The mastectomy may be the more emotional aspect of this journey but definitely cant be upstaged by the choice of the hysterectomy. I have spent an equal amount of time stressing about this choice.When you are BRCA positive it’s important to be proactive about your breasts and your reproductive organs. My breast specialist said that if you are going to take the profalfic route then we need to have both surgeries. The ovaries are the hub of hormones and the majority of breast cancer is hormonal driven and starts with the ovaries! So these bad ladies needed to come out! Do I wait until I am closer to 40?Do I suffer with menopause? Will I gain weight? Will I lose my sex drive? Heart disease? All these questions plus more needed to be answered.
Some background on my reproductive health. I suffer from PCOS, My ovaries produce wrong levels of estrogen and progesterone as well as developing an insulin resistance and reduces my metabolism, which is where my struggle with weight plays in.. and this condition is hereditary…damn genetics… I have been in pain for 10 years battling this condition. This was the culprit for our fertility issues, I have developed cysts that have been as big as a grapefruit! Had painful intercourse, low or little sex drive (was so bad once that me and my husband went 1 year of no sexual relations) , irregular periods, heavy periods that would last upwards of 14 days.I tried taking all sorts of medicine but nothing helped. My doctor convinced me that a hysterectomy would not solve this issue at all since it was in deed a hormonal disease. There is also medical research that backs this up as well, so i suffered through it besides I was scared to death of menopause anyway but the symptoms i am already suffering are the same as menopause so what i was really scared of? Needless to say my doctor refused to perform the surgery based on the BRCA outcome. Time for a referral.
I was referred to an actual oncologist GYN, who was a man (I have never been to see a man) and his last name was the same as mine…. Ok a little weird! I had 5 weeks between my initial diagnosis and my first meeting with him. I googled and stressed like crazy! I had read that HRT (hormone replacement therapy) was awful and to much of a risk, could still cause cancer, blah..blah… I am 35 I need my hormones! I am a professional and deal with people everyday, I need my hormones, I have a husband and kids and deal with them everyday…I need my hormones! I had convinced myself that I needed to wait.
Armed with pages of questions, I met Dr.Williamson on Oct.31st,2016. He was so nice and so genuine and patient with me and answered all my questions, we prob talked for 30 minutes and I was never rushed. After listening to me this is what he said ” I can help! If you were my sister i would tell you that you have to do this surgery, there is no option! All your previous problems will disappear” But if my ovaries develop the hormones then shouldn’t i keep them? He smiled and said “your hormones are shitty now, with this we can actually elevate them and keep them stable” Here are my other key questions that he answered:
Sex drive? IT will be better than ever
Quality of sex? He laughed and said that obviously was up to us but my body will not be in pain anymore so sex should be better than ever.
Weight gain? Its a myth, in fact you will probably be able to lose weight since your ovaries will be gone.
Heart Disease? You are able to take HRT
Bone loss? You are able to take HRT
I secretly (secret no more) suffer with mood swings so the thought of getting that fixed and to help my relationships makes me excited that this could be an answer and I can finally feel normal!
HRT has no direct link of danger to BRCA and has been proven safe. Now we will have to play with the dose to get just right but should be elevated in 3 months. Can start as soon as I come out of surgery, so no menopause… YES! I can take HRT until I am 50.
Since I do not have cancer and I am having both surgeries done this is why I am able to have it, if I had chosen to just undergo the hysterectomy then I would have breast tissue that would be at risk and would not be allowed. This is when I am thankful for the test because knowledge is power and the ball is in my court, I am feeling a little less depressed.
I never knew there was so many types of hysterectomies, normally with BRCA it is recommend that you have what is called an oophorectomy and salpingectomy (ovary and tube removal) The doctor said we needed to go ahead and just take everything since I have had other issues and will prevent another surgery in the meantime. We wanted robotic but since i am having the mastectomy the same day we couldn’t get the OR with all 3 surgeons so we opted for laparoscopic. Will add more recovery time but the pain from the mastectomy will mask the abdominal pain which is one of the reasons I am ok with having all surgeries done at once. I will be having a radical LAVH hysterctomy done. I supplied a chart as i found it interesting. Man what a day of total body violations, sucks being modest!