VAL:Worries about Leiomyosarcoma/Hydrosalpinx

[Guest guest]

Dear Val:

First, try not to panic. Fortunately, with fibroids, and hydrosalpinx, and

even possible endometriosis, you DO have TIME to contemplate your next move. You

have time to ask LOTS and LOTS of questions. So, fire away!

Remember: this list was founded by Carla - " Ask- LOTS- of -Questions- " Dionne,

who encourages us ALL to make informed decisions in order to avoid

inappropriate treatment. We can't possibly get all the answers we need unless

we ask

the right questions, and gather all the information available.

The concern about a uterine fibroid being confused with a leiomyosarcoma

comes up so frequently on this list, maybe we should repost this information

every

couple of weeks for new list members.

To cover all our bases, maybe we should ALSO send press releases to ALL OUR

UNINFORMED GYNOS, as well, with the appropriate information--so they can stop

scaring patients into undergoing unnecessary hysterectomies.

In any case, Val, rest assured that you certainly DO NOT need to have a

hysterectomy to resolve the question of whether your fibroid may actually be

what

is a (rather rare) malignant tumor.

Instead, I quote from a recent post written by veteran listmember Leonie

Finkel who goes on to quote gynecologist Dr. H. , MD in her

response.

Leonie wrote:

" There now are a couple tests which together can predict without the need for

surgery with a very high degree of certainty whether or not your tumor is a

fibroid or a leiomyosarcoma. If it turns out to be a fibroid, as the odds

favor, you can then safely watch and wait to see if stopping the estrogen

causes it to shrink, proving your symptoms are not harming your health.

Below I quote from a post regarding these tests to this list from Dr. Bill

, a member of NUFF's Board of Directors and a researcher at UCLA and

clinician in private practice in Los Angeles.

" ..there is a better way to diagnose sarcoma now, using MRI with

gadolinium and a blood test for LDH isoenzyme 3. Here is the reference:

International Journal of Gynecological Cancer, Volume 12 # 4, Page 354, July

2002 Usefulness of Gd-DTPA contrast-enhanced dynamic MRI and serum

determination

of LDH and its isozymes in the differential diagnosis of leiomyosarcoma from

degenerated leiomyoma of the uterus. Author- A. Goto "

-----------------------------------------------------------

As for your hydrosalpinx condition, (fluid in the fallopian tube), this

*could* be corrected with laparoscopic surgery.

*******However, the question I would raise with your gynecologist, is WHY

BOTHER TO TREAT IT?****** You really don't need to undergo surgery to fix

hydrosalpinx, UNLESS it appears to be causing impacting your FERTILITY, assuming

your

infertility is even a factor in the equation. Or, if you are troubled by

repeat tubal infections. Are you?

Otherwise, my layperson opinion about that Hydrosalpinx is: (In the timeless

words of Lennon/McCartney-- " Let it be. "

One of my best friends (age 48) was diagnosed with hydrosalpinx earlier this

year. She'd never had a tubal infection, but she had undergone surgery to

remove an ovarian cyst, years earlier.

Scar tissue from surgery, not infection, was presumed to be the cause of HER

hydrosalpinx.

Her doctor said, not to worry, because he could " fix " the one-sided

hydrosalpinx with lap surgery. But my friend doesn't have the time or the

inclination

for any surgery. So on my strong recommendation she carefully cross-examined

her gyno about the NEED FOR THIS SURGERY, and he conceded that for her (and

fertility is not an issue), she didn't have to have it " fixed. "

That's one patient and one doctor's experience. But, I, as her friend tried

to research possible adverse effects of untreated

hydrosalpinx, and in my research (admittedly not exhaustive) I could NOT turn

up a good reason for intervening, unless fertility were an issue.

If anyone else can come up with any other compelling, medically documented

reason for correcting a hydrosalpinx, I'd love to know--so I can tell my dear

friend!!

Here's a helpful " Fact Sheet " on hydrosalpinx prepared by the American

Society for Reproductive Medicine.

http://www.asrm.org/Patients/FactSheets/hydrosa.pdf

As for the CA-125, as a diagnostic tool in premenopausal women, it is

notorious for

false positives. The presence of pelvic infection, cysts, endometriosis,

fibroids, even pregnancy can cause a high CA-125.

I hope this information is helpful to you.

-Roma

The MRI discovered two more problems that my gynecologist is concerned about.

Areas small of generation were identified within the large fibroid. From what

I have read malignancies such as leiomyosarcoma may appear on MRI as a

degenerating fibroid and cannot as yet be differentiated from a benign

fibroid

undegoing degeneration. Therefore, my doctor suggests to have a surgery

(hysterectomy), I don't want to have it unless my condition is really

life-threatening.

I

don't know what to think, I am scared, my CA-125 is elevated (406), the MRI

report suggests that although not specifically identified, endometriosis

cannot

be excluded. The doctor thinks CA-125 elevation may be as a result of my

fibroids and left hydrosalpinx that MRI also found (Intermediate signal on

the

precontrast T1 weighted images within the tube suggests the possibility of

hematosalpinx. No significant adjacent inflamatory changes identified to

suggest a

tubal abscess).

So, as you see, I have a bouquet of symptoms and concerns ( fibroid

degeneration, CA-125 elevation, left hydrosalpinx) and I want to ask those

ladies who

have the same problems or who have some information about these conditions to

help me to make my educated decision. I would like to avoid the surgery, I

noticed that I am less in pain now (I am 46), but I am tired all the time

though

my blood work demonstrated no evidence of anemia. Is there any way of

treating

swelling of fallopian tube? Any advice is highly appreciated.

Best wishes to all,

Val