BRCA test denied, ovarian cysts

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msShelly
msShelly Member Posts: 55
edited June 2014 in Genetic Testing

Hello,

I have been denied for BRCA testing and the genetic counselor almost laughed in my face. I am the only one with breast cancer, but I have premenopausal breast cancer which makes me wonder. My family history is very limited and my family is male dominated, so I worry maybe it could be genetic and I just don't know.

Anyway, to get to the point of my question--- I have 2 ovarian cysts diagnosed 1 year ago (2.9 cm and 1.7 cm in each ovary). I have been paying attention to my breast cancer and just noticed this when reviewing literature related to a pelvic ultrasound. I don't think these cysts were ever tested or anything as far as I know.

I am wondering, how normal is it to have ovarian cysts? Is it very common or uncommon? Not really knowing a complete history, I worry about ovarian cancer.

Should I have these cysts tested? Thank you. 

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  • lemon68
    lemon68 Member Posts: 684
    edited March 2013

    Hi Shelly

    I have 2 ovarian cysts on the left. A couple days after my BC DX I called OBGYN in a panic, she told me they are cysts, they can tell through ultrasound, catscan that they are just cysts and not cancer. I dont remember what she called it but I am sure someone will answer your question also. She was 100%, I felt I had to trust her. I was aware of 1 of mine and in Sept. had a internal ultrasound showing the 2nd. I do think they are common. Now dont get me wrong when I see her again I will ask again and again. I am not taking chances.

    Did your insurance company deny the brca testing? I have no family history so mine was approved immediately. If it was the insurance company I would call them personally and find out why. Would they have denied because you had a BMX already? Just doesnt seem fair when your looking for peace of mind. I am waiting for results, they take a long time.

    I wish you the best Shelly and hope you can get some peace. xo

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  • msShelly
    msShelly Member Posts: 55
    edited March 2013

    hi lemon, thank you. Your post is very reassuring, though I must admit im still freaking out a bit. If it is not one thing, its another. I just had a pelvic ultrasound in august due to several fibroids which I am monitoring. Then breast cancer diagnosis and I have not followed up on the fibroids. I just looked at the report and it is so strange that it lists that there were two cysts, but of my 2 gynecologists- neither mentioned anything about them, just that the fibroids should be continued with monitoring. I am much more aware of things now, but before i just assumed everything was okay. Im not sure what I should do? Should I seek a catscan because i never had one. Should I get in to see the gynecologist right away? There is always such a long wait for appointments that my next one is in may, but i wonder if i should say an emergency? then they could get me in sooner...

    As for the BRCA testing, my genetics counselor said I will most likely be denied by insurance and he almost refused to even send the testing in. So I am assuming that the way he sent it in, since he was so against it, that I will be denied. All I have is the history of my father and mother who both lived long life spans, but the rest of the relatives are literally male dominated. I am not aware of what my grandmothers died from. I was annoyed by him because he said I didn't even have triple negative cancer and that I have no real red flags. I tried to emphasize there was no family history and I am premenopausal, but he said that won't get it covered for me. I have Cigna. Im not sure what I will do once they deny it. I don't really understand how to find out how to get it covered. When I call the insurance company, I can't ever get a clear answer about what their criteria is. 

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  • msShelly
    msShelly Member Posts: 55
    edited March 2013

    Also, I was just wondering if having ovarian cysts raises your risk for ovarian cancer? Or are they more like fibroids and found in 1 in 3 women?

    I have not heard many of the women I know having ovarian cysts so it is a fairly new concept for me. I guess I will have to do some research on it and call the gynecologist.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Hi msShelly,

    I would encourage you to talk to your gyn about this for the best info. I have PCOS (polycystic ovarian syndrome). It is my understanding that cysts are quite common during the reproductive years. They usually resolve themselves within a couple of months. Cyst formation is a normal part of the menstrual cycle. But there are diffrent kinds of cysts. Does your report mention a type? Most are "functional" cysts. I've had many. If the size or anything is a concern my gyn always orders a follow up ultrasound after a couple of months to check for changes or to be sure they have resolved.

    Hope this helps ease your mind a bit, but please do follow up with your doctor. I've learned to ask questions until I get clear answers. :-)

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  • lemon68
    lemon68 Member Posts: 684
    edited March 2013

    Shelly

    I would give your OBGYN a call and be honest, tell then since you were recently DX with BC you want an appointment ASAP to look into the cysts and fibroids. Let them know you are having anxiety and want questions answered by your DR. Once you get to talk with him/her face to face some of your worries will be alleviated. I would ask to see the actual pelvic ultrasound, mine showed me everything.

