Hi Stacey,
So sorry for the situation you and your husband are faced with.
HT (if already started) may shrink any tumour(s) making it even more difficult for the location to be seen on a scan - any scan and that sometimes cancer cells are not sufficiently concentrated to be seen. The chances of seeing a tumour on even PSMA scan is unusual where PSA is as low as your husband's, although with some rare types of PCa can be more extensive but produce very little PSA.
The PSMA scan is arguably the best scan used in the UK at present to locate spread bearing in mind the above, although there are several drawbacks :-
1). The scan can be found not to work for about 8% of men because they do not express sufficient PSMA.
2). This Ligand has a short half life and has to be produced specifically for an individual and if it does not meet the required standard
it has to be reproduced again. Certainly when I had it there was a problem with the supplier who generated for the several
hospital doing the scan in the London area. There might be others now but I guess you would fly into Heathrow so London would
be convenient.
3). This is a nuclear scan and there are certain restrictions on coming into contact with others for a few hours afterwards.
4). At the time of my scan I had to have a referral from a Consultant rather than a GP and this was as a private patient. This may
have changed changed now.
5). Price for the scan varies somewhat between hospitals. When I last heard it was £2600 at Paul Strickland Scanner Centre where
I had mine but this could be higher or lower now.
In the circumstances, I would be inclined to follow the advise your husband's Consultant proffers about having the scan before arranging for it.
Please keep us posted.
Barry |
User
At 0.06, they surely haven't put him on HT/RT just because of his PSA. You say that they are unsure where the cancer is but the level is so low that there may not be any cancer anywhere. Perhaps ask them to clarify why they think salvage treatment is appropriate with such a low reading? Did the pathology identify a rare type of prostate cancer rather than a common adenocarcinoma? If not, I would be concerned about over treatment - you could ask about a special scan but the PSA is probably too low to be reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
This probably reflects latest thinking Lyn, the fact that PSA never went to zero AND has doubled in 6 months would definitely indicate a recurrence in the USA.
Whether this counts as overtreatment will ultimately depend on the outcomes.
Stacey you really need to ask the questions Lyn has suggested, your consultants are certainly throwing everything at your husband's cancer BUT it's your husband and you who will have to suffer the side effects.
There are examples on this site of guys who have had early intervention you should read their profiles eg Ulsterman. I would certainly think about a psma scan to try and identify where any spread actually is.
User
The radiotherapy is the same as I had in Feb/Mar this year, Stacey, although in my case it was a primary rather than a salvage treatment. Don't be too concerned about side-effects; in my case at least they were minor: primarily an increased need to pee throughout the night during the last few weeks of treatment. A nuisance rather than a problem and it had subsided within a few weeks of treatment ending. I had no problems at all with diarrhoea; the only bowel issues were passing clear mucus occasionally caused by radiation irritating the bowel lining.
Best wishes,
Chris
User
My PSA following surgery was 0.06. I also had a focal breech and was upgraded to T3a N0M0. My pre op PSA was 20. My PSA rose to 0.089 5 months after RP and it was decided to have RT. Following this my PSA dropped for 5 years but a year ago started to slightly rise.
It’s probably worthwhile having the PSA checked again prior to the RT to see if the 2nd reading was a blip. Having said that be quided by your medical team rather than us non-clinical people on here
Bri
User
Hi Stacey, sorry to read of your husband’s situation.
I had radical prostatectomy July 2015. Cancer had started to break through capsule so staging was T3, N0, M0.
In September 2016 my PSA had risen to 0.3. I started hormone therapy late December 2016 followed by radical salvage radiotherapy March/April 2027.
In my case the oncologist ordered an F18 choline PET scan and an mpMRI by which time my PSA was 0.7. I never had PSA tested to 2 decimal places so wasn’t aware it was rising initially.
Although I have coped with the salvage treatment the side effects have magnified.
Read my profile for more information.
Wishing you and your husband all best wishes.
Edited by member 28 Dec 2019 at 11:00
| Reason: spelling
|
User
Hi Stacey - sorry to see you here and so sorry this disease has hit your husband at the young age of 38. I thought I was hard done by, being diagnosed at 46.
After my prostatectomy, I was upgraded to T3b and Gleason 9. I had positive margins.
my first PSA after surgery was 0.014, then 0.019, then 0.023. All within a year of surgery. My oncologist was convinced that something suspicious was going on.
The difference between me and your husband seems to be that before my hormone therapy and salvage radiotherapy I had a scan whereas they seem to be guessing where the cancer is with your husband. I had a PSMA scan but had to pay for it myself. Luckily, it identified where the cancer was and they were better able to target the radiotherapy. I don’t know if it’s too late to have a scan if he’s already started HT. PSMA scans aren’t available in Northern Ireland. Maybe a choline pet scan is. I used to live in Belfast and have family there still and know that some of the scans aren’t available there.
