[rainbow8]

I saw a different gynecologist who suggested I should have my ovaries removed because my mother died of ovarian cancer. I tested negative for the gene but she said my risk is still higher than the general population. My regular doctor, who is on medical leave, never suggested I have my ovaries removed. I'm past menopause but I don't want surgery. There is no good screening for ovarian cancer. Maybe I should do it. Does anyone have knowledge or personal experience with my situation? Thank you.

[healingme4me]

Isn't the risk supposed to diminish after menopause? I'd get a second or even third opinion.

I couldn't get insurance to cover BRCA, although I wonder with my change in insurance since October, if I could look into it again. My previous gyn had me on bi annual ultrasounds. My last pelvic exam the new gyn said they felt fine.

It does stink to be on high alert almost constantly.

Then, this must have felt like a bombshell, I know it would feel that way for me.

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[rainbow8]

Originally Posted by healingme4me

Isn't the risk supposed to diminish after menopause? I'd get a second or even third opinion.

I couldn't get insurance to cover BRCA, although I wonder with my change in insurance since October, if I could look into it again. My previous gyn had me on bi annual ultrasounds. My last pelvic exam the new gyn said they felt fine.

It does stink to be on high alert almost constantly.

Then, this must have felt like a bombshell, I know it would feel that way for me.

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So you're not worried about it? I wasn't until I saw this new doctor. She said ultrasounds alone don't help, that I need the CA125 too even though there are many false positives. Neither test is good though. She said 6 month exams aren't useful either. I guess that's why she suggests women at high risk get their ovaries removed. But 6% chance isn't very high.
The Dr. said I have more risk now, not less.
What does your Dr. think about the CA125 blood test? Do you still get ultrasounds every 6 months or yearly? Thanks for writing me!

[healingme4me]

Originally Posted by rainbow8

So you're not worried about it? I wasn't until I saw this new doctor. She said ultrasounds alone don't help, that I need the CA125 too even though there are many false positives. Neither test is good though. She said 6 month exams aren't useful either. I guess that's why she suggests women at high risk get their ovaries removed. But 6% chance isn't very high.
The Dr. said I have more risk now, not less.
What does your Dr. think about the CA125 blood test? Do you still get ultrasounds every 6 months or yearly? Thanks for writing me!

I didn't say that I wasn't worried about it, it has deeply affected me and I worry about leaving this earth too soon. I just question the 'new' idea that removal of ovaries will be the answer. And I'm still curious about hearing from the other poster the information that she claims.

My doctor mentioned the false positives with the CA 125. I have bi annual ultrasounds. Have maintained healthy weight for several years. That's also supposed to be a preventative measure. Take birth control as another prevention measure.

Where's the 6% figure from? I think I remember you writing about 6% and another percentage. Is that even after BRCA results?

I'd ask for scientific proof before invasive surgery. I'm not a what if fan, as far as alarmist reactions. If that's what this is.

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[healingme4me]

I just read that your risk was 6% as compared to 2% for those without family history.

After my MS diagnosis back in '07 I've realized there's one thing that happens to MS patients, we become very in depth researchers and analytical. Well, at least the ones that I've come in contact with. Already before now being at risk for ovarian cancer, I live by some type of statistical roulette.

The other post says, most women now have their ovaries removed, not that there's a statistical number to go with it. In my anger about statistics, and in a cynical hrrrmmmmppp...how très chic. I guess also if a woman wants a full mastectomy that's also her right.

I want numbers and evidence laid before me, personally, so that I can make my own choice. Surgeries on someone with MS are no joke. Hospital stays are a practical no no. My cns is amiss and anesthesia takes me a little while to recover. I've turned down a couple treatments because the side effects are worse than my illness that's been in remission for several years and ten years before that. So my body, my choice. Especially when the treatment is based on 'reduces the chances' [of progression of illness ]. Give me a cure, at this point[ms] and we'll talk. Same goes with removal of my body parts.

