I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Salvage Treatment

User
Posted 17 Oct 2021 at 18:53

I was diagnosed with localised intermediate PC nearly 7 years ago and opted for brachytherapy. All good until about 18 months ago when my PSA started to rise again (currently 4.5).

MRI and PSMA PET look as if the cancer is now in one of the seminal vesicles and also some in the prostate. I've just had template transperineal biopsies taken and am waiting for the results.

Just wondering what salvage treatment others on this site who have been in a similar situation opted for and what the outcome was?

Thanks

User
Posted 17 Oct 2021 at 20:17

If you can afford to pay, you may be able to get HIFU or other focal treatment. The brachytherapy has most likely fulfilled the maximum lifetime dose to your pelvis so further RT to the prostate and seminal vesicles may not be possible. If not HIFU or similar, it will be lifelong HT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Oct 2021 at 01:57
You may be able to get Focal Treatment for free if you participate in a trial which is what I did. I was under the aegis of the Royal Marsden at the time and they referred me to UCLH who are regarded as the UK leaders in Focal therapy. I see the 'Forecas't trial I took part in is no recruiting but you sometimes have to push to get some treatments outside surgery, RT or systemic treatment on the NHS. However, if you are a suitable candidate for Focal Therapy there are centres where you can have it administered privately. Worth investigating.
Barry
User
Posted 18 Oct 2021 at 22:30

It reduced the size of my tumour and lowered my PSA. Six years later I am awaiting to have the treatment again as the tumour was not completely eradicated. (The procedure has been delayed due to a perceived problem noted at my pre op assessment which turned out to be a false alert). It sometimes happens that the procedure needs to be repeated. However on the flip I can say I haven't had any long term side effects so no qualms about having the procedure again. If the treatment is not successful, not only can it be repeated but it can sometimes be followed by a more radical treatment.

This is a thread I posted about it if you want a detailed experience . https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

NB.  In the above link I mentioned that UCLH told me that I had cancer in an iliac node as it had shown up in a Choline Pet scan.  However, I sent the scan to 3 other hospitals and the opinion was that the iliac node was not affected.  I paid for a PSMA scan as UCLH denied me having this on the NHS even though they had the facility for offering it.  This confirmed that the aforementioned node was not affected, there was just seen to be a tumour the size of a grain of rice within my Prostate.  This was of great significance because if the node had been affected it would have ruled out further HIFU and I would have to rely on systemic treatment.

The result of further HIFU is in the balance because I originally had more RT in Germany than you have in the UK, and with the addition of HIFU, a lot of scar tissue for the Ultrasound to go through as well as some calcification.  Anyway, nothing ventured as the saying goes .................... 

 

 

Edited by member 18 Oct 2021 at 23:13  | Reason: Not specified

Barry
User
Posted 19 Oct 2021 at 17:05

Yes I asked for a copy of each scan and made copies to send to my original RT treating hospital inGermany, The Royal Marsden and Birmingham Queen Elizabeth, the last being where I sought a second opinion of a particular Profesor back in 2007. I subsequently found out that through an internal system some hospitals, in the UK, can obtain scans direct from another hospital, they termed it 'calling over' Some hospitals make a nominal charge or charge if you don't request the scan within a certain time after the scan was done. Others don't charge at all and just post it to you. Interestingly in Heidelberg they compared the scan I sent them with those they had kept of those they did all those years ago and largely based their opinion on the size and shape of the iliac node still being the same.

Incidentally, Heidelberg University Hospital is one of those using a new type of HIFU called Tulsa-Pro as in this link but I think it is too early to make definitive comparisons with conventional HIFU, although it looks interesting but I am not aware whether it is past the trial stage yet. http://www.profoundmedical.com/wp-content/uploads/2015/05/Phase1ResultsPresentationFUS_London2015_pdf.pdf

 

Edited by member 19 Oct 2021 at 17:10  | Reason: to highlight link

Barry
User
Posted 27 Oct 2021 at 22:42

No! I started on HT at The Roya Marsden in 2007 and then used the time prior to radical treatment to do intensive research following which I applied to participate in a trial in Heidelberg which comprised 30 fractions of IMRT each of 2 gray plus 6 fractions of Carbon Ion boost each of 3 Gray in 2008. The latter is Hadron Therapy like Proton but packs much greater punch. (The Marsden had offered IMRT but using the latest linacs). For the 3 years of trial follow-up nothing untoward was seen on scans but PSA very slowly began to climb and later Scans in the UK subsequently found that there was a new or regrown tumour in one core of a transperineal biopsy. This was treated with HIFU in 2015 but it would seem a very small ampount of cancer was left and hopefully this will now be dealt with in a second HIFU attempt!

