply into my breast. Then the doctor makes a small incision. The biopsy needle, which is hollow with a second needle inside, is guided by ultrasound into the tissue and then the mass. Next the inner needle shaves a sample through the core of the mass. A vaccuum sucks the sample out and into a little cup filled with some sort of fluid. About 3-6 samples are taken, and in my case the whole thing was performed twice because I had two masses. The sample is sent to Pathology and results are typically available in about 2 business days. The nurse then cleaned me up and stuck steri-strips (essentially tape) onto my wounds because they weren't big enough for stitches. She helped me redress and then I was on my way. I got the award for bravest and best patient, or at so they told me.
The litocaine worked well the first time, and I couldn't feel the incision. All I could feel was the pressure of her pushing the biopsy needle into my breast tissue, which was pretty intense. Being 25, my breast tissue is pretty dense and firm, so imagine trying to stick a wooden skewer through an 8-inch thick raw sirloin steak. She really had to work to get that thing in. I was certainly awake and aware of that, plus I could see the needles entering my tissue on the screen. FREAKY! The second biopsy was more painful. It felt like the needle was going past the numbed area. But on a pain scale, I'd put it at probably a 4 or 5 out of 10.
After my biopsy, I went to my parents' house to relax and recover. My sister and mom had gone out to get me all sorts of presents while I was in WP, and that was really nice, generous and thoughtful. But in the end, I just sorta slept and took it easy. After I felt better, I went home to my house on FTC and slept just fine. During this whole ordeal, I stayed up scared and crying only once, and now I sleep really really well. I think I'm the only one who can!
Thursday, July 10, 2008
Ultrasounds, Mammograms, and One Ruined Birthday
Happy Birthday, Mom!
My mammogram/ultrasound appointment was scheduled for 1:00 p.m. I was hoping that it wouldn't interfere too much with my mom's birthday, and maybe we could go do something fun after. We had appointments for manicures at 4:30, which gave us ample time because my imaging appointment was supposed to take 2-3 hours. Mom wanted to come with me, so she spent a good few hours waiting in a chair, patiently. What a trooper!
I really thought it was going to take maybe an hour to an hour and a half, that they would tell me, yes, it's a fluid-filled cyst, and if it doesn't go away, please see us and we'll drain it. I was wrong.
To start off, I had to change into a gown, putting it on with the opening on the front. I waited for the ultrasound technician to call me in, and when she did, we went into a dark room with a little bed. Mom had to stay out in the waiting area. She put a little warmed gel (nice feature!) on me and her device, and started navigating my right breast. She would make little computer clicks to take pictures, and the pictures were sent to the radiologist. It's a painless procedure, and the only bad part is that the gel is sorta yucky when it gets on your gown. (Unless you're very timid, and then maybe exposing your breast to a stranger is awkward. In a medical setting, this has never been a problem for me. Well, there was one time when I was studying in France, and I went to get some antiobiotics from the doctor. The doctor had a student with her, and asked if she could do a breast exam to show the student. It was fine, but totally unrelated and unnecessary to the objective of the appointment scheduled. Frenchies.)
The images were sent to the radiologist so she could read them. The technician sent me out to wait with my mom until further notice...
And then another technician summoned me for a mammogram. She told me that the radiologist wanted to see more, so I would have to have my first mammogram. I left Mom in the the waiting area and followed the technician into a different room with a large machine.
For my friends who haven't yet had the pleasure: I always thought one would be sitting for a mammogram, but in the end you have to stand. The machine must have been designed by a man becaue it's really uncomfortable, and you have to stand in really awkard positions because there is no space for your head. Let alone the fact that your breast has to be squashed by two clear plastic plates, with the technician wrangling your breast into the perfect position (wrangling may have been necessary because mine just aren't that big or droopy). So you're standing there, and the technician puts your boob in the right place, then steps on a pedal and really squashes it, then runs to a little booth to take the picture, and right before she tells you to hold your breath and not move an inch. Fun.
Note: I found this whole experience, though slightly painful and generally uncomfortable, to be kind of funny. I mean, you should try to look down when you have one done, if you can. You see your own breast, smooshed like a pancake between transparent plastic plates. And the technician puts these little tape-like stickers on your nipples with a small metal bead to indicate where your nipples are. C'mon, that's funny.
The technician sent my images to the radiologist, and I went to sit with Mom some more to read insipid celebrity magazines. A few minutes later, the same technician came back and said the radiologist wanted to see a closer view through mammography. Since I thought it was just going to be an ultrasound, I started to get a little alarmed. It couldn't be a good sign that this invisible radiologist kept wanting to see more, and no one seemed to know exactly what was really going on.
Anyway, my right breast had to go through the whole mammography ordeal again, and it hurt a bit more the second time. It's like a giant boob pinch, so it's not like a lingering pain, just a quick discomfort.