    I dont know if having cysts raises our risks for cancer or not. I dont have a genetics counselor I just had my MO request the brca test, maybe ask your MO about it and why they feel you dont qualify. It is very expensive but I do know some women do pay out of pocket for it and they set up a payment plan.

    Hoping someone with experience in BRCA denial will post here for you and give you more information.

    Hang in there, you have already been though alot. Dont let your mind go to the dark places. I know how hard it is and have to remind myself daily (sometime hourly) dont go there! Be proud of how brave you have been and know your going to be okay.

    xo

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  • msShelly
    msShelly Member Posts: 55
    edited March 2013

    thank you both! i will put in a call to the gyno to try to sort all this out and get a definitive answer. 

    Dulcigirl, It says the right ovary has a simple cyst measuring 2.9 actually and the left ovary has a complex follicular cyst measuring 1.7 cm. The previous size from a report 1 wk earlier says cyst is 2.1 cm and 1.3 cm. thank you for the information you gave.  that definitely does help to ease my mind. I have never heard of PCOS (polycystic ovarian syndrome). How did you find out you had it? Were you genetically tested or is it just found out after having multiple cysts? I just read before I saw your comment that most women who are premenopausal do have ovarian cysts. Its just I never really worried about anything. I was living in a bubble and breast cancer now has me wondering about EVERYTHING!! your gyno sounds excellent. i may have to find a different one because im not sure she is good for follow-up and extra surveillance now that i have had breast cancer.

    Another thing the report says that i don't understand is: "There is free fluid present within the cul-de-sac as well as a small amount of free fluid present in Morrison's pouch. Fluid in this location is somewhat unusual." My fibroids are a problem i know and affecting my kidneys so i am being monitored for this- probably will have to get them taken out- but i definitely have to ask the gyno about the cysts. not sure what the last bit on the report refers to, the fibroids or the cysts...

    lemon, thank you for all the good advice. i will most definitely put in a call tomorrow... i have to stop finding old records in the medical file because i keep finding all this stuff i never saw before lol...but i do have to stop going to dark places and keep telling myself that things will be okay. 

    thank you both again!!

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  • MichelleRN78
    MichelleRN78 Member Posts: 64
    edited March 2013

    I don't know much about ovarian cysts but I was told that I had multiple clusters of benign cysts in my breast.  I didn't feel comfortable with that dx so I had an MRI and the areas showed up as "something else"  my bx came back DCIS.  I hope you can get the answers and support you need.  You are the best advocate for yourself.  Trust what your body is telling you.

    God Bless

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  • LNBCA
    LNBCA Member Posts: 49
    edited March 2013

    The genetic counseler should be looking at what types of cancer, if any, the men have had in your family. Any prostate or pancreatic cancer in the men?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    msShelly - here is a link to information about ovarian cysts and PCOS.  Ovarian cysts are very common, especially among pre-menopausal women.  I have had many, my 23 year-old daughter also has them. 

    http://www.medicalnewstoday.com/articles/179031.php

    I did have BRCA testing done because I am adopted and had no access to family history - my breast surgeon wanted the information because I was a lumpectomy candidate.  A positive BRCA result would have elicited a BMX recommendation, which I ended up doing anyway, even though I tested negative.  My insurance did cover the test in 2010, but no longer covers it at all, for anyone - even with a BC diagnosis.  In an effort to save costs it has become something they just don't cover - if you want it you pay for it yourself. 

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  • cider8
    cider8 Member Posts: 832
    edited March 2013

    I had a CT scan that showed ovarian cysts. I never knew I had them before. I had to follow up with my gyn. A trans vag ultrasound showed one was 4cm. My gyn said cysts are a normal part of the cycle with lots of size variation. He doesn't consider the size a problem until 5cm. Especially since I've never known about my cysts or had any pain. We didn't discuss different types of cysts but did decide to follow up in 3 months. If the size didn't change we'd go from there. Thankfully the size shrunk. I can't remember the size. I just said Great! I'm outta here!
    I did have BRCA testing because I was 39 at diagnosis but no family history at the time (my aunt diagnosed soon after me).

