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  • #8517

    I had my RC with neo last September. Post-surgery, I was clear. No chemo, radiation required. Since then, my CT scans, blood work etc. have shown no problems. I didn’t post anything because in December I started a clinical drug trial for the immunotherapy drug, Tecentriq, and I thought that naturally I would be fine. They have recently updated the patient consent form though, and it is somewhat scarier than before in terms of who is accepted into the trial.

    Now, the implications of being high-risk are really starting to eat away at me, and I feel anxious about it a lot of the time. I realise that being high risk doesn’t mean anyone can say with any certainty whether the cancer will or will not come back. Hobbies etc don’t last 24/7, and especially not as I’m trying to fall asleep at night. Does anyone have any suggestions?

    Tom M

    Hi Saldcorn,

    Once again, the common advice, “Talk to your doctor” applies. Clinical trials for new drugs are often very confusing. In reading about Tecentrig it would appear that Roche secured FDA approval as an immunotherapy drug for use in advanced bladder cancer but is it not possible that the study also wants to look at benefits (?) in some patients who have previously had high grade BC and have had cystectomies performed?

    Your clean bill of health with regular blood work and CT scans is the ‘gold standard’.
    I’m in the same position as you – having had my RC in April of last year – and am quite content with regular scans that show no occurrence of cancer in surrounding areas. I guess my question is why your doctor wanted you to participate in the study. Was it for the information of the drug company or was it really for YOUR benefit? I would ask and, in the meanwhile, enjoy your good test results. Sleep well.

    With support,


    Tom M


    I forgot to mention that Jack Moon seems to be quite up-to-date with new treatments and advances. You might PM or call him to see if he has any knowledge of your drug and it’s clinical trials.



    Hi Tom,
    This trial has 2 groups. One (mine) receives the drug. I go every 3 weeks for an infusion. The other is simply observed, but more often, I think, than usual. Participants know which group they’re in, and assignment to the group was (supposedly) randomly done by Hoffman-LaRoche in Switzerland.

    The purpose of the trial is, “to compare the effects, good or bad, of Atezolizumab versus observation (not receiving any treatment) on you and your bladder cancer to find out which is better.” Everyone taking part has had the RC and whichever diversion they chose. The trial lasts for a year. My surgical oncologist was at Sunnybrook in Toronto, and because the final pathology was Stage 3 aggressive, I was referred to a medical oncologist at Sunnybrook for a 2nd opinion on whether or not chemo would be useful. The oncologist agreed that it wasn’t necessary . It was she who suggested I take part in the study. There was no pressure.

    My problem, I guess, was that the new consent form was clearer that the participants were high risk for recurrence. I just find myself feeling the Sword of Damocles hanging over my head.


    Hi Saldcorn:

    I second Tom’s suggestion about talking to your doctor or Jack about the clinical trial you are involved in to see if there are any changes and as to whether to continue is in your best interest or not. Getting some definitive answers will hopefully help with your anxiety.

    However, that being said, I need to ask – how were you feeling about things prior to reading that “clearer” consent form? Are you experiencing any side effects from the clinical trial med? Could the anxiety be from taking the med or do you think it is just from reading that newer form?

    I can’t say too much not ever being part of any clinical drug trials but I’d like to suggest this – Does taking this medication make you feel as if you have a greater chance in staying cancer free, acting as extra insurance, so to speak? Sometimes I think we need to consider our psychological battle as much as the physical. We do the necessary surgeries and treatments to try to get rid of the initial disease and then have to figure out what is best for us in terms of trying to stay cancer free.

    Even though my situation was far different than yours and less serious, I found that it helped to do things like exercise more, take vitamins etc. The way that helped was it gave me hope that I was increasing my defense against a possible recurrence. For me, that is what helped keep my anxiety down a good deal. I too, still deal with the “heebie jeebies” once in a while. I don’t think that it ever goes away entirely. That is why I’m suggesting considering this school of thought for the drug trial that you are involved in.

    Another suggestion…is there a cancer support group/centre near you that you could partake in? A lot of those places have classes on coping with anxiety. Wellspring here in Calgary and the Tom Baker both have classes on meditation and coping skills.

    Hang in there, Sue. ((((HUGS))))

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