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[rainbow8]

Originally Posted by healingme4me

I just read that your risk was 6% as compared to 2% for those without family history.

After my MS diagnosis back in '07 I've realized there's one thing that happens to MS patients, we become very in depth researchers and analytical. Well, at least the ones that I've come in contact with. Already before now being at risk for ovarian cancer, I live by some type of statistical roulette.

The other post says, most women now have their ovaries removed, not that there's a statistical number to go with it. In my anger about statistics, and in a cynical hrrrmmmmppp...how très chic. I guess also if a woman wants a full mastectomy that's also her right.

I want numbers and evidence laid before me, personally, so that I can make my own choice. Surgeries on someone with MS are no joke. Hospital stays are a practical no no. My cns is amiss and anesthesia takes me a little while to recover. I've turned down a couple treatments because the side effects are worse than my illness that's been in remission for several years and ten years before that. So my body, my choice. Especially when the treatment is based on 'reduces the chances' [of progression of illness ]. Give me a cure, at this point[ms] and we'll talk. Same goes with removal of my body parts.

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I'm sorry. I didn't know you had MS. I wouldn't have my ovaries removed because one doctor who is not even my regular doctor, suggested it. I'm waiting to talk to my internist, and I would get other opinions before rushing into surgery. I haven't found any statistics about ovarian cancer and prophylactic surgery. I also wondered where the other poster got her information. Thanks again for writing. I wish you good health!

[unaluna]

Google prophylactic oophorectomy. I saw the same stats, six vs two pct, stg like that. The basic problem is, having the operation ahead of time isnt that good for you, BUT if you DO get ovarian cancer, youre gonna wish you had done it. Another but, they cant tell until after you have it and its kinda too late.

it also seemed like your current age was a big consideration. If you were around 35 and done having kids and had the operation, it was more worth the risk because you had more to lose by dying young. But now that we are kinda old - idk. I am trying to stay away from anything that isnt absolutely necessary. And i too would opt for chemical over surgical.

[healingme4me]

Thanks for directing to look there. Thing is it is recommended IF there's a Strong family history. My family history wasn't strong enough to qualify for insurance to pay for BRCA testing. The sugery can reduce the risk of breast cancer, as well if needed. Yet it reduces to the 6% figure that's mentioned by the OP , which is where her risk already is because she doesn't have the BRCA gene mutation.

Sooo...even being 40, without knowing my BRCA results, albeit I took the test, and without any other family history of breast or ovarian cancer, I think I'll just wait and see. Much like I wait and see with MS, although one is what it is, the other is, well...*sigh*...i guess stressing about either isn't going to give a crystal ball answer.

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[healingme4me]

Oh my, the more I've researched prophylactic oophorectomy, the more alarmed I am that this is even recommended.

One of the research articles mentioned increased mortality rates, deleterious outcomes. Cardiac disease increase, dementia/cognitive decline, lung cancer along with osteoporosis and depression/anxiety, etc.

Another article mentioned a phantom type cancer that mimics ovarian cancer.

All risks reduced if surgery occurs after age 65.



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[unaluna]

Thats what i thought it said - its horrible to get the surgery when youre young, but at least youre still alive. The risks reduce when youre older, but i did not hear them say they have a lot of statistics for older women. Is it going to turn out like prostate cancer for men - that people die WITH it, but not FROM it? And a lot of other stuff us old folks get. We're not cars - we dont HAVE to get stuff taken out or replaced or whatever. We run just as good on 3 wheels as on 2! I SAY i dont want to be just a statistic - but i do try to keep my engine humming along .

[rainbow8]

Originally Posted by unaluna

Google prophylactic oophorectomy. I saw the same stats, six vs two pct, stg like that. The basic problem is, having the operation ahead of time isnt that good for you, BUT if you DO get ovarian cancer, youre gonna wish you had done it. Another but, they cant tell until after you have it and its kinda too late.

it also seemed like your current age was a big consideration. If you were around 35 and done having kids and had the operation, it was more worth the risk because you had more to lose by dying young. But now that we are kinda old - idk. I am trying to stay away from anything that isnt absolutely necessary. And i too would opt for chemical over surgical.

