1. < Bladder Cancer
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Opting for no treatment

Posted by Seeking Info @knshopper, Mar 25 4:02pm

Hello, my family member has been diagnosed with bladder cancer and immunotherapy has been recommended. The family member is 88 years old and is feeling well, does not want to risk side effects of treatment. Not sure what to expect going forward? Any information is greatly appreciated.

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Colleen Young, Connect Director | @colleenyoung | Apr 23 2:29pm
In reply to @miscanthus "@colleenyoung Thank you for the information. I saved all of it. I do know about palliative..." + (show)
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@colleenyoung
Thank you for the information. I saved all of it. I do know about palliative care and hope to get a referral to a doctor practicing palliative medicine or possibly an oncology social worker.
Next week my husband will see his urologist for his post-TURBT-surgery appointment. We've already seen the pathology report and know his cancer (non-muscle invasive in situ) is still there. He's had six years of treatments and surgeries.
His doctor says he is running out of options, as the drug he planned to go with isn't available (Adstiladrin). Which leaves pallative care, or clinical trials. A radial cystectomy isn't a possiblity since John has demensia. Right now he is in the milder stage and still has independence. But he does not have the capicity to handle the changes bladder removal would bring.
So, right now our plan is to ask the urology how long John could expect to live, if he does nothing, going forward, to treat his cancer.

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Just to clarify for everyone reading this thread, one can ask for a referral to palliative care at any point in the cancer journey to help manage symptoms, not only at the end.

@miscanthus, I'm glad you're seeking a referral to palliative care and/or oncology social work. It is hard to hear that treatment options are running out. His urologist should be able to draw the picture of what progression might look like should no more treatment be administered. The oncologist was very frank with us when my father was near the end. We had him for 13 months instead of the predicted 6 months, but the progression was almost text book and we were well prepared (as much as one can be).

I send you a virtual shoulder to lean on when needed.

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Seeking Info | @knshopper | Apr 23 4:06pm

@colleenyoung In your last post you mentioned that "progression was almost textbook", if you don't mind and are able, would you elaborate please? If it is too much I understand. Thank you.

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Colleen Young, Connect Director | @colleenyoung | Apr 26 9:12pm
In reply to @knshopper "@colleenyoung In your last post you mentioned that "progression was almost textbook", if you don't mind..." + (show)
Profile picture for Seeking Info @knshopper

@colleenyoung In your last post you mentioned that "progression was almost textbook", if you don't mind and are able, would you elaborate please? If it is too much I understand. Thank you.

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@knshopper , that might not have been the best choice of words. What I meant was that my dad's oncologist told us what to expect as his cancer progressed and it was as he predicted. We also found this article helpful to be prepared for the final days:
- Final weeks and days: What to expect https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/Final+weeks+and+days_+What+to+expect.aspx

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hummelb99 | @hummelb99 | May 2 10:43am
In reply to @miscanthus "@colleenyoung Thank you for the information. I saved all of it. I do know about palliative..." + (show)
Profile picture for miscanthus @miscanthus

@colleenyoung
Thank you for the information. I saved all of it. I do know about palliative care and hope to get a referral to a doctor practicing palliative medicine or possibly an oncology social worker.
Next week my husband will see his urologist for his post-TURBT-surgery appointment. We've already seen the pathology report and know his cancer (non-muscle invasive in situ) is still there. He's had six years of treatments and surgeries.
His doctor says he is running out of options, as the drug he planned to go with isn't available (Adstiladrin). Which leaves pallative care, or clinical trials. A radial cystectomy isn't a possiblity since John has demensia. Right now he is in the milder stage and still has independence. But he does not have the capicity to handle the changes bladder removal would bring.
So, right now our plan is to ask the urology how long John could expect to live, if he does nothing, going forward, to treat his cancer.

Jump to this post

@miscanthus
I am so thankful to read all of these comments, so many questions I have had, already have been answered.
I just started my first treatment and only due to staff shortage I have to wait an extra week, but am very scared since I have only had one major surgery- knee replacement - and am now 82. BCG was not recommended after Vesta report came back.
My next chemo treatment is Tuesday.
I will continue reading all your the heartwarming comments from you all.
Thank you so very much.

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Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @hummelb99 "@miscanthus I am so thankful to read all of these comments, so many questions I have..." + (show)
Profile picture for hummelb99 @hummelb99

@miscanthus
I am so thankful to read all of these comments, so many questions I have had, already have been answered.
I just started my first treatment and only due to staff shortage I have to wait an extra week, but am very scared since I have only had one major surgery- knee replacement - and am now 82. BCG was not recommended after Vesta report came back.
My next chemo treatment is Tuesday.
I will continue reading all your the heartwarming comments from you all.
Thank you so very much.

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@hummelb99, how did your chemo session go? How are you doing? Will you have surgery after chemo?

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hummelb99 | @hummelb99 | 3 days ago
In reply to @colleenyoung "@hummelb99, how did your chemo session go? How are you doing? Will you have surgery after..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@hummelb99, how did your chemo session go? How are you doing? Will you have surgery after chemo?

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@colleenyoung
I have 3 more weeks of chemo, then Cat Scan and cystoscope, to see if chemo worked.
Won’t get an answer till July.
So far I have had very little side effects, mainly very tired and a little nauseous at times,
Thank you for checking in with me.

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hummelb99 | @hummelb99 | 2 days ago
In reply to @hummelb99 "@colleenyoung I have 3 more weeks of chemo, then Cat Scan and cystoscope, to see if..." + (show)
Profile picture for hummelb99 @hummelb99

@colleenyoung
I have 3 more weeks of chemo, then Cat Scan and cystoscope, to see if chemo worked.
Won’t get an answer till July.
So far I have had very little side effects, mainly very tired and a little nauseous at times,
Thank you for checking in with me.

Jump to this post

@hummelb99
Thank you for all the hugs and good wishes and the very same to all of you going through bladder cancer treatments.

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