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Keep bleeding -unable to get BCG for urethral cancer

9 months 1 day ago #54884 by Cynthia
The more I read of you and your husbands situation the more relieved I am that he is going to what I hope is a center of excellence for bladder cancer. Being in health care I am sure you both know that you need someone that is just not a Urologist but one who does nothing but urological cancer. Remember we are here and are happy being your sounding board if you need one. Please let us know what is going on.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 months 1 day ago #54883 by petuniafish
Thank you Cynthia. You sure have been through a lot and come back swinging. Appreciate your input.

The reason my husband would have to have both a penectomy and cystectomy is that it is a promiximalcancer of the urethra. Obviously the male urethra is much longer than the female's and doesn't have the supporting tissue to uphold the urethra like we females do. Also while urethrectomy is done for distal carcinomas, usually squamous, it is not possible with a proximal cancer. There are too many adjacent structures like the prostate which would also have to go and make urethrectomy at that level impossible. Also have to do a cystectomy along with it as about 99% of proximal urethral ca involve the bladder neck. He is totally totally against both penectomy and cystectomy and no pleading or cajoling would ever change that. He's cared for patients with the same and he'd rather die than have iit.

He can't have a cysto as long as he still hopes that he can have BCG in the next few months. The diameter of the cystoscope is about twice that of the urinary cath they are using on him and would tear whatever is in there that is causing the bleeding. My husband's internal med doctor already told him to forget that he'd ever find any urologist willing to do a cysto under his circumstances unless he's gone on 6 months without having been able to get a BCG treatment due to bleeding.

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9 months 1 day ago - 9 months 1 day ago #54882 by Cynthia
Petunia, I had TCC of the Ureathia and they were able to remove the ureahea and leave the surrounding tissue. I would definitely have a conversation about this with the doctor you are meeting for the second opinion. I am glad you are getting a second opinion as finding out what is causing the bleeding so you can get on with the BCG, CIS has a very high response rate to BCG treatment. A scope is perhaps needed to find out the source of the bleeding.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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9 months 1 day ago #54880 by petuniafish
Hi again Sara Anne,
He would have to get his penis removed because it's in his urethra. Unknown if it's also in the bladder but since the urethral cells are urothelial cells, it's considered both urethral and bladder ca. Can't even do a cysto to take a look or cause more bleeding and more delay for BCG. The diameter of the cystoscope is much larger than the cath that's trying to be inserted.

I'm a nurse and I've watched the urology nurse attempt to place the catheter and she is very good- better than me and I thought I was good. And she uses the smallest diameter catheter with a ton of lubricating jelly. Don't think anyone could do better.

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9 months 1 day ago #54877 by sara.anne
The words “stubborn “ and “ male “ are synonymous! Whoops I really didn’t say that, did I?
Seriously, I would wonder if the BCG problem isn’t with the administration technique rather than with your husband.

And wherever did he get the idea that he would lose his penis if he needed to have his bladder removed? I have a number of friends with no bladder who lead full lives even scuba diving and race car driving as well as satisfying sex lives.

please let us know what the second opinion advises

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 months 1 day ago #54876 by petuniafish
Thanks Sara Anne. Husband is terribly stubborn. Knew his "best friend" would be the urologist, and that man is a cold fish. It's taken a few months to convince husband he needed a second opinion. If husband's cancer becomes invasive he refuses surgery. Says he'd rather die than lose his penis and bladder. He's been stupid all his life- just kidding but he will stick to his guns despite the many here and many he knows who've had the surgery. We are both retired health care workers so he's dealt with many men and women who've had the surgery.

There's no answer except to hope that he stops bleeding and can get the darn BCG. Thanks for your help :-)

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