I was not offered either form of Brachytherapy back in 2007/8 even in conjunction with External Beam and had I have been I would have been torn between it and what I had but would still have gone my chosen route I think.

Edited by member 28 Oct 2021 at 14:56  | Reason: spelling

Barry
User
Posted 13 Nov 2021 at 18:57
Not what you wanted but hobsons choice then. RT may or may not be recommended, depending on what post surgery tests indicate.

Hope you can tell us treatment went well.

Barry
Show Most Thanked Posts
User
Posted 17 Oct 2021 at 20:17

If you can afford to pay, you may be able to get HIFU or other focal treatment. The brachytherapy has most likely fulfilled the maximum lifetime dose to your pelvis so further RT to the prostate and seminal vesicles may not be possible. If not HIFU or similar, it will be lifelong HT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Oct 2021 at 01:57
You may be able to get Focal Treatment for free if you participate in a trial which is what I did. I was under the aegis of the Royal Marsden at the time and they referred me to UCLH who are regarded as the UK leaders in Focal therapy. I see the 'Forecas't trial I took part in is no recruiting but you sometimes have to push to get some treatments outside surgery, RT or systemic treatment on the NHS. However, if you are a suitable candidate for Focal Therapy there are centres where you can have it administered privately. Worth investigating.
Barry
User
Posted 18 Oct 2021 at 12:34

Thank you Barry - and has it worked for you? What were the side effects?

User
Posted 18 Oct 2021 at 22:30

It reduced the size of my tumour and lowered my PSA. Six years later I am awaiting to have the treatment again as the tumour was not completely eradicated. (The procedure has been delayed due to a perceived problem noted at my pre op assessment which turned out to be a false alert). It sometimes happens that the procedure needs to be repeated. However on the flip I can say I haven't had any long term side effects so no qualms about having the procedure again. If the treatment is not successful, not only can it be repeated but it can sometimes be followed by a more radical treatment.

This is a thread I posted about it if you want a detailed experience . https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

NB.  In the above link I mentioned that UCLH told me that I had cancer in an iliac node as it had shown up in a Choline Pet scan.  However, I sent the scan to 3 other hospitals and the opinion was that the iliac node was not affected.  I paid for a PSMA scan as UCLH denied me having this on the NHS even though they had the facility for offering it.  This confirmed that the aforementioned node was not affected, there was just seen to be a tumour the size of a grain of rice within my Prostate.  This was of great significance because if the node had been affected it would have ruled out further HIFU and I would have to rely on systemic treatment.

The result of further HIFU is in the balance because I originally had more RT in Germany than you have in the UK, and with the addition of HIFU, a lot of scar tissue for the Ultrasound to go through as well as some calcification.  Anyway, nothing ventured as the saying goes .................... 

 

 

Edited by member 18 Oct 2021 at 23:13  | Reason: Not specified

Barry
User
Posted 19 Oct 2021 at 10:54

Thanks again Barry - really useful as is your thread that you linked to.

As I currently don't suffer incontinence problems (although my IPSS score is not brilliant!) and I am able to get erections I have been concerned that further treatment may lead to problems in these areas. I have been looking at HIFU but it's so good to get a first hand account. My only concern, as you point out, is getting the treatment on the NHS.

Clearly there is no point me thinking too much about what to do until the transperineal template biopsy results come through. However, like you it seems, I like to be prepared and I also like to have some understanding of what the consultants etc are talking about!

Funny you should mention external iliac lymph nodes as my results from the scans mentions 'an external iliac node which was borderline'. 

Interesting also that you were able to show the results of your scans to other consultants. Did you get copies of them from the hospital and did you have to pay to have them sent to you?

User
Posted 19 Oct 2021 at 17:05

Yes I asked for a copy of each scan and made copies to send to my original RT treating hospital inGermany, The Royal Marsden and Birmingham Queen Elizabeth, the last being where I sought a second opinion of a particular Profesor back in 2007. I subsequently found out that through an internal system some hospitals, in the UK, can obtain scans direct from another hospital, they termed it 'calling over' Some hospitals make a nominal charge or charge if you don't request the scan within a certain time after the scan was done. Others don't charge at all and just post it to you. Interestingly in Heidelberg they compared the scan I sent them with those they had kept of those they did all those years ago and largely based their opinion on the size and shape of the iliac node still being the same.

