Need thoughts/opinion....

Hi,

I'm 52 years old. According to recent labs, I am post menopausal.

I also have an autoimmune disease (Dermatomyositis).

In Aug. of 2010, my mother died of Leiomysarcoma (her tumor was in the uterus).

In Aug. 2010, I had an ultrasound done at John Hopkins (the head of radiology actually came in the room and did the ultrasound once the tech realized there were some issues) The ultrasound showed I had a thickening of the endrimetrial lining - it also showed a fluid filled mass in the cerevix. The radiologist's suggestion was to have a endrimetrial biospy.

Since I didn't have a GYN that I trusted and my mom's GYN treated her well, took good care of her, went beyond what he would have had to do, I decided to go with him.

He did the endrimetrial biopsy and I was diagnosed with simply hyperplasia without atypia. I was put on progesterone and have had ultrasounds every six months to monitor the thickness of the lining. I don't remember the "fluid filled mass in the cervix ever being mentioned.

This GYN told me that if I went to a GYN and was told that I have fibroids, based on what happened with my mother, not to let it be passed over - insist they are biopsied - not to just let them tell me "oh, it's just a fibroid"...what he told me about Leiomysarcoma is that there is not enough data to know if it's something you can inherit or not.

So, I really like this GYN - he always listens and is always available - I can go to him for advice with any medical issue, not just GYN related stuff...my only issue is that its quite a drive for me and due to his schedule, I normally take two days off work.....

So, I thought about trying someone closer to home and also for a second opinion. I went to a local GYN based on a recommendation from a friend. She has excellent crendials.

My first impression was that I do like her...I knew she would want to do her own ultrasound...I was prepared for that. However, her ultrasound showed that I had a polyp on myuterus, a fluid filled mass in the cerevix and a fibroid (which I just had a CT Scan and MRI and they both said no fibroid"...she also wanted to do a hysterscopy...I did go thru with that - painless. she says she took 4 biopsies - I'll get the results at the end of the week.

But here's my concerns with her - whenever I mention Leiomysarcoma, she blurts out "that's not genetic - don't worry about that"...yet when I go online and read - there are two thoughts - one is that there's not enough data to know because it's such a rare cancer (which is what my current GYN says) and the other thought is that there is some genetic and environment factors involved - one being immune suppressed people are at a higher risk - which I am because of the autoimmune disease. My current GYN had said not to let fibroids go without being investigated...When I mentioned fibroids to her - she poo-pooed that and said most women have fibroids - don't worry....I do think her ultrasound was more thorough than his - I may be wrong - I think his tech has just been measuring the lining thickness and not really checking everthing out...

Who do you trust????? My current GYN who says due to my mom's cancer, to be cautious (but I wonder if he's been thorough enough - he only did the one biopsy - this new GYN says I should have had them on an ongoing basis)...

when he did the endrimetial biopsy, it was very, very painful - she did the hysterscopy and some bisopies (I don't know what she biopsied - she didn't tell me - there was no pain)....

he is aware of what my mom went through and says to be cautious - this new GYN poo-poos that and says not to worry -



?????????????????????????/

Would just like some thoughts - comments....

This is a tough one. It does seem like she is thorough and that her ultrasound did show a problem which she addressed. I guess I would see what she says the biopsies say and what she wants to do. If there is a problem and she is saying don't worry about it, then I would probably go to the other doc for another opinion. Unfortunately, it sounds like they don't know enough about this cancer to know if it is genetic and my thought would be to be very proactive about it. After all, the gyn doesn't have to live with it if she is wrong or brushing it off too easily. You do. I don't really know if there is a right or wrong answer. Go with your gut. That usually steers me to the right thing. Sending hugs and support

I can understand your apprehension Blubird. Unfortunately as my specialists have always told me, the only way you are going to know for certain that the fibroid is what it appears to be is to take it out.
See how you feel after you get your results. If you don't feel comfortable with your gyn's recommendations I think you need to seek a further opinion.
Despite the long drive I would be inclined to go back to your original gyn who shares your concern about leiomyosarcoma to discuss it further. If neither of your gyns are gynae/oncologists I would be seeking one.

Please keep us posted. I share your fear about leiomyosarcoma and hope that your fibroid will turn out to be just a fibroid.