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leiomyosarcoma leiomyosarcoma

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Unread 09-22-2003, 11:31 AM


I'm looking for a little advice. I had a SAH 9-8 for large fibriods. The tumors were sent to a pathologist in town, and she found 1 to 2 mitoses in a single field and significant atypia. My case has been sent to a couple of pathology specialists and we won't get the results back from them for a couple of weeks.

Meanwhile, my Dr. has gone over some of the 'what if' scenerios with my DH and I, and I have to say, it stinks. Since I had a SAH and kept my overies (which at the time seemed like the right decision), one option is that I may need a second surgery to remove cervix, overies and neaby lymph nodes.

I see on the list of diagonsis others have faced way worse than I'm facing, and I'm praying for all on the list, but I'm wondering if anyone has had a similar situation, and what they did?

Thanks so much,
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Unread 09-22-2003, 03:01 PM

Waiting is very hard. If you need more surgery, please go see a gynecological oncologist. They are the experts at pelvic surgeries when cancer is suspected. They can also give you a care plan specific to your needs.

Meanwhile, rest & heal from your SAH. Please write whenever you have a question or need to vent.

Take Care

Ruth S

Unread 09-22-2003, 05:15 PM


My cancer wasn't dxed in the OR either - it was about 10 days after my surgery before I had a final diagnosis. My initial surgery was by a gyn oncologist, and for better or worse, he did a complete hyst and total surgical staging at the time of my first surgery.

If you aren't seeing a gyn onc now, please do make an appt and have him/her review the initial path, and also make sure who is doing the second read on the pathology. Leiomiosarcoma is not exactly the most common cancer, and a gyn onc is likely to have much more experience than a regular gyn. It is also possible that you could have some of the other staging tests while you are waiting and worrying.

In the meanwhile

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Unread 09-23-2003, 07:11 AM

I agree, see a gyn oncologist. I didn't get my final path report for a week and the staging was higher than thought from the frozen section. I did go back 6 weeks later and have lymph node dissection. The nodes were clear. My gyn even talked over my case preop with the gyn oncologist. My endometrial biopsy showed atypical hyperplasia and possible focal (or cancer) cells. the gyn onc didn't think he needed to be invovled from that. So the gyn did the surgery, frozen section shows stage 1. But the final comes back stage 1 grade 2 endometrial cancer. Which means I should have had the lymph nodes checked. The gyn oncologist (who I saw 2 days after I got the path report) said the "gold standard" is checking the lymph nodes. I could have opted to just do a cat scan but that left a 10% chance of it not being detected by cat scan. I didn't want to live my life always wondering if that 10% was going to spread. The second surgery made recovery longer and harder but I would still do it again in a heartbeat. It was the only way to be 100% certain.

I still will go for quarterly pap smears for 3 years then every 6 months for 2 years (endometrial cancer would reappear on the vaginal cuff). If nothing reappears in 5 years, then I am considered cured.

Seeing a gyn oncologist is probably the most important thing you can do for yourself right now. They are the experts at this, they know all the different types of gyn cancers and all the statistics and precise treatments for each one.
Unread 09-23-2003, 11:18 AM

Thank you all for your responses.

The second pathology report came in last night after I had posted. They reported as many as 10 mitoses in a single field and but no atypia (which I guess means it's typical). From what I understand, this is all considered normal for a pre-menaposal female who has gone thru lupron therapy, as sited in a 1994 study. No further treatment is recommended.

This report came from Oregon Health Sciences University (OHSU), which is a highly regarded health center in this area. Do you still think I should seek a second opion from a gyn oncologist?

