uterine leiomyosarcoma/follow-up

Lane · New User Joined: 11 Mar 2005 Posts: 4

Hi,
It was discovered post operatively TAH BSO surgery that I had a leiomyosarcoma. The tumor was 9cm with a mitotic count of 23/10 hpf. It was determined that (WHEW!) it was a stage 1. Because this was not a "cancer surgery" It was decided that I would benefit from 28 rounds external pelvic radiation. Follow-up has been recommeded every 12 weeks.

My question is this. What method is better for picking up mets? Chest x-ray, CT, PET or MR for lungs? Which of these is the most sensitive for detecting abdominal recurrence?

Thanks for anyone's insight.

Also, any tumor markers to look for?

Lane

Iheartcats · Guest

I was also diagnosed with this, leiomyosarcoma, 3 weeks ago. My Onc. did a CT scan which showed enlarged lymph nodes after a hysterectomy 3 weeks prior to that. He was all positive and felt it was just due to the surgery but sent me on to a gyno/onc who felt the same but said we could know right away with a PET scan. We did it and I am now heading back to surgery as the nodes reflected as cancerous. I feel that the Cats will show quite a bit but the only way to know if there are actual cancerous cells multiplying in your body is a Pet scan. They are very expensive and some Ins. companies won't cover them. I plan on going back for regular Cats after this and then heading for a PET if anything looks suspicious.

Penny · Guest

Dear Lane, I also was told about this cancer after my hysterectomy (of course being told before that 99 percent of fibroids are beign. I have read that this kind of cancer is rare and about 7 in a million women get it!!! I need another surgery and then will begin chemo and radiation. It helps to know there are other women facing this and I am not alone.

Concerned Daughter · Guest

Hi Lane, my mother was recently diagnosed with Stage 1C High Grade (25/10 Mitotis) leiomyosarcoma after a hysterectomy due to what we thought was a benign fibroid. The tumor was 11cm.

I saw your post and thought your situations were very similar. Her doc advised 5 weeks of pelvic radiation treatment - we are waiting now for our CT and PET scans which are scheduled for a couple weeks from now - we have already had the results of chest x-rays which show nothing on the lungs - hoping the CT and PET come back with similarly good news.

I am extremely worried - particularly after finding out about the high grade which indicates very agressive.

We are going to do the radiation treatment - and my mother, a firm believer in natural/alternative therapies is also seeing a herbologist which her cancer doc condones.

This is very new to us and we are all very scared. I hope you are doing well after your treatments - we are about to face what you already have. Any advice you (or anyone reading) can offer would be appreciated.

Also, in my searching, I have come across info on Memorial Sloan Kettering hospital in New York - we are Canadian so not likely an option but they seem to be the best in the States for this type of Cancer - my mom's doc did his internship there and agrees.

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