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  • msShelly
    msShelly Member Posts: 55
    edited March 2013

    Thank you all! I scheduled an appointment for april so thats not too too far off! I guess they just have to be monitored and i have to be a little more proactive now. I actually found out one of the pelvic studies was 2010, not 2012, so i assume within 2 years if it were cancer it would have grown.



    Special k, its stange because i mentioned the fact that i have nno family history should qualify me but the genetics counselor seemed hell bent on refusing me the test. I practically had to strong arm him to get the blood taken and sent in.

    My fathers brother did have prostate and my grandmother died in her 40 s from cancer... We just dont know what type. What bothered me is he said my type of cancer would be different if i had the gene- like triple negative. But from what i have heard that is not necessarily true. I have children and would like to at least rule it out for them if nothing else. As far as i know cigna still covers for some women. I am hoping maybe by some luck they will cover it for me!

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  • Sparks201
    Sparks201 Member Posts: 1
    edited March 2013

    Shelly,

    Keep fighting. The fact that you have had any sort of breast cancer before the age of 50 should qualify you for testing. if your grandmother had breast cancer it would help qualify you and if she had ovarian cancer it should absolutly qualify you so dig in deeper with your family to find out. You should see another Genetic councilor. They should never laugh at you and BRCA mutations are not simply linked to triple negative. That's absurd and absolutly incorrect. If you are positive for a brca mutation you have like a 50% chance of it coming back, so try again. My family also got help from the company that runs the test in regard to payment plans for our deductables. Did they call you to talk about it? My experience is that they called us to help us make it happen. Theyre experts in making it happen and there are guidelines that insurance companies go by that having early breast cancer qualifies almost everyone. Like another person said, look into if any of the men in your family have had prostate or pancreatic cancer. Check out www.bracnow.com that's the company that does the testing and they have tons of info that helped us. We even spoke to a genetic councilopr about my results that is on staff there antd completely understands the testing and results. Call them and ask why your test was refused. Maybe the GC filled out your form wrong. Sad, but it happens but good luck. I came back negative but I have a family history so I'm getting mamm's and mri's every year because who knows if there is another mutation they haven't found yet in my family. But if you are positive there are options out there for you. Good luck and stay healthy ladies. 

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  • msShelly
    msShelly Member Posts: 55
    edited March 2013

    Sparks, thanks so much. i found your post incredibly helpful... i am definitely going to look closer into things and visit that website with the company that runs the test. that is a great idea! so far i have not been denied yet... im just assuming i will be denied because the counselor told me so and i assume due to the resistance from the genetic counselor the form was not going to be written up in a way that will at all help me to get it covered... but i am going to press for it, especially since I am in my 40s with breast cancer. It should almost be an automatic in my opinion. You shouldn't have to wait for a pattern of breast cancer to develop. I don't want my daughter to get it only to find out we are brca positive. in my opinion, it is so important for women to know if they test positive or negative. Even if you are negative it is so important to know even if it doesnt erase your own personal and family history.

    i also agree that brca is not only linked to triple negative and i was shocked that the counselor said something like that. i have heard that something like half of women with triple negative have the mutation, but i have also heard that women with the mutation have the hormone sensitive kind too. I have even read about a woman who had hormone sensitive first and then triple negative. i was shocked because this genetics counselor is also an oncologist through the hospital and he even said that for most of the cancer genes people get tested for there is not much you can do anyway, and what happens is a lot of the time people get equivocal results and then stress over them so he instructs people not to take the tests to rule out genes but only if there are many red flags pointing to the fact that someone has a cancer gene.

    i think that is ridiculous. i think if you have had premenopausal breast cancer you should be able to rule out the breast cancer genes especially if there is limited family history and female relatives. but anyway, so far the insurance company has been great though and covers everything down to the bras. they havent denied a thing. so im really hoping maybe they will pull through. I definitely am gonna give the company that runs the test a call and see if they could help too. Thanks so much for all the great advice!!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    msShelly, we hope you have good results from your insurance company - please post again to let everyone know how it goes!

    • The Mods

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    msShelly... when did your grandmother pass away?  And where?  Depending on how long ago she passed away, you may be able to track down a Death Certificate which may reveal cause of death.  If it was recent, the information may be protected under privacy laws and there may be a fee to have any information released to you.  But it's worth checking into to see if you can get your hands on the information.

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