The Countdown Begins...

I will apologize in advance if this post gets long, but I have a LOT to update everyone on!

Today Derek and I met with my oncologist. I have once again lucked out in the doctor lottery because she is fabulous! She spent over an hour with us going over EVERYTHING, and she was very patient with all of my questions. I'll just start from the beginning of my notes.

I am now incredibly glad that I decided to have a bilateral mastectomy instead of a lumpectomy (which would have required chemo and radiation) or just a single mastectomy. She told me that the younger you are when you are diagnosed the higher the risk of a cancer developing in the opposite breast. This is also true of estrogen receptor negative tumors (which mine is). My general risk of recurrence if I were to only have the surgery is 30-35% (since I am stage 1 it is probably more like 25-30%). Adding the chemotherapy is going to decrease that risk to about 15% (again, since I am stage 1 it is more like 10-12%). As much as I hate the thought of chemo, I like those odds.

My initial BRCA 1 and 2 genetic tests were negative so I thought I was in the clear, but apparently not. Without going into all of the genetics, the standard BRCA testing only tests for a mutation using one method, and this method will detect 90% of the mutations. There is a separate method of testing that will pick up the other 10%, but it is not routinely done unless requested, and it is usually not covered by insurance. The out of pocket cost for this test is usually around $700. There is also a 1-2% chance that the cancer could have been caused by something called Li-Fraumeni syndrome, which I have never heard of prior to today. That test usually is covered by insurance, so I will be meeting with a genetic counselor to discuss all of this further and will have that test first. If that test is negative we will have to fork over the money for the other test. It is important to know if I have the BRCA mutation in particular, because it will also increase my risk of developing ovarian cancer (Li-Fraumeni syndrome does not). If I am in fact positive for the mutation then I would need to consider having a prophylactic oophorectomy (removal of my ovaries) before the age of 40. 

Now onto the important topic, the actual chemo treatments...

I have two options for treatment. Option #1 involves using two medications every other week for 4 cycles, then 2 different medications every week for 12 cycles. The first two medications would cause moderate to high levels of nausea and vomiting, but after that it shouldn't be much of an issue. This combination of drugs carries a slight risk of heart damage and development of a secondary leukemia.

Option #2 involves using a set of three medications (different from those in option #1) every 3 weeks. The nausea is usually a little less than option #1, but would last the entire time. Total treatment would be a few weeks less, and the risk of developing heart damage and leukemia are still present, but slightly lower.

I will lose my hair with either option.

Being able to work through my treatments is very important to me, so I struggled a bit with this decision. She told me that recurrence rates are very similar so we don't need to take those into account. She also said that if it was her she would choose option #2, but she wouldn't work during treatment. She also has three young children at home which she said would factor into her decision heavily. One of the medications I would need in option #1 is called Adriamycin, and it's nickname is the "red devil". I have read terrible things about this drug and really wanted to avoid it if I could.

I have decided on option #2, which is known as TCH  (Taxotere, Carboplatin and Herceptin). The Herceptin is the medication I will continue every three weeks for a year (instead of every week thank goodness). That medication is not really considered chemotherapy, but more of a biologic therapy. It won't really be contributing much to the side effects.

And now onto the side effects. The main ones she listed were mild to moderate nausea, constipation, diarrhea, hair loss, black nails, and of course the heart damage and leukemia. The other side effects that I could potentially develop (based on the prescribing information) include changes in taste, fatigue, muscle/bone/joint pain, increased eye tearing, mouth sores, changes in vision, weight loss, decreased appetite, stomach pain, and numbness/tingling in my fingers. Doesn't that all sound lovely? I have also read that many people actually gain weight during chemo. Another common side effects is something called "chemo brain" which has me worried. It means that my short term memory will be fried. I am already forgetting things and making multiple lists a day because of the stress, so I am terrified of that getting worse.

The good news is that they do the chemotherapy right at the office instead of the infusion center at the hospital. She gave me a tour before taking me to the lab to have my baseline blood counts and chemistry panel drawn. From now on I will fortunately be able to have them drawn at my clinic and faxed to her. I have to have a baseline echocardiogram (an ultrasound of my heart) on Tuesday morning and will need that repeated every three months during treatment.

I had a feeling this was coming, but she told me that I have to stop my birth control pill. Even though my tumor was negative for both estrogen and progesterone receptors (the two hormones used in most birth control pills), she still doesn't want me on pills. She would like me to use an IUD (intrauterine device) instead. Luckily this is my area of expertise. Whereas most women would be needing to make a consult appointment with someone like me and then coming back for another appointment to have the IUD inserted, I can have it done at any time in my clinic. While I am very comfortable inserting IUD's, I am not so thrilled about being on the other end of the procedure. I just keep telling myself to stop being such a baby...I mean I did just recover from a mastectomy! Alas, with the help of some good medications, I'll be having it inserted on Monday.

My first chemo session is now scheduled, and will be next Friday, April 13 (yes I know). Unfortunately my second treatment will be on my 29th birthday. I won't lie...that one has me depressed. I just keep telling myself that I have to sacrifice one birthday in order to have a lot more.

This has definitely been a whirlwind of a day, and I have a feeling that will continue for the next week and a half. At this point I really just want to say "bring it" and get this s**t over with!

I'll leave you with another one of my favorite quotes right now...

"You never know how strong you are until being strong is the only choice you have" -Unknown