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Homepage – Forum Forums Muscle Invasive Bladder Cancer Squamous Cell Carcinoma in Bladder

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    My 28 year old son just recently was diagnosed with Squamous Cell Carcinoma muscle invasive  bladder cancer.  Left the oncology doctor today with little hope.  This type is non responsive to Chemo. Waiting to hear what Sunnybrook in Toronto can suggest other then radiation. He had his bladder removed a few months ago.  I can’t find a lot of people with this type of cancer.  Looking for others who have this type.  His lymph nodes were also positive.  Going for follow up CTscan next week and bone scan.


    HI muskokagirl,

    I had replied to your post in your other post.   Just in case, you had not accessed the reply. I reposted my previous reply as below.

    I am sorry to learn that your son  was diagnosed at such young age with Squamous cell carcinoma in his bladder.  As you mentioned, I also read that 90% of bladder cancers are urothelial carcinoma and the other 10% include other variants such as squamous cell carcinoma, micro papillary carcinoma.  It seems that most researches on treatment and drug development have been focused on urothelial carcinoma of bladder.  When FDA or Health Canada approves new treatment or drug drugs, they explicitly specify which organ the treatment is for, for which stage and what type of cancer it is for.  For example, several promising new drugs have been approved for bladder cancer, such as immune check point inhibitors like Keytruda (Pembrolizmab), Tecentriq as immunotherapy, BALVERSA (erdafitnib) as target medicine for bladder cancer with FGFR gene mutations, PADCEV as target medicine for bladder cancer with Nectin-4 expression.  When we look at the approval description, it says like “FDA grants accelerated approval for erdafitnib (BALVERSA) for metastatic urothelial carcinoma” or Health Canada has approved BAVENCIO® (avelumab) for the maintenance treatment of patients with unresectable locally advanced or metastatic UC ( Urothelial Carcinoma) whose disease has not progressed following first-line platinum-based chemotherapy.   It is not clear to me how those newly approved treatment can be accessed to those bladder cancer patients with non urothelial carcinoma, including squamous cell carcinoma.

    Platinum based chemotherapy such as cisplatin is known to be effective for advanced urothelial carcinoma as the first line treatment and also is used as neoadjuvant (prior to radical cystectomy) chemotherapy (NAC) with improved overall survivability.  But, I see the guidelines recommend radical cystectomy without NAC perhaps because Squamous cell carcinoma is considered resistant to chemotherapy.  So, I am curious what the oncologist will recommend as the first line treatment after radical cystectomy.  I see that the oncologist seemed to indicate less effectiveness of chemotherapy.    I have noticed that immune check point inhibitors (immunotherapy)  have been approved for squamous cell carcinoma for other organs like skin and neck.  So, I see a few studies of immunotherapy application  for squamous cell carcinoma of bladder. One study in Germany stated that immunotherapy on squamous cell carcinoma of bladder  had shown similar efficacy as  immunotherapy on urothelial carcinoma of bladder.  This is good.  I hope the immunotherapy can be option if chemotherapy is determined not effective.  Also I hope more treatment studies are done for non urothelial carcinoma including squamous cell carcinoma of bladder.

    Just in case, other bladder cancer patients with squamous carcinoma will not respond to your post, I have seen related posts in BCAN forum.  BCAN is mainly for the bladder cancer patients in the US.

    Thank you very much for your post as it has helped increase awareness of squamous cell bladder cancer.   I wish you and your son all the best for good outcome.



    I don’t think I can answer you exactly on point, but I, too, have not one, but two very rare, very deadly variants of bladder cancer (as this was explained to me).  One is bladder cancer “with micropapillary features” and the other is small cell bladder cancer.  This was discovered in the pathology report done after my RC, not before.

    I was subsequently put through two very, very difficult chemo programs, one of them was 5.5 hours a day, five days in a row, every six weeks.  And, offset by three weeks, and also happening every three weeks, I had another similarly difficult program that had to be administered to me as an inpatient.


    Of the four drugs, I only recall cisplatin, but I would recognize the others if I saw or heard them.  I can look them up if it is important at all.


    I actually had to call a halt to the second program one day early.  I just couldn’t take it any more; it was too difficult.


    Now, although I don’t quite fit into any of the usual paradigms that call for immunotherapy, my oncologist considers me to be a high-risk patient, so he has me on immunotherapy  (Keytruda).  We are 5 infusions into a 17-infusion program (one-year).  But next time I go in, we’re doing a CT-Scan and a PET-Scan, and we’ll see whether the cancer is successfully being held at bay.  If not, they tell me there are a couple of other drugs they can switch me to.


    But I have been feeling like the side has really let me down, when it comes to research and development of effective treatments for these very dangerous cancers.  I had been floating along from TURBT to TURBT, thinking that, like my grandfather, perhaps I would end up undergoing 12 or more of those procedures.  I was very frightened to undergo the surgery to remove my bladder, but my urologist promised me a neobladder, so I gradually accepted the idea.


    My first disappointment came in the recovery room, where I was told that because the cancer had entered my urethra, I wasn’t going to be able to have a neobladder.  And worse yet, I no longer have a urethra!  Then came the awful pathology report, two weeks later.


    Then, I at first was only told about one of the chemo programs I was going to be undergoing.  I was only told about the second program in a subsequent phone call from my oncologist that made the second chemo plan seem very much like an afterthought.


    But what was truly terrible about the experience was what I was told about it going in.  I was told that both of these cancers had only about a 20 to 30 percent chance of responding to the chemo, and that even if it did respond to the chemo, my life expectancy would only be improved slightly, so instead of having a life expectancy of one or two years, I might last as many as four or five years.


    So, the way it appeared to me was: I needed to hit two bullseyes, where the odds of hitting either bullseye were only 20-to-30 percent in my favor, and if I did hit both bullseyes, then I get to live an extra year or two, but if I miss either one, I’ll be dead inside of two years.  As of this moment, it appears that I might have hit the bullseyes.  There was no cancer when we looked, after all the chemo was completed.  That was in late July. The last conversation I had with an oncologist about my case, he said that I still don’t look very likely to be here five years from now, but I might have stretched my life expectancy from two to closer to five.

    But overall, I’m very disappointed by how paltry are the choices offered to people like me who have these rare variants of BC. There ought to be more choices than just a couple of programs that have only a twenty percent chance of working. I sure wish there were.

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