Writing on behalf of my husband

4 years 1 month ago #53292 by BillO
Writing on behalf of my husband was created by BillO
Somehow just starting this post is very scary! This new chapter in our lives feels quite surreal.
My husband is 59, a non-smoker and in otherwise really good health. We live in North Carolina.
He found blood in his urine about a month ago and finally found a urologist who could fit us into his schedule two weeks ago.
A biopsy from a cysto revealed cancer cells and last Monday, Appril 24, he had a TURB. We were fortunate to receive the pathology on Thursday. It is: Invasive high grade urothelial carcinoma with deep detrusor smooth muscle invasion.

There was not definite invasion of the muscle so I think at least that is good news. The rest seems really bad.

We have an appointment at Duke on Wednesday morning with a bladder cancer specialist to recommend what happens next. Both of us are trying with little success not to be scared out of our minds.

On Thursday the doctor told my husband he could resume his normal activities and my husband is a very active person. He had a catheter removed on Wednesday. After doing some moderately strenuous garden work he started bleeding on Friday. And the bleeding is continuing with clots. Does anyone know if this is normal? Of course it has to happen on the weekend, right??

Any calming words or thoughts would be appreciated. This seems like a wonderful resource and community. For now my husband is finding others' stories too frightening but I find them reassuring.

Thanks in advance!

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4 years 1 month ago #53297 by Cynthia
Replied by Cynthia on topic Writing on behalf of my husband
Many of us have been where you two are at the moment for myself it started in 2004 at 49. I am still here living as normal a life as most. It is a matter for most of us getting through treatment and adjusting. I know that sounds impossible right now but take this a step at a time. Duke is a good place for a second opinion, get the facts find out the options and you will be feel better once you know your game plan. Of course you are both scared who wouldn't be but remember we are here if you need us.

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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