urination pain

12 years 7 months ago - 12 years 7 months ago #38856 by mmc
Replied by mmc on topic urination pain
Gabriel,

Sorry to say this but it is time your father gets off the Canary Islands and gets to a bladder cancer specialist somewhere.

I went back and looked at your previous posts and I am pretty surprised by the treatment plan so far.

Multiple T1G3 tumors and then to have multiple recurrences is a very strong indicator that the doctor should be talking about a radical cystectomy (RC). The first recurrence, no matter how small, should have been another TURBT given that we are talking about high grade. Ta or not Ta isn't the point. You could almost assume that any recurrence would likely be high grade but the TURBT could have at least confirmed that. And with that confirmation (or even that assumption) the doctor at that point should probably at least have initiated another round of BCG.

Now, it is back yet again. Even one recurrence of high grade bladder cancer should trigger the discussion about RC. Multiple recurrences of high grade should trigger the doctor to be STRONGLY recommending an RC.

This isn't MY opinion, it is opinion of bladder cancer specialists. Here is a link to where I posted the NCCN Guidelines for the treatment of bladder cancer. bladdercancersupport.org/su/forum/3-newly-diagnosed-/33885-nccn-clinical-practice-guidelines-in-oncology-blc#33886 These guidelines are established based on the best outcomes, supported by empirical data and agreement of a group of bladder cancer specialists.

Here is where I tried to make a somewhat more simplified version (before I knew about those guidelines): bladdercancersupport.org/images/Bladder%20Cancer%20Treatment%20Guide%20v4.pdf

While his doctor likely won't care about my flowchart, the NCCN guidelines should carry some weight. I'd suggest printing out the relevant pages (T1G3 with multiple recurrences), taking that to his doctor and saying "What the heck?!?!".

Then I would suggest finding a top bladder cancer specialist doctor in mainland Spain (if Spain is his only option) or elsewhere if that is a possibility.

I am not saying his current doctor isn't a nice guy and all but bladder cancer is not to be messed with and the guidelines exist for a reason and the best outcomes happen to patients who get to the best doctors (specialists in bladder cancer). For an RC, he should have the best surgeon and it should be someone who does 50 or more of the surgeries a year.

Even if he was not in the Canary Islands, I would be suggesting you consider the same thing. Please review the information from the links I posted and then go over all of that with your dad. He needs to be able to make a truly informed decision on this. He's way too young to do otherwise and this is really important.

I'm not a doctor and the advice above isn't medical advice. The advice above is meant to encourage you to get him somewhere that bladder cancer is a specialty so that THEY can give the medical advise.

Mike

PS: I am doing great. Thanks for asking. :)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

12 years 7 months ago #38855 by gabriel21
Replied by gabriel21 on topic urination pain
Hi Mike! Oh yes, originally they found tumours all over the bladder and the prostatic urethra. The biopsis was T1 G3. We are now awaiting a biopsis from the last TURB.

How have you been doing?

My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (...)

Please Log in or Create an account to join the conversation.

12 years 7 months ago #38854 by mmc
Replied by mmc on topic urination pain
Well NOW it makes sense. :) Thanks for the additional information.

Your signature file says: "TURB: T1 G3 widespread bladder+prostatic urethra"

Can you expand on that a bit? It may be a translation issue. Did they find multiple tumors. Not sure what you mean by widespread and + prostatic urethra.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

12 years 7 months ago #38853 by gabriel21
Replied by gabriel21 on topic urination pain
Haha! so you want to know the story...

I bought these lavender cushions which you can put in the microwave for 2-3 minutes with a glass of water and they remain warm for over 5 hours. So my father, sick of being in pain, started to try all sorts of things and got a hold of one of the lavender cushions. :) He was amazed to find it relieved him!

So, nobody on the forum has done anything of the sort before?

Thanks Alan for the link!

My father is a male, 65, nonsmoker. Hematuria 01/08 TURB: T1 G3 widespread bladder+prostatic urethra; 3-month BCG.
Clean until 02/11: small TURB with no biopsy; 06/11 tumour detected TURB 08/11: awaiting biopsy, prostatic adenoma removed. Biopsies show both were benign. (...)

Please Log in or Create an account to join the conversation.

12 years 7 months ago #38852 by mmc
Replied by mmc on topic urination pain
Gabriel,

OK.... I just have to ask. How did he find that out by accident?

I've never quite found myself all of sudden having a warm bag on my genital area but maybe I'm just not hanging around the right places. :)

:woohoo:

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

12 years 7 months ago #38850 by Alan
Replied by Alan on topic urination pain
Reading your post about translations made me look up a source I have used s few times. babelfish.yahoo.com/translate_txt

Hope this helps!

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.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne