Quality of Life Questions

1 year 1 month ago #61621 by joea73
Replied by joea73 on topic Quality of Life Questions
Thanks for sharing the detail pathology report.

So, your tumor is TaHG.  The tumor is in the first layer - epithelial tissue of the bladder wall.  It has not progressed to the next tissue (connective tissue / Lamina propria).  The specimen included muscle tissue ( Detrusor muscle) but found not tumor. So, it has not progressed to muscle tissue.  Because it was a solitary tumor and less than 3 cm.  Your tumor is classified intermediate risk.

AUA guidelines says 
  1. In an intermediate-risk patient a clinician should consider administration of a six week course of induction intravesical chemotherapy or immunotherapy. (Moderate Recommendation; Evidence Strength: Grade 
  2. In an intermediate-risk patient who completely responds to an induction course of intravesical chemotherapy, a clinician may utilize maintenance therapy. (Conditional Recommendation; Evidence Strength: Grade C. 
  3. In an intermediate-risk patient who completely responds to induction BCG, a clinician should consider maintenance BCG for one year, as tolerated. (Moderate Recommendation; Evidence Strength: Grade C)
I think your urologist did a good TURBT as the specimen included muscle tissue, which follows AUA guideline.

I was diagnosed as TaG2.  Before G1,G2,G3 were and still be used often in Europe, then WHO changed it to LG, HG.  So,, a part of G2 is now classified as LG and the opposite scale of G2 is now HG.   My urologist chose TURBT,  4 months later, another biopsy to see anything is found.  In my case, nothing was found, so he put me on surveillance by regular cystoscopy only.  I asked him one day why he did not take biopsy from muscle tissue as my pathology report said muscle tissue was not included in the first TURBT.  He said he did not do it because my tumor was not even in the connective tissue.  I have noticed that he does not follow the guideline line by line, but he has over 30 years of experience. Anyway, I have not had recurrence for 5 years.   I mentioned my experience as to see if you should go to another hospital who has BCG rather than wait without knowing when you will get it.   TaHG is intermediate risk by the guideline, but it depends upon how high your HG is.   Below chart shows recurrence free for T1G2, G3.   With intravesical BCG therapy, the recurrence free survival was the best for G2,G3 (black line).  It seems to make more sense to look for BCG rather than doing frequent cystoscopy to find out if there is recurrence.   My concern is propensity of  progression of your HG tumor.  50% of HG are known to progress without proper treatment.  Some patients faced with BCG shortage phone around other hospitals to see if they have BCG.  Sometimes urologist call other hospitals and borrow BCG.   In case intravesical chemotherapy is chosen, use Gemcitabine + Docetaxel sequential treatment as recent study by Iowa University team reported very good result for BCG naive patients.  I know often community hospitals do not provide GEM/DOC treatment as it takes three hours instead of 30 min for BCG and it requires training, but most academic hospitals should be able to do GEM/DOC. 

  

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1 year 1 month ago #61620 by Straphanger
Replied by Straphanger on topic Quality of Life Questions
Diag:
    Urinary Bladder, (Excision/Resection), bladder tumor:
  1. Papillary urothelial carcinoma, high grade.
  2. Lamina propria invasion is not identified.
  3. Detrusor muscle is present and is negative for tumor.
 
Microscopic Description
Deeper levels were examined.
Gross Description
A. Urinary Bladder, (Excision/Resection), bladder tumor: Received in formalin labeled "bladder tumor" are multiple fragments of cauterized gray-tan papillary tissue and in aggregate measuring 3 x 3 x 1 cm. Specimen is entirely submitted labeled A1-A3.

It was suggested that I was experiencing adrenal fatigue due to the tumor's location. As I said - I've been in the OR more frequently than I'd like, fortunately almost all orthopedic issues. Odd feeling, not sleepy just absolutely zero energy. I had a few acupuncture treatments and it cleared up quickly. 

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1 year 1 month ago #61619 by joea73
Replied by joea73 on topic Quality of Life Questions
HI Straphanger,

Can you share what your pathology report said?   I understand it was 1.8 cm in size. The pathology report should say
how many specimen the pathologist had received and if tumor had progressed to connective tissue or lamina propria. This will tell us if it was TaHG or T1HG.   Also, the report should say if the specimen included muscle tissue or muscularis mucosae.  It is a standard protocol for urologist to scrape deep enough to get muscle tissue to see if tumor had progressed to muscle tissue or not.

I did not experience side effects you have experienced and not  for that long period.  The lining of bladder after TURBT is supposed to heal quickly  2 weeks, and completely in 4 weeks.  

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1 year 1 month ago - 1 year 1 month ago #61617 by Alan
Replied by Alan on topic Quality of Life Questions
Good to hear about the update, All I can emphasize is get the BCG when you can. It is proven to be therapeutic. The other agents. While they are a chemo wash, they are instilled into the blader and thus not a systemic use. They also have been proven to be good.

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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1 year 1 month ago #61616 by Straphanger
Replied by Straphanger on topic Quality of Life Questions
Thanks for the quick response.  

I am extremely healthy. No heart issues, not diabetic, good blood pressure, weight is good - almost the same weight as 40+ years ago.

I've had surgery about a dozen times for orthopedic procedures (sports). I'm pretty familiar with the effect of anesthesia, both for long procedures and short ones like this.  And the TURBT was just Propofol (I believe). 

This fatigue was completely different. Not sleepy at all. Rather wide awake and too tired to walk 10 feet to the kitchen and make a sandwich. I was told it was likely adrenal fatigue.

Love my doctor. Experienced, good reputation with other doctors I consulted. I'm back in his office in 2 months for a scope and maybe a CT scan. I'll ask again about BCG or Chemo.

I was pretty freaked out until I researched BC. I'm pretty sure this can be managed as a chronic condition. I'm not worried about this killing me, but I don't like the idea of 4 weeks of down time every time I need to repeat the TURBT. It is good to hear that  BCG or chemo can minimize the need for repeat procedures.

Thanks again.

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1 year 1 month ago - 1 year 1 month ago #61610 by Alan
Replied by Alan on topic Quality of Life Questions
Straphanger,

Welcome. A lot of issues to address.

First, a 1.8 CM is considered small by most metrics with URO's. Another issue is not doing BCG or another agent on high grade tumors. Yes, BCG is in short supply in some areas. Do not give up! Other posters have done the diligence in finding other practices with a supply. You simply need to get immunotherapy for high grade. It works in the majority of cases. There are recent discussion using gemcitabine and other agents combined with heat. Mitomycin has been used. The point is, push to get with answers and help. This might even be a cause to get a second opinion. Fresh eyes to confirm what is going on or another idea can do wonders.

Now to the TURB problems. Everyone's body react differently to anesthesiology, cutting and burning. Being a smaller tumor are there other issues? Is this a new surgeon? Are you diabetic or slightly overweight? I ask these as the majority come through the TURB with discomfort that subsides quickly. Perhaps the surgeon dug too deeply? Anyway, be vigilant and ask as many questions as you can.
Do not give up! There many of still around long after similar diagnosis's. Me included. Ask away as you go.

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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