I didn’t like salvage radiotherapy at all. Incontinence, urgency and soiling myself became a daily occurrence and tiredness and weight gain as a result of the hormone therapy. I had a pretty miserable time. Others sail through it with few problems. But I have no regrets. My PSA is down to <0.006 and so the SRT and the HT may well have killed off the last cancer cells. Here’s hoping anyway.
It seems to me that they’re moving very quickly with your husband, quite possibly because he’s so young. I hope the treatment goes well. Keep us all informed and we’ll all be here to support you both.
Ulsterman
User
That’s the point of “wide beam” RT, Stacey; it’s used to irradiate the whole pelvic region when they don’t know for sure where the cancer is. In my case it was because my PSA (32 at diagnosis) was abnormally high for what the biopsy actually found, so they suspected undetectable spread to the lymph nodes, hence a recommendation for RT rather than surgery. It seems to have worked: 8 months after RT my PSA is now a pretty normal 2.0 and still falling (it typically doesn’t reach the nadir - the low point - until 18 months after RT).
Best wishes,
Chris
Edited by member 27 Dec 2019 at 22:24
| Reason: Not specified
User
If it is any consolation, John was upgraded post-op from T1 to T3 with some spread to his bladder. It took 2 years for him to reluctantly agree to salvage RT and here he is nearly 8 years later with no further recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
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User
At 0.06, they surely haven't put him on HT/RT just because of his PSA. You say that they are unsure where the cancer is but the level is so low that there may not be any cancer anywhere. Perhaps ask them to clarify why they think salvage treatment is appropriate with such a low reading? Did the pathology identify a rare type of prostate cancer rather than a common adenocarcinoma? If not, I would be concerned about over treatment - you could ask about a special scan but the PSA is probably too low to be reliable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
This probably reflects latest thinking Lyn, the fact that PSA never went to zero AND has doubled in 6 months would definitely indicate a recurrence in the USA.
Whether this counts as overtreatment will ultimately depend on the outcomes.
Stacey you really need to ask the questions Lyn has suggested, your consultants are certainly throwing everything at your husband's cancer BUT it's your husband and you who will have to suffer the side effects.
There are examples on this site of guys who have had early intervention you should read their profiles eg Ulsterman. I would certainly think about a psma scan to try and identify where any spread actually is.
User
The radiotherapy is the same as I had in Feb/Mar this year, Stacey, although in my case it was a primary rather than a salvage treatment. Don't be too concerned about side-effects; in my case at least they were minor: primarily an increased need to pee throughout the night during the last few weeks of treatment. A nuisance rather than a problem and it had subsided within a few weeks of treatment ending. I had no problems at all with diarrhoea; the only bowel issues were passing clear mucus occasionally caused by radiation irritating the bowel lining.
Best wishes,
Chris
User
My PSA following surgery was 0.06. I also had a focal breech and was upgraded to T3a N0M0. My pre op PSA was 20. My PSA rose to 0.089 5 months after RP and it was decided to have RT. Following this my PSA dropped for 5 years but a year ago started to slightly rise.
It’s probably worthwhile having the PSA checked again prior to the RT to see if the 2nd reading was a blip. Having said that be quided by your medical team rather than us non-clinical people on here
Bri
User
Hi Stacey, sorry to read of your husband’s situation.
I had radical prostatectomy July 2015. Cancer had started to break through capsule so staging was T3, N0, M0.
In September 2016 my PSA had risen to 0.3. I started hormone therapy late December 2016 followed by radical salvage radiotherapy March/April 2027.
In my case the oncologist ordered an F18 choline PET scan and an mpMRI by which time my PSA was 0.7. I never had PSA tested to 2 decimal places so wasn’t aware it was rising initially.
Although I have coped with the salvage treatment the side effects have magnified.
Read my profile for more information.
Wishing you and your husband all best wishes.
Edited by member 28 Dec 2019 at 11:00
| Reason: spelling
|
User
Hi Stacey - sorry to see you here and so sorry this disease has hit your husband at the young age of 38. I thought I was hard done by, being diagnosed at 46.
After my prostatectomy, I was upgraded to T3b and Gleason 9. I had positive margins.
my first PSA after surgery was 0.014, then 0.019, then 0.023. All within a year of surgery. My oncologist was convinced that something suspicious was going on.
The difference between me and your husband seems to be that before my hormone therapy and salvage radiotherapy I had a scan whereas they seem to be guessing where the cancer is with your husband. I had a PSMA scan but had to pay for it myself. Luckily, it identified where the cancer was and they were better able to target the radiotherapy. I don’t know if it’s too late to have a scan if he’s already started HT. PSMA scans aren’t available in Northern Ireland. Maybe a choline pet scan is. I used to live in Belfast and have family there still and know that some of the scans aren’t available there.
