Recommended screening?

LB96

I have a risk factor / screening question regarding Ov Cancer:

When I concluded unsuccessful infertility treatment (in 2005..?) and diagnosed as "Unexplained" infertility by my Dr(s) I asked if I should now get some additional screening since my ovaries had been through so much and no pregnancy achieved to give them "a rest" (protection from fertility drug use). I was told "no - not necessary" due their being no proven increased risk for OvCancer due to use of fertility medications. I accepted that back then and moved on.

About two years ago at yearly gyno appointment, I was told the ovarian cyst I kept getting (and previously confirmed as persistent cysts on an ultrasound) were nothing to be concerned about. Only post menopausal cysts worth further investigating (because not ovulating then thus not normal to get them). Again, made sense so took it off my list of things to worry about.

Recently I came across an article about the diagnoses of "Unexplained Infertility" and how this subset of infertile women "are at a significantly increased risk for ovarian cancer" over other infertile women "regardless of whether they use fertility medications" (I used them though - and off and on for five years). The study said it is this "unexplained" factor that may be a (precursor? Marker?....) for ovarian (and uterine) cancer. So, infertile women in general are at at an increased risk, but "Unexplained" infertile women are being found to be at a significantly increased risk.

I called my Dr and asked again if maybe it would be a good idea to allow me yearly or bi-yearly ovarian cancer screening now due to this new finding (a vaginal ultrasound in addition to my mammogram). Again, I was told not necessary - that the "recommendations/guidelines" say I am at not at an increased risk and that my annual pap and pelvic exam is still all I need for early detection screening.

This time I didn't get that "whew" feeling. I was suspect (not at my Dr but more at the current guidelines/ recommendations) she seems obligated to follow. I was suspect because the published study says I am at a "significantly" increased risk, yet I am told once again not allowed preventative screening because don't qualify for it....?

I did read later, and was glad to see that at least women with a family history of ovarian cancer (and breast cancer), as well as Brac 1 or 2 positive can get screened because they are at a "Proven" much higher risk group, ...but I was a bit stunned when I read that 95% (95%!???) of ovarian and breast cancer isn't familiar - but ...sporadic? No previously known risk factors/family history at all?

So I'm feeling a bit uneasy again about my not being allowed/recommended to get screening.

So I guess my reason for posting this is- I want to hear some suggestions from some cancer survivor women who did not have a family history it, and what they would suggest screening wise. Am I right in thinking I should maybe push a bit harder now? I dont; want to be one of those annoying patients, but at the same time, I am thinking I need to be my own advocate now because the "recommendations" and guidelines" seem to have not yet caught up with the current studies coming in out there.

I was thinking I could maybe join a study as a way to get screening for myself -while helping set needed guidelines (more screening) for the future ...but not sure if I will qualify.

FYI about me:
- 45 years old, general good health and weight,- exercise daily
- Never had children (tried via infertility treatment
- Started to try and have kids at age 30, sought fertility treatment at age 35....
- "Unexplained" infertility diagnosis (after years of treatment off and on/five IVFs)
- "Dense" breast tissue (a new "risk" grey area in studies right now)
- Basil Cell skin cancer in my mid 30s (told unusual) and many "atypical" moles biopsied/ removed
- Get frequent ovarian cysts (which hopefully will stop with menopause)
- Only used the pill for a very short period (i year tops) back in my late 20s.
- No immediate family history of ovarian cancer, but one aunt had pancreatic and three had breast cancer.

Thanks for any input/suggestions you may have - but most of all, all the best to all of you out there. Prayers for getting and staying healthy to everyone!

mopar

WELCOME, LB
Wow! You are so thorough, concise and pro-active. My compliments to you.

I'm sorry to hear that infertility has been such an issue for you. I know how disappointing it must be. But I also know it must be frustrating to not have the 'agreement' from doctors to look into something further, especially when your research has given you such insight. I would say, keep going, and don't stop until you are satisfied. It's not that we WANT to find anything terrible, it's just that it's our bodies, and we're entitled to find out what's going on.

