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Don't Really Know Which Discussion Group I Belong In

moomaus
Posts: 8
Joined: Nov 2008

Hello all. I'm not new to cancer but I'm new to this board. Don't know if I should be in the bladder cancer or kidney cancer group but all help or direction would be greatly appreciated. My husband has been a six year survivor of stage III colon cancer and just received his officially cured credintials September 2009. About three weeks ago, without any warning whatsoever, he experienced visible blood in his urine. We didn't waste any time and after seeing his internist, went straight to a urologist and while there was no more visible signs of blood, under the microscope, there still was. Given his colon cancer history, a ct scan was order which showed no tumors but a shrinkage of the right ureter. By the way, his scans in September for the all clear of colon cancer showed ABSOLUTELY NOTHING. He then went for a ureoscope (?) and they found what they believe are two tiny tumors in his right ureter...one near the bladder, the other near the kidney. Make a long story short and while we don't have the pathology report yet, they are moving quickly and he is scheduled for surgery December 31, 2009 to have his kidney and right ureter removed (no mention yet about the bladder as apparently it is all clear. I find so little information on this subject as I know this is a very uncommon form of cancer; highly cureable if in the early stages, not so great if not. All indicators thus far show that it is contained within the ureter but how can something like this not show up two months ago and now it's there. Please to anyone, advice, encourage, information, whatever would be so greatly appreciated. Thank you.

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

Sorry to hear about the recurrence. Bummer!
All I can say is when the darn thing decides to grow, it just does. With my original kidney and liver and nodes surgery in 06, they felt they had it all. Feb. 07 the CT was OK, in May there was a node growing. The same story was repeated in 08 -clear in Jan. 08, but not in May.

I guess you just go with the surgeon. You will definitely need to find out from the path report if it is a mets from the colon cancer, or if it is a type of kidney cancer. Each kind has a totally different type of treatment and what is available to your husband. Colon cancer can be treated with radiation and chemo. Kidney cancer is an odd duck and doesn't respond to radiation, and they don't use what you would consider "chemo". They can use interleukin II, Interferon, Sorafinib, Sutent, Affinitor--which either boost body immunity, interrupt turmor replication, or starve out the blood supply...but none of them offer a traditional cure.

To paraphrase a famous author, "Get thee to a Cancer Support Group." With your husband, of course. They can be a valuable resource, a place to ask questions, and a lot of emotional support. I sit between 2 other survivors. One is an 11 year survivor who had a 13 lb tumor removed along with her left kidney. Because of the way it was growing, she later had to have 10 inches of colon removed because the colon died.
The other survivor is only 2 1/2 to 3 years past surgery, but hers mets to the lungs. She had a lobe-ectomy and went on interleukin until the side reactions to her heart made the dr. take her off. Right now, they are monitoring with CT's every 3 months.

As for me, I had a scare earlier this year and had CT's in Jan, Mar, May, and again in Sept. So far they have determined I have an hemangioma (like a big strawberry birthmark in the liver) and a cyst that grew in the liver. I saw the oncologist 2 weeks ago, he said come back in 3 months, and we'll plan a CT after that.

So I "pretend" everything is normal and live my life to the fullest, which is all anyone could ask. We met at a halfway city with kids, their spouses and the 4 grands this past weekend and enjoyed the beach, the rain, and the visiting.

Hang in. There are a lot of us out here to help prop you up.
Donna

moomaus
Posts: 8
Joined: Nov 2008

Thanks so much for the encouragement...I can't tell you how much it's appreciated. The good news is they honestly don't feel that it's a recurrence of the colon cancer...infact, with the preliminary biopsy results coming back as inconclusive, they only feel at this point that it is cancer and again, not sure if kidney to the ureter or bladder to the ureter because nothing was seen in kidney or bladder and only in the ureter. I guess we'll all know more when they go in there surgically on December 31. I won't hold out but there is a 5% chance it's not cancer at all but some sort of other growth. The urologist seems to strongly feel that it is cancer and I suppose he's seen enough to know the difference without even needing the confirmation of pathology. I also have heard that transitional cancer has a very high recurrence rate...that is what scares me the most.

I think that my husband will be just fine but I really just hate like heck to have to see him go through all of this again. If it is ureter cancer, there is not much information out there about it and I'd love to find someone who has actually had this cancer and is well and around today to talk about it.

I thank you again so very much for your response. You are the only one who has. Stay in touch please.

Monika

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