transitional cell kidney cancer now in bladder

17 years 2 days ago #4574 by shernor
Beebo, Sorry to take so many months to reply to your message! I haven't been on the
message boards for a long time, and when I got on today saw your message!

My husband had his surgery to remove the ureter stump in September. It was rough, but worth it to get rid of that high grade cancer! He had BCG in the fall, CLEAR cysto in January! Another round of BCG he just finished last week and a cysto coming up in April. He is getting back in shape, drinking lots of water and green tea, taking Oncovite and feeling pretty good!

How are you doing?

Shernor

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17 years 7 months ago #1059 by Beebo
Shernor,  Thanks for replying to my post, yes B/C is tricky, but I feel we can lick it. However try and keep your husbands immune system high, very important. My BCG treatments start on 8/11 one week for six weeks, then a cysto. From what I read BCG should help a lot in B/C, and I realize it's on our minds a lot. I'll try to keep you guy's posted on my results, and the best to your husband. Get the stump out and move on. As long as we catch these things early were alright, don't even think about bladder removal, as your on top of things. Best of luck.

Beebo P.S. Let me hear something good next time :)

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17 years 7 months ago #1056 by shernor
Hi Beebo, Your journey sounds a lot like my husbands. However,he did have chemo after the kidney was removed. He has cystos and ct scans every 3 months. Unfortunately he had tumors on his first cysto after surgery! They were low grade, the next time they were high grade. He then had BCG (he had a lot of discomfort the day of treatment, passing blood clots and mucous: drink LOTS of water afterward!) The most recent was last Friday where they found no new bladder tumors (a BCG success) but there is a tumor in the "stump" of his removed ureter. It is high grade, so the stump is coming out. Diligence in followup seems to be the name of the game with this tricky disease. good luck

Shernor

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17 years 7 months ago #1050 by Beebo


Hi Shernor,

Your husband is not alone on Sept 2005 Ihad my left kidney removed with the ureter tube also. I had the surgery done at Cleveland Clinic Florida. Fairly simple procedure 2 small holes and a 4" insision to pull the kidney out, I left the hospital in 2 days. The doctor said cancer was stage 2 and it was confined inside the kidney, how ever it was Transitional cell kidney cancer (TCC), and I did not need any furter treatment, except cysto's every 3 mo's also, I said to the doctor why do I need cysto every 3 mo's, he said this type of cancer, is prone to reacurr in the bladder and if it does were getting it in a early stage. Well I had 2 cysto's and they were fine, the 3rd he found 2 small cancers this was in July '06. Now in my mind I didn't even make it a year cancer free. I had Turo something like the cysto to remove these 2 cancers. They were caught in the early stage, they weresuperfical and non-invading. Went back for my follow up yesterday the doctor said these were very common, and also said that they were about the same as skin cancer, but in the bladder and left alone could be a serious problem. So now I'am set up for 6 weeks of BCG treatments 1 per week, then after that another cysto exam. How did your husband do on the BCG treatments, did he have any side effects? My feeling is this on mine and your husbands case. If we worry, it will not make us better, however I think we must ty and build up our immnue system were it was 20 yrs. ago or close to it. Currently I'am doing this with supplements, and I feel good, also excerise,drink lots of (Good) water (flush) take deep breaths to full our body with fresh oxagen. Let the doctor do what they have to do to help us, but I feel that we have to do things to help ourselfs too. When I say build your immune system build it high and keep it there. This is what will fight TCC. Green tea is good too. Go to a GNC or Vit. Store and tell the clerk you what somethig to build up the immune system, currenty I'am taking 1000mg of Ester-C with  Bloflavonoids 500mg 2 a day and Coral Calcium 500mg 2 a day and Maitake Mushroom Extract 3 a day. And before bed 2 oz. of herbal tea with 2 oz's of water. been on this for over a month now and feel great. I'am not saying to take what I'am taking this is just an example for you. I told my doctor and he said that's fine. The reason for Ester-C instead of regular C is that Ester C-there is no acid like reg. C. Cancer loves acid. Hope this makes a little sense, and I feel that we have to do our part and help our bodies heal. As I was told they don't know why these cancer come back and there is a 2% chance it could reoccur in the good kidney, I don't like the whole story and more that you nor your husband or the next person, I do beleive that if we take care of ourselfs we will live a long and normal live, what's a few cysto's or
cancer's removed as long as they get them early.  There's a big world out there lets go see some of it. If we have to live with B/C and testing so be it. Were still alive,  make the best of it. By the way,I'am 64 years old, and I can't say I don't think about it, but it could be worse. God Bless and take care.


Cordially,

Beebo            P.S. Excuse some of the spelling

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17 years 8 months ago #863 by survivor
Replied by survivor on topic transitional cell kidney cancer now in bladder
Hi Shenor,
I had TCC of the ureter , had kidney& ureter removal surgery in Dec 2004.Going for regular MRI,cysto every 3 months till now . In the bladder webcafe, if you look at "Upper tract TCC", you will find people who have had their surgery with further recurrence in the bladder. You can send mail to them to find out about the treatments. I have had no incidence of cancer so far after my surgery and chemo (cisplatin/gemzar).
Hope this helps.

-Shoba

S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012

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17 years 8 months ago #840 by shernor
I am new to this forum.  My 59 year old husband had TCC of the kidney.  The kidney and ureter were removed Aug 2005.  Chemo w/ Gemzar/Cistplatin followed, with CT scans and cytos every 3 months. All CTs are clear.   First cysto showed low grade papillary tumors in the bladder which were removed.  2nd time he had non-invasive high grade  tumors.  They were removed and mitromycin (?) instilled in the bladder.  He has just finished one round of BCG treatments and is scheduled for cysto on Aug 4.  We have met 2 men locally who had their bladders removed recently and are concerned that we are on that same road.  With all of the research I have been doing, I have found this message board to be very helpful! There is certainly a lot of information about bladder cancer, which I found was not the case with his type of kidney cancer (since it is usually in the bladder)  Does anyone know of data concerning outcomes, recurrance, etc... when the cancer started in the kidney and then spread to the bladder?  Thanks!  shernor

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