Thank you again,
Unread 09-26-2003, 02:49 AM

If I were you I would call the office and ask them to have the doctor call you to discuss the findings...what this means, if there is no atypia then was it not cancer? I am not familiar with mitoses. If they are cancer cells then I would ask them about a second opinion. But if these changes are indeed what is common as stated in the research for premenopausal women on Lupron, seems like that means there is no cancer? Then no gyn oncologist. Definitely ask the doctor to explain it and ask him if a gyn oncologist is needed afterall.
Unread 11-15-2003, 10:54 AM

I had surgery for vaginal LMS in July '02. It had spead to my lung by Jan. 03. It's crucial that anyone with LMS get the correct information.
Try these links: www.leiomyosarcoma.info/ and www.leiomyosarcoma.org/splash.html and sarcomaalliance.org/splash.html
LMS is different and more aggressive than many other cancers. If you suspect you have LMS, you should ask that the pathology material be sent to one of the best sarcoma centers. The best three in the U.S. are Dana Farber in Boston, Memorial Sloan-Kettering in NY, and MD Anderson in Houston.
A gyn oncologist is fine for the initial surgery, but you also need a specialist in sarcoma. That would be someone who sees more than 100 cases a year.
I'm active in the "sarcoma community," and I can assure you that many women are going to die early because they didn't get the right treatment from gyn oncs, who may have seen only a few cases of LMS in their career.
A Pap smear will not detect LMS. Someone diagnosed with LMS needs to have abdominal, pelvic and chest CT-scans every three months, at least for the first two years. That's the standard protocol.
People with uterine LMS should know that Gemzar/Taxotere has proven the most effective chemo agent, with a 60 percent response rate.
LMS travels through the blood stream, and so, it's not common to remove lymph nodes. It's most likely to spread to your lungs or liver.
Please check out the Web sites above or ask me for more information. People die all the time from LMS because they didn't get the proper treatment.
Unread 02-09-2004, 11:20 AM

Hello, it's Bxhill again.

It's now Feb. and I just had an ultrasound which showed a mass on the right side 9.8 cm X 9.2 cm X 5 cm, next to or connected to my ovary, with 2 smaller tumors out there somewhere. I go to see my Dr. today, but I need more information. I'm thinking it must be Leiomyosarcoma, because of the reoccurance of the tumors. All the info I can get my hands on says to go to a Sarcoma Oncologyist, does anyone know of any in Oregon???

I'll keep searching, thanks for any input you can give.
Unread 02-09-2004, 12:49 PM

Check out www.leiomyosarcoma.info I've got LMS and have a lot of information, if I can be helpful.
They are doing radiation in case there are any stray cancer cells left.
Studies show that LMS patients live longer if they consult with a sarcoma specialist, rather than just a gyn oncologist. The three biggest sarcoma centers are at Dana Farber in Boston, Memorial Sloan Kettering in NY and MD Anderson in Houston.
After you finish radiation, you'll go to your regular oncologist for check-ups.
There's no way to know if you're cancer free yet. (But, of course, we hope you are.)
The statistics on recurrence depend on what stage your LMS is and its grade.
LMS travels through the blood stream, not the lymph nodes. It can occur in the lymph nodes or any other smooth tissue, but the nodes are not your primary concern (as they are with many cancers).
The general protocol to detect LMS is to have CT scans of your chest, abdomen and pelvis every three months for at least two years.
The only way to know if the radiation worked is if the LMS doesn't recur in the pelvic area.
I haven't heard of a reaction from someone getting pelvic radiation who also took antidepressants. Your oncologist should be able to help you with that.
I had a radical hysterectomy as well as my vagina removed in July '02 because of vaginal LMS. I had six weeks of pelvic radiation, and yes, it made me tired, too.
The LMS had spread to my right lung by Jan. 03. I was on chemo for most of last year, but now, I have no evidence of disease.
There is an online support group for leiomyosarcoma at http://www.acor.org/
Unread 02-10-2004, 11:14 AM


Thank you so much for your reply. My dr. says he's 92% sure the tumors I have are not cancerous, but he can't rule it out completely until they remove them and do a biopsy. Has anyone had endo-type tumors reoccur after a hystercotomy? I had a sub-total and kept my overies. I'm thinking this time around I may have to have the overies removed if they are causing these tumors.

RareOne, hope you are doing well, just the thought of having LMS made me want to puke all weekend. May strength and peace be your companions.


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