To have a Prophylactic Salpingo-Oophorectomy?

Rayna_666

I will give a brief back story. I was diagnosed with Stage 3 Grade 3 Triple Negative Invasive Ductile Carcinoma with affected lymph nodes in 2016 at the age of 32. I had ACT chemotherapy, double mastectomy with implant reconstruction, and radiation. I do have the BRCA1 mutation. I was deemed in remission in 2017 and am down to six-month visits with my oncologist. I am seeing a different one than the one that I had been with throughout my journey as I moved across the country. However, both have pushed me to get a Prophylactic Salpingo-Oophorectomydue to the genetic mutation and the rise in the chance of developing ovarian cancer, which I understand is hard to detect until it is very far along. I understand the logic but am not thrilled about having an essentially elective surgery right now (not just in light of COVID but also personal issues, death in the family, etc.) Here are the pros and cons from my perspective.

• Pros: According to my research, it reduces the risk of developing cancer by 80%.
• Piece of mind (few symptoms and no real good early detection is scary).
• I would have less pushing from my doctors.
• I would never need birth control again. (Which is another question as I was never checked if I am even fertile).
• My oncologist said I can take estrogen to even out hormones (the osteoporosis issue).

And (in my perspective)

• Cons: I feel like I would be succumbing to fear of something that may never happen.
• I don't know how I feel about removing more of my feminine organs.
• There is a risk of osteoporosis.
• The early onset of menopause is not too appealing.
• I don't know about taking synthetic estrogen until I am 51.

One other thing I want to bring up is the hormone issue. I took birth control pills from age 15 to 32. At first, my oncologist did not know if I had E+ cancer (before pathology came back triple-negative) and so I got an IUD at that time (Mirena, a progesterone release device), which I still have. So I have not experienced my natural hormone state since age 15. Maybe this is odd, but I feel like I maybe should before I take out my female organs?

I was looking for experiences, thoughts, and/or opinions from anyone who has had this surgery or thought about it and decided not to. Any thoughts are appreciated. I am going through a lot right now and this is in the back of my mind. I am in no way wanting to flirt with disaster, but I am stressed to the max and I do not know if I am thinking straight. Don't get me wrong, I am filled with gratitude every day that I survived and am here to make decisions like this and to experience life. Much love and thank you for reading my novel here!

Rayna_666

Sorry, if anyone is reading this thinking, "What is she talking about," the surgery I refer to is the removal of the ovaries and fallopian tubes to reduce the risk of developing ovarian cancer, especailly in those with a BRCA genetic mutation.

MelissaDallas

With a 44% cumulative risk of developing ovarian cancer by age 80 with BRCA I I’d certainly get the surgery. I had ovarian cancer and it was very miserable and I was so lucky that it was a rare one that didn’t need chemo. Still, I almost died between huge tumor,ascites and PE, plus when I was going into surgery they told me I would likely wake up with a chemo port in my belly and possibly also a colostomy. I also had to have a partial omentectomy, which was very painful to recover from.

navy1305

I had a hysterectomy with both ovaries and Fallopian tubes out, but my situation was slightly different. I had a lot of DCIS (~8cm) and also 4 spots of invasive cancer once the mastectomy tissue was dissected. Anyways, I requested the hysterectomy because my periods were SUPER heavy, as in I needed to change a super plus tampon every 1.5 hours on my heaviest 2 days to avoid embarrassing situations. I did not have any BRCA mutations, but because I was adopted and do not know my family history, we decided it would be better to just take everything out while we were at it. My surgery was laparoscopic, so I only had 3 visible incisions that are not that big, and a slightly larger one in my belly button.

My cancer was ER+ PR+ Her-, so I could not use hormones to control the bleeding any more once we figured out I had cancer.

