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Treatment for Uterine Fibrosarcoma Treatment for Uterine Fibrosarcoma

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Unread 02-18-2004, 04:53 PM
Treatment for Uterine Fibrosarcoma

Hello gang - I am new (brand new) to this site. On my 40th B-day (1/21), I had what we thought was a benign uterine fibroid removed. No significant symptoms until the day before when I started to hemorrage. A week later, I learned that it is "something" but a medical mystery.

In any event, after multiple pathology tests - among others - I have good news - sort of. It is probably a "low-grade spindle cell uterine sarcoma or fibrosarcoma" - or even maybe a benign thing. No evidence of spread, very curable, etc. But it is highly unusual and rare - no more than a few hundred cases probably. Soooooo, has anyone had anything like this????

And then the next question. I clearly need to have my uterus out - that is fine. It will be done laproscopically (sp?) through the vagina - that is fine. Now, removing the ovaries is optional as they appear totally unaffected by this and are not likely to be affected by this. HOWEVER, I have a bad family history of breast and ovarian cancer and so there is some push to take the ovaries - not really because they are much at risk from the low-grade uterine cancer but because of the family history.

I am really leaning toward keeping my ovaries to avoid potentially unncessary surgical menopause at age 40 - BUT I don't want to be reckless. So, does anyone have any experiences they can share regarding either the uterine sarcoma, the treatment, the ovaries??? Thanks in advance for anything that you can offer.
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Unread 02-18-2004, 05:40 PM
Treatment for Uterine Fibrosarcoma

s Lady Lawyer

Hopefully your surgeon is a gynecologic oncologist? If not, I would strongly suggest that you consult with one. They are the experts when any possibility of a gyn cancer exists.

IMHO With a strong family history of breast and ovarian cancer, my vote goes with getting those ovaries out also.
Surgical menopause is certainly easier to handle than breast or ovarian cancer and an oopherectomy would provide your best protection against both of those cancers.

Unread 02-18-2004, 06:02 PM
Treatment for Uterine Fibrosarcoma

Lady Lawyer,

I agree that a gyn/onc would be a good one to consult.

I've heard that there are certain genetic mutations that predispose some women to breast and ovarian cancer. You can be screened for these mutations. It may or may not apply to you, but it's something to check out anyway. Again, a gyn/onc may be familiar with this.

So sorry that you are in this dilemma at all, but here's good wishes and prayers that you'll be able to resolve it and stay healthy!

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Unread 02-19-2004, 12:06 PM
Treatment for Uterine Fibrosarcoma

I wish I had some sort of suggestion or advice to offer you. But I unfortunately don't. Just wanted you to know that you're not alone, and that making decisions is probably the hardest part of this type of journey. While I like when things are up to me, I also hate when things are up to me. :-)

I hope you will let us know what your gyn/onc recommends and what you ultimately decide. I'm happy that you have something that is so treatable!
Unread 02-19-2004, 12:36 PM
Treatment for Uterine Fibrosarcoma

Thank you to everyone who has sent a reply. Luckily I am seeing a gyn/onc and he is doing the surgery. However, even the doctor is really torn about the ovaries. He acknowledges that the uterine sarcoma has no more impact on the ovaries than on any other organ - i.e. no added risk with respect to this particular cancer by keeping the ovaries.

The concern of the doctors is that my maternal grandmother died of ovarian cancer at 42 and we have a lot of breast cancer in the family - my mother, my paternal grandmother, my maternal 1st cousin (who had breast cancer at 39). My cousin was tested for the BRAC gene and it came back negative so no one is really sure if there is any genetic connection.

In any event, I have been struggling with the idea of taking out my ovaries - which is not necessitated by the uterine cancer - for the sole purpose of reducing the risk of ovarian cancer. I would not take them out at age 40 prophylactically if I wasn't having the uterine surgery - just like I would not do a prophylactic breast removal (and breast cancer is probably my greater risk).

So, as you all know, its just a tough, tough struggle to decide - but I am leaning toward keeping the ovaries and having quarterly pelvic ultrasounds to watch them and then take them out at age 50. Any thoughts on that idea?? - Lady Lawyer
Unread 02-19-2004, 12:43 PM
Treatment for Uterine Fibrosarcoma

Dear Lady Lawyer,

I too had a vey rare uterine sarcoma. My symptoms presented much as yours did. Fortunately, my Dr. had the foresight to remove my ovaries. If he had not, I would have been taken back into surgery..not fun! Many uterine sarcomas are estrogen induced, or they feed off estrogen. Mine was one of them. At 45 I knew I would not be having anymore babies. I have had little or no side effects 14 months out from surgery. No HRT and no problems. My recommendation is, with a rare fibroid..get EVERYTHING out.
Unread 02-19-2004, 01:25 PM
Treatment for Uterine Fibrosarcoma

Thank you Ichurt so much for replying - really! It is amazing to learn of anyone else pre-menopausal with this - so rare apparently. I am thrilled to hear that you have not had problems and that all is going so well for you. I hope that you will indulge some more questions.

My "thing" is actually estrogen negative which is another reason keeping the ovaries is a possibility.

Ques 1: So I am curious why you would have had to go back into surgery to get your ovaries out if you had not taken them with the uterus? Did something show up in the testing of your uterus that made it obvious that the ovaries had to go?

My doctor will look at my ovaries during surgery and if he sees anything suspicious, he will take them - but otherwise, and I might be crazy, I am more worried about the effects of surgical menopause than the risks of keeping the ovaries.

Ques 2: On another note, did your doctor give a name to your uterine sarcoma?

