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chance of leiomyosarcoma chance of leiomyosarcoma

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Unread 11-18-2006, 10:41 AM
chance of leiomyosarcoma

I just had an ultrasound done this week which shows a large fibroid of about 20 week size. I have been nursing this fibroid since my late 30's and am 51 now. I had a previous ultrasound done in March, 2004 and since then the size has increased by about a third. My gyno. is concerned that it could be a leiomyosarcoma. At my age it should be shrinking not growing. I am still having periods, perimenapausal. I am freaked out about having a hysterectomy and finding that the fibroid is cancerous. She recommends having the procedure done by a gyn. oncologist just in case. Has anyone had the same situation? What happened?
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Unread 11-18-2006, 11:04 AM
chance of leiomyosarcoma

Hi Marquise,

I was 46 when I had a hyst for two large fibroids.

In pre-op, my Dr. told me that a characteristic of cancerous uterine fibroids is that they grow fast. I had fast growing fibroids. heart stopped for a second when my Dr. mentioned the "C" word. Then my Dr. said that uterine fibroids are cancerous only 1% of the time.

My pathology report after my surgery?? My Dr. told me that my fibroids were just very healthy and not cancerous.

So...I can suggest...try not to worry. We Hyster Sisters are here to help if we can.

Best wishes,

Unread 11-18-2006, 06:05 PM
chance of leiomyosarcoma

s Marquise
This is scarey for you to hear. Leiomyosarcomas are rare, according to one webite, it occurs in as few as 7 women in a million. The chances of it being this is low, although it is possible and one does not want to be in that less than one percent. That being said, since your doctor is concerned that this could be, it would be better for you to consult with a gyn/onc. These doctors have additional training and experience in the diagnosing and treating of gyn cancers. This is what they work with all day. They know what to look for and can give a better idea of what your fibroid is.

Me, I would take all my records and information on this to a gyn/onc and get his opinion

Let us know what you do and what the doctor says.

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Unread 11-18-2006, 06:50 PM
chance of leiomyosarcoma

Hello, I to have been in your shoes. I went to doctor in Oct. because I knew something was not right in my stomach. It is a 20 week uterus filled with fibriod tumors. I had a D&C to rule out cancer. Thank GOD, it was not cancer. I am having a TAH-BSO on Dec.15th. I can not wait I will be so relieved. I am so uncomfortable with this huge thing in my stomach. I know its hard not to worry. Ask about a D&C to rule out cancer before hyster. Good Luck
Unread 11-19-2006, 04:43 AM
chance of leiomyosarcoma

After reading that estrogen makes fibroids grow, I asked my doctor why they tend to get worse in women who's estrogen levels are going down due to the approach of menopause. She said that it is not high estrogen that feeds fibroids but the big fluctuations in estro levels. I heard that from her, and no one else during my research, but my point here is that problematic fibroids are very common for women in their early 50's, and they are hardly ever leiomyosarcomatic (cancerous)

An endometrial biopsy, which is a minor procedure done in a regular office visit, assured my doc that I didn't have cancer. I also had a D&C to try to control the bleeding and that also went to pathology with a negative result for cancer.

Just out of curiosity, does the fibroid cause any problems for you? Pain? Pressure? Heavy bleeding? My mom had very heavy bleeding from a fibroid at age 52 (hyst at 52)

I can get cynical about medicos but sometimes I think they just drop the C-bomb to scare patients off the fence and into surgery.

I knew my tumor was not cancer but even if it wasn't causing me such problems (which eventually threatened my life), I hated the idea of such a big resident taking up space in my body. Best wishes and try not to worry.
Unread 11-19-2006, 09:12 AM
chance of leiomyosarcoma

Thanks so much for your response! After having a couple of days to do additional research I am feeling much better. Trying to see another doctor next week for a second opinion. To answer your question I do have pressure in my pelvic area, no real pain just very uncomfortable. My periods are sporatic, miss a month, on the next. The longest I have gone is three months without a period than I got it on Oct. 22, what a whopper that was.

Unread 11-19-2006, 11:53 AM
chance of leiomyosarcoma

A second opinion is an EXCELLENT idea.
Unread 11-19-2006, 12:20 PM
chance of leiomyosarcoma

I can't tell you how many times my first opinion and second opinion gyney said sarcoma to me. Can't have myomectomy as could be sarcoma, can't have embolisation as could be sarcoma, cant have laparascopic procedure as could be sarcoma, can't take hormones to shrink it in case its sarcoma. OK so they do need to be careful but I was told there was no known test that could rule it out prior to the surgery. The only way to be sure was a hysterectomy and then full pathology of the fibroid. They felt my fibroid was fast growing but when I pinned them down they said that meant doubled in size in a matter of months so mine wasn't actually fast growing. I have also read research on the internet that says that fast growing is not an indication of cancer. The chances of a fibroid being cancer is extremely minimal and you should try not to panic. I know that is easier said than done and although everything I read told me mine was not a sarcoma I was still too frightened to seriously consider anything other than the abdominal hysterectomy I was advised to have. Of course my fibroid turned out to be completely benign. Had I known that I would have had a minimaly invasive procedure instead. What can you do really but follow the advice you are given. Its very hard to go against their advice when they pull the cancr card and I agree that it is used too often just to make you do what you are told. We live in a very litigious climate and I think they would rather not take any risk however remote that risk is.
Unread 11-19-2006, 12:58 PM
chance of leiomyosarcoma

Thanks for your story, it really helps put things in perspective. I am going to see if I can rule out cancer and then try to have an MR ultrasound. We'll see.
Unread 11-19-2006, 02:49 PM
chance of leiomyosarcoma

MRI is far more accurate than ultrasound. I had a vaginal ultrasound which showed a single fibroid at 17cm but I had an MRI a week later which said it was one at 12cm and multiple other small ones. At pathology the fibroid was actually 10cm so the MRI was much closer to the truth in terms of size although the pathology only mentioned one single fibroid. My gyney did say that part of the concern for my fibroid was that I had only had it for 3 years and it had already got to this size. He said he would not be at all worried about a large fibroid in a woman who had had it for many years as in your case. I would watch out for these pre surgery tests though as they are not as accurate as you might think as you can see from my story. We ran a thread on the post op board a few weeks ago asking what your diagnosis was compared to your actual problem and it was amazing to see just how far apart the pathology is from the diagnostic tests for many women. I know it is scary as we make most of the decisions based on the diagnostic tests but they really are only indicators and are not difinitive. Get second opinions and even third opinions if you are not sure you are making the best choice.

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