Jelson

I am sorry you are facing this choice. I had a total hysterectomy 5 years ago due to endometrial cancer but was well past menopause, so my personal experience is not relevant to you. However I did read a clinical study last week (which of course I cannot locate now) which discussed the different types of ovarian cancer and the growing consensus that the fimbriae of the fallopian tubes ( the wavy fingers at the ends near the ovaries) are the primary source of much ovarian cancer. Here is an older article about this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855333/ I was wondering, might it be possible to research having only your fallopian tubes removed? You might look to see if any clinical studies are being done on this. The risk of ovarian cancer in those with BRCA 1 - your first CON - succumbing to fear about something that will never happen - that is the nature of risk - it isn't a sure thing, but the odds are against you with BRCA1. I too would be concerned about any elective surgery now. Can you give yourself a time frame of 6/12 months. Have your IUD removed now, experience your natural hormones and then have surgery to reduce your very real risk of ovarian cancer.

SoulShine1969

Rayna,

I'm sorry that you're going through such a stressful time. Contemplating any surgery can be difficult. I also have the BRCA1 mutation. And, like you I struggled with the decisions of prophylactic surgeries. I have watched those I love lose their battles with Breast and Ovarian cancer so the choice was easy for me. I wanted to eliminate any risk I could to be here for as long as I can. I can tell you as far as surgeries go, it's not bad. Pretty easy, easy recovery. You've been through cancer treatment, so you've been through worse. Medically induced menopause is manageable. Osteoporosis is avoidable with medications such as Prolia. I feel for you having this hanging over your head, but if you were my sister or daughter I'd want you to look at this as something you can do to reduce your risks.

All my best to you,

Rebecca

Meow0369

Rayna_666, I too am BRACA 1 positive and I had TBC four years ago and approx.. 3 years ago I had a complete hysterectomy. At my request, I had my uterus removed as well since there is small percentage of women with the mutation that can get uterine cancer. I didn't want to take any chances. I wanted peace of mind under my terms and the opportunity to raise my 3 kids. We can't change the fact that we have the mutation but we can make the decision on when to do the next phase. I was angry at my diagnoses since I was a dedicated person to a healthy lifestyle and it was difficult for me not to have control over my life.

My mother has BRACA 1 too and who has had BC twice in different breasts (she had her first bout in 1983 with mastectomy and the second in 2013 in other breast with mastectomy) took everything in stride and I am trying to follow this way of thinking. It has been a struggle to say the least but I had to look at the bigger picture. Before my BC diagnoses, I met with drs. at Stanford and advised me to have my ovaries removed because it's high risks. I had four aunts, my mother and a cousin age 28 (had BC already) that carry the mutation. Two of those aunts had ovarian cancer after breast cancer. One aunt had it spread into her abdomen and had five years to live and my other aunt had it as well and died of a blood clot four days later after surgery. At the end of day it's your decision but also think about if you are willing to live with the decision if you don't have the surgery. I hope this helps and I am sorry that you have to make this decision!

May I ask what kind of hormonal replacement the doctors were going to put you on? This was something not offered to me and I had my surgery when I was approx.. 44. My Onc said it's ok with him since being TBC. Others have said they don't recommend unless there are major problems with menopause. I'm looking into getting something, maybe Bioidentical hormone replacement.

MikaMika

I completely understand your concerns. Which tests your doctors recommend after the prophylactic surgery? Now your insurance has to cover CA-125 blood tests and pelvic ultrasound. I know, this is not reliable screening, but anyway... After surgery, as you read, your risk is about 10-15% and no screening?

I am BRCA2 carrier, so I also read different studies to find answers.

Rayna_666

@MelissaDallas Wow. I am sorry that you had to go through all that. It does sound miserable. It puts a lot into perspective. I had a GreatAunt that had it, but I was very young and do not remember much about it. Thank you for sharing your experience.

@navy1305 Thank you for sharing your story. I can see why you made the choice you did. I remember having heavy periods back before birth control. The pill regulated and controlled it and since Mirena, I almost never get it. Maybe I am crazy to think I should experience that again!

@Jelson Yes, my oncologist brought that up about the fallopian tubes. I appreciate the link to the article. I will definitely read that. It is a thought to look into that. I do think that if I do, I will wait a year if I can. I am due to get the Mirena out in May I think. I will have to travel to my home state (1,200 miles) at some point too as my father was killed in a motorcycle accident and we have yet to bury his ashes as my sister is stuck at her home in Peru (long story) so I want to be available as needed (and I am the executor of the Estate). Crazy times.

