I was quite confident of my decision. February 23rd 2015, I was scheduled to get my prophylactic oophorectomy ( surgical removal of ovaries to reduce future risk of breast cancer).Everything had been set up. Time off from work, pre-op physical and tests, extra help were all on the calendar.
I had mulled over this procedure in the last few months. I had read about it, heard about it, thought about it . The overarching paradigm: I need to do everything possible to improve my survival rate.
Right from the diagnosis, I had carefully used my medical training and knowledge to fight this dreadful disease. I had read many books, narratives and accounts. I had researched online. I had talked to my medical colleagues . As I received treatment, I was becoming more and more familiar with the disease of breast cancer, its nuances, landscape of treatment and controversies. For me, conquering the disease meant soaking up all I could find about it.
“Know thy enemy!” I said to myself.
Of course , it had its down side too. I would read about metastatic, stage 4 disease which would be scary and stressful. The disability and the vision of death would become overwhelming . But I would confront my fears and cope the best I could. I knew the survival rate of my cancer stage, Stage 3, 70 percent five year survival rate. I also understood that five year survival rate counted those women who still have the disease but remain alive even after five years of being diagnosed. I understood the grey of medical statistics.
I had been waiting for the new data to be presented at the San Antonio Breast Symposium in December 2014. That data which was supposed to be helpful in determining if there is actually increased survival advantage with ovarian suppression( suppressing their function that is).
Breast cancer and ovaries are an intimately connected topic. Breast cancers are classified according to the type of receptors that the breast cancer cells carry.
The kind of breast cancer I have is called “ER and PR positive”(ER stands for estrogen receptors, PR for progesterone receptors). This means that the cells, the cancer cells, have receptors to which female hormones, Estrogen and Progesterone will attach. Ovaries produce these hormones. Simple way to understand, the more the hormones, the more the risk that they will make the cancer cell proliferate.
Granted the assumption is that chemotherapy and radiation , after surgery, would have destroyed all the cancer cells which is what would “disease remission” be, but when it comes to a diseases like cancer, it requires every possible intervention and the end goal is always improved survival.
I had read the paper carefully, looked at the numbers and utilized my medical knowledge of statistics to come to terms with my decision. But I am not an oncologist. The subtleties of oncology is still something I don’t quite get in detail. The data from the trial hinted towards suppression of ovaries as a way of reducing that chance, slim but nonetheless a chance.
Sad truth of the life of survivor, coming to terms with odds, probability and the chance.
So I checked into the cancer center and waited to be called in for my appointment with my oncologist.. This was the first time I was meeting her since the data was presented. I was expecting this appointment to be clear and precise where she would celebrate my decision and I will go get the surgery done and move on.
The appointment didn’t go as I had expected it to.
My oncologist is a compassionate doctor. She is immensely likeable and human unlike the stereotyped detached oncologist. We talk about handbags and shopping and socks, woolen socks as she proficiently examines me every time, with sure hands and glowing confidence. She has a cheerful demeanor, and an optimistic disposition both highly desirable for a medical oncologist and she is a woman. I had read this study about how female physicians on average spend more time with their patients than male physicians do.
She is warm and engaging but never tells me what to do. Sometimes it gets annoying when it comes to sorting things that I don’t understand fully. I am not sure if she opts for this approach because I am also physician or this is her general style. Perhaps I get a nice blend of both.
She had been aware that I had scheduled the surgery. She opened the conversation by this very direct statement,” I don’t think you should do the surgery”.
I was taken aback. I muttered, ‘But didn’t the data suggest that getting the ovaries out improves survival?’ I asked.
What following was a conversation that left me befuddled and unsettled.
In my mind, getting the ovaries out was the clear way of improving survival. She however started talking about quality of life.
A lot of medical conversations, especially in the lives of those afflicted with cancer , rotate around the phrase, “quality of life”.” quality of life” that we seldom think about when we are healthy. Quality of life that becomes so relevant in terminal illness scenario. Quality of life which should be the essence and focus of all alive.
” Do you realize what abrupt menopause will do to you at your young age?”.
But I want to live long, my mind replied.
“Have you thought about the potential effects menopause on the quality of your life?”
No, I hadn’t. Once you have cancer, you get so obsessed with preserving life and staying alive that you transiently stop considering the quality of days you have.
The warrior terminology makes you want to defeat it at any cost.
