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New DX - didn't see this coming

3 years 3 weeks ago #51832 by sara.anne
You do have our support....wish I could give you a big hug << >>>!
It is wonderful that you are a support for your husband. Do hope that he realizes how fortunate he is to have you now and for the journey ahead.

It is also great that the urologist has referred your husband to a place competent to handle what may be a complicated situation. He does need to be in a place that handles many many cases of bladder cancer, particularly those with complications.

In spite of the fact that right now your husband does not want to do any research, he is going to be faced with some decisions and would do much better with these if he were informed. Looks as if you may have to be the "research assistant" for him. There is a lot of information in this web site as well as online which should be helpful. Many patients have been where your husband is now and are living very full and satisfying lives with many many good years ahead of them. A lot of the quality of life ahead depends on a fighting spirit in the patient.

One decision which he may be asked to make is the TYPE of diversion that will be used after a radical cystecomy. Depending on the location of his tumor(s) and other complicating factors, all of these may not be available to him. However, he should be aware of them and ready to discuss all the options he is offered. The following web site
has an excellent discussion of these options (with thanks to Alan who found it!)
http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

The urologists may also recommend chemotherapy before a radical cystectomy. The following web site covers all sorts of eventualities including chemo either before or after
http://www.cancer.org/cancer/bladdercancer/detailedguide/bladder-cancer-treating-by-stage

In reading what I have written here, I am aware that I may have given you more information than you want right now. But you seem to be facing the reality of the situation and, as your husband's advocate and "research assistant" you may want to check these out over the next few weeks.

Please feel free to ask any questions that may come to mind here. We are not doctors, but there are many here who have faced the same issues you and your husband are facing and who can offer their thoughts also.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 3 weeks ago #51831 by JMack
Hello. My husband, who is 58, was diagnosed with bladder cancer a little over a week ago. He had surgery to evaluate the mass, and biopsy, and as of this moment have not received the pathology report but Urologist says defintely cancer. From the CT scan(s), Cytoscopy, blood work, and MAG3 study - all point to same DX and we also found out that the mass has been partially obstructing a ureter and MAG3 shows kidney is non-functioning. The other kidney is working but only at around 75%. No guess as to how long kidney has been non-functioning. Urologist believes the tumor has gotten outside the bladder wall and has referred us to UNC Chapel Hill - and we are currently waiting for an appointment. The Urologist is sure that the bladder, prostate, etc. will have to be removed.

We have been married 20+ yrs. My husband is one who keeps emotions inside. He is not interested in reading about treatment options or any articles about bladder cancer. He stopped working about a month ago - before the diagnosis - because it turns out he had been having symptoms that he didn't get checked out before they made it impossible to work.

I joined the forum so I could understand the disease, treatments, and support from other caregivers.

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