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Leiomyosarcoma-so many ?'s Leiomyosarcoma-so many ?'s

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Unread 01-24-2004, 03:08 PM
Leiomyosarcoma-so many ?'s

TAH ll/24/03. Originally doctor thought I had a fibroid. He did not sample any lymph nodes. I was busy trying to get my body healed. The nurse who took the staples out said "no cancer cells, no precancer cells, but some atypical cells." She only meant in the fluid where they bathe the path. specimen.But I did not know that.
I in fact had a malignancy, a leiomysarcoma, attached to anterior uterine wall.I learned this about 4 weeks after surgery;,at meeting with surgeon, he told me to go to the radiation oncology dept. and arrange for 5 weeks of radiation. I suffer from depression anyway and my heart really sunk. I have never been physically ill a day in my adult life (I'll be 63). No surgeries. Never in a hospital! In my self image, I saw myself as about 40. I adjusted it to about age 70; felt I'd aged 30 years in l0 minutes!

My questions: why radiation rather than chemo? Am I cancer free? I know these tumors can return. What is the role of the radiation oncologist? The first time she saw me, she did a pelvic and implied that most of "our" work would be via pelvis. Yet, as the radiation has begun (8 sessions so far), her only concern seems to be the effects of the radiation. I do have an appt. with the gyn-onc. surgeon in 3 months. Is he the one that will be doing all the pelvic stuff?

What is the recurrence rate of these LMS's, I wonder. How would the doctor know that one has reoccurred? The radiation onc. doc sent me for a lung CT--that was ok. How do I know what lurks in my lymph nodes? Should I get scanned there? How do I know the radiation will work? It is in pelvis area. Does everyone who gets it eventually get tired? I live alone and can't let myself get wiped out.

The surgeon (gyn-onc.) is wonderful. He tells me I'm going to live for a long time because he'll be watching me like a hawk.The radiation oncologist says "I have no way of estimating survival rate. You've hardly started and you want me to jump ahead 5 years!" Naturally I prefer the surgeon!

I am afraid of taking antidepressants while undergoing the radiation as I have often had cutaneous reactions from antidepressants before. The docs don't seem to have the bead on this. If any of you has a thought on even one of these questions--or some encouragement? let me hear from you please.God bless. MercyEmm
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Unread 01-24-2004, 04:36 PM
hello MercyEmm

welcome to the site, you will not be alone here, so always feel free to post with anything anytime.
I have just spend some time doing a google search for your dx and found two references to this site, so hopefully you will be able to do a search for these threads from this site. The link from Google was broken.

It must have been a huge shock for someone who has been blessed with such good health that this is a first for surgery and I hope you have strong friendships that will support you in your time of need with friends and/or family.

I don't have personal information for you but feel confident that you will soon get some replies and links to helpful sites that will be able to guide and support you.

Am glad you have one good onc. to work with, keep a notebook of questions to ask, it's incredible how burning questions disappear into the ether when we actually have the chance to ask but can't remember the question.

Please keep in touch to let us know how you are going, and go easy on yourself during the radiation. Don't worry about suddenly feel older, we all do when we are ill or in pain and once your body has started to recover from its surgery and radiation shock you will hopefully start to feel better in all ways, body, mind, heart and soul. Take care, Linda
Unread 01-24-2004, 06:14 PM
Thank you, Lindy-lou

...for your kind reply. I do feel sort of shattered in body, mind and spirit, although I do feel that this, the first physical crisis of my life, has brought me closer to God. It has also revealed some true friends. MercyEmm
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Unread 01-24-2004, 06:16 PM
Leiomyosarcoma-so many ?'s

I am not familiar with your specific diganosis, but I do have experience with pelvic radiation and its side effects.
I completed 28 external and 3 internal treatments for uterian cancer on Novenber 13th. The treatment itself is quite eneventful. I had no burning or darkening of the skin. There was some intestinal problems and I had quite of bladder irritation. The bowel problems have gotten much better, but my bladder can still be said to have a mind of its own.
I too live alone and although I had some fatuge each day after the first few weeks of treatment, it was usually shot lived and by evening I felt quite well.
why radiation? I was told by my onc/gyn that if it was to return it would most likely be at the site of the tumor. The radiation would help to prevent this.
My lymph nodes were clear so chemo was thought to be unnecessary. I would ask about the lymph nodes. Some posters have opted for another surgery to cheak them out. I also have read that a CT can detect a supicious node. I am sure your Doctor will be able to inform you.
Please try not to be to hard on yourself. This treatment is reallly not that bad and the radiologist and staff will be able to hlp with any problems should they come up. You should be able to carry on as usual during your treatments.
Good luck.
Unread 01-25-2004, 06:22 AM
Thank you, Jean, for encouragement

Your words have offered encouragement. I've had quite a few people (who have never had it) tell me how tired the radiation was going to make me; they made it sound like I would have to be carried in and out for the treatments (I exaggerate). Still it is good to be forwarned of some things. When I meet with the GYN-Onc. next, I am going to ask about scans of lymph nodes. Please accept my warmest wishes for best of luck and success in your own challenge. Love and Light, MercyEmm
Unread 01-25-2004, 10:50 AM
Leiomyosarcoma-so many ?'s


Here's an old thread that might be helpful. There's a couple of links in there to some sites on leiomyosarcoma that might be helpful to you.


Good luck! I hope you are able to find the answers you are looking for.

Keeping you in my thoughts and ers.


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