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Begging for advice! Newly diagnosed stage 3

4 years 7 months ago #50663 by sara.anne
Oh Barbara, I am so sorry to hear about your father. And while it is good to have choices, to have four opinions that differ....that does add to the anxiety.

I am afraid that, not being a physician, it is difficult to offer specific advice. First, I would think you and your family would need to evaluate the expertise of the doctors involved in these recommendations. Are they bladder cancer EXPERTS? BTW, where is your dad located geographically? Are any of these opinions from major centers of bladder cancer treatment? I would suspect that the urologist who would not do the surgery himself is not....but it is wonderful that he knows his limitations!

Your father needs to be treated by a doctor who does MANY (25 or more) of these surgeries a year. Often, if there is any suspicion that there might be spread, chemo is given prior to bladder/prostate removal. This, of course, could be providing treatment during the wait for surgery. I am somewhat surprised at the suggestion of partial bladder removal as this is not usually considered. Are you in the US or elsewhere?

Reading over what I have written, I just hope that I haven't confused things even more.

Wishing you all the very best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 7 months ago - 4 years 7 months ago #50661 by Barbara Puhl
Good morning dear members,

My father has been diagnosed with stage III, advanced invasive bladder cancer a week ago (G3 T3), so we are still in a lot of shock and very new to all of this. I would really appreciate your help and advice regarding two main things: (1) How do you cope with the pain? (2) Any advice on how to proceed based on experience or info from your doctors?

We have received the biopsy & CT scan results last week, which indicated that cancer has spread to prostate. We have consulted several doctors since, and have received very mixed opinions regarding how to proceed, which is what worries and confuses us the most.
The first doctor told us that the bladder and prostate have to be imperatively removed (for this, there is a one month waiting list and my father is in an awful lot of pain). The doctor also said that there is absolutely no point of chemo or any other treatment.
The second doctor suggested to remove the bladder and treat the prostate (however, this doctor also said that the waiting list is over one month long).
The third doctor, suggested chemo to reduce the size of the tumor and then removing the bladder partially.
The last doctor said that he is not willing to perform the surgery to remove the bladder himself, however this should be done within the next week (one month is too long in this case).
(1) What is you opinion & experience with all of this? We are so very confused by all the mixed advice we have received from doctors that we have no idea how to proceed! Is is better to remove the bladder or to attempt treatment at this stage (considering that recurrence rates are high)? Is it normal that surgery has to be conducted extremely soon however waiting lists are min. 1 month long??

Secondly, my father is in an awful lot of pain. Especially in the evenings, around 8pm every day strong pain back pains start (Anyone have the same problem?). He hasn't been prescribed any pain medication and refuses to smoke weed (he has never in his life smoked a cigarette).
(2) Any suggestions on how to cope with the pain? Marijuana tea maybe? What works best for you?

I am so very sorry for the long message, we are just so new to all of this and devastated by the information that we don't even know where to start. I would be eternally grateful for you help and advice. thank you for everything in advance.


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