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My PSMA scan sheds new light

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User
Posted 17 May 2018 at 00:27

Had my rescheduled 68 Gallium PSMA scan at the Paul Strickland Scanner Centre last Saturday 12th May and today, 16th May received a copy of a letter addressed to my Doctor at the Royal Marsden with the findings of a Radiologist.  This is indeed a speedy response!

Some members may remember that UCLH told me that I was lucky to be given HIFU because I had cancer in an Iliac node and nobody else would give this treatment in the circumstances.  However, my Consultant at the Marsden was not convinced that the uptake of Choline made this certain, a view that two other hospitals to whom I sent the scan agreed.  Well, the PSMA scan report states  ..."no other uptake in pelvis and specifically no abnormal uptake in iliac regions no abnormal uptake in skeleton".  Unfortunately, the report does say "Focal intense uptake in prostate gland superficial zone LT apex in keeping with active disease SUVmax 19.5"  So it rather looks to me that either cancer cells have regrown or the HIFU did not eradicate them entirely in the prostate. 

One other comment that causes me some concern is ".... there is a subcm nodule of intense uptake just anterior to tip of spleen in keeping with spenuculis" (can't find out what this is even having searched medical dictionary.)

It will be interesting to learn what the Marsden make of this after having viewed the scan and what further radical treatment they might offer.

Barry
User
Posted 17 May 2018 at 00:27

Had my rescheduled 68 Gallium PSMA scan at the Paul Strickland Scanner Centre last Saturday 12th May and today, 16th May received a copy of a letter addressed to my Doctor at the Royal Marsden with the findings of a Radiologist.  This is indeed a speedy response!

Some members may remember that UCLH told me that I was lucky to be given HIFU because I had cancer in an Iliac node and nobody else would give this treatment in the circumstances.  However, my Consultant at the Marsden was not convinced that the uptake of Choline made this certain, a view that two other hospitals to whom I sent the scan agreed.  Well, the PSMA scan report states  ..."no other uptake in pelvis and specifically no abnormal uptake in iliac regions no abnormal uptake in skeleton".  Unfortunately, the report does say "Focal intense uptake in prostate gland superficial zone LT apex in keeping with active disease SUVmax 19.5"  So it rather looks to me that either cancer cells have regrown or the HIFU did not eradicate them entirely in the prostate. 

One other comment that causes me some concern is ".... there is a subcm nodule of intense uptake just anterior to tip of spleen in keeping with spenuculis" (can't find out what this is even having searched medical dictionary.)

It will be interesting to learn what the Marsden make of this after having viewed the scan and what further radical treatment they might offer.

Barry
User
Posted 17 May 2018 at 11:44

Thank you for finding that, it must have been a typo in the report as I typed what it said. It's a bit puzzeling (to me at least) because the PSMA scan I had is specifically designed to show PCa cells so that is something I wil seek clarification on.

As regards the area of PCa shown in the Prostate, I have looked back at the template report of 2015 and the one area that was found and treated with HIFU. This was described as being at the left posterior base whereas the latest scan points to cancer in the apex so a different part of the Prostate. So it would seem the HIFU may have successfully treated the area previously identified and it is now in a new area, either missed in the template biopsy and scans or newly grown.

It occurs to me that the newly identified cancer area in the Prostate could be treated in several ways possibly, maybe by further HIFU, Cryotherapy, further radiation or even surgery, assuming one of the few surgeons who do this could be found. But I do not favour surgery now anyway because I was told it would almost certainly result in permanent incontinence.

When I was diagnosed in 2007, the surgeon said he would remove my Prostate if I wished but doubted he could get all the cancer, so advised RT instead. Sometimes I wish I had had the surgery then and in need the additional RT as it might have prevented what is likely to be a 3rd onslaught on the Prostate. Water under the bridge of course.

Edited by member 17 May 2018 at 11:47  | Reason: Not specified

Barry
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User
Posted 17 May 2018 at 07:23

Hi Barry
Seems there’s a typo in the letter , as Splenuculis comes up immediately on google. They are small modules of spleen separated from the main organ. It states they are benign and asymptotic.
A tad like my incidentaloma-something found during a CT.
They found a 2cm lump on my left adrenal gland and I had various tests to see if it was active as they can cause all sorts of probs. They insist it’s dormant and ok but I questioned if all my psa could be coming from there and they said no ???

Edited by member 17 May 2018 at 11:57  | Reason: Not specified

User
Posted 17 May 2018 at 11:44

Thank you for finding that, it must have been a typo in the report as I typed what it said. It's a bit puzzeling (to me at least) because the PSMA scan I had is specifically designed to show PCa cells so that is something I wil seek clarification on.

As regards the area of PCa shown in the Prostate, I have looked back at the template report of 2015 and the one area that was found and treated with HIFU. This was described as being at the left posterior base whereas the latest scan points to cancer in the apex so a different part of the Prostate. So it would seem the HIFU may have successfully treated the area previously identified and it is now in a new area, either missed in the template biopsy and scans or newly grown.

It occurs to me that the newly identified cancer area in the Prostate could be treated in several ways possibly, maybe by further HIFU, Cryotherapy, further radiation or even surgery, assuming one of the few surgeons who do this could be found. But I do not favour surgery now anyway because I was told it would almost certainly result in permanent incontinence.

When I was diagnosed in 2007, the surgeon said he would remove my Prostate if I wished but doubted he could get all the cancer, so advised RT instead. Sometimes I wish I had had the surgery then and in need the additional RT as it might have prevented what is likely to be a 3rd onslaught on the Prostate. Water under the bridge of course.

Edited by member 17 May 2018 at 11:47  | Reason: Not specified

Barry
User
Posted 24 May 2018 at 19:23

Had a letter from the Marsden today. It suggests that I go back to UCLH and as the PSMA scan showed no evidence of cancer outside my prostate, I discuss the situation with them to see whether there is any scope for further HIFU treatment. (I would have preferred the Marsden did this direct on my behalf as UCLH had already told me twice they would not give me any more radical treatment regardless of what a PSMA scan showed). I doubt very much UCLH will be more receptive this time but we will see. I will of course have to be more diplomatic but I feel like saying 'just get on and finish the HIFU job you half did previously'! I am annoyed that I have to liaise between hospitals and get a scan done privately in order to try to get effective treatment with the possibility of having to go private eventually. But I have to do something - it's ridiculous that an otherwise healthy man with no evidence of PCa outside the prostate but with an identified tumour with increasing PCa within it, should only be offered HT.

So in anticipation of the need, I am researching the cost of HIFU done privately and also Nanoknife IRE, although the latter would almost certainly have to be abroad.

PS. Anybody know a UK hospital other than UCLH that does HIFU (other than in trials) for NHS patients?

Edited by member 07 Oct 2023 at 12:37  | Reason: Not specified

Barry
User
Posted 25 May 2018 at 11:10

Hi Barry

At last you have finally tracked down the little b***er, well done for preserving. As they say HIFU can be repeated I can't see why they should not offer it again to finally finish the job. Keep up the pressure.

all the best

Roy

 

 
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