I didn’t like salvage radiotherapy at all. Incontinence, urgency and soiling myself became a daily occurrence and tiredness and weight gain as a result of the hormone therapy. I had a pretty miserable time. Others sail through it with few problems. But I have no regrets. My PSA is down to <0.006 and so the SRT and the HT may well have killed off the last cancer cells. Here’s hoping anyway.
It seems to me that they’re moving very quickly with your husband, quite possibly because he’s so young. I hope the treatment goes well. Keep us all informed and we’ll all be here to support you both.
Ulsterman
User
Thank you for your replies and advice,we really appreciate it.
David is understandably going back and forth on the idea of having RT because they can't be sure were the cancer is. I feel like we have to go on what we've been advised because I don't know what else we can do.
The Oncologist told us about the PSMA test but told us it would be unlikely for anything to show on it because Davids PSA is still so low. He did have a choline pet scan done a few weeks ago but we haven't heard anything regarding this as yet,although the Oncologist said he was doing that as a legal formality 🙄
After reading your posts and talking to David we are going to ask the Oncologist about the PSMA scan, although it is not available in Northern Ireland we would be willing to travel and pay for the scan.
I hope you are all keeping well and had a lovely Christmas 🎄 thankfully we have 2 girls aged 8 & 4 that keep the magic of Christmas alive.
Edited by member 27 Dec 2019 at 21:05
| Reason: Not specified
User
That’s the point of “wide beam” RT, Stacey; it’s used to irradiate the whole pelvic region when they don’t know for sure where the cancer is. In my case it was because my PSA (32 at diagnosis) was abnormally high for what the biopsy actually found, so they suspected undetectable spread to the lymph nodes, hence a recommendation for RT rather than surgery. It seems to have worked: 8 months after RT my PSA is now a pretty normal 2.0 and still falling (it typically doesn’t reach the nadir - the low point - until 18 months after RT).
Best wishes,
Chris
Edited by member 27 Dec 2019 at 22:24
| Reason: Not specified
User
Hi Stacey,
So sorry for the situation you and your husband are faced with.
HT (if already started) may shrink any tumour(s) making it even more difficult for the location to be seen on a scan - any scan and that sometimes cancer cells are not sufficiently concentrated to be seen. The chances of seeing a tumour on even PSMA scan is unusual where PSA is as low as your husband's, although with some rare types of PCa can be more extensive but produce very little PSA.
The PSMA scan is arguably the best scan used in the UK at present to locate spread bearing in mind the above, although there are several drawbacks :-
1). The scan can be found not to work for about 8% of men because they do not express sufficient PSMA.
2). This Ligand has a short half life and has to be produced specifically for an individual and if it does not meet the required standard
it has to be reproduced again. Certainly when I had it there was a problem with the supplier who generated for the several
hospital doing the scan in the London area. There might be others now but I guess you would fly into Heathrow so London would
be convenient.
3). This is a nuclear scan and there are certain restrictions on coming into contact with others for a few hours afterwards.
4). At the time of my scan I had to have a referral from a Consultant rather than a GP and this was as a private patient. This may
have changed changed now.
5). Price for the scan varies somewhat between hospitals. When I last heard it was £2600 at Paul Strickland Scanner Centre where
I had mine but this could be higher or lower now.
In the circumstances, I would be inclined to follow the advise your husband's Consultant proffers about having the scan before arranging for it.
Please keep us posted.
Barry |
User
I would have thought that the point here is that you could end up paying thousands of £££s for scans that show nothing; the HT should already have started shrinking the cancer which makes the chance of being able to see it almost zero.
Biochemical recurrence is taken to be 0.2 or three successive rises over 0.1 so as I stated previously, unless there was some problem raised by the pathology post-op they wouldn’t be rushing him into salvage treatment. However, the fact that he was upgraded to T3 by pathology means that they know where they need to target the RT and at only 38 he probably needs to just grit his teeth and get on with it.
Edited by member 28 Dec 2019 at 02:00
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
If it is any consolation, John was upgraded post-op from T1 to T3 with some spread to his bladder. It took 2 years for him to reluctantly agree to salvage RT and here he is nearly 8 years later with no further recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I and two friends had prostatectomies last year by three of the best surgeons in the country.
I am the only one not to have suffered recurrence, yet my two mates now have undetectable PSA (like me) following a course of RT. They say the radiotherapy was not too uncomfortable, and we are all looking forward to the rest of our hopefully cancer-free lives.
Best of luck.
Cheers, John.
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Husband aged 38 had radical prostatectomy in June 2019, has a traceable and raising PSA.