Question about ovaries?

Mary Jo · 08-26-2007, 04:51 AM

Hello everyone,

I've been fretting lately about having my ovaries intact. I wish I wasn't but I am. I was er/pr negative by the way and have already had my uterus and cervix removed almost 10 years ago because of fibroids in my uterus.

I have not been tested for the brca 1 or 2 gene so have no idea if that would be a risk factor to me. I know we can't remove every organ in our body to try to eliminate the risk of cancer but always worry I am going to get ovarian cancer ( a long with worrying about getting other cancers).

My question to you all is this: Are my fears justified or are my risk factors for ovarian cancer the same as cancer appearing anywhere else in my body? I'd love to know what those of you who have had this done think and who of you have had this done that were er/pr negative like me?

I spoke only briefly of my concerns about ovarian cancer at my last ob/gyn appointment and my gyn. didn't seem to think it was something I should have done ALTHOUGH I never really addressed the issue as a question but more as a conern I had.

Thanks in advance for your advice and factual information.

Mary Jo

Kimberly Lewis · 08-26-2007, 05:06 AM

Hi Mary Jo, I am not ERPR negative and was stage 3 at diagnosis with extensive vascular involvement. I did go ahead and do the ovaries and all possible sites.. I just felt it was important. Afterwards I was tested and found to be BRCA2 positive so my inner surgeon was right. I guess discerning between fear, intuition, and fact is so difficult during these times. You have to shake it all around and do what seems right to you in the end. I kind of felt best to do all the fighting I could while the battle was still at the stage 3 point. Some of my Dr's just shook their heads but after the BRCA they understood. It justified my discomfort. The surgery would be simple for you I imagine. Two years out is sweet! Enjoy your life -looks like you have a steadfast supporter by your side.

Sheila · 08-26-2007, 06:02 AM

Marejo
I am glad you asked this question...also something I have wondered about. I also still have my ovaries, had a hysterectomy (uterus and cervix) at age 28 due to hemmorrage...since recent tests how me peri menopausal...and I am ER PR neg...wondering whether to leave everything alone or get them out.

tousled1 · 08-26-2007, 07:08 AM

I had a hystrectomy way back in 1981 due to severe menstral problems. I was so young that they left my ovaries. I don't even think about getting them removed. I'm ER/PR neg and my feeling is that I just don't want any more surgery. Now if I were ER/PR pos I might think differently.

Becky · 08-26-2007, 07:21 AM

Mary Jo

I had my ovaries removed but for several reasons you don't have. The first is that I am only moderately ER+ but PR neg and it is well known that if you are also Her2+ with that kind of hormone expression, Tamoxifen does not work and can also produce the opposite effect (of helping the cancer grow). AI's or Faslodex work better in this case but you have to be postmenopausal (which I was not). Secondly, my paternal grandmother died of ovarian cancer. Thirdly, my gyne saw 2 objects which he could not identify on ultrasound (they ended up being follicles that did not ovulate - probably occured during a chemo session when that ovary said "No way - we ain't doing this anymore"!). Lastly, my uterus (which I still have) was thickened (15 mm when the highest measurement for "normal" is 5 mm). Thickening is usually caused by high or flucculating estrogen levels (usually during the perimenopausal time - Tamoxifen can make this even worse and cause cancer).

You do not have any of this. However, you should get the BRCA 1 &2 testing. If you are positive, you should have your ovaries removed because BRCA does not only cause bc but ovarian cancer as well. I did not test positive for the BRCA genes but did it anyway for all those reasons.

I believe however, that barring sound rationale, it is better to go through menopause naturally because your body chemistry is natural. I realize I am being slightly hypocritical as I had my ovaries removed but if you were like me, I would advise the same (and tell you to get your ovaries removed). Get BRCA tested and get your gyne to do a transvaginal ultrasound of your ovaries to see what they look like (and do the CA 125 tumor marker for ovarian cancer too). Take your time with this decision and talk to all your doctors on their opinions too.

Love,

Blanche · 08-26-2007, 08:00 AM

Becky, I've decided to have my ovaries removed, but I wanted to wait until November when school is out. My onc said to start taken tamoxifien until surgery and then swith to AI. I tested negative in Brac 1 & 2, I'm 3a erpr positive and her 2 positive. My question actuallly is is it true that Tam can cause cancer in er positive maybe I shoud change my mind , if possible could you give me some more informatin to discuss with my onc. I've been reading and loving this web site for months, I respect the information that you and so many other give. Thank you so much.

Becky · 08-26-2007, 08:50 AM

Dear Blanche

How strongly ER+ and PR+ are you? Are you still getting Herceptin?

These answers will help me answer your questions in relation to the information that is out there.

Blanche · 08-26-2007, 09:02 AM

Becky, Believe this or not I never asked. I have been somewhat of chicken to find out.

Blanche · 08-26-2007, 09:03 AM

Becky, and yes I am still on herceptin and have 6 more times of radiation.

Becky · 08-26-2007, 12:31 PM

Tamoxifen works fine and is not an antagonist if Herceptin is being given. You need to find out your hormonal status (how strongly or weakly you are positive) in order to make the ovary decision - how old are you? Do you want more children - what stage etc

Sherryg683 · 08-27-2007, 04:09 PM

I was thinking the same thing the other night..should I go ahead and have a complete hysterectomy. I am ER/PR - , never had the BRCA thing done. I need to push to have it done, my oncologist said he would do it but he was willing to bet I was negative. He doesn't seem to think I need to go through a hysterectomy either, with all the scans I have done. I am seriously thinking about having it all taken out though. Although I am not looking forward to the surgery. I am already in menopause so I don't worry about that aspect of it. Confused here also..sherryg

Faith in Him · 08-27-2007, 05:11 PM

I asked my Onc about this. I am like you Mary Jo, ER/Pr- so he felt that if I did not test positive for one of the BRCA genes, I would have no added benefit to removing my ovaries. But part of me still wonders if I should. One less cancer to worry about.

Blanche · 08-28-2007, 05:10 AM

I definately want my ovaries out, but I was just concerned about taken tamoxfixen for a couple of months and then changing to an AI because the research being done, but I think I understand now that while I'm still on Herceptin it should be okay. Prayfully I'll be able to finish Herceptin for the year depending on my Muga. Blanche

KRISS · 08-29-2007, 09:43 AM

Blanche, I am scheduled for a complete hyst. next month. I have only been on tamoxefin for 6 weeks. When I saw my onc on Monday for herceptin he said I would be swithcing to an AI after surgery. He also said it is almost like I was never on Tamox. since I was taking it for only a short time. He said it would hardly have any chance to do anything.

saleboat · 08-29-2007, 10:35 AM

Edith Perez discusses the findings from the big adjuvent Herceptin trials on breastcancerupdate.com (or is it .org?).

She states that for the Her2 patients studied, there is no difference is stats between those who are on Tamox and those who are on an AI.

I think there's a lot more to be learned on this subject and there is very little that is well understood.

Me, I'm keeping my ovaries. I'm more afraid of the health consequences of losing them at a young age than I am a possible ovarian cancer.

Jen