Is all cost worth paying? I have already done aggressive treatments, mastectomy, harrowing cycles of chemotherapy and radiation that left my skin peeling. Isn’t that enough? In my quest for increased survival and conquering cancer, what I had left on the curbside is considering about all the things that really matter to me.
She then rattled off a list of all the things that could go wrong. “You feel well right now, you are recovering but after the surgery you can gain weight, your cardiac risk increases, you can have hot flashes, depression and other things your husband won’t be happy about”.
I have stayed fit and within normal weight all my life. The idea of acquiring pounds in exchanged for longevity didn’t seem fair. The image of myself obese with a weak heart and depression shook me up.
As she was talking, my mind was processing the phrase ” quality of life”. What do I want? More days? or more quality? Why do I have to make that choice to begin with……
Would I be fit and happy like I am now or trade in all of that for a minuscule increase in survival.
I asked her if she could give me a percentage increase in survival if I did the surgery and she said she couldn’t. So should I knowingly give up my ovaries with a great likelihood of suffering in exchange for an undetermined chance of reduction in recurrence ?
If I don’t get my ovaries out and experience a recurrence, would I blame myself for not doing everything I possibly could have? Would I feel guilty about it as I would say bye to my kids and family.
My mind was working, in all angles and in all directions.
Untimely menopause, another surgery, quality of life, cancer.
If I had the genetic mutation of BRCA 1 or 2, the decision would be easy. There is a 50% reduction in cancer risk after ovary removal in high risk women with BRCA mutation. I did not have that.
Chemotherapy shocks the ovaries, they are stunned. No one knows if they will “wake up” and start producing estrogen and progesterone that my breast cancer cells have receptors for. Or they have completely quit working for good.
Circulating levels of estrogen and progesterone will “feed” the cancer cells. My lab tests tell me I do have enough of the hormones in my body. But oncologist considers this unreliable to decide if I am in menopause or not. Never mind that I have not menstruated in the last 18 months. Still medical doctors cannot confirm if I am indeed in menopause or not.
I want to scream, I am not a lab rat, I am a person, a whole person. I question, how much do I have to give up to stay alive?. I am taking Tamoxifen , the medicine which prevents estrogen from binding to my cells. That is a lot of treatment right there. My aunt with breast cancer took that medicine for 5 years, she is here 30 years later, cancer free.
I have just started to return to some normalcy where I can get through a day without taking a nap. I have even started to flirt with the idea of regular exercise. Can I afford mentally, another disruption, another recovery, another pause? My kids are seeing me recover and be a mother again. I am reconnecting with my life.
Do I opt for that marginally increase in survival and risk a lot elsewhere? I thought and thought.
” You could do medical suppression as well, we will give you an injection every months until we are sure you are in menopause”.
The effects of suppression of ovaries with the injection would be identical to surgical removal , the only caveat, ovaries once removed cannot be put back in while I can refuse the shots should I be really miserable with the menopause symptoms.
I suddenly felt that enough is enough. I had walked in here with a date for the surgery but here I am thinking about this from an entirely different perspective.
I told the doctor. “I am taking this year off. No surgeries, no shots.”
I want to live this year recovering. I want to be strong and healthy , as much as my body will allow. I want quality of life. A year of peace and recovery. I will table this decision for next year. A year , I know, is an arbitrary time line. But it means at least one birthday, one anniversary and one birthday for each my kids and husband. It means one Christmas and new year where I am not dealing with severe direct effects of cancer treatment.
I am taking Tamoxifen and I will hope for the best. So for now , just let me live my life.
The chances that I will be happy are 100% because I feel that it’s the right decision for me for now. The other odds and statistics, I will review after a year.
(Here is the link to the post I wrote about the plan to get the ovaries out earlier https://uzmamd.com/2014/12/17/why-i-am-planning-to-get-my-ovaries-out/)
Thank you so much for opening your inner world and thought processes to all us. An excellent post.
Gave me a lot to think about. Thanks and beautifully written!
I understand why you need a year off to just live, feel like a human being and not just a cancer patient. There comes a point of diminishing returns in cancer prevention. If you followed every diet, supplement recommendation, or other helpful tip, you might lower your risk by half a percent but lose 50% quality of life. Take your time, get strong, get well. Then decide if it is the right decision or not.
You are wrong. You have to have surgery or will return 😦
As I wrote, all choices are personal and require thoughtful consideration of what is important to us. Yes i may be wrong, very wrong, its my choice for now. Thanks for reading.