The technician sent the images to the radiologist (does this sound like "Groundhog's Day" to anyone else?) and after more time waiting, the first technician (the ultrasound one) took us back to the dark little room again. This time the radiologist wanted to see more, and she wanted to see it in "real time," meaning she would be performing the ultrasound. She took more pictures and pushed harder with her "magic wand" than the technician. Her face was very serious and concerned, and as I was already alarmed, that increased my anxiety that we were not leaving with good news. The radiologist, Dr. F., left the room after asking the technician to take some images of my entire right breast.
After that, the technician left (I think) and Dr. F. came back to talk to us (FINALLY!). Her lips were pulled taut and her expression was pretty serious. She showed us my images, which didn't mean much to me, but she also told us that there appeared to be two masses, and that they were referred to as "suspicious" (as if they were probably going to rob a 7-11?). She said she was concerned, and that I would have to have a biopsy as soon as possible.
I let out a few tears because 1) I'm 25 and these are just supposed to be cysts!, 2) I'm ruining my mother's birthday, though she doesn't care, and 3) I have no idea how to plan my life (working, etc.) because new appointments keep popping up and additional appointments hinge on the unforeseen outcomes of existing appointments.
A nurse talked to us to explain the biopsy procedure and comfort us. I was trying to hold it together, but none of these people were scared to use the "C-word" (that would be cancer, you pervs...) and I found that disconcerting. The more people apologized, the more serious it seemed. And the nurse let us know that Dr. F. told her that she was "very worried." Not good. I scheduled an appointment for a Core Needle Biopsy for Tuesday, July 15.
WHAT'S GOING ON? Seriously, this is NOT my life.
Mom and I still made our nail appointments, but we were just going through the actions because I didn't want to cancel with so little notice. And I wanted to pretend we could have a normal day. Didn't happen though. We told my dad and sister, and I called some people to let them know what was going on. We tried to enjoy a BBQ, but everyone's minds were pretty distracted. I went back to Winter Park to work, knowing I'd only be there for the weekend since I had an early biopsy appointment. And I knew I'd have some explaining to do at work.
According to the Homeland Security Advisory System, I would say we were at "Elevated (yellow): significant risk."
My mammogram/ultrasound appointment was scheduled for 1:00 p.m. I was hoping that it wouldn't interfere too much with my mom's birthday, and maybe we could go do something fun after. We had appointments for manicures at 4:30, which gave us ample time because my imaging appointment was supposed to take 2-3 hours. Mom wanted to come with me, so she spent a good few hours waiting in a chair, patiently. What a trooper!
I really thought it was going to take maybe an hour to an hour and a half, that they would tell me, yes, it's a fluid-filled cyst, and if it doesn't go away, please see us and we'll drain it. I was wrong.
To start off, I had to change into a gown, putting it on with the opening on the front. I waited for the ultrasound technician to call me in, and when she did, we went into a dark room with a little bed. Mom had to stay out in the waiting area. She put a little warmed gel (nice feature!) on me and her device, and started navigating my right breast. She would make little computer clicks to take pictures, and the pictures were sent to the radiologist. It's a painless procedure, and the only bad part is that the gel is sorta yucky when it gets on your gown. (Unless you're very timid, and then maybe exposing your breast to a stranger is awkward. In a medical setting, this has never been a problem for me. Well, there was one time when I was studying in France, and I went to get some antiobiotics from the doctor. The doctor had a student with her, and asked if she could do a breast exam to show the student. It was fine, but totally unrelated and unnecessary to the objective of the appointment scheduled. Frenchies.)
The images were sent to the radiologist so she could read them. The technician sent me out to wait with my mom until further notice...
And then another technician summoned me for a mammogram. She told me that the radiologist wanted to see more, so I would have to have my first mammogram. I left Mom in the the waiting area and followed the technician into a different room with a large machine.
For my friends who haven't yet had the pleasure: I always thought one would be sitting for a mammogram, but in the end you have to stand. The machine must have been designed by a man becaue it's really uncomfortable, and you have to stand in really awkard positions because there is no space for your head. Let alone the fact that your breast has to be squashed by two clear plastic plates, with the technician wrangling your breast into the perfect position (wrangling may have been necessary because mine just aren't that big or droopy). So you're standing there, and the technician puts your boob in the right place, then steps on a pedal and really squashes it, then runs to a little booth to take the picture, and right before she tells you to hold your breath and not move an inch. Fun.
Note: I found this whole experience, though slightly painful and generally uncomfortable, to be kind of funny. I mean, you should try to look down when you have one done, if you can. You see your own breast, smooshed like a pancake between transparent plastic plates. And the technician puts these little tape-like stickers on your nipples with a small metal bead to indicate where your nipples are. C'mon, that's funny.
