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User
Posted 27 Sep 2019 at 12:20

Hi all. First post. Bear with me, I'll try and be brief.


Diagnosed at 46. Also resulting CKD. Active surveillance then focal HIFU 2018. (because of advancement ). MRI and PSA then stabilised by Feb 2019. Since April have blood in semen every time. Blood tests show slightly high wbc and low rbc (hgb normal). Am awaiting urgent urology referral.


I have just moved from the Midlands to Wales and have changed GP. I have also been under consultant at UCL but now referred to welsh health board. My worry is that they will look at current snapshot rather than the historical picture: My wbc have been on the rise over time. My rbc have been dropping over time.


Should I be concerned?

User
Posted 27 Sep 2019 at 18:32

Blood in semen is not a common symptom of prostate cancer, but given your history, it certainly is something to be checked out. High WBC might suggest an infection, and a prostate infection or UTI could generate blood in semen. Prostates don't have much in the way of pain receptors, so such infections can be painless, unless they get bad enough for whole pelvis to become painful.

User
Posted 28 Sep 2019 at 01:29
There is very little known about the late side effects of HIFU because it hasn’t been a primary treatment for long enough yet, but I wonder whether there is just some damage to a blood vessel? Burning an area of tissue could perhaps cause a weakness to the blood vessel walls? If your PSA is low and stable, it is unlikely to be advancing cancer.

Is it definitely blood and not faeces? Do you experience retrograde ejaculation?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Sep 2019 at 08:32

Thanks Andy and Lyn.


No blood for 12 months after HIFU, only last 6 months.


Not faeces and no obvious signs of RE.


PSA is low and stable. :) 

User
Posted 28 Sep 2019 at 09:23

Damage from burning with radiation emerges over time, I guess that damage from burning with ultrasound waves can also emerge over time. A hole developing in the bowel or urethra wall is a know risk, fingers crossed it is just something like that.


 


If it has been happening for 6 months, it doesn't sound like they are treating it as an urgent urology referral though. Plus I am not sure how useful it will be seeing urology at a hospital that doesn't do HIFU - it is such a specialist thing, I think I would have asked (or paid) for a referral back to the original onco. You were either given the treatment privately or as part of a trial; either way, I think they need to see what is going on.

Edited by member 28 Sep 2019 at 09:28  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Sep 2019 at 09:47

Mitan 


Are you getting blood or clots in your urine ? Blood tends to settle at the bottom of urine, you could try urinating into a clear bottle and let it stand.


Thanks Chris

User
Posted 29 Sep 2019 at 08:08

Lyn, it's urgent because I've only now told them (at my 6 month review). Good point about the referral; I will ask to be rereferred to UCL where i was in a clinical trial.


Colwickchris, no clots in urine. Just sent sample off. No obv signs of blood in urine. It is dark but may be lack of hydration (fed up of needing toilet up to 5 times after every drink) 

User
Posted 29 Sep 2019 at 08:19

If your HiFU was part of a trial, you probably were given direct contact details of the trial team for this sort of thing, as they need to know for their research, as well as to follow up.

User
Posted 29 Sep 2019 at 09:47

Mitan


I have CKD3. Dark urine it not normally a good thing , despite warnings about caffeine I find two or three cups of black coffee a day keeps my urine a straw colour. As a catheter wearer, dipping the urine always shows blood present even though it is not visible.


Hope you find an answer.


Thanks Chris


 

User
Posted 29 Sep 2019 at 10:23

Originally Posted by: Online Community Member


Damage from burning with radiation emerges over time, I guess that damage from burning with ultrasound waves can also emerge over time.



Aren't the late-onset side-effects from RT due to genetic damage caused to the cells by radiation, though, Lyn? HIFU shouldn't cause any genetic damage, so would one expect such side-effects?


Best wishes,


Chris


 

User
Posted 29 Sep 2019 at 12:54

I think a key difference is that RT is not intending to leave the organ necrotic - the non-cancerous cells which includes blood supply, urethra, nerves and non-cancerous prostate cells should mostly survive, and allows your body to continue maintaining the organ, fighting infection, clearing away dead cells, etc.

I know much less about HiFU, but I think it is intended to leave the area necrotic. This means the body cannot maintain it anymore. That may leave it more susceptible to infection afterwards, and there are infection routes via UTIs. This was part of my reason to suggest this possibility earlier (and also the raised WBC count). This is just guessing though, due to my lack of knowledge of HiFU.

Edited by member 29 Sep 2019 at 12:55  | Reason: Not specified

User
Posted 29 Sep 2019 at 14:42
Hence holes sometimes developing between the bowel and urethra later
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Oct 2019 at 10:39

Urine test back. Urine clear  


Urgent referral 1st November :)

 
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