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Primary ovarian leiomyosarkoma or ULMS? Which is worse????

fluffy2
Posts: 1
Joined: May 2013

I am waiting for the answer and don't know what to wish for!!! I searched for information and was severely depressed ...please help! Is it so fatal as they say? Are there any survivors among you ? How difficult was it? Who was your doctor ? Is anyone from Greece with the same diagnosis? I would appreciate any answer !!!

lovesanimals's picture
lovesanimals
Posts: 1264
Joined: Sep 2011

So sorry but I don't have any experience with either one but I know how hard it is and how scary it is to wait for an answer.  I do know one thing though.  Any information I find, especially on-line, I take with a grain of salt.  While some is useful, much of the information is outdated and cannot predict the outcome for an individual person.  Many of the ladies on this board and survivors on other boards are living proof that a grim diagnosis is frequently wrong.  Please keep us posted and in the meantime, I'm sending lots of good thoughts and prayers your way.

Hugs,

Kelly

Alexandra's picture
Alexandra
Posts: 1245
Joined: Jul 2012

Sorry that you have to "choose" between 2 types of leiomyosarcoma; ovarian vs. uterine. Both are very rare (1% of all ovarian / uterine cancers) and poorly researched. Prognosis depends on the cancer stage and your overall health. Easier said than done, but do not get hung up on statistics, do not let your mind jump to the worst case scenario and get paralyzed with fear and anxiety. Get all the information you can from the doctor, get second or third opinion from gyno-oncologists and sarcoma specialists, and take it one day at a time.

If you're in Greece try to contact: Dr. Kostas Kaplanis: kkaplanis@yahoo.gr; Gynecology Department, Theagenio Cancer Hospital, A. Simeonidi 2, Thessaloniki, 54007, Greece or Dr. Christos A Papadimitriou chr_papadim@yahoo.gr; University of Athens, School of Medicine, Athens, Greece.

These doctors published articles on ULMS 3-4 years ago. 

Best of luck with your treatment. Come back to this board to share your journey.

http://sarcomahelp.org/leiomyosarcoma.html;

http://www.curesarcoma.org/index.php/patient_resources/subtypes/uterine_leiomyosarcoma

http://csn.cancer.org/node/247042

Robin_Martinez
Posts: 6
Joined: Dec 2012

Fluffy, at the leiomyosarcoma mailing list at ACOR, patients and caregivers deal only with leiomyosarcoma. They are saving lives on a regular basis by sharing their information. I highly recommend joining that group:

listserv.acor.org/archives/l-m-sarcoma.html

ULMS is not treated like other types of LMS. The L-M-Sarcoma group knows the difference and can advise you depending on the diagnosis you receive. They have so much specific information that you will want. 

The more you know, the better your chances. Good luck!............Robin

Robin_Martinez
Posts: 6
Joined: Dec 2012

I should add that the L-M-Sarcoma group can also tell you how the diagnosis between LMS and ULMS is differentiated. They are real technical experts, helpful and supportive too................Robin

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