Dx single Stage 2b, high grade bladder tumor

5 years 9 months ago #49104 by raharris3
I am currently on an extended 8-month stay in Vietnam with my wife of 44 years and have been splitting time between US and Vietnam for the last few years. I am a retired US Army CW4 who grew up in Saudi Arabia with both parents afflicted with bladder cancer, but in theor late 70s and mid 80s. I am now 64. One day in late May I had red urine, but we were leaving Danang shortly so I waited a few weeks until we got to Dalat, when it happened again and I immediately went to the local hospital in June.

1st, blood in urine prompted blood work and Ultrasound. The Ultrasound report stated I had a Bladder Stone, which I did not agree with so I insisted on a CT, and it reported a bladder tumor. Then in July I went to Saigon for the Cystoscopy. There were 2 different groups of tissue specimens sent to 2 separate laboratories. The first one received stated Transitional Cell Carcinoma, Low Grade. The second stated a higher grade problem. Next, I had the operation (TURBT - partial cystectomy)which resulted in the samples for Post Op Partial Cystectomy. I know I have Stage 2 Bladder Cancer, but the surgeon assured me that the tumor had not grown through the muscle of the bladder. I am still waiting for the Operative or Surgical Report. As part of the surgery, I had my first of 6 weekly 1-2 hour intravesical chemotherapy treatments with Doxorubicin (Only 2 more to go), to be followed by 6 monthly treatments. In addition, based on partial cystectomy pathology, I will report for systemic chemotherapy with Gemcitabine and Cisplatin tomorrow. I will also discuss radiology options and sampling local lymph nodes for any potential spread. Their goal is to try to preserve my bladder whilst stopping any possible spread of the cancer to avoid the need for a radical cystoprostatectomy.

I am comfortable with treatment here - they are following NCCN protocols, but the system is different. I was hospitalized for 18 days for the cystectomy and 3 intravesical treatments and will be hospitalized again for the systemic chemo with doctors and nurses monitoring my reaction and treating as required. I like this better than dealing with it alone at home with my wife getting more and more upset with my discomfort. Good food is readily available and she has a very good support network here of family and friends and I am part of the group as well. So my stay will be extended this year from 8 to 11 months to complete treatment. If we are unable to get satisfactory results, I will face losing the bladder and I would either return to the US or go to Bangkok (Bumrumgarand) or Singapore for that procedure.

What am I missing? Does this plan make good sense? What should I look out for? I'd appreciate any help. I've definitively known I had cancer on July 6th and have had the TURBT with partial cystectomy and 4 intravesical treatments since then and start chemo tomorrow, so I have tried to learn a lot in a very short time. I'd appreciate feedback from all of you.

Bob H

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5 years 9 months ago - 5 years 9 months ago #49107 by Alan
Bob,

Welcome, glad you found us but also sorry you have to be here! .Also, thanks for you service. While I was TaG3, I was and am still prepared to have a cystectomy if the need arises (T2 or more). Most of us would tell you to go ahead and take that bladder out once it hits the muscle (stage 2). Peruse this site for all kinds of information. In rare circumstances a partial is done in trying to preserve it. I know this is not what you want to hear. Also, this is a very tricky cancer with a high rate of coming back. I would definetely get a second opinion, especially with the changes in diagnosis from the original tests(scans and pathology) for peace of mind. I would be asking what else might be changed or read incorrectly. Also, radiation is normally not done as adjoining tissues are sometimes damaged precluding some types of diversions.

Everyone's cases are all slightly different and none of us are doctors. However, being aggressive on this is usually the best course of action. Being overseas complicates things. Perhaps someone will have experience for a hospital in SE Asia.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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5 years 9 months ago #49108 by sara.anne
Replied by sara.anne on topic Dx single Stage 2b, high grade bladder tumor
Bob, so sorry that you are joining us!!

It is difficult to comment on your diagnosis and treatment, since things are done so differently in different countries. Exactly what was your "partial cystectomy?" That is rarely done in the US, and then for certain rare types of bladder cancer, not TCC, since TCC puts the entire bladder lining at risk.

I would echo Alan's comments about radiation. IF at all possible, I would avoid it. (Please do remember that we are not physicians, so are speaking from what we have heard, not a medical training background.) Once radiation is used, it is very difficult for any other treatments to be used. I would strongly suggest aa trip to Bankgok or somewhere that has sophisticated physicians with really great training.

If you have read much of this Forum, you will notice that our motto is "get a second opinion!" It is too important to be sure that you are headed down the right path.

Sara Anne

Best of luck to you

Sara Anne

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

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5 years 8 months ago #49109 by raharris3
Replied by raharris3 on topic Dx single Stage 2b, high grade bladder tumor
Thanks,
My sons are both in medical jobs and everything is being funneled through them and onto their expert friends to ensure we're moving in the right direction. Other than not immediately removing bladder, so far so good and it is not actually TCC elsewhere as I thought - I'm waiting on a clear English definition so I can understand what it is.

Bob H

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4 years 11 months ago - 4 years 11 months ago #51171 by raharris3
Replied by raharris3 on topic Dx single Stage 2b, high grade bladder tumor
After having to extend my stay in Vietnam until May, I have just returned from US Urologist at FL Hosp (#21 nationally in Uro)after cyctoscopy and am happy to report that the immediate surgery, 6 intravessical Tx with Doxyrubicin and Mitomycin, followed by 3 rounds of 4-week cycle Gem-Cis appears to have been successful. My CT in Feb showed no evicewnce of cancer and Cystoscopy in May confirms this. Repeat cystoscopy in 6 months. My bladder capacity has been diminished to 150-200 ml by treatment, but everything still works. Also, my initial diagnosis was changed to T3 from T2.

Bob H

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4 years 11 months ago #51175 by Nicke
Bob,
Thanks for the update!

You did mention earlier that your cancer was not TCC. Do you know what kind it was?

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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