Oophorectomy

This is the easiest question of all for me.
I was my mom's caretaker for 2 years. I literally went through her cancer diagnosis & treatment with her as well as taking her last breath with her.
When my next family member was diagnosed & we found out that we carried the BRCA gene mutation, in my mind it wasn't an if for me, it was a when.
I knew that I had to do everything that I could to not go down this road.(No woman in my family has lived past the age of 60.)
I knew that for me giving up my breasts & ovaries was my only choice with the odds stacked so high against me. In MY opinion taking prophylactic measures was far easier than the choices I would have to make if I developed one cancer cell. This is the easiest question of all for me.
I was my mom's caretaker for 2 years. I literally went through her cancer diagnosis & treatment with her as well as taking her last breath with her.
When my next family member was diagnosed & we found out that we carried the BRCA gene mutation, in my mind it wasn't an if for me, it was a when.
I knew that I had to do everything that I could to not go down this road.(No woman in my family has lived past the age of 60.)
I knew that for me giving up my breasts & ovaries was my only choice with the odds stacked so high against me. In MY opinion taking prophylactic measures was far easier than the choices I would have to make if I developed one cancer cell.

The side effects from the oophorectomy have not been bad. They include hot flashes and weight gain. Not the greatest side effects to deal with but certainly manageable. I currently take Effexor XR (an anti-depressant) to treat the hot flashes, however I am in the process of weaning from that medication as my hot flashes aren't terrible and I'd rather be free from anti-depressants. Weight gain is weight gain. Healthy eating and exercise helps with that. I also experience achy joints but I think that's attributed to the aromatase inhibitor I take and not menopause.
Choosing to have an oophorectomy at my age (35 at the time) was quite difficult because I hadn't fully accepted not being able to have anymore biological children. But knowing that removing my ovaries was going to help keep my estrogen levels low and hopefully my cancer at bay made it an easier decision. The side effects from the oophorectomy have not been bad. They include hot flashes and weight gain. Not the greatest side effects to deal with but certainly manageable. I currently take Effexor XR (an anti-depressant) to treat the hot flashes, however I am in the process of weaning from that medication as my hot flashes aren't terrible and I'd rather be free from anti-depressants. Weight gain is weight gain. Healthy eating and exercise helps with that. I also experience achy joints but I think that's attributed to the aromatase inhibitor I take and not menopause.
Choosing to have an oophorectomy at my age (35 at the time) was quite difficult because I hadn't fully accepted not being able to have anymore biological children. But knowing that removing my ovaries was going to help keep my estrogen levels low and hopefully my cancer at bay made it an easier decision.

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
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.

I took a three-pronged approach to managing my estrogen. First, I decided to have my ovaries removed about a year after I finished treatment. I had had a simply hysterectomy a decade ago, so I still was ovulating even though I wasn't menstruating. Second, once I went through surgical menopause, I started taking Arimidex. It effectively knocks out estrogen produced by the adrenals. Finally, I have studied all of the dietary sources and tried to make sense of the research. The plant sources of estrogen are many, and the research on its effects for breast cancer is contradictory. I have decided to be very moderate in my consumption of soybeans, for eaxmple. I took a three-pronged approach to managing my estrogen. First, I decided to have my ovaries removed about a year after I finished treatment. I had had a simply hysterectomy a decade ago, so I still was ovulating even though I wasn't menstruating. Second, once I went through surgical menopause, I started taking Arimidex. It effectively knocks out estrogen produced by the adrenals. Finally, I have studied all of the dietary sources and tried to make sense of the research. The plant sources of estrogen are many, and the research on its effects for breast cancer is contradictory. I have decided to be very moderate in my consumption of soybeans, for eaxmple.

Great question. "Automatic" implies knee-jerk, and, as with most patient-related issues, the answer is "it depends." BRCA positivity confers a lifetime risk of ovarian cancer of 25-40%. Oophorectomy is the best prevention for ovarian cancer, therefore oophorectomy should be discussed with and offered to all female carriers of a deleterious mutation. The prevention is not absolute however, and primary peritoneal cancer can still occur after prophylactic oophorectomy. The issue really is timing. When to do the procedure? Questions need to be asked. How old is the patient? Have they completed their family? Do they plan to have more children?
I counsel my patients who are carriers of deleterious mutations to have prophylactic oophorectomy by age 40. In the meantime, I advise regular bimanual pelvic examinations, transvaginal ultrasound exams and CA125 levels. Great question. "Automatic" implies knee-jerk, and, as with most patient-related issues, the answer is "it depends." BRCA positivity confers a lifetime risk of ovarian cancer of 25-40%. Oophorectomy is the best prevention for ovarian cancer, therefore oophorectomy should be discussed with and offered to all female carriers of a deleterious mutation. The prevention is not absolute however, and primary peritoneal cancer can still occur after prophylactic oophorectomy. The issue really is timing. When to do the procedure? Questions need to be asked. How old is the patient? Have they completed their family? Do they plan to have more children?
I counsel my patients who are carriers of deleterious mutations to have prophylactic oophorectomy by age 40. In the meantime, I advise regular bimanual pelvic examinations, transvaginal ultrasound exams and CA125 levels.

This is a difficult issue - if your breast cancer was estrogen-receptor negative, then removal of the ovaries will not necessarily reduce the risk of recurrence, but might reduce the risk of a new breast cancer developing over time. If your breast cancer was estrogen-receptor positive, then the goal is to reduce the amount of estrogen that your breast tissue is exposed to in order to help reduce the risk of recurrence or new disease developing. Years ago, removal of the ovaries was a standard part of breast cancer treatment. Most often now it is performed in women that carry the BRCA 1 and 2 mutations, as they have a significantly elevated risk of developing ovarian cancer.

As with any prophylactic surgery, removal of the ovaries is a difficult decision, especially in a premenopausal woman. Menopausal symptoms can sometimes be severe, and bone loss is a real concern as well. And once the ovaries are removed, they can't be put back...you may want to ask your doctor about other options, such as a trial of lupron (which will induce a "chemical menopause" - but at least it's reversible if you don't do well on it). This is a difficult issue - if your breast cancer was estrogen-receptor negative, then removal of the ovaries will not necessarily reduce the risk of recurrence, but might reduce the risk of a new breast cancer developing over time. If your breast cancer was estrogen-receptor positive, then the goal is to reduce the amount of estrogen that your breast tissue is exposed to in order to help reduce the risk of recurrence or new disease developing. Years ago, removal of the ovaries was a standard part of breast cancer treatment. Most often now it is performed in women that carry the BRCA 1 and 2 mutations, as they have a significantly elevated risk of developing ovarian cancer.

As with any prophylactic surgery, removal of the ovaries is a difficult decision, especially in a premenopausal woman. Menopausal symptoms can sometimes be severe, and bone loss is a real concern as well. And once the ovaries are removed, they can't be put back...you may want to ask your doctor about other options, such as a trial of lupron (which will induce a "chemical menopause" - but at least it's reversible if you don't do well on it).

An oophorectomy is the removal of the overies. An oophorectomy is the removal of the overies.