Just diagnosed Dec 23 2022

1 year 2 days ago #61755 by BeinBangkok
Replied by BeinBangkok on topic Just diagnosed Dec 23 2022
Yes Im not sure whay he didnt offer the neo bladder . I know my doctor has been doing this surgery for quite some time . I talked to a person he did in 2009 . 70 year old guy now living well at 84 . 
Really I am better with the bag I dont want to catheter myself and have to sleep in depends . I m 67 and very active and I m pretty sure everything I like doing I can do with the bag on my side . Im not sure about the bag situation here I know you can get colapalst amd some others . Im sure there will be some instructions on that and I do plan on asking my doctor as well my next visit next week,,,,
I ll look at that site as well 
Thanks 
Bill

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1 year 3 days ago #61754 by joea73
Replied by joea73 on topic Just diagnosed Dec 23 2022
Hi Bill,

If your urologist did not mention about neobladder, it is likely either the urologist was not trained for neobladder surgery or the urologist is more comfortable in IC surgery.  In terms of open surgery vs robotic-assisted radical cystectomy, various studies showed  similar outcomes with regard to time to recurrence, rates of major complications, quality of life.  

The decision of which urinary diversion to choose is challenging for many patients and  sometimes is made 30 minutes before the surgery.  I have known patients who chose neobladder and IC.    I know a patients with IC does kiteboarding. There will be some glitches here and there but I have noticed that they have regained pretty much the same life style they used to enjoy.  

In terms of long term cost,  IC requires urostomy bags which need to replaced every so often and require additional devices.  Coloplast and Hollister are suppliers for high end urostomy bags and related devices.  It sounds like urostomy bags and related devices used in Thailand are imported.  I found an article on Thai manufactured  ostomy bags as show below.  I would suggest to contact local supplier of urostomy bags and devices while waiting for the surgery and find out what you will be needing.  

sustainability.pttgcgroup.com/en/newsroom/featured-stories/831/innovating-a-thai-made-colostomy-bag

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1 year 1 week ago #61745 by BeinBangkok
Replied by BeinBangkok on topic Just diagnosed Dec 23 2022
Yes from what I can tell my treatment is right in line with whats recommended. I just have to go with the flow . The surgery scares me but many have gone before me and had no issues . I ve chosen the bag rather than the neo bladder .  It wasnt offered but I didnt want it anyway . For the surgery I will ask for robotic from what I ve read my doctor does it . I will see him in two weeks and ask more questions .
Thailands a great country to retire in .  I had always taken care of my health this just snuck up on me and really has been a hard hit mentally . Physically I am fine ..... 
 Thanks 
Bill

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1 year 1 week ago - 1 year 1 week ago #61744 by joea73
Replied by joea73 on topic Just diagnosed Dec 23 2022
I also have been to Thailand a couple times.  I was surprised to see many elephants.  I love elephants and being in temples.  I wish I could go back there, but my wife says" NO".    I am not sure how different in the treatment of bladder cancer in Thailand and in NA, but literatures published by Thai indicates the treatment are similar.


academic.oup.com/jjco/article/45/11/1007/2384918

Cisplatin based chemotherapy such as Gemcitabine + Cisplatin or MVAC ( 4 different chemo drug including Cisplatin) are standard chemotherapy used before radical cystectomy (RC).  The chemotherapy is systemic so it goes all over the body and supposed kill invisible bladder cancer cells which may have escaped from bladder. Various studies show about 10% improvement on over all survival rate with neoadjuvant chemotherapy compared with those who did not received the chemotherapy before RC.  So, you completed 75% of neoadjuvant chemotherapy, which is great.

The next step is that you need to make a choice of urinary diversion -neobladder or ilia conduit or simply put it bag or no bag.
Since you are 67,  and if you do not any physical problems, you will be a good candidate for neobladder.  When I searched in the internet, I have found an article by a Thai hospital that they have been doing neobladder urinary diversion using robot assisted since 2005.  Ileal neobladder, Studer neobladder and Hautmann ileal neobladder procedures are all popular in Thailand .   RC should be done by a well experienced surgeon for the urinary diversion of your choice in a large hospital.   Also, choose the surgeon who has done nerve sparing successfully.   About 50% of patients who goes through RC will experience erectile dysfunction (impotence).

After RC,  difference can exists  in treatment in US and Thailand.     Up to recently, after RC, patients are put on surveillance by regular CT scan to detect metastasis as early as possible.   

In some cases, bladder cancer recurs even RC. Once metastasis was detected,  the first line treatment is chemotherapy.  Up to here, treatment in the US and in Thailand should be the same. 

 Majority of patients with RC will not experience recurrence but some patient experience metastasis.   This is where treatment in Thailand and the US can be different, mostly because of high cost of new treatments.  When the chemotherapy did not work, in the US, patient is treated with immunotherapy. as 2nd line treatment.  When immunotherapy did no work, PADCEV chemotherapy  targeted to bladder cancer cells as 3rd line treatment, then if PADCEV does not work, another bladder cancer targeted treatment  Trodelvy can be offered as 4th line treatment.   

In recent years, immunotherapy (Nivolumab) has been approved as maintenance after RC for RC patients with high risk of recurrence.   Also, another immunotherapy (Avelumab) was approved as adjuvant treatment after chemotherapy.  Those treatment improved recurrence free survival and over all survival rate.    Cancer drugs including immunotherapy drugs are quite expensive, each costs about $100K per year list price.    I do not think  many patients cannot afford those treatment even in the US unless Medicare covers it and the US government's policy to enable to afford those expensive treatment. 

I am pretty sure that drug companies have different pricing models for countries like Thailand.    Also, the insurance scheme may be different in Thailand,   Anyway,  I hope you will not experience metastasis after RC as many others did not.

best

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1 year 1 week ago #61742 by BeinBangkok
Just diagnosed Dec 23 2022 was created by BeinBangkok
So much anxiety. I ve been through  3 rounds of chemo after the next round they will send me back to the urologist to set up my RC . Im 67 retired and living in Thailand so my treatment is here . I have read as much as I can and I know they are following what is called the Golden Standard of treatment for invasive bladder cancer. Not sure  what lies ahead !!

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