I have made my decision.....

"Sometimes the questions are complicated and the answers are simple"-Dr. Seuss

Oh, how powerful our brains are! One of my biggest flaws has been (and unfortunately always will be) my need to over think every situation. It's human nature and it's in all of us to make things much more complicated than need be. I have struggled and obsessed over the question of ovarian suppression vs Tamoxifen. What is right for me? What do the books say is the best option? What would? What if? How come? How long? I have thought so much that I wore myself out.

I have talked to friends and family, I have created a folder (anyone who knows me, knows my love of calendars and folders. If I can create a folder on something, I am all about it). I have printed out just about every single article I could find on the benefits of ovarian suppression in ER positive breast cancers, on menopause at 35, on hysterectomies, on oophorectomies (removing just the ovaries), on the recovery, on the surgery. I have read and re-read every line. I have highlighted statistical facts, I have highlighted opinions, I have highlighted information solely because it looked important. I have been consumed with this for over a week. I had a mini break down the other night over this. I am pretty sure I just mentally wore myself out. 

The other night as I was driving home from work, I was thinking about how I make this choice. I started crying in my car and when I got home I held it together during dinner, then I went into our bedroom and I lost it. Ryan came in and asked me what was going on. I broke down and told him everything. Every fear, every reason I did not want to get my ovaries out, every reason I did want to get my ovaries, how I know I am making this bigger than need be, how I wish I was never told about this new option, how I NEEDED him to tell me what the right thing to do was. Ryan just simply said "do what's in your heart Amy".  I felt like saying well, if I knew that I wouldn't be sitting her crying! However, when he said that, something inside me told me, my answer wasn't in research papers, it wasn't in Google's search engine, it wasn't in any of the places I was looking. To some this might be a no brainer, to some this might seem like I am making a mountain out of a molehill. It's just my head, my heart, and my gut are telling me different things. My head says stay on Tamoxifen. My gut says do the surgery. My heart, felt torn between the both. 

I decided I needed to find some clarity. I needed something to help me make the choice that was right for Amy. As I sat and thought about where do I find this? Do I pray (well, honestly I am not religious)? Do I listen to the advice I have gotten from friends and family (after all they do care about me)?  Where does clarity come from? Then sitting on the couch staring at my computer screen, I decided to re-read my blog. Now, I have only re-read this blog one time and honestly after I was done, I felt sad. I logged in and started at the first entry, March 24, 2011. By the time I had gotten to round 3 of chemo, I knew my answer. I think I always have, I just needed to be reminded. Having gone through everything I have, I mentally blocked out all the bad, all the feelings of sadness, all the feelings of fear. By this I mean from a chemo point of view. I still and will always have feelings of sadness and fear related to cancer, but re-reading the beginning of the blog, when things were still new and my feelings were still all over the place, I instantly in my gut felt like it was happening all over again. I remembered very vividly all those feelings and fears. Then I found the post, the blog post where I sat in my oncologists office in the very beginning of chemo and asked if I could have my ovaries removed. After learning my cancer was 65% estrogen positive and estrogen was made in my ovaries, I wanted them gone too. At that point I was told there was no statistical evidence that removing your ovaries was any better than taking Tamoxifen. Well, look now, there IS evidence that this option can be more beneficial. All I needed was to remember that I told myself from the start, I didn't care how drastic or aggressive it was, I wanted to do every single thing that would make my recurrence rate the lowest. 

So, surgery it is. I can handle menopause at 35, I am kind of thinking it will be nice to go through it young and get it out of the way. I already have hot flashes, I know what it is like to go from a comfortable body temp to pins and needles and feeling like a fire is rising from your chest up. I am already moody from Tamoxifen (I hope it cannot get any worse, there are plenty of days I cannot stand myself). I am already over weight from Tamoxifen and poor lifestyle choices I have made since this all started. I can handle this. I am strong, I am stubborn, I am resilient. I have asked how soon this needs to be done, since it's not emergent (I am 4 years out from chemo in July) but should be done sooner rather than later, I have decided this fall is a great time to go under the ol' knife again. I would like to work hard and drop at least 10lbs (I read, shocking right, that if you go into menopause over weight the side effects are worse). 

I feel good about this choice. I know it's the right one for me. I will meet with my Gyn in the next few weeks and discuss which surgery he thinks is best, total hysterectomy or an oophorectomy. And then I will pick my date. Four years ago, I told myself being a victim to cancer was not an option. I was lucky enough to be diagnosed before it had spread, I was lucky enough to be get chemo and surgery and to be put into remission. I was and still am willing to be as aggressive as possible to make sure I stay in remission. I have 2 amazing children who are becoming their own and who continue to amaze me everyday with everything they do. I am not willing to possibly jeopardize not being there for every game, every dance competition, every argument they have. I am not willing to not be around to continue to annoy the crap out of Ryan ;) We have been married for only 12 years this year, he has a lot more of me to deal with!

So, like I said in the beginning of this post, "sometimes the questions are complicated and the answers are simple"- Dr. Seuss. 

Decisions, decisions, decisions

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.