Thanks, unaluna. I appreciate your replying in my thread. Today I'm more scared. My internist agrees with the gynecologist! She said new guidelines just came out but it seems like same information. The ultrasounds find it when it's too late! She suggested waiting a couple of months to discuss it with my original gynecologist who is returning. Meanwhile, there's an organization called FORCE I'm going to call, and I have s name of a gynecologic oncologist. Maybe I can see him for a consultation. I have daughters. I thought they were safe! If I have surgery, how will they know what their family history is, one close family member or two? I don't want to think about this but I have to.

Yeah I'm kinda old but I would hate myself if I don't do it and get cancer! Like you said. My Dr. implied that we don't know if I'm 6% risk or more because there are different genes they don't know about.

[healingme4me]

Is your mom the only one that had ovarian cancer? Is there breast cancer history?

I just found through force, they've up the mammogram age to 45. Figures, I hadn't seen that before last January.

Sounds like a tough decision. What do your daughters feel? Your husband?

When I clicked on Nutrition on FORCE's site, it mentioned how sometimes cells become damaged by various environmental factors and voilà. So, I also take that into account when I think about my mom.

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[rainbow8]

I called the gynecologic oncologist's office and they asked me to send my BDCA records. They will call me Monday to tell me if the doctor wants to see me or not.

I called FORCE twice but no one has called me back yet. I want to know what these new guidelines are. My mother had a few 1st cousins with breast cancer, and their daughters had it too. I don't think they got tested though. No closer relatives. I'm really surprised the drs. recommended the surgery. I'll see what the oncologist thinks. Hopefully I can get some answers.

If you tested negative for the gene, the risk is really not much increased over the general population. They will be testing me soon as both of my sisters had breast cancer and one also had ovarian cancer and colon cancer. They know that one of the genetic mutations did not show up in the testing of my one sister's cancer (they did much more extensive genetic testing on her because she had a bone marrow transplant), so that's a good sign, but the other sister's cancer wasn't genetically analyzed at the time so there is still an unknown at play. I don't tend to get too worried about it and unless there is decisive genetic risk shown I wouldn't ever consider having organs removed. A small increase of risk simply due to familial connection would not be enough to put me under the surgical knife for elective surgery; surgery comes with its own risks.

[rainbow8]

That's what I thought, Lola. I'm not high risk yet two doctors are recommending surgery! Probably because they find ovarian cancer when it's too late. There's nothing equivalent to a mammogram, and there's no cure. Good luck with the testing and thanks for your input.

[healingme4me]

I saw a Medscape article on Ovarian Cancer within the past couple of months. I don't recall reading anything new on the topic of Ovarian Cancer. I signed up there, years ago as recommended by a friend in seeking answers about MS.

For me, surgery would be a last resort. I just don't have any other family links. My gram is going on 85, with just diabetes since her early 40's, some glaucoma, too. She did develop high blood pressure and had a mild heart attack years ago. Still going strong despite what I wrote here. Her and my mom had D&Cs and fibroids during premenopausal years. I've had a pretty healthy reproductive system overall.

If there is something new, please keep me posted.

Additionally, my mom did have a lump removed from her breast when I was either in high school or college. My mom battled weight for years and years. There are things different of me from her. So, for now, I'll chalk it up environmental. And who knows maybe my risk isn't much more elevated than most. And who knows, just who knows.
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[rainbow8]

healing, you're right. No one knows. I'm not at all comfortable with having surgery but I want to know what the experts think. I have an appointment with the oncologist next week. Even if he recommends surgery which I doubt, I'll get other opinions. Maybe he'll suggest I get more of the genetic tests, or see a genetic counselor. I'm not so worried because at least I'm gaining information. I finally heard from FORCE, but I had to email again with my questions so I'm still waiting. I will post any new developments here. For some reason, I'm more calm now.

