Update and question: Diagnosed 2 years... - Advanced Prostate...

Advanced Prostate Cancer

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Update and question

DaC00tie profile image
17 Replies

Diagnosed 2 years ago, prostate cancer recurrence. Metastatic to one bone and nodes. 3+4. Lupron, Zytiga, prednisone and 35 radiation treatments. My last 4 PSA (every 3 months) have been less than 0.015. Side affects are gone. Changed diet and I work out. I feel like a time bomb....just waiting.

Yesterday I began having blood in my urine. My oncologist is on maternity leave. I sent emails to my team, oncologist, RO, urologist, and GI asking to “please advise”. Waiting to hear. In the meantime, has anybody else experienced blood in urine? Or have any idea why? I don’t know if I should go to the emergency room or not.

Michael

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DaC00tie profile image
DaC00tie
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LearnAll profile image
LearnAll

With PSA of 0.015, it appears to me that blood in urine may not be because of cancer because there can not be much cancer left if your PSA is 0.015.

There are many other causes of hematuria and most common ones are (1) urinary tract infection (2) injury,

First thing I will do is to go to nearby pharmacy and get a Urine Dipstick test (costs 5-10 dollars) and test my urine. If urine comes positive for nitrites, Leucocyte esterase, blood and bacteria...then it is urinary tract infection which needs to treated with appropriate antibiotics.

DaC00tie profile image
DaC00tie in reply toLearnAll

Thank you. I finally got responses from my medical team, sort of. My oncologist is on maternity leave, my GI is “out of the office” this week, and my urologist is leaving today for the rest of the week, but he did squeeze me in yesterday. Took urine sample (dark red) to check for infection. Drew blood to check PSA level. And did CT scan with contrast to check for possible tumor on kidney. All the “assistants” that responded to emails said the same thing: if there are clots or you have trouble urinating, go to ER. Today is day 3 and there’s still blood, slightly more. And the “flakes” are noticeably larger. My radiation treatments were completed in January. Thank you for your suggestion. I’m waiting on results.

LearnAll profile image
LearnAll in reply toDaC00tie

Good..so you have started the ball rolling on this. Why they did not do a routine Urinalysis...the result comes in minutes and if as I said if leucocytes+, nitrites+, Leu esterase + and bacteria + then it confirms UTI. My suspicion is if it dark red clots coming out, most likely source can be urinary bladder. or god forbid, kidneys. If serum BUN and creatinine are in normal range, your kidneys are safe. But, glad they are working on all different possibilities. Prostate cancer causing it still seems very unlikely with PSA of 0.015.

DaC00tie profile image
DaC00tie in reply toLearnAll

Urologist just emailed me. CT scan of kidney is clear, except for two tiny kidney stones which he said is not likely the problem. The good news is, a tumor on kidney has been ruled out

LearnAll profile image
LearnAll in reply toDaC00tie

wonderful news. Lets center our attention on UTI and urinary bladder. Keep us updated.

Pleroma profile image
Pleroma

Delayed side-effect of radiation treatment - maybe??

DaC00tie profile image
DaC00tie in reply toPleroma

If it is then it’s very delayed. I finished radiation treatments a year ago.

marnieg46 profile image
marnieg46 in reply toDaC00tie

My understanding is that radiation cystitis doesn't always present immediately but can come on quite some time after radiation. I would think the best course of action would be to have it checked out properly just to be on the safe side.

DaC00tie profile image
DaC00tie in reply tomarnieg46

My thoughts exactly. Thank you

tallguy2 profile image
tallguy2

I had blood in my urine once after radiation in 2012...a few years later. To this day we don't know the cause. I had the unpleasant test (cystoscopy) with zero results. Speculation that it could have been the passing of a small kidney stone (?).

DaC00tie profile image
DaC00tie in reply totallguy2

I suppose that’s a possibility. I’ve never had a kidney stone in my life. There has been no pain of any kind so far.

AllenMarco profile image
AllenMarco

I had EBRT 10 years ago and have he’s intermittent hematuria for the last 5 years. Cystoscopy twice, biopsy, two outflow obstructions caused by blood clots and all is well. Now I keep a catheter handy if needed. Doc said radiation damage to endothelial cells are likely the cause.

DaC00tie profile image
DaC00tie in reply toAllenMarco

The medical assistant to my RO informed me that it’s not likely to be due to the radiation. But after reading responses and doing some research, I don’t have faith in her response.

Tall_Allen profile image
Tall_Allen

It sometimes happens because scar tissue breaks off and it bleeds before it heals. That's an aftereffect of the radiation, especially when there is existing scar tissue at the anastomosis. If it's a little blood and it goes away - no worries. If it's a lot of blood and it gets worse - see a doctor.

DaC00tie profile image
DaC00tie in reply toTall_Allen

This makes sense to me. I’m in layman’s terms and common sense. Today the “flakes” are noticeably larger” and from a non medical guy, they to appear as they might be scar tissue flakes. Of course that’s an uneducated guess on my part.

DaC00tie profile image
DaC00tie

I appreciate that. Will do.

j-o-h-n profile image
j-o-h-n

Not kidney stones.... pain would be intolerable... small stones (sand like) you would feel irritation and no flakes. If I were you, I'd go to hospital/emergency room. Don't mess around...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/31/2019 7:31 PM EST

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