So when I started this blog in 2011, it was a place for me to write down my fears, get out my frustrations, to help me deal with everything I was facing and to chronicle every step of the "cancer journey'". I stopped writing on here last year because, well life was good. No need to chronicle the every day activities of a normal Mom to two little ones. Well, the other day I had an appointment with my oncologist, still good 3 and a half years in remission, but I do have another decision to make. The last major medical decision I had to make was saline vs silicone vs gel implants. I hate when I feel confused and unsure of what to do. I hate when my mind is at a crossroads and I have absolutely no clue which "road to take".
There continue to be amazing advances in medicine, especially with cancer and how to treat the disease. There constantly are studies being done on the treatment of breast cancer. The newest one to come to light (or at least be brought to my attention, because I fall in the criteria) is to put young women in menopause who have/had ER positive breast cancer. Now, let me recap, it has been awhile since I have written on here, I was diagnosed at the age of 31 with stage III locally advanced estrogen positive, HER2 positive, infiltrating ductal breast cancer. I have undergone 6 rounds of chemotherapy, radiation to the right side of my chest, a bilateral mastectomy with reconstruction and now I take a pill everyday for 10 years. I was (and still am) comfortable with this treatment option. However, like I said, medical advances are made everyday. The new "thing" to do, is women who were under 35 at age of diagnosis, whose cancer was aggressive enough to require chemotherapy and who are premenopausal after chemotherapy would be to shut their ovaries down and put them on an aromatase inhibitor. Now, I stated I take a pill everyday for 10 years. I take a pill called Tamoxifen. Its an evil little pill! Since my cancer was estrogen positive (meaning it needs estrogen to grow) the goal would be to block the production of estrogen in my body. Tamoxifen, as I have been explained to, acts like a bonding agent and blocks estrogen. I was told to visualize the cells in my body being little key holes and estrogen being the key to fit all the holes. Tamoxifen goes in and blocks the keyholes so the keys (estrogen) cannot fit and cause problems. I have been on this pill for 3.5 years, I have experienced and lived through the worst of the side effects, so far anyway. I have gained roughly 25 pounds, I have hot flashes, I am moody, etc.. Nothing that is too much to handle, the way I look at it, I can handle all those pesky things if it means keeping cancer at bay. There is also effects of being on this medicine for a lengthy time, the increased risk of uterine or endometrial cancer, blood clots, stroke, however the chances of those incidents occurring are small (I think). Well, now that this new ovarian suppression and switching to a new pill has come to light, I don't know what the right choice for me is.
If I decide to go with ovarian suppression, I am not willing to get a shot every three months to put me into menopause (I don't like taking medicine, I tolerate Tamoxifen because I have no choice). The route for me would be to have my ovaries removed, since I won't need the other parts, I would actually end up getting a total hysterectomy. Another major surgery. I would also be thrown directly into menopause the moment I wake up from surgery. So, instead of my body naturally and gradually going into menopause (like most women) I was told it would like hitting a brick wall at 60mph. I would have all the effects of menopause, and I would have to start all over on a new pill for 5 years. Doesn't sound bad, right? Until the kicker, the potential side effects of "throwing" me into menopause would be osteoporosis, heart disease, bone pain, diminished quality of life. Joy! I understand women get hysterectomies all the time and they do fine, but they get hysterectomies because of gynecological reasons, so the hysterectomy is beneficial to them and potentially help their quality of life. I however, do not need one for any reason other then to shut my ovaries down and shock the hell out of body again (it can't really be worse than chemo, right). I also understand these are just "potential" side effects, but the thing with me is, I read every warning label, I research everything, I am that person that NEEDS to know what could happen. Even if 1 person out of ten thousand had a simple side effect/reaction I want to know. I like to be prepared for everything, no surprises.
While the study does show a decreased chance of cancer recurrence after ovarian suppression, it doesn't show an overall survival advantage. Basically, the chances of cancer coming back drop (not significantly but it does drop) and the chances of dying from heart disease or some other complication increase (at least that's how I am understanding it). Unfortunately, tamoxifen used to only be taken for 5 years, a new study proved that extending that to 10 decreased cancer recurrence rates. Since the 10 year Tamoxifen trial and this new SOFT trial are fairly new, there is no statistical evidence stating which one is more beneficial. See why I am confused?
I am the type of person who needs black or white, right choice or wrong choice. I am an over thinker, over analyzer, I have been researching this new information, I have made a pros and cons list, I have been consumed with "what if". I felt the most confident when my doctors told me, you WILL get chemo, you WILL get a mastectomy, you WILL get radiation, you WILL take this pill. Being told, this is your call, I can't seem to figure out what the right answer for me is. This isn't a simple question in my mind. Do I stay the course I have been on for 3.5 years (if it isn't broke why fix it) or do I switch to the new standard of care option (advances in medicine are made for a reason). The hardest thing for me is the unknown (which has and will continue to be the hardest part of this journey). My doctor did ask what my goals were, that is simple, to see Gabrielle and Cole grow up, to not ever have to go through that "journey"again, to grow old with Ryan, the same goal every wife/mother has. I was told, if my goal is to continue to be as aggressive as possible (I made that choice the day I was diagnosed) then surgery and switching pills is the best choice from a cancer stand point. Not the best choice from a now healthy 35 year old stand point though. I did tell myself and my doctors from day 1, that I wanted to do and take whatever was going to make my recurrence rate the lowest it could be, but at the same time, I don't want to decrease my quality of life, I don't want to feel like a 70 year old stuck in a 35 year olds body. Don't get me wrong, every day that goes by that cancer does not recur, my chances of it recurring drop. Each year that I go without recurring, I feel more and more confident this is never coming back. If I am 4 years out and doing fine, do I really want to "alter" myself yet again? I am not a big fan of change, I do best in situations where I can plan my life, where I can plan and be prepared for outcomes ( I am so "Type A" it scares me) I don't like the "well......." feeling.
I had such high hopes that when I got the port removed in April 2012, the big steps would be behind me. In the end I am confident I will do what is right for ME. I am confident I will make the decision that is best for my family. I just need to figure out what the hell that decision is and how I make it.
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