[rainbow8]

Update: I saw the gynecologic oncologist and he said there are new genetic tests that weren't available when I was tested seven years ago. So, I'm not a true negative. I will see a genetic counselor, probably get the new tests, and will go back to discuss my options with the oncologist. So it all depends on what the new tests show.

[healingme4me]

Pardon the financial question; Are these tests covered by insurance or are they out of pocket?

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[healingme4me]

My own update! Aha...I can get brca covered once and for all and anything else. My half sister who is sixteen years younger had thyroid cancer. Combined with my mom's ovarian I meet the National Comprehensive Cancer Network' s criteria for genetic counseling.


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[ECHOES]

My friend has a hysterectomy with oophorectomy due to family history and never regretted it. Your daughters may have the benefit of even newer tests available in the future if they have to consider the same surgery for themselves.

I'm sorry you are going through such unsettling times.

[rainbow8]

Update: All my new genetic testing came back negative so I went back to see the gynecologic oncologist. He STILL highly recommends surgery which surprised and scared me. I asked if he'd recommend it to a family member and he said yes. My risk is 5 -7%; the general population has a 2% risk of getting ovarian cancer. The reason he said more women are having their ovaries and tubes removed is, like I said before, there are no good screening tests and no cure for this cancer. I'm past menopause so at least I wouldn't have to worry about those effects of surgery. If I'm lucky it would be a laparoscopy but you never know.

This doctor was recommended by my internist and he has an excellent reputation. I liked him very much too. Even though the tests aren't useful, it's all there is, so I had a CA-125 blood test and am getting a pelvic ultrasound, which I get every year.

Of course I'm getting another opinion but I know it's ultimately my decision. I hate the idea of surgery but worse would be getting cancer and dying. This would never have come up if I hadn't seen a new gynecologist who said "most women like me get their ovaries out nowadays ." My Mom was a couple of years younger than I am now when she got oc. They didn't have genetic testing then.

My gut feeling is to have the surgery even though I'm scared and I hate pain! Has anyone had this kind of surgery?

[rainbow8]

Originally Posted by ECHOES

My friend has a hysterectomy with oophorectomy due to family history and never regretted it. Your daughters may have the benefit of even newer tests available in the future if they have to consider the same surgery for themselves.

I'm sorry you are going through such unsettling times.

ECHOES, I'm sorry I never responded to you. It's nice to know you're still reading PC. Do you know what the recovery was like for your friend?

Originally Posted by rainbow8

Update: All my new genetic testing came back negative so I went back to see the gynecologic oncologist. He STILL highly recommends surgery which surprised and scared me. I asked if he'd recommend it to a family member and he said yes. My risk is 5 -7%; the general population has a 2% risk of getting ovarian cancer. The reason he said more women are having their ovaries and tubes removed is, like I said before, there are no good screening tests and no cure for this cancer. I'm past menopause so at least I wouldn't have to worry about those effects of surgery. If I'm lucky it would be a laparoscopy but you never know.

This doctor was recommended by my internist and he has an excellent reputation. I liked him very much too. Even though the tests aren't useful, it's all there is, so I had a CA-125 blood test and am getting a pelvic ultrasound, which I get every year.

Of course I'm getting another opinion but I know it's ultimately my decision. I hate the idea of surgery but worse would be getting cancer and dying. This would never have come up if I hadn't seen a new gynecologist who said "most women like me get their ovaries out nowadays ." My Mom was a couple of years younger than I am now when she got oc. They didn't have genetic testing then.

My gut feeling is to have the surgery even though I'm scared and I hate pain! Has anyone had this kind of surgery?

Do you have the cash to cover that kind of surgery since insurance is unlikely to cover it as it will be elective?

[rainbow8]

lola, I know it's not covered but I heard there are ways the dr. can get it covered. If this Dr. says most women he sees have the surgery, there must be a way. It's a good point. I will definitely have to ask about the cost! Thank you.