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Treatment for Uterine Fibrosarcoma Treatment for Uterine Fibrosarcoma

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Unread 02-20-2004, 12:37 PM
Treatment for Uterine Fibrosarcoma

Lady Lawyer,

My tumor is a variant of Endometrial stromal sarcoma. Leiomyosarcoma is a "cousin". All are lumped in the uterine sarcoma group. A sarcoma IS a malignancy, and a scary one to boot. Sarcomas do not respond well to radiation or chemotherapy. Most uterine or endometrial cancers are fed with hormones. Because you are a lawyer, I know you want all the information you can gather. I am a nurse, my Husband is a Surgeon, so I too want all the info I can find. Ovarian cancer is difficult to diagnose. The most likely place for a recurrance is in the pelvic region. The ovaries, omentum, vaginal vault and the lungs. All are highly vascular. I would seek a second opinion.
I had three pathologists study my tumor, I am so glad they took my ovaries. I hope you find the right answer.
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Unread 02-20-2004, 12:51 PM
Treatment for Uterine Fibrosarcoma

Wow! Thank you so much for your continued input. Of course, being the decisive sort, its tough for me to move back to indecision. But I know that this could be a life or death decision. The added information really does help me and I am meeting with my gyn/onc again next week and plan to discuss and consider further.

As for another opinion, I really would like a 3rd opinion but there isn't anyone else locally with any more expertise. I pursued an out of town medical facility but they would need to see me in person - which I could do - but I only want to go to that trouble if I am going to see an expert in uterine sarcomas (which, as you know, are rare). What I have been unable to determine is who - if anyone - is THE doctor that has the most expertise with uterine sarcomas.

Do you know how I could find not just any gyn/onc, but one with more specialized expertise with uterine sarcomas in particular. Thanks again! - Lady Lawyer
Unread 02-21-2004, 04:23 AM
Treatment for Uterine Fibrosarcoma

Hi, Lady Lawyer--

I did a search for prior threads using the words "uterine sarcoma." I found a number of threads, so you might want to replicate my search and peruse them yourself to see if they add anything to the information you already have on sarcomas.

I did find one thread that, although dealing primarily with leiomyosarcoma, has some information on sarcoma in general. That thread does mention the importance of people diagnosed with sarcoma being treated at sarcoma centers, and specifically mentions the sarcoma center at M.D. Anderson in Houston. You might want to consider sending your pathology slides to one of the major cancer centers for a definitive diagnosis, so that you know exactly what type of sarcoma you are dealing with at the outset.

Here is the link to that thread:

Good luck and please keep us posted on your progress.

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Unread 02-21-2004, 09:01 PM
Treatment for Uterine Fibrosarcoma

Hi Lady,

I am with Karenann on this one. Almost 2 years ago I had a hysterectomy for ovarian cancer. My mom had breast cancer 27 years ago, and is totally fine and healthy today. However, had I known the strong connection between breast cancer and ovarian cancer, I would have pushed for a hysterectomy after my second son was born 22 years ago. I had a c section and they were in there already!!

Over the years, I was always soo concerned with the possibility of getting breast cancer that I never never dreamed of, or thought about, ovarian cancer.

Please let us know what you decide.

Unread 02-23-2004, 08:55 PM
Treatment for Uterine Fibrosarcoma


You have not posted where you live. I am in the Southeast.
My Pathologist helped write the Medical Textbook on Uterine Sarcomas. I believe he is the most knowledgable in the USA.
Plese let us know in what area you live, maybe we can help you more.
Unread 02-23-2004, 09:12 PM
Treatment for Uterine Fibrosarcoma

Hi Lady,

I am still struggling with the ovary issue. My Dr. recommends taking them out. she says there is a 1 in 70 chance of ovarian cancer. She says at my age, almost 53, I don't need them anymore. Granted I am way past child bearing years, but I still get regular periods! There is no cancer in my family. I am seriously considering keeping them. Good luck to you. It is so comforting to know that there is a place to turn for support.
Unread 02-24-2004, 08:24 AM
Treatment for Uterine Fibrosarcoma

Thank you to everyone who has replied. It is nice to know that so many people care and are willing to take the time to share their experiences, give advice, etc. The link to the sarcoma search was very, very helpful.

I am located in VA but would be willing to seek a consultation elsewhere if it would be helpful. Meanwhile, I am scheduled for surgery on March 4 - and, at this point, I am more anxious to get my uterus out and analyzed than anything else. So the trick is that I only have another week - and though surgery could be delayed - I am mentally just ready to proceed.

But, Ichurt, I would love the name of that medical textbook and/or the pathologist who wrote it if for no other reason than to look at the book or other things written by the pathologist. And it may help me decide if I should pursue further opinions before or after surgery.

What I think that I am learning is that uterine sarcomas are very, very different from other types of sarcomas. Apparently what I have is very slow growing and very self-contained (which is not the case with most other types of sarcomas including some of the uterine ones like leiomyosarcoma).

On another note, I just found out that my office receptionist had some type of uterine cancer when she was 21 years old (30+ years ago) and had only her uterus removed. She kept her ovaries and had no chemo, no radiation and has had no problems. Obviously she was lucky. And I have learned enough now to know that small details of a case can make a big difference - so its tough to compare without knowing exactly what she had. But it is still nice to hear about. Be well - Lady Lawyer
Unread 02-24-2004, 11:13 AM
Treatment for Uterine Fibrosarcoma

Dear Ladylawyer,

I too live in Va!! My Dr. is at Duke University and sees about 21 patients with uterine sarcomas which is a high number due to it's rarity. The Pathologist is also at Duke. I live about 10 miles from the NC border. Where are you? Also, I belong to a support group of women with uterine sarcomas, and you could gain a wealth of info from them.
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Unread 02-24-2004, 12:48 PM
Treatment for Uterine Fibrosarcoma

Lori - I cannot believe it - we must live within 30 miles of each other. I live in Norfolk. Thank you, thank you for all of the info. that you have given - and the latest support group. I plan to take a look at that next.

Also, thank you for the heads-up on Duke. I may wait until post-surgery to consult just because surgery is in a week and I am just ready to get my uterus out. The tumor was removed 1/21 and I just don't want to wait because my gut feeling is that the whole problem is confined to the uterus at this point and if I can get it out soon enough, the cancer is less likely to have time to metasticize (sp?).

So, that is where I am at this point. Tough to balance. But I will keep you posted and very much appreciate all of the comments and contributions. - Lady Lawyer
Unread 03-21-2004, 01:49 PM
Post-surgery and thank you

Hello to all - I have not been on the website in a while as I was just focused on getting through the surgery, etc.

To update everyone, I had my uterus and cervix removed vaginally with laproscopic assistance on March 4. I was able to keep my ovaries. They looked at and photographed my abdominal internal organs which all looked healthy. They also took 10 lymph nodes and did a wash. The local pathology report is back and everything was negative - no sign of the cancer anywhere except for a single .5 cm spot (only 20% embedded in the uterine wall) where the tumor had been attached. The remainder of the uterus (and everything else) was cancer-free.

So, I feel very fortunate. I am still waiting for the pathology report from the big-time path lab that had also reviewed the tumor taken out in Jan. But, it looks like I won't need any further treatment - other than regular follow-up - at this time. And, the doctors seem to think that the tumor was completely self-contained in the uterus with a non-agressive cell structure so I am hopeful that I won't hear from this again.

A big thank you to everyone for all of the information and their support during one of the toughest times of my life. - Lady Lawyer

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