I can't give any feedback regarding some of your questions. I can tell you that I was the first in my immediate family to get OVCA, actually cancer of any kind that we know of. On my Dad's side there was stomach cancer (his brother), throat cancer (his uncle), thyroid cancer (another uncle). Nothing on my Mom's side. I did, however, have endometriosis, and it has been linked as a 'pre-cancerous' condition. I didn't even know I had cancer, until I was opened up for a uterine fibroid. Thankfully, I was referred to a gynecologic/oncologist by my ob/gyn, as my CA125 was slightly elevated (never had heard of that test before that), but could have been due to the endometriosis. I am eternally grateful to my doctor for having the insight to refer me to an oncologist.

I would at least try to get a CA125 test. If it is your first, it will only be a baseline, something to start with and watch for any rise in numbers. Of course, the numbers can be elevated simple because of an infection, stress, or even the ovarian cysts, and not be cancer. So, it's really just a small part of the big picture. In addition, I'm sure you know of the signs to watch for, although most would agree if you have all of these symptoms you could already be in an advanced stage. Again, not really concrete. I had a trans-vaginal ultrasound, and all it did was show the fibroid, and an enlarged ovary. Not really conclusive, but it was just a pre-surgical screening in my case.

I hope this has helped. I think most of these 'precautions' and tests are warranted in your case, and if nothing else, will at least give a reference point to start with. Please let us know if you have any success. We'd love to continuing hearing from you.

Thank you for your prayers - the same to you!

(((HUGS))) & Prayers,
Monika

LB96

mopar said:

WELCOME, LB
Wow! You are so thorough, concise and pro-active. My compliments to you.

I'm sorry to hear that infertility has been such an issue for you. I know how disappointing it must be. But I also know it must be frustrating to not have the 'agreement' from doctors to look into something further, especially when your research has given you such insight. I would say, keep going, and don't stop until you are satisfied. It's not that we WANT to find anything terrible, it's just that it's our bodies, and we're entitled to find out what's going on.

I can't give any feedback regarding some of your questions. I can tell you that I was the first in my immediate family to get OVCA, actually cancer of any kind that we know of. On my Dad's side there was stomach cancer (his brother), throat cancer (his uncle), thyroid cancer (another uncle). Nothing on my Mom's side. I did, however, have endometriosis, and it has been linked as a 'pre-cancerous' condition. I didn't even know I had cancer, until I was opened up for a uterine fibroid. Thankfully, I was referred to a gynecologic/oncologist by my ob/gyn, as my CA125 was slightly elevated (never had heard of that test before that), but could have been due to the endometriosis. I am eternally grateful to my doctor for having the insight to refer me to an oncologist.

I would at least try to get a CA125 test. If it is your first, it will only be a baseline, something to start with and watch for any rise in numbers. Of course, the numbers can be elevated simple because of an infection, stress, or even the ovarian cysts, and not be cancer. So, it's really just a small part of the big picture. In addition, I'm sure you know of the signs to watch for, although most would agree if you have all of these symptoms you could already be in an advanced stage. Again, not really concrete. I had a trans-vaginal ultrasound, and all it did was show the fibroid, and an enlarged ovary. Not really conclusive, but it was just a pre-surgical screening in my case.

I hope this has helped. I think most of these 'precautions' and tests are warranted in your case, and if nothing else, will at least give a reference point to start with. Please let us know if you have any success. We'd love to continuing hearing from you.

Thank you for your prayers - the same to you!

(((HUGS))) & Prayers,
Monika

Thanks Monika!
I think I'll
Thanks Monika!

I think I'll ask for the CA125 test as you suggest as a first step - and look into the study option on the side.

When you mentioned your endometriosis I remembered my lap findings (from 2004 or 5?)

- The lap found a very small amount of what my Dr back then called "strawberry" lesions, but I'm not even sure if such a small amount would even be considered "having" endometriosis (a risk factor for me?). Would it?

I never even think (as the case today:-) to list what he found on gyno forms I fill out etc because there was so little of it that I keep forgetting he found it/I had it.

Again - Thanks so much for your quick and big effort reply!

saundra

Wecome.
I would get a CA125 at least for a baseline reading. My daughter gets one each year since I have been diagnosed at the suggestion of her gyn. I was Stage IV when diagnosed and had done everything right. Had annual gyn checkups, no family history, etc. This is a sneaky cancer and I think that the study you quoted is enough to at least require some additional testing. I never had an ovarian cyst that I know of or any other significant gyn. problems. Saundra