The technician sent my images to the radiologist, and I went to sit with Mom some more to read insipid celebrity magazines. A few minutes later, the same technician came back and said the radiologist wanted to see a closer view through mammography. Since I thought it was just going to be an ultrasound, I started to get a little alarmed. It couldn't be a good sign that this invisible radiologist kept wanting to see more, and no one seemed to know exactly what was really going on.
Anyway, my right breast had to go through the whole mammography ordeal again, and it hurt a bit more the second time. It's like a giant boob pinch, so it's not like a lingering pain, just a quick discomfort.
The technician sent the images to the radiologist (does this sound like "Groundhog's Day" to anyone else?) and after more time waiting, the first technician (the ultrasound one) took us back to the dark little room again. This time the radiologist wanted to see more, and she wanted to see it in "real time," meaning she would be performing the ultrasound. She took more pictures and pushed harder with her "magic wand" than the technician. Her face was very serious and concerned, and as I was already alarmed, that increased my anxiety that we were not leaving with good news. The radiologist, Dr. F., left the room after asking the technician to take some images of my entire right breast.
After that, the technician left (I think) and Dr. F. came back to talk to us (FINALLY!). Her lips were pulled taut and her expression was pretty serious. She showed us my images, which didn't mean much to me, but she also told us that there appeared to be two masses, and that they were referred to as "suspicious" (as if they were probably going to rob a 7-11?). She said she was concerned, and that I would have to have a biopsy as soon as possible.
I let out a few tears because 1) I'm 25 and these are just supposed to be cysts!, 2) I'm ruining my mother's birthday, though she doesn't care, and 3) I have no idea how to plan my life (working, etc.) because new appointments keep popping up and additional appointments hinge on the unforeseen outcomes of existing appointments.
A nurse talked to us to explain the biopsy procedure and comfort us. I was trying to hold it together, but none of these people were scared to use the "C-word" (that would be cancer, you pervs...) and I found that disconcerting. The more people apologized, the more serious it seemed. And the nurse let us know that Dr. F. told her that she was "very worried." Not good. I scheduled an appointment for a Core Needle Biopsy for Tuesday, July 15.
WHAT'S GOING ON? Seriously, this is NOT my life.
Mom and I still made our nail appointments, but we were just going through the actions because I didn't want to cancel with so little notice. And I wanted to pretend we could have a normal day. Didn't happen though. We told my dad and sister, and I called some people to let them know what was going on. We tried to enjoy a BBQ, but everyone's minds were pretty distracted. I went back to Winter Park to work, knowing I'd only be there for the weekend since I had an early biopsy appointment. And I knew I'd have some explaining to do at work.
According to the Homeland Security Advisory System, I would say we were at "Elevated (yellow): significant risk."
Wednesday, July 9, 2008
98%
Today I went to the doctor's office to have my lump checked out. It was a short appointment and my Physician's Assistant did a breast exam. She told me that she was 98% certain that my lump was just a fluid-filled cyst, and she "wasn't worried about it from a cancer standpoint." That was a real relief to hear after all the late nights worrying in the dark in bed, alone. She did take the situation seriously, however, and wrote an order for a mammogram and ultrasound. Because breast tissue is considerably more dense in younger women, a mammogram sometimes doesn't produce good images of what's going on, so an ultrasound is a better option.
I asked whether this was the sort of appointment that took a long time to get, and she unfortunately said it would probably be about two weeks before I could get my mammogram and ultrasound. I was disappointed about that because it meant more night of worrying,. But in the end, I got an appointment for the next day. How nice! Too bad it was my mom's birthday.
Given that it was mom's birthday, I knew I needed to tell my parents what was up. Plus, I wanted them to know, and since my PA was 98% sure it was nothing, now seemed like a good time. I was right; they said they would have wanted to know earlier, regardless of vacation. Oh well, I didn't want to ruin their time away with worries about their little girl. And since I really thought my lump was nothing, a told a couple more friends about my scare. Little did I know, this just made for more people to call and give bad news to.
I asked whether this was the sort of appointment that took a long time to get, and she unfortunately said it would probably be about two weeks before I could get my mammogram and ultrasound. I was disappointed about that because it meant more night of worrying,. But in the end, I got an appointment for the next day. How nice! Too bad it was my mom's birthday.
Given that it was mom's birthday, I knew I needed to tell my parents what was up. Plus, I wanted them to know, and since my PA was 98% sure it was nothing, now seemed like a good time. I was right; they said they would have wanted to know earlier, regardless of vacation. Oh well, I didn't want to ruin their time away with worries about their little girl. And since I really thought my lump was nothing, a told a couple more friends about my scare. Little did I know, this just made for more people to call and give bad news to.
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