Proton therapy and other alternatives to standard radiotherapy for relapse after prostatectomy

Hi Almondnut

I only know a little about these treatments so I may not be 100% accurate but am sure that others will correct me as necessary.

Proton therapy is similar to RT but arguably less side effects, it is expensive though and unsure of benefits over RT.

Nanoknife is different, it works by electocuting the cancer cells .less side effects.

The only thing is with both of these options you need to know where the cells are and if  they wont do a scan because it wouldn't show up (because it's probably microscopic amounts)  then it may not help.

They probably want to do salvage RT on the prostate bed (just outside where the prostate was situated) in case any cells were left during surgery.

Looking thru my post I don't think that I have been much help , see what others say

Regards

Steve

Hi again Almondnut, I will repeat my answer from your previous thread on this at the end of this reply.

When I had a recurrence PSA of around 0.7 a gadolinium enhanced MRI picked up cells on the prostate bed but nothing else.

I then had a choline F18 PET scan which confirmed the cancer cells on the prostate bed plus a more active cluster in a seminal vesicle remnant.  There are more sensitive PET scans around now e.g. PSMA PET scans which are much more likely to pick things up at a relatively low PSA. 

See this link PSMA PET Scan and and Axumin PET Scan

I think you would probably have to pay to have these scans at the moment.

The scans I had enabled to the radiotherapy to be more targeted but generally oncologists will just hit the prostate bed and a wider margin to try and cure the patient. My oncologist was convinced I have metastasis (still is convinced) and wanted to scan to check even although the chances of finding metastasis at that point was low.

I am not sure there is evidence that proton therapy is advantageous for recurrent prostate cancer over radiotherapy using IMRT.

Maybe someone will come along and answer that.

I also don't think nanoknife can be used after prostatectomy at the moment.

" I eventually had a gadolinium enhanced MRI and a PET scan to try to identify where the cancer was. I started hormone therapy straight after the PET scan and then had salvage radiotherapy three months later.

The big problem is it is very difficult to identify conclusively whether a recurrence is local or distant. 

I would be asking:

1. Are you going to do any scans to see if recurrence is local or systemic? (Possible scans are MRI, PET scan, bone scan)

2. Are you going to start me on hormone therapy straight after the scans to starve the cancer of fuel?

3. Once the scan results are in will the MDT discuss and agree a way forward?

4. What are your thoughts on this recurrence? What is your plan of attack?

You and your other half then need to decide how aggressively  you want to tackle things.

Have a read at my profile, I’ve been through this.

This link will help too https://www.prostatecanceruk.org/prostate-information/treatments/if-your-prostate-cancer-comes-back"

I found managing my recurrence very challenging but I just kept asking questions and pushing.

Best wishes.

Thank you ID04.

We did ask the Urologist the questions you suggested  when we saw him yesterday. I pushed hard for scans but he said no. Here were his answers. 

1. He said no to pet mri ct. He just ordered ultrasound and chest xray as a control? He said as the psa doubling time is not less than 6 months that scans would be pointless and just offered salvage radiotherapy 27 sessions.

2. He said doubling time in less than 6 months was indicative of metastasis but since hubbys PSA doubling is not currently less than 6 months he doesnt suspect this and hormone therapy not appropriate. I dont want to wait until it is doubling within 6 months!

3. We cant have a scan if he wont prescribe it. Even if we are paying for it we need it prescribed by a specialist. We are in Spain this is how the system works. So I am not sure how to get a pet scan if consultant wont recommend it.

4. His plan of attack is salvage radiotherary and then monitor psa. If it starts doubling get scans and consider hormone treatment.

All the above conducted in Spanish which is my second language so it doesnt help. We are just worried about normal radiotherapy and risks it can cause other cancers and cause incontinence. I just want to explore if there is a better solution out there even if we have to pay for it.

Thank you for taking the time to give answers its really appreciated.

Also where did you get the gadolinium enhanced MRI and a PET scan. Even if in UK we would travel and pay for it.

Thanks again!

My PSA doubling time was around 2 months so I think that’s why the MRI was ordered which was done on the NHS. The PET scan was a last minute idea and was done on a research bass I think.

I also looked at getting a PET scan privately as I had to wait weeks to get the scan as the funding was only for two per month. I was extremely worried about disease progression when waiting. The cost was around £2000 but I didn’t proceed because of delays in getting authority to do it.

The same problem as you have highlighted arose regarding the private scan. My oncologist would have to write a letter agreeing to it and also agreeing to read the report.

The fact that his doubling time is greater than six months is reassuring but I would still be pushing for a scan too. 

Is he talking about doing hormone therapy along with the radiotherapy?

I had a look online and you can book private MRI and PET scans in many centres across Spain. The issue may still be that the consultant won’t agree. 

Hope my answers are of some help.

Yes thanks. Looking to see if we can get a pet scan elsewhere. 

Thanks for your help and good luck to you.

This is the second post about this treatment on here recently.  The post by Foxy1 sounds like a sales pitch rather than someone going through or had treatment.  Sorry if I sound sceptical but you have not filled in any details in your profile?  If as you suggest this is going to be the best treatment, surely you would post all your results so that we can see them?  Then make a decision?

We are all familiar with the op, R/T, H.T., brachy etc etc but the other posts about this treatment are just like this - lacking detail and why would you put your phone number when this is an open forum for patients where you can simply message them if it is top secret?

Come on, tell us in detail about the procedure please!!!

I see that Foxy1 has deleted the post so I think you are right.

Hi SD1,No ,my post wasn't a sales pitch.I have posted also that I appreciate that  Nanoknife is not available on NHS- (equipment not  sanctioned for prostate use here ) and is only available in private sector ,which obviously is not available to everyone- Princess Grace hospital, London,  - Proffessor Emberton , and abroad,.Prof Emberton would not do my stage , local advanced 3a,Gleason 8 (4+4), so I contacted Vitus Prostate in Offenbach, Germany. under Professor Stehling ,probably world  leader in this field,-8 years experience   700+ treatments at all stages.

    - no incontinence  minimal ED. Best scans are crucial, to -providing  best material for  computerised treatment and  they advocate MRI with endorectal coil,and in my case also a gallium 68 psma  pet  scan.They are expensive approx  1200€, and 2400€.These scans were done last April.I was put on Hormone tablets - 150mg bicalutamide for several months to reduce  prostate size-- PSA went from 21 to 1.8.Returned to Germany  in November for further preop scans,and treatment- (3000v electricity,!) - 15min,out of 2h procedure under anaesthetic .

   + special injection- bleomycin during treatment,to help counteract any stray cancer cells.Only cancer cells are destroyed,no other tissue, as occurs with other procedures.MRI scan taken following morning, to check  treatment result,and provided all ok, you can leave with catheter in place- (for approx 2 weeks).

   Cost varies according  to how many needles used during treatment , (I had to have 6  to cover  prostate area)- approx  16000€, excluding scan costs.Appears to have gone well  and currently am monitoring PSA  in NHS system." Vitus Prostate" site gives all details required.for initial enquiries.

 Best regards to all.