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Leiomyosarcoma (LMS) Leiomyosarcoma (LMS)

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Unread 10-17-2002, 08:15 PM

Hi Savana,
You are the lucky recipient of my first post! When I read that you had been diagnosed with LMS, I just had to reply. I had a TAH/BSO in Jan 2002 for agressive, very symptomatic fibroids. My gyn told me 2 days later that they found LMS. She immmediately referred me to an excellent gyn/oncologist, who then discussed my case with several tumor boards (groups of specific doctor/specialists who help decide a course of treatment). Due to the high recurrence rate for this type of cancer and the tendency for it spread to the lungs, it was decided that I would have adjuvant (treatment added to decrease risk) chemotherapy. Although treatment of this cancer is still very controversial due to the rarity, and therefore small amount of available research, this was "standard protocol" for my situation. I took Adriamycin (Doxorubicin) once every 3 weeks for a total of 6 treatments (18 weeks). Although chemo is definitely no fun, I do not regret the decision. I was able to continue working (I have a desk job) with very little time off (after an initial 7 weeks for the TAH/BSO and subsequent biopsy surgeries). Every CT scan, pap test and follow-up has come back clear. I will probably never know if the chemo has done it's job or if that's the way it would have gone anyway, but I would hate to be facing a recurrence and know that there was something I could have done and didn't take that chance. Medicine is not magic, nor is it an exact science; you can do everything "right" and still not survive, or do nothing and somehow live. I gave up trying to figure it out long ago and have learned to leave the details to God. I saw His love again and again in this experience and I truly wouldn't change it for the world, because it changed me. I would be glad to talk with you anytime.

- Kathy
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Unread 11-06-2002, 09:56 AM

I just had my hysterectomy on October 10th 2002. I was originally getting it done for endometriosis, but as it turned out, I was quite lucky. You see, when they got they pathology report back they confirmed that I also had Leiomyosarcoma. My doctor assured me that he had gotten it all, and it should not create any further problems. I posted this elsewhere and they suggested I do a search here on Leiomyosarcoma, and thats how I found your post.
I have a few questions of my own, if this cancer recurs, are there any warning signs??? How will I know??? I no longer have a uterus,cervix or right ovary or tubes to help me out.
I never expected any of this, and really am a bit frazzled right now.

Unread 11-06-2002, 03:13 PM

Uterine leiomyosarcoma is such a rare cancer that relatively little is known about the disease compared to say, breast cancer. Diagnosis and treatment are controversial and there really is no "standard" protocol. A TAH/BSO is definitely the standard "first-line" surgical defense, but most cases are diagnosed from the pathology following that very surgery. Next up, surgically speaking, is usually a "staging procedure". In this, the surgeon is looking for signs of metastatic disease in the surrounding pelvic/abdominal cavity, lymph nodes, etc., from this the doctor can tell the stage of your disease and how best to proceed from there. Adjuvant chemo (which I had) and/or radiation are controversial in their benefit, but cannot be dismissed if there is any question of spread. Second and even third opinions are crucial here. My path report from the initial surgery stated LMS. The second report (after 4 of 6 chemo treatements) stated "atypical leiomyoma" (not quite cancer, but maybe), the third report stated "atypical leiomyoma with recurrence potential". Which one was correct? Who knows? I chose to finish chemo for my own peace of mind. I would always wonder should there be a recurrence down the road. I cannot speak for others, but I can only tell you how my case has been handled and give you a few suggestions. First, make sure that your case is being handled by a gynecological-oncologist. Due to the high recurrence potential of this cancer, it must be treated and followed by a specialist. Second, get another opinion about your original diagnosis. Third, insist on a CT scan of chest, abdomen and pelvis. If this was not done or is not scheduled already following your surgery, have your doctor schedule it. Follow-up should include regular (every 3 months, for a while) pap/pelvic exams (for vaginal cancer), chest x-rays (also every 3 months, for a while) and/or CT scans which are far more sensitive than x-rays to metastatic disease. Recurrence may occur in the pelvic area such as vagina, bladder, stomach, etc., but often with LMS, metastatic disease shows up in the lungs. That's why follow-up care is so important, especially CT scans. Lung mets may produce a persistent cough, daily fever, shortness of breath, but often no pain at first. How will you know if there is recurrence? Essentially you won't, without proper follow-up care. Thorough follow-up probably gives you early treatment options you might not have if the disease spreads unchecked. On the positive side, my CT scans have all come back negative for recurrence and I am on a regular follow-up schedule with my gyn/onco. Life is good, God is good and I wouldn't change a thing!
Here are a few interesting websites, although most are in "medicalese". I shared plenty with my doctor and quizzed him about what I couldn't understand. He finally said I could go with him and brief the pathologists that he meets with! Ha! Ha!

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Unread 11-16-2003, 05:26 PM

To repeat myself from other threads: I belong to a list (www.acor.org) on leiomyosarcoma. It has hundreds of members. A number are worse off because they trusted a gyn oncologist, most of whom have seen only a few cases of LMS. There are statistics that people who go to sarcoma centers live longer. I would urge anyone with LMS to get a second opinion from an oncologist who specializes in sarcoma, which means he/she sees more than 100 sarcoma patients a year.
I have LMS and, as a former journalist, I've researched this topic more than anything else in my career.
It's correct that, if LMS is going to recur, it probably will do so in the 2 years after diagnosis. But people who hit that milestone are not "home free." Many people find it recurs or spreads some years later.
Although it's resistant to chemo and radiation, I don't know any sarcoma center that doesn't recommend chemo and radiation to some patients. I had 6 weeks of radiation and I will be on chemo for most of this year. The cancer in my lung has responded very well to chemo (Gemzar+Taxotere), but my oncologists expect it to lose effectiveness after a while.
"Getting it all" in surgery is no guarantee it won't come back. I had vaginal LMS, and I had a radical hysterectomy and vaginectomy in July '02. My surgeon got all of it -- that he could see. The problem is, we never know when some cells have been left behind or have already migrated. (LMS travels in the bloodstream.) By Jan. '03, it had spread to one of my lungs.
If you have LMS in the pelvic area, and it spreads to a farther area, such as the lungs or liver, you are considered incurable. Surgery, chemo or radiation may get rid of this "metastasis," but sarcoma specialists expect it to come back eventually.

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