@SoulShine1969 Is Prolia a synthetic estrogen or something else? Thank you for the input. It is good to hear that the surgery is not that bad. I too have had a lot of family history of all different kinds of cancer. (Mom, aunts, uncles, grandparents, and my sister is younger than me and had breast cancer at the same time as me.) I am definitely factoring that in as well.

@Meow0369 Thank you for sharing your experience. As you can see in my reply above, I also have an extensive family history. My sister was only 29 and I was 32 when we had cancer at the same time. I am not sure what my oncologist had in mind in terms of hormones. I had mentioned my concern about osteoporosis and he said that I could take estrogen. I should have asked so I could look it up. I am due to see him in a month so that is one thing I will remember to find out.

@MikaMika I don't think they mentioned any tests after the surgery. The only screening I have had since I was deemed a survivor is general blood tests and tumor markers. I think I may have a pelvic ultrasound in May when I see my gynecologist but thus far, I have not. I will continue reading studies as well.

Anonymous

Prolia is a monoclonal antibody that helps to ensure bones dont fracture in women with postmenopausal osteoporosis. No estrogen involved, just reduces the risk of fracture if you develop osteoporosis. Its the same as Xgeva, which is given to manage bone mets (interferes with the cycle of development and breaking down of bone). Easy injection, thin needle, would maybe be given once or twice a year in your situation. There can be risk of osteonecrosis of the jaw when using these bone supports, but that tends to be rare and can be managed through good dental hygiene and regular dental checkups to ensure it is flagged early.

Im 43 and just found out I am BRCA1 (yeah, little late to find that out) and while my MO was already supportive of this surgery - mostly on my request so I can get off the monthly giant subcutaneous Zoladex injections that shut down my ovaries - with this new information they now want to make sure I get it done as soon as Covid situation makes it possible to eliminate that ovarian risk. You may want to check, however, with female family members about how they handled menopause, so you can brace yourself if needed, both mentally and with consideration for potential hormone replacement. I already knew my mom had an easy time and the only luck I have had in all this is that I have had barely any menopausal symptoms.

Regarding the surgery - if you aren't at any major risk now and have other more pressing matters to attend to, why not consider it for next year? You could flag concern about the ovarian cancer - I wonder if that could be an argument for a pelvic CT in the meantime to hold you over until you are ready.

Rayna_666

@SondraF Thank you for the input. I will do some more research. I only have a couple of female relatives left but I am sure they could give me an idea of what they and others that have left this plane of existence have gone through. That is a good idea.

Yes, I am for sure going to wait a bit. There is just too much right now for me. I know my gynecologist mentioned doing a pelvic ultrasound in May but I will maybe ask my oncologist about a CT.

2019whatayear

I am BRCA2 . I had a preventative BSO laparoscopically and it was an easy recovery as far a surgery goes. I was 49 so older than you I had chemo pause before the surgery and honestly, I used to have lots of headaches and bloating and mood swings that I no longer have, so I'm (knock on wood) happy with menopause.

FWIW a pelvic ultrasound is more accurate than a CT for ovaries and what not- so I would say def. get the pelvic ultrasound. You can also check out facingourrisk.org to connect with more info and other people who are BRCA mutants

MikaMika

I would not recommend a routine CT scan for pelvic. Insurance also will not cover it. BRCA mutation means that tumor suppression genes do not work properly. Per my understanding, extra radiation from CT for your pelvic area is not good.

Rayna_666

@2019whatayear Thank you for sharing your experience. I also had chemo pause. I remember I got hot flashes like mad. It was crazy to me because I am usually always cold! Thank you for the website suggestion. I will definitely check it out. Always good to meet other mutants!

@MikaMika I am definitely leery of extra radiation. I even cringe at dental x-rays. My gynecologist suggested a pelvic ultrasound and it seems like that is the best bet in terms of safety and effectiveness.