Are these symtpoms/reactions normal? Gl9 Stage 4

Hi,

My father was diagnosed in October 2016, he is 60 years old. He is stage 4, gleason 9 and has several very small mets to lymph nodes, lower back and pelvic bone.

When diagnosed his prostate was so large it made urination nearly impossible. It was pretty much completely blocked off. He has had a bladder catheter since October because of this problem. He received 13 rounds of radiation over two weeks, finished in December 2016. Now more than 6 months later he is still dependent on a catheter and has several challenges and quality of life reducing symptoms which seem related to this:

- He has sudden and quite dramatic pains in the prostate/crotch area when getting up from sitting (sometimes/often). He has some less dramatic pains in the crotch area a lot of times just sitting/standing.
- Pain after getting up from sitting position is often followed by an urgent need for toilet/diarrhea
- He has pains in the crotch area and tip of penis when walking quite short distances
- If he tries to pee without the catheter (disconnects it), he will have to pee about once every hour or more
- He has had one infection in the catheter so far

Overall these problems really reduce his quality of life. From reading the forum it does not seem like many people experience similar problems 6 months after radiation(?). Most people I have read about here seem to be able to go back to their normal life almost, even if they are Gl 9 Stage 4. Is my fathers experience normal? Is it likely that he is still recovering/healing from the radiation and that his situation might improve?

For those who have similar challenges and Gl 9 stage 4 - is surgical removal of the prostate normal for his situation?? His urologist has simply said no to surgery without giving an explanation. Are there any options to improve his situation?

Thank you in advance for taking the time to read and answer,

Best regards

Treatments since diagnosis:
- He has received firmagon since diagnosis (19.10.2016)
- He has received 13 rounds of radiation, and the last radiation was 08.12.2016
- He has now finished round 8 of taxotere, with 1 more to go (started taxotere 18.01.2017).

Hello Jantvet,

Welcome to the forum. Sorry to hear about your dad's problems but glad you found us. I hope we can help.

Can you tell us a bit more about the radiation? Were they targeting his metastases?

Urologists tend to avoid surgery to remove the whole prostate for patients with systemic disease because it won't cure the cancer and it carries a potentially heavy load for side effects. There is some evidence that removing the primary tumor sometimes slows the progression of the disease but it is seldom done because the benefits are small for such a major surgery. The operation that Everton is talking about, which I think is Trans-Urethral Resection of the Prostate (TURP), is a more frequent treatment for symptoms caused by an enlarged prostate that can't be shrunk with drugs. His urologist probably hoped that the hormones would shrink his prostate enough to give him some relief. Your father has been on the hormones long enough now to say that probably isn't working and he might want to talk to his doctors about a TURP once he has the chemo behind him.

Hi

As others said, it's normal to NOT do surgery in cases like this.

However, just as a data point, my husband's urologist was perfectly willing to remove his prostate a year or so after diagnosis. (My husband said no, and in his case, radiation improved his urinary symptoms to the point of being pretty much normal within a month or so of treatment ending - which as you've said seems fairly common. So it makes sense to have tried that.)

However, at this point, if the urologist has not suggested or is not experienced with the TURP thing, maybe it's time to find another urologist. (The "no explanation" thing is not a real good sign.)

Is anyone going to the doctor with your dad? Do you think he'd accept that? My husband is basically the same age, and it's all too easy for men that age to downplay their symptoms, or the distress they are causing, while in the doctor's office. Hope he finds some relief -

-- Carolyn

Fairwind: He's been on Firmagon since diagnosis (since last October). The advice to see a MO is a good idea but he probably already has one since he is doing chemo.

cspivak said...
Hi

As others said, it's normal to NOT do surgery in cases like this.

However, just as a data point, my husband's urologist was perfectly willing to remove his prostate a year or so after diagnosis. (My husband said no, and in his case, radiation improved his urinary symptoms to the point of being pretty much normal within a month or so of treatment ending - which as you've said seems fairly common. So it makes sense to have tried that.)

However, at this point, if the urologist has not suggested or is not experienced with the TURP thing, maybe it's time to find another urologist. (The "no explanation" thing is not a real good sign.)

Is anyone going to the doctor with your dad? Do you think he'd accept that? My husband is basically the same age, and it's all too easy for men that age to downplay their symptoms, or the distress they are causing, while in the doctor's office. Hope he finds some relief -

-- Carolyn

Hi Carolyn,

Thanks for your reply!

I have been going with my dad to the "head cancer doctor", but unfortunately I have not met with the urologist. He is happy that I am joining and that others are researching things for him, as he prefers some distance to his disease and leaving it to the doctors to know the options etc. Others around him prefer looking up and researching as much as possible ourselves. He is definitely downplaying symptoms and the distress to doctors, but I think he now agrees that its very important to accurately describe those things.

Thanks again and all the best to you and yours