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What were the most important factors for you in deciding to have a bilateral mastectomy and removing your ovaries rather than other options?
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member6439 (Survivor (2 - 5 years)) - 09 / 19 / 2011
I had 5 great reasons for going ahead with a bilateral mastectomy and ovary removal. My husband and our four beautiful chilren. When I was diagnosed at age 39, even before my positive test for a mutation in my BRAC1 gene, my twin sister, who experienced Stage 2 breast cancer at age 33, was undergoing either a mammogram or a MRI every 6 months. Every 6 months, she had to go to the doctor and wait for an 'all clear' call. I decided that a bilateral mastectomy FOR ME was the best way remove the cancer and reduce my risks for it coming back again. My tumor was also estrogen receptor positive. My doctors informed me of the increased risk of ovarian cancer and since I was already blessed with four children, it was not a hard decision to remove my ovaries. I do miss the estrogen, though. I'm taking Femara now as part of my adjuvant therapy and being in menopause at the tender age of 42 pretty much stinks. Hot flashes and night sweats are as bad as my mother-in-law described. NO, they are worse. Actually, my twin opted for a prophylactic bilateral mastectomy with reconstruction and ovary removal too. She has a mutation in both her BRAC1 AND BRAC2 gene. Because of the current research related to increased risk when you have a mutation in your BRAC1 or BRAC2 gene, she decided to make the difficult decision to have these surgeries. These are difficult decisions but fortunately, there are great medical and surgical minds (and genetic counselors!) that can help you talk through your options.
member4039 (Survivor (5 - 10 years)) - 09 / 19 / 2011
Good day for this question. I struggled with this decision for almost two months before making a choice. The most important factor, the SINGLE most important factor (just my non clinical, patient perspective) is understanding the specifics of your diagnosis and the medical options available because of the diagnosis. And then, weighing the odds of each treatment choice. Make an informed decision based upon proven medical facts already accepted by the experts. Don't doctor shop until you hear what you want to hear. Two opinions is sufficient, three AT MOST. Then, apply your own brain or trust someone to use theirs and lay it all out on the table.
Indulge me, I'll tell my story and how I came to my own decision.
In my own case, I was "high risk." My mom had a pre-menopausal dx at 49 years old. For me, that was the obvious first factor because that was something I understood and lived with for 19 years. When I learned I didn't have "garden variety" BC, I began to learn about this thing called "lobular" bc. Who KNEW there were something like 8 different types of BC. I began researching everything I could find about invasive lobular breast cancer. Knew to only go to reliable websites to gather my facts. Didn't like some of the statistics regarding contralateral disease. Even though I understood ILC to be a slower growing cancer, it is also a sneaky cancer and if I remember my stats correctly, there was a 30% chance something may already be going on in the other breast.
Of course, met with genetics at MSK, provided them with a detailed "pedigree" even before the BRCA test was performed. Had an MRI, sentinel node biopsy because statistically the surgeon correctly told me, "Nine times out of ten these things turn out to be nothing." when she was doing the biopsy. No reason to even examine lymph nodes during the lumpectomy (biopsy).
I began to try to understand how to properly calculate a risk factor (something I would NEVER be able to do with chemobrain... those are complicated calculations). My own cancer elevated the risk, mom's cancer, that 30% chance in the other breast. When I met with the surgeon for my post op check up after the node biopsy, I told her I wanted a bilateral. This is where "there are doctors and then, there are DOCTORS" (and fyi, Dr. A, you are in the latter by a mile). She put down all of the paperwork and sat down beside me to ask me WHY. I was able to clearly explain all of my reasons (and I was forewarned by the PA, "she will not let you make a decision like that without going home to think about it"). My BRCA results were still not in. She asked if I would like to wait for the test results and I explained those results mattered very little. The surgery was scheduled that day.
As a general aside but of significant importance, I knew I would have to have radiation. It wasn't the radiation that bothered me, it was the fact that IF there was a problem that ultimately did require mastectomy down the road, I understood the reconstruction process would not be quite as easy working with radiated skin.
About a week later, I did get my BRCA results. I have mutations of unknown significance on both BRCA1 AND BRCA2. I sat with the head of genetics at MSK to review the results. One of the mutations was seen for the first time (in me). Basically, that was an inconclusive test in the decision making process so I am glad my decision was already made regarding the mastectomy. The BRCA tests played a role months later when I was deciding about the ovaries.
When something is an area where research as shown no benefit in choosing one treatment over the other, at least where I was treated, the doctors are very big on patient choice playing the biggest (the only) role. This, at some point started to get annoying and I joked about it with my oncologist when discussing my ovaries. I was 49 and I knew the ovaries were a potential problem waiting to happen. But still. I wanted to be TOLD what to do. I wanted a doctor to make the choice. I was sick of self advocating at this point. He had access to the BRCA results and his guard was down as he glanced at the paper and he blurted, "and those ovaries are going after chemo" .... and then, in his very professional You Make The Choice voice, "You should think about having your ovaries removed when we are done with the chemotherapy." I laughed, told him "too late" and "thank you telling me what to do" ....
