Removal of tubes & postponing ovary removal

Hi ladies,

I had a lap for endometriosis a few months ago and am now scheduled for hysterectomy (TLH) on Nov 16th due to adenomyosis.

In between the two surgeries, I discovered there is a strong history of cancer on my paternal side including breast and ovarian cancer. I grew up not knowing my father’s family until recently. I am 40 years old.

Doctor had scheduled me for hysterectomy with right tube removal. I told the doctor during my pre-op about the news of family cancer - my aunt died of ovarian cancer and my grandmother died of breast cancer. My father died of cancer. All of his siblings except the youngest developed some kind of cancer. It’s a big family.

Doc says that we can still leave right ovary so I don’t go into premature menopause and we can take the right ovary out later once I turn 50 or so. He said most women get cervical cancer in 50s-60s. I’ve heard that salpingectomy can reduce risk of ovarian cancer.

Did anyone with family history of ovarian cancer or BRCA gene opt to remove tubes but keep one or both ovaries? How did that go for you? Did you end up having to remove the ovary anyway? Were you able to remain cancer-free?

I don’t like the idea of having a third surgery down the road, but I also really don’t want premature menopause as I’ve had horrible periods my whole life and need a break and I don’t want to increase my risk of breast cancer or complications by going into menopause early and needing HRT or natural hormonal supplements. I’m curious what other people’s experiences have been.

In December 2017, my sister was diagnosed with Stage IV metastatic breast cancer. She is 42 now, but during the cancer workup, the doctors did genetic testing due to our extensive family history of breast, ovarian, prostate, uterine, melanoma, and colon cancers on my father's side. My sister Jaime is BRCA 2 +, so they encouraged my brother, father, mother, and I to get tested for free. My mother did not get tested, but rest of us did and we are all BRCA 2 +.
My OB/Gyn suggested for me to get a double mastectomy, and referred me to a oncologic breast surgeon and plastic surgeon who did my double mastectomy in August 2018. I had several complications with this surgery, such as infections, wounds, etc, but I would do the surgery again so I would not have to go through what my sister is going through now.
My plastic surgeon will perform a breast reconstruction on December 19, 2018. The surgery is between 8-12 hours long. I will be getting stacked flaps using DIEP (abdomen) and PAP (back of the upper thigh) flaps along with my own fat to sculp my new breasts. I do not want more surgery, so that is why I did not want implants.
I did not mention it yet, but I am married and almost 39 years old. I do not have any children, so this was one of the hardest decisions to make. My OB/Gyn also suggested I get a hysterectomy with salpingo-oopherectomy. My doctor said that he has seen ladies use the watch and wait method for andy form of reproductive cancer, and he has been devistated by some cases. He told me of a young 32 year old woman who had a BRCA mutation that came in every 6 months for a TVUS. In January, she was fine. In July, she had Stage IV ovarian cancer and died the same year. I had my LVAH with BSO on November 1, 2018. I had no complications. This surgery was one of the easiest to recover from, physically speaking. I have been walking 3-5 miles everyday after the 2nd day I came home.
Regarding menopause, the doctor said we would speak of that at my first post-op appointment. About a week after my LVAH, he asked if I had any issues/problems regarding menopause. I told him no. He did ask me how much I had been walking (before this, I had been running between 2-6 miles 4-5 times a week). When I told him, he told me as long as I keep up my exercise on a regular basis, whether it's walking, swimmimg, biking, running, etc., I should not need HRT. It has been about 3 weeks, and no menopause symptoms.
Not sure if this helps in anyway, but I hope it does.

Thank you, Heather! That’s so scary to hear the story of that woman who suddenly developed cancer at 32! I hope your surgery goes well! It is a little overwhelming to have everything cut out at such a young age. I’m about the same age as you (40).

I haven’t been officially tested yet for BRCA though I did do a DNA test and uploaded my results to a company that does health analysis and it looks like I have some variation of BRCA, but from the results, it sounded like I don’t have the really high risk mutations of the gene. But we’ll see if they give me the official test. My friend with family cancer history said that they wouldn’t test her because of something really arbitrary like not having the cancer dates of her relatives.

My paternal cousin said that they aren’t sure if the cancer was environmental due to the part of Louisiana where they were from which I guess has a lot of environmental toxins.

The doctor did say that there’s no way to really monitor and predict the ovarian cancer, similar to what you described. So we’d basically just go and remove it at 50.

We did do the hysterectomy surgery last week and I believe he did leave the right ovary only. My tubes and left ovary are gone.

I recently had my first mammogram and they did see some calcification on one of my breasts. They had a hard time getting good clear scans because my breasts are large and dense and it was my first time so they had nothing to compare it to. I have to go back in 5 months for another scan so they can track it.

Hopefully my mom’s genes are strong as there is no cancer on her side and almost everyone lives to be in their 80s-100s. On their side I do have to worry about heart disease and osteoporosis.