I have gotten 2 diff. path reports - one says "spindle cell tumor - submucoral cellular leimyoma" (which I think is a benign tumor) and the other says "low grade spindle cell sarcoma, possibly fibrosarcoma" (which I think is a low grade, slow growing cancer which appears to be totally contained). So my hesitation with the ovaries is that they are not even sure that the tumor in the uterus was cancerous! Of course, they will know more when the take the uterus - but when they took the tumor, the doctor looked around and said my uterus and the lining looked healthy.

Ques 3: Do you know if there are any blood tests for tumor markers for this kind of thing??

Thank you again for indulging me. - Lady Lawyer
Unread 02-19-2004, 09:17 PM
Treatment for Uterine Fibrosarcoma

Dear Lady Lawyer,

I was having prolonged bleeding pre-hyst, my Dr. thought it was "pre-menopausal" because I was in my early 40's, post 2 C-sections. All Paps and endometrial biopsies were negative. In July 2001, I had a 4 week menses. My OB switched my BC pills after yet another negative Pap smear. With still no improvement, and noticing my uterus had "bulked up" and become "boggy", he recommended a hyst. Ever fearful I asked if he thought I had Cancer. "No, all tests are negative, it is probably due to your age, 2 C-sections and peri-menopause". I was scheduled for January. Early in December, I started "hemorhaging" My Surgery was bumped up when my hemoglobin showed I was anemic. During surgery, my gyn thought my uterus looked "too good" to have such problems, one fibroid showed up deep in the uterine wall. 3 Pathologists later, my diagnosis of an extremely rare sarcoma was made. Because it was in the wall of the uterus, it never showed up on routine exams or procedures. Everything was removed during surgery as a precaution. After three Pathologists studied my fibroid, it was determined to be a very rare tumor, estrogen dependant. No ovaries, no hormone replacement, no soy like phytoestrogen food later, I am cancer free with 6 month pelvic CT scans. If my ovaries (estrogen producers) had not been removed, I would have required a second surgery to remove them. So, at your age, ( beyond normal childbearing years) if you do not plan on bearing children, better be safe then sorry. I feel better than I have in years. No more mood swings, bloating, fatigue, etc. I feel better than ever.
If in doubt, take them out!
Unread 02-20-2004, 08:32 AM
Treatment for Uterine Fibrosarcoma

Well, thank you again for the additional information and insights. We do sound similar in several ways except that I had virtually no symptoms (just increasingly heavier and longer periods, occassional spotting after sex, but no real pain or hassles until I hemorraged on 1/20 and had the "thing" removed 1/21).

My "thing" is estrogen negative so the docs all think that the tumor and my ovaries probably have no effect on each other - neither is likely to impact or harm the other. Apparently the tumor is no more likely to spread to my ovaries than to any other body part (it travels via the blood and is more likely to go to lungs or bones).

After pushing the docs on this issue yesterday, the reasons to take the ovaries are (a) the docs are already there taking the uterus, (b) I have a grandmother who had ovarian, and (c) if they discover anything unexpected after taking the uterus they might have to go back for the ovaries. However, there is no medical connection (that they know of) between the ovaries and this tumor confined to the interior of the uterus.

So in considering these risks, I think that I have concluded that (a) I don't want to take useful body parts just because its convenient to do so; (b) I would not do a prophylactic ovary removal at age 40 due to family history if I weren't having the uterus out so this goes back to (a); and (c) although I don't want another surgery, I think I would rather face that relatively low risk than face the certainty of surgical menopause (as a lot of gals are having multiple negative effects on their daily lives - though some have been lucky like you).

So, as I told my doctor, I don't want to be cavalier or reckless, and I certainly don't want to be pushing my luck. However, boiled down to the basics, it appears that taking the ovaries has nothing to do with curing this particular uterine cancer. Instead, it is about lowering the risk of an unrelated ovarian cancer that does not exist now and that is no more or less likely to develop as a result of the uterine sarcoma - removal of the uterus should cure that.

Apparently the main risk of this tumor is if errant cells have entered the bloodstream they could metastisize anywhere in the body - but if that has not happened (and they don't think that it has), then its all confined to the uterus so if you take the uterus, you solve the problem. And if the cells are already in the bloodstream, taking the ovaries isn't going to change or improve that situation.

On another note, even though I have a relatively high risk of breast cancer (my mother, paternal grandmother, 1st cousin, aunt), I am not doing a prophylactic breast removal - so I don't really want to just do a prophylactic ovary removal either. However, I do know that most docs want to take all of the female plumbing for uterine sarcomas which clearly makes sense for older patients and in cases where there is a connection between the tumor and estrogen production. But I am starting to think that the "take it all out for everyone" approach is akin to the old way of dealing with breast cancer - everyone got a complete mastectomy.

So, whether this will end up being the right decision, who knows!!!! Scary, yes. But, without any evidence of spread or connection to the ovaries, I think I am going to opt to try to keep them with vaginal/pelvic ultrasounds quarterly. Of course, as a lawyer, I like to "argue" my case but would still love to hear from anyone else with a uterine sarcoma experience - maybe you can change my mind! Thank you and everyone for their input!! - Lady lawyer
Unread 02-20-2004, 08:47 AM
Treatment for Uterine Fibrosarcoma

I'm glad you have a gyn/onc to give you advice. I had natural menapause at age 44 and then surgery at 51. So I can't answer if surgical menapause is difficult. I know natural menapause was tolerable.

I read your analogy of not having prophylactic mastectomies because of family breast ca history vs prophylactic oopherectomies because of family ovca. Another factor to concider is that mammograms can on the most part detect breast ca at a much earlier stage. There is presently no realiable test to detect ovca at an early stage.

Best wishes in your decision. I'm sure you will choose what is the best course for you.


Ruth S

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