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Damsel in Distress In Need of Advice

12 years 1 month ago #19496 by shragae
We don't know that it IS a leimyoma -- that was the path result from the Ob/Gyn but the Top Doc didn't trust the result.

There are NO uterine tumors. Everything in the uterus was fine -- the tumor is definitely in the bladder.

We do not know if the tumor is benign or cancer.

We don't know much of anything!

The good news is that my sister has a friend who is the widow of a surgeon and a former OR nurse. She has offered to be my sister's advocate so hopefully that will help us move forward.

God willing it is leimyoma, but whatever it is the bladder is being destroyed by it (denuded). Hopefully we'll know more soon. This has been going on for six months.

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12 years 1 month ago #19488 by pemquid
I was going to reply earlier, because someone I know had a uterine tumor that might have impinged on -- and into-- her bladder. It sounds as though this might have been the case for "damsel in distress," though the type of tumor is not be the same. As I understand it, uterine fibroids are a type of leiomyoma, but there can also be primary leiomyoma tumors of the bladder itself (a rare type of bladder tumor), which seems to be the case here .

Knowing that leimyomas are benign must be a relief. You've apparently known that this was a leimomyoma since getting the ob/gyn pathology report. I gather that a big concern is about the timing of the surgery, lack of communication, etc. But, at least if you have the name of what it is, you can do your own research and reassure yourselves that it's not malignant, uncomfortable though the symptoms may be, and unhappy as you may be about not getting the surgery scheduled sooner.

My acquaintance's situation was somewhat different, but may be worth describing in case anyone else has something similar happen. She was some years post-menopausal, but had been having sporadic problems with pain, bleeding, etc. for several years, for which the gynecologist could not find an explanation. Scoping of the uterus and other testing didn't reveal anything untoward. However, my acquaintance finally got the dr. to do at least exploratory surgery, and lo and behold, she had a large uterine cancer. It was fortunately a type that is called "indolent," i.e. very slow growing and not likely to metastasize. Dr. took out what she could, but it was so close to the bladder that the dr. was concerned. So, they did internal radiation (rod inside for several days at a time) to shrink any remaining mass. Then, my acquaintance went to another city where there was a good gynecological oncologist, plus a urologist on call, and had surgery to "clean out" what remained. Urologist didn't think the tumor had penetrated the bladder wall, but he was on-call for the surgery just in case. There was indeed no bladder penetration, and the remaining tissue just "peeled" nicely away. There's no metastasis, no remaining tumor, and all is well.

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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12 years 1 month ago #19456 by Gene Beane
By golly Pat I think you got it!!!!SO THATS THE ANSWER, AND THATS WHY NO BLADDER REMOVAL..AMEN,,,,Pat you are the best at this research thing!!!
So girls thats what you are dealing with, now its time to make up with the Doctor and get the best result!!!! hope it goes well,, let us know!!
Ginger

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12 years 1 month ago #19449 by Patricia
ok..new word...leiomyoma.....check this out and some of the other links to the right of the page.
http://www.ncbi.nlm.nih.gov/pubmed/2683666
Pat

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12 years 2 months ago - 12 years 2 months ago #19443 by shragae
OK, from the beginning.

My sister went for an annual OB/Gyn appointment and her doctor discovered a lump. She sent my sister for an MRI and it appeared the lump was a bladder tumor.

Two urologists (one who did a cystocopy) said it was too complex for them. anuary 21 another MRI showed it to be a bladder wall submocosal tumor protruding into the bladder with central necrosis.

They suggested she needed a top doctor at a top hospital. She was referred to said top doc who did a cystoscopic eval and he found no evidence of any submucosal lesion. (This is all from the Gyn path report). Top doc thought it was a suberosal uterin myoma.

DS went back to an oncological GYN who did a laproscopic procedure. He found the uterus and ovaries were normal. Palpitation of the back side of the bladder found the mass which appears mobile. The gyn entered the bladder and made a cystotomy. When the bladder was open they could clearly see a large mass protruding into the cavity of the bladder. The mass appeared to be attached to the bladder immediately below the entrance of the urethra into the bladder.

The OB/Gyn took a biopsy of this mass. the location of the mass is clearly submucosal and within the bladder. The Gyn terminated the surgery because resectioning the mass would entail ureteral stent placement to ensure no injury to the urethra. Gyn said she needed to go back to the urologist. . .

The OB/Gyn biopsy says the mass isa urniary leiomyoma with focal degeneration and minute fragment of benign urothelial mucosa.

Top urology doc wanted to perform his own biopsy which is why top doc performed a TURB on 7/30 -- results of which have been discussed here.

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12 years 2 months ago - 12 years 2 months ago #19441 by momof4
SavvyPRpro,

If your primary asks the hospital for copies of all of your records maybe he can make heads or tails of it...I think since you have a good relationship with him that could be a viable option for you...

Cancerous Bladder tumors tend not to be very symetrical, if that is any consolation, not that there cannot be acceptions...some are mushroom shaped, others that look more like leisons than tumors, similar to placenta in the way they form along the bladder wall attach and can penetrate through it. Some look like coral or a cactus, and still others are noninvasive and flat, not penetrating the bladder at all.

You seem to be having alot of problems with this office, it may be time to just change Dr.'s, however, it may just push your date further back than the scheduled time you have now...that is a decision you will have to make.

I sincerely hope that it is nothing serious, and I want nothing more than to give you some peace, especially since it is the weekend...but tomorrow is Mon. and hopefully you will get the answers you need then.

I wish you well,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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