ovarian cancer risks...?? sorry to put this here

Wallycat,

I have a large ovarian cyst that was present pre bc dx (by a few months). I was told to leave it by that gynae.

Post bc I was advised by another gynae 'we always take these out'. I am not sure what my CA 125 was, but was told it was hard to identify just what the cyst is. But that it is 'almost certainlt b9'

In am scheduled for a bi oophrectomy (with tubes and ovaries removed tomorrow).

I want them out, they feel like ticking tome bombs.

here in Britain we cannot request exams if we are asymtomatic, but I had bleeding and that's what prompted u/s and MRI exam.

you are right this hell never ends.

wallycat: Can you please specify where you read that BC puts you at higher risk for ovarian cancer even without BRCA mutations? My understanding is that that applies to women DX with BC before age 50 (i.e., premenopausal), because premenopausal BC is more likely to be based on a genetic mutation. I was DX with BC at age 41 and therefore qualify to participate in a clinical trial to find early markers for ovarian cancer, even though I did not do the BRCA test. Info is at the link below:

http://clinicaltrials.gov/ct2/show/NCT01121640

All locations are still recruiting, and it mostly involves two blood draws a year. If your markers go up by a certain amount, then you are referred to have a transvaginal ultrasound. What I like is that they send me the results, too, so I now have a record of my CA-125 and HE4 levels (I got randomized into the 2nd arm). I recently read a research summary saying that it's not the absolute level of CA-125, but the change in the level over time that signals trouble. So even if your sister's reading is still within the normal range, maybe it was elevated compared to a previous reading?

I understand your anxiety about ovarian cancer. I do still get pelvic exams, but all that a doctor can do during the pelvic exam is press down on your abdomen to feel if the ovaries are enlarged. So it's the same story as with BC: we have to be aware of our bodies so we know when something feels "odd" and we can get it checked out as soon as possible.

Snorkeler, here is one link:

"The ovary is a common site of involvement for metastasis. Ovarian involvement is seen at autopsy in about 10% of cases of breast cancer."

...

Lobular carcinomas, including those of signet-ring cell type, spread to the ovary more frequently than those of ductal type." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3167999/

Hi

when I inquired during dx about my ovaries-no one on my team felt they should come out. Since I am a "less is more" person, that was fine with me. However, here is my question--now that I am 5 years out- and post-menopausal (due to chemo, lupron, etc) if I have my ovaries out, will menopause be "worse"??????

I have had two CA 125 tests, one done by my NO and one by my gyno. When I told them I had had ILC and that it often involves female reproductive organs, my gyno had no problem standard-ordering both an US and the CA 125 (which she said often are not so accurate, but she wanted a baseline). She gives me an US every time I go in for a pelvic.

I've also familiarized myself with the early signs of ov. c. There are early signs that many women ignore till it's "too late", thinking they are symptoms of meno, or something else.

I'm menopausal but still kept my ovaries and uterus, etc. My oncol. didn't think I needed to have them removed.

Claire in AZ

When you are post menopausal the most important thing you can do is try to maintain a low body weight. The less body fat you have the less estrogen your body can manufacture.

Hiya Wallycat,

How sweet of you to think about me! Here is the low down: I had the op last Thurs , so a week today. The left ovary was non-existent! it had twisted on the fallopian tube and died. When I asked doc why he said 'Post men ovaries can die off and it's often the left,' - well, I thought that was strange and consulted Dr Google who confirmed this!

The right ovary- the cyst was endometrial in nature, but I am still awaiting the final pathology. It was stuck to my bladder and other areas by adhesions from my appendix scar (removed at 11 years). I think that's why I was having pain. I also had a Transobdurator tape put in (to stop urine leakage) and a posterior repair to my bowel (all from childbirth and weakened muscles) fallopian tubes out too.

Had I just had the oophrectomy - It would have been easy peasy, but the other stuff is a bit painful.

How are you doing?

Momine, sorry I did not see your post til now. We have the NHS here that is free to all, we also have growing 'private healthcare' industry. We cannot have any tests or investigations unless we are referred by our GP, but I do think that might be changing now.

So, for my bc dx/treatment/surgery/ and my recent op - it is all free I paid nothing. I am also a Coeliac and get a lot of my foodstuff free on prescription too and Letrozole.

WSx

Wallycat - I'm sorry I haven't been able to read all the way back, but is a gyn/onc doing your sister's surgery? If so, he or she might be able to stay with a laparoscopy even if things look suspicious. A friend of mine had a full cancer staging and hyst/ooph done with a lap. My gyn/onc was able to do mine with a lap too and even though I didn't need a full staging, he was able to take out each organ whole and do the pelvic washings and have a good look around without the big incision which was great. Of course, the dr will need to do what's best for your sister, but I hope she can stick with the smaller cuts. All the best to her for a successful surgery and easy recovery!

My oncologist was already talking to me about possible ovary removal in my future at our very first visit, and possibly even hysterectomy-- but this may be because my mother had uterine cancer back in the 70s and then DCIS in the 90s (today, at 71 years of age, she does have medical problems, but nothing that keeps her down, and no cancer.)

So far as I am concerned, they can take out anything they want if it will reduce the frequency of tests and waits for results of tests and risks for anything more severe than a hangnail. I can handle some physical effects and complaints, but anxiety and I do not get along very well, and I'm a 1st class worrywart.

Winter, I hope you feel better soon. I had massive adhesions from a botched C-section 20 years prior to my hyster and it definitely caused me significant pain.

I realize that on the NHS, you need a referral from your GP for tests. But since you do also have a private health sector, can't you just go to a private lab or clinic and pay yourself for whatever test you want?

I used to be in the US and, yes, unless you are poor or retired, you need private insurance of some kind. Currently I am in Greece, where we have a public/private combo system. I happen to have very good private insurance and I was treated entirely through the private system here.

However, I can walk into any diagnostic lab here and get pretty much any test I want, as long as I pay for it. For example, my mom visited recently and she got a cold. Because she is prone to pneumonias, she was worried. I took her around the corner and got her a chest X-ray and a basic blood panel: red and white blood cells, hemoglobin, platelets. The lab tech asked why I wanted the X-ray, so she would know which views to take and what to tell the doc who writes the report. The whole thing took about half an hour and cost 35 euros.

Hi Wallycat,

No nothing on the pathology of the cyst at the moment, he did say he was going to write to me. I don't think I have to go back to see the consultant. I will add that for a time I was scared as they couldn't seem to ascertain what it was. I can let you know when I get the histology back if you would like? - I am now 2 weeks post-op so hopefully it will be soon.

I am confused is it yourself or your sister that are having investigations for a 'mass?'

Wallycats,

Gosh, that's tough the both of you going through this. I do know that pre-men cysts are very common. Post men they are not so common, but likely to be benign.

It's awful isn't it to have more medical stuff post bc? - I wish your sister well for tomorrow. I have 2 sisters too. 1 has severe endo (loads of pain) . The other endo too, which appeared to cause her infertility.

Momine, No, no walk in medical stuff like that. That's amazing. I went to Greece a few years ago with my youngest son. We went to Kefalonia. Happy times.