That was a very long story...... but it's all about information...it's about understanding what is unique about your disease (no two are alike)....... and it's about having the ability to weigh options by saying, "If I do this, I have a 50% chance of something happening in the future" vs "If I don't do this, I have a 90% chance something may happen in the future" When the percentages are not that clear cut, it gets a bit sticky and difficult. Making sure the stats are being presented accurately (and this is where it helps to have a math head or someone who can break it down for you in an unbiased, simple, this is it fashion)..... VERY important.
Ultimately, my fear at 49 was that I did not want a new breast cancer 20 years down the road which seemed to be a big issue in my own case. So, I chose the most drastic route. I am lucky (no, not rah rah breast cancer lucky) that I DID have my choices validated quickly. The "good breast" was filled with as yet unseen things which would have at the very least had me in for a biopsy, Mom was dx'd with a 2nd primary in her other breast less than a year after my surgery, my youngest sister had a DCIS dx with one matching BRCA mutation, my other sister missed her mammo time by about two months. The doc wanted the "suspicious area" removed. The cell changes were there. Likely if she went on time, the area would not have shown up and a year later, it would have been cancer. I am now part of what is known as "familial disease."
And ok...I will shut up now. Feel free to edit at will!!!
AnneMarie
Indulge me, I'll tell my story and how I came to my own decision.
In my own case, I was "high risk." My mom had a pre-menopausal dx at 49 years old. For me, that was the obvious first factor because that was something I understood and lived with for 19 years. When I learned I didn't have "garden variety" BC, I began to learn about this thing called "lobular" bc. Who KNEW there were something like 8 different types of BC. I began researching everything I could find about invasive lobular breast cancer. Knew to only go to reliable websites to gather my facts. Didn't like some of the statistics regarding contralateral disease. Even though I understood ILC to be a slower growing cancer, it is also a sneaky cancer and if I remember my stats correctly, there was a 30% chance something may already be going on in the other breast.
Of course, met with genetics at MSK, provided them with a detailed "pedigree" even before the BRCA test was performed. Had an MRI, sentinel node biopsy because statistically the surgeon correctly told me, "Nine times out of ten these things turn out to be nothing." when she was doing the biopsy. No reason to even examine lymph nodes during the lumpectomy (biopsy).
I began to try to understand how to properly calculate a risk factor (something I would NEVER be able to do with chemobrain... those are complicated calculations). My own cancer elevated the risk, mom's cancer, that 30% chance in the other breast. When I met with the surgeon for my post op check up after the node biopsy, I told her I wanted a bilateral. This is where "there are doctors and then, there are DOCTORS" (and fyi, Dr. A, you are in the latter by a mile). She put down all of the paperwork and sat down beside me to ask me WHY. I was able to clearly explain all of my reasons (and I was forewarned by the PA, "she will not let you make a decision like that without going home to think about it"). My BRCA results were still not in. She asked if I would like to wait for the test results and I explained those results mattered very little. The surgery was scheduled that day.
As a general aside but of significant importance, I knew I would have to have radiation. It wasn't the radiation that bothered me, it was the fact that IF there was a problem that ultimately did require mastectomy down the road, I understood the reconstruction process would not be quite as easy working with radiated skin.
About a week later, I did get my BRCA results. I have mutations of unknown significance on both BRCA1 AND BRCA2. I sat with the head of genetics at MSK to review the results. One of the mutations was seen for the first time (in me). Basically, that was an inconclusive test in the decision making process so I am glad my decision was already made regarding the mastectomy. The BRCA tests played a role months later when I was deciding about the ovaries.
When something is an area where research as shown no benefit in choosing one treatment over the other, at least where I was treated, the doctors are very big on patient choice playing the biggest (the only) role. This, at some point started to get annoying and I joked about it with my oncologist when discussing my ovaries. I was 49 and I knew the ovaries were a potential problem waiting to happen. But still. I wanted to be TOLD what to do. I wanted a doctor to make the choice. I was sick of self advocating at this point. He had access to the BRCA results and his guard was down as he glanced at the paper and he blurted, "and those ovaries are going after chemo" .... and then, in his very professional You Make The Choice voice, "You should think about having your ovaries removed when we are done with the chemotherapy." I laughed, told him "too late" and "thank you telling me what to do" ....
That was a very long story...... but it's all about information...it's about understanding what is unique about your disease (no two are alike)....... and it's about having the ability to weigh options by saying, "If I do this, I have a 50% chance of something happening in the future" vs "If I don't do this, I have a 90% chance something may happen in the future" When the percentages are not that clear cut, it gets a bit sticky and difficult. Making sure the stats are being presented accurately (and this is where it helps to have a math head or someone who can break it down for you in an unbiased, simple, this is it fashion)..... VERY important.
Ultimately, my fear at 49 was that I did not want a new breast cancer 20 years down the road which seemed to be a big issue in my own case. So, I chose the most drastic route. I am lucky (no, not rah rah breast cancer lucky) that I DID have my choices validated quickly. The "good breast" was filled with as yet unseen things which would have at the very least had me in for a biopsy, Mom was dx'd with a 2nd primary in her other breast less than a year after my surgery, my youngest sister had a DCIS dx with one matching BRCA mutation, my other sister missed her mammo time by about two months. The doc wanted the "suspicious area" removed. The cell changes were there. Likely if she went on time, the area would not have shown up and a year later, it would have been cancer. I am now part of what is known as "familial disease."
And ok...I will shut up now. Feel free to edit at will!!!
AnneMarie
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