BRCA1 want ovarian cancer screening without pushing for surgery

Vicklepickle

I am BRCA1 Positive, and already had breast cancer and a double mastectomy. I am part of a surveillance program in Chicago - that I HATE - because my doctors are constantly pushing me to have my ovaries out. I am 48 and already had 2 children. I am in chemo induced menopause, so their argument is that they aren't working anyway to why keep them? I intuitively feel like having them out is the wrong decision for me. I already have low libido since being in menopause and don't want any further side effects. I vascillate between just doing it and holding my ground. It is so difficult going against all the doctors recommendations because I feel like I am always doing something "wrong", "Foolish" and "stupid". I don't want to get ovarian cancer - breast cancer was hell. I just wish I had some professional guidance regarding this. I try to keep a balance in my life between living my life, and reading the research and focusing on the prevention part. Does anyone know of a practice or physician who is more supportive but will still provide some preventive screening/advice? Anyone else dealing with the same pushy doctors?

inks

So sorry you feel forced into surgery. This is my personal experience - as I was finishing chemo my relative was diagnosed with ovarian cancer, her mom had passed from ovarian cancer 6 years before. That is the main reason I wanted to have my ovaries out ASAP. If you do not have history of ovarian cancer in your family I can totally understand why you do not want to have surgery. I hate pushy doctors, the decision is yours. Are they pushy because you have good insurance? My surgery was $13000. Easy money with very low complications.

DiveCat

Are there any specific high risk surveillance programs in Chicago or nearby you could consider? You may want to go ask or check out on FORCE.

I am sorry you are feeling pressured. Unfortunately I think you may always get some encouragement to remove your ovaries as a BRCA1+ person at this point - especially as you are now in your late 40s - as detection for ovarian cancer is just so poor and unreliable at this point in time, and diagnosis often comes at later stages, even amongst those being screened. That being said, whether or not to have risk reducing surgeries IS your choice and that should be respected.

Has anyone talked to you about removing the Fallopian tubes only for now? There is increasing research to show a great number of ovarian cancers may actually originate in the Fallopian tubes, not the ovaries, and I know a few BRCA+ women who have opted to remove tubes only and leave one or both ovaries for the time being. That way you can still hold on to the benefits you feel are important to you from retaining your ovaries and perhaps benefit from some risk reduction.

Vicklepickle

Thanks for the replies, my cousin was recently diagnosed with ovarian cancer - but so far she is the only one. There had been a longer history of breast cancers. I can appreciate that my doctors want my ovaries out to reduce my chances of getting ovarian cancer - but no one has talked to me about any other options. No one has even mentioned diet/exercise...so that has all been my own research. They have also suggested I have a full hysterectomy...each time I go there they want to take more of my organs! I just think that cutting it all out is not the answer. I do have good insurance, so I wondered about that motivation for them. And what about the benefits to heart health by keeping the ovaries. We also have a history of heart disease on BOTH sides of my family. But the doctors don't seem to care about that because their only interest is in preventing the ovarian cancer. It is so frustrating, and I would LOVE to talk to a physician who can provide me with some other surveillance options without making me feel foolish. I have looked for other programs/studies but have not found anything yet. Thanks for the responses.

dlb823

Vickie, are you familiar with Dr. Keith Block and The Block Center, a very highly rated integrative medical facility in Chicago? Here's a link: http://www.blockmd.com/ They might be exactly the type of place you're looking for to get a second opinion. I've read in the past they're #2 in the world for integrative cancer care, after a place in Germany. Deanna

Vicklepickle

I have not heard of them, but will look them up right now. Thank you so much!!! I just needed some direction!

inks

Divecat's suggestion for the clinical trial about salpingectomy is excellent, here's the link for the clinical trial https://clinicaltrials.gov/ct2/show/NCT01907789?term=brca1&rank=154, since one arm is surveillance only. this one is only in Illinois and Texas, but sometimes there are similar trials at other locations.

I would get another opinion about the need for hysterectomy. I only had the ovaries and fallopian tubes removed. There was also an article or study and according to that hysterectomy is not necessary, more complications, risk of all sorts of prolapse etc.

Dianarose

they would not test me for BRCA 1 or 2. Said it didn't matter. I did my own research and wantedmy ovaries out. They said it was not needed as my scans were fine. I pushed until they took them out at the same time they did my exchange. Doctor said my ovaries looked normal and healthy. I was so excited until the path report came back saying the BC had spread to one ovary putting me at stage 4. Sucks.

It has not effected my sex life in any negative way at all.

DiveCat

inks, thanks for liking to that clinical trial! Here's a link on FORCE that also discusses this research and the option of "interval salpingectomy" as well: http://www.facingourrisk.org/understanding-brca-an...

