New Cancer Patient

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Hello. Everyone. Other than the tumor recently diagnosed and removed, I am in good health and 60 years of age. I am scheduled for multiple weeks of immunotherapy starting in three weeks for the high grade cancer identified in the removed tumor. I also have experienced some pain and discomfort in the penis since the TURBT 5 weeks ago. Typically, it would consist of periodic throbbing near the glans and often in the evening. I thought it was due to the procedure itself and catheters afterward which likely stretched the urethra but I also thought that this would only last a couple of weeks after the procedure. I have found very little information on this topic either on-line or from the medical community. I should be very optimistic about the success of the immunotherapy, right?  (I worry a lot about this which isn’t characteristic of me but I have never been a cancer patient before or experienced such an invasive treatment). I appreciate the wisdom of the rest of you.

  • Hello  and welcome to this friendly and supportive group. You are right that the rigid cystoscope can be a bit brutal and chafe the lining of the urethra causing some discomfort. There is always the possibility of infection following these procedures, so it may be an idea to drop a sample at your local surgery to rule that out. In the meantime, keep drinking plenty of water to help stop bacteria building up. By immunotherapy, do you mean BCG in to the bladder. If so, many here have had this and will be able to offer some advice. As regards the invasive procedures, we tend to get used to it and leave dignity at the door. I always tried to use a bit of humour talking about what we go through. Lots of experience here so feel free to ask anything. Best wishes. 

    Best wishes to All,   rily.

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  • I do mean BCG. Thanks.

  • I have had two TURBT's so far, and yes, discomfort in the glans area does on for weeks, but it does improve and go away eventually. I find regular paracetamol and loose fitting clothing help... and keep drinking water to make sure everything is flushed out. I am 63 so not much older.

    With BCG, the main immunotherapy for non muscle invasive bladder cancer, uses a small catheter. I have had 5 of my induction course of 6 so far, with the last one in this course next week. Its a relatively quick procedure taking ~ 15 mins in total. Only side effects I have had so far is a mild fever for up to 2 days with 1-4,  3 days and a bit more flu like with the 5th . Other than that, no issues so far. Ready for No. 6 then rest. Next is cystoscopy 8-12 weeks after the last instillation. Good luck with your treatment.

  • Thanks. I start the BCG October 16 for six weeks, then cystoscopy, and three more weeks of maintenance. I am no longer as squeamish about the catheters but am “encouraged” that a smaller catheter will be used for the BCG and what I hope will be only mild side effects. I know both of you know (probably almost everyone in this forum) that the whole experience from initial blood in the urine, to complete blockage followed by catheterization (my first experience) including bladder irrigation (I.e. bigger catheter), TURBT, pathology diagnosis, and treatment, over only a few months came as a series of shocks to me. I feel generally well albeit with some fear and anxiety mostly about what is coming and still somewhat pummelled although this is getting better. I very much appreciate connecting with the rest of you. 

  • Hi CDN,Welcome to this friendly group.I hope you will find it helpful and supportive.Best wishes for your BCG.Jane

  • Hi Riley, 

    I have to agree with your comment about humour, my husband and I have both had cancer, and we currently share the same lovely CNS nurse, we have built such a lovely rapport with her now we even joke about sharing the bed for our cytoscopies and her getting two for the price of one!!

  • Hi. 
    Yep be very optimistic about immunotherapy. My nurses who have administered my six induction doses and two maintenance courses stated that they enjoy doing it because “It works!!” And having just had a flexi they are right. No sign of a returning tumour. So good luck. 

  • Thanks for the boost, guys. It is still very new to me and I want to be very optimistic about the treatments as my close friends constantly advise. It can be difficult after a few shocks and disappointments. 

  • Had second BCG treatment today. Everything went well and the side effects have been minimal (some fatigue). I think I have been very fortunate so far with the medical care and treatments. We are always criticizing our medical systems here in Canada but my care has been excellent. Even the longer term effects I described in the first message of this post are subsiding more (I think).