Incidentally, Heidelberg University Hospital is one of those using a new type of HIFU called Tulsa-Pro as in this link but I think it is too early to make definitive comparisons with conventional HIFU, although it looks interesting but I am not aware whether it is past the trial stage yet. http://www.profoundmedical.com/wp-content/uploads/2015/05/Phase1ResultsPresentationFUS_London2015_pdf.pdf

 

Edited by member 19 Oct 2021 at 17:10  | Reason: to highlight link

Barry
User
Posted 20 Oct 2021 at 10:20
Thanks Barry - very useful

User
Posted 27 Oct 2021 at 19:38

Hi Barry - was your initial treatment brachytherapy?

Thanks. 

User
Posted 27 Oct 2021 at 22:42

No! I started on HT at The Roya Marsden in 2007 and then used the time prior to radical treatment to do intensive research following which I applied to participate in a trial in Heidelberg which comprised 30 fractions of IMRT each of 2 gray plus 6 fractions of Carbon Ion boost each of 3 Gray in 2008. The latter is Hadron Therapy like Proton but packs much greater punch. (The Marsden had offered IMRT but using the latest linacs). For the 3 years of trial follow-up nothing untoward was seen on scans but PSA very slowly began to climb and later Scans in the UK subsequently found that there was a new or regrown tumour in one core of a transperineal biopsy. This was treated with HIFU in 2015 but it would seem a very small ampount of cancer was left and hopefully this will now be dealt with in a second HIFU attempt!

I was not offered either form of Brachytherapy back in 2007/8 even in conjunction with External Beam and had I have been I would have been torn between it and what I had but would still have gone my chosen route I think.

Edited by member 28 Oct 2021 at 14:56  | Reason: spelling

Barry
User
Posted 28 Oct 2021 at 14:45

Hi again Barry

I have some results now but no decision on treatment. There is cancer in the lhs of my prostate and in my lh seminal vesicle. No cancer in the rhs of the prostate or rh seminal vesicle.

They say that normally now they would remove both vesicle's and the prostate through surgery ......... doesn't sound like fun!

However, like you it seems, there is some doubt to whether or not there is cancer in an external iliac lymph node. If there is they are suggesting that surgery would not sole the problem. Presumably HT would be the recommendation although they haven't said this yet.

Is is going back to MDT again next Tuesday for another discussion - so I am told.

You mentioned that you sent your scan results to several other hospitals for an opinion on your lymph node. What is the procedure for doing this and presumably there is a charge?

Regards.

User
Posted 28 Oct 2021 at 20:31

Looks like you may be offered surgery plus RT then, maybe with some HT too. Ask about having a PSMA scan to help decide if the iliac node is affected.

To answer your query about referral. My GP at the time originally referred me to the Marsden and then to the other two at my request, so I already had hospital numbers with the 3 hospitals I mentioned through having had some treatment through 2 of them and an opinion from the 3rd back in 2007/8. I did reengage to ask whether they would give an opinion on a Choline scan to which they agreed.. None of them made a charge.

I think going through your GP is generally a requirement, certainly that was my experience.

 

Edited by member 28 Oct 2021 at 23:08  | Reason: spelling

Barry
User
Posted 28 Oct 2021 at 22:49

Thank you again Barry. I have had a PSMA Scan and it’s that which is causing the problem re. Whether the lymph node is affected or not.

User
Posted 13 Nov 2021 at 18:07

Hi Barry

The verdict is that the cancer is in the lhs of the prostate (3 out of 7 samples), the lh seminal vesicle (7 out of 7) and in a lymph node on the rhs of the pelvis near the external iliac artery. MDT apparently spent a lot of time looking at the evidence of cancer in the lymph node and decided it was affected. All areas are Gleason 4+3 (I had Gleason 3+4 when first diagnosed).

The recommendation is for removal of the prostate, seminal vesicles and removal of the lymph nodes in both sides of the pelvis (for safety) by robotic surgery. Radiation treatment was considered but it was unlikely it would be as successful. A 5 hour op I am told and, of course, it comes with the after surgery problems.

I've agonised over it but can't find a better option. In this situation all I can do is to ensure the surgeons (I am told there will be two of them) are very experienced and after researching them it seems to be they are some of the best.

Any comments?

User
Posted 13 Nov 2021 at 18:57
Not what you wanted but hobsons choice then. RT may or may not be recommended, depending on what post surgery tests indicate.

Hope you can tell us treatment went well.

Barry
 
Forum Jump  
©2022 Prostate Cancer UK