Yes, I am surprised they are recommending total hysterectomy as well. That is not in line with the expert guidelines or recommended protocols for risk reduction surgery for BRCA+ women.

Are the doctors you are seeing high risk/BRCA specialists? It makes me a little suspect that they are not if they are pressuring you for a total hysterectomy absent any other concerns (that you have not advised you have). If they are not, I really think you need to get in touch with and/or find a team more educated and up to date on BRCA research and guidelines. If you cannot find any in your own search, please do go and contact FORCE as I am quite sure they can give some you some direction on who you should get in to see - they have a healthy supply of contacts and resources that way. They also have a toll-free helpline (Toll-free Helpline 1-866-288-RISK (7475)

There is also a FORCE community support group in Chicago as well; if you contact them/their outreach coordinator they might be able to point you in direction of who some of their own members see: http://www.facingourrisk.org/get-support/local-gro...

SA8PG

This is a great discussion. I am also being told to get the ovaries out ASAP. I wanted to do the ca-125 and transvaginal ultra sound every 6 months but Drs are saying no. I also wonder about the quality of life issues: immediate menopause, heart & bone health & the vaginal dryness issues affecting your sex life? Obviously living is the most important thing just trying to weigh options as well. I'm 39. Maybe there just isn't any? :

Vicklepickle

The doctors advising me are part of the Northwestern University Ovarian Cancer Biomarker study - so they are doing research on BRCA positive people in the hopes of finding something that will help with early detection. I am going there every 3-4 months for surveillance - so I would hope they have the most up to date info. The problem however, is it appears that their recommendations are based on the most current research fining which changes about every 3 months. So a while ago they were recommending just the fallopian tubes, then the next appointment they said fallopian tubes, ovaries and uterus, then the next time they suggested another organ - (I can't even remember which one I was so aghast) because there was a finding that there are rare cancers that present on (whichever organ they were talking about) so "we may as well remove that while we are in there" . So I don't really have that much confidence in their recommendations anyway. I feel like they just don't have enough information about this horrible disease to be making such drastic recommendations. I don't have any other health conditions - I do all that I can to keep healthy (with the occasional splurge) so recommending a total hysterectomy seems a bit much. And worse, I told them that I am not in favor of surgery at this point, and I specifically asked them to stop pressuring me and treating me like I'm an idiot and they never change. Finding new doctors was something I have needed to do for a while, I am glad I have found this forum!

Vicklepickle

I just looked at that clinical trial and the upper age limit is 47, I am 48. Darn. It looked like a good one. I am surprised there is nothing being done at University of Chicago - I have heard their cancer center is fantastic.

SA8PG

Amazing. How do you decide what to do when the suggestion changes every 3 months?

What did you think of the clinical trial at MD Anderson? Would they make an acception for you since you are so close to the cut off age or is that not something you want to consider?

Vicklepickle

Thats why I'm having such a hard time knowing what to do. My gut says to wait. I just don't believe in cutting out organs when when they have a protective effect for other things like cardiovascular. The doctors at Northwestern are ONLY considering my ovarian health. I will contact the people at MD Anderson - I am also looking into the Block center for a second opinion.

knmtwins

Vickle- I'm on the other side of the fence, not BRCA and want mine out, and they can just take everything. So, I scheduled an appointment with my OB/GYN to discuss things. As this is part of a 'cancer' conversation, they got me in rather quickly. I'm still on the fence, gut says at least get the ovaries removed. I'm a pretty firm believer in the 'gut', so try to get apts with some other doctors and see what they have to say. Good luck to you, this journey is quite confusing since it is being researched so much right now, hence, science isn't the black and white we want it to be.

Vicklepickle

My cousin was BRCA positive, no cancer, but opted for mastectomy and to take the ovaries. She is happy with her decision. I believe we all have the right to make our own decisions and they will be different for everyone!

Good Luck!

JJ62

Vicklepickle- I couldn't wait to get mine out. At my bc diagnosis (at 48) I knew of no bc in the family but had lost my mother when she was 48 to ovarian cancer. It turns out she had two primaries - ovarian and endometrial. I have since learned that her cousins and their children have had way more ovarian than breast cancer. I only knew my moms history when I pursued a complete hysterectomy. I made the decision that was right for me at the time and am grateful there was no pressure, or resistance when I said I wanted it all gone. No regrets, and I am dealing with the side effects as I face them. I feel empowered and confident moving forward. I wish you all the best making the right decision for you, and it truly is only your decision to make.

Trvler

I don't know what the right decision regarding the surgery is. But I don't like the idea of anyone feeling forced to do a surgery they are uncomfortable with. I am really in the get another opinion camp.

Vicklepickle

Thank you all for this discussion! As a result, I quit the program at Northwestern University, and I am going to meet with the Doctors at the Block Center in Skokie. I am so appreciative for all the feedback. It was much easier to make my decision once I felt supported!