Hi All
My prostate cancer journey started with a diagnosis on my 70th birthday in 2016. Gleason score 4/3. I had 35 sessions of pelvic radiotherapy followed by 3 years of hormone therapy.
Earlier this year my PSA rose above 2.0 and I was sent for a bone scan which identified several potential problem areas. CT and a PET scam followed. The PET scan identified just one metastasis but unfortunately it was located on vertebra C7 in the neck.
I was about to be put back onto hormone therapy when I was offered the opportunity to have Stereotactical Ablative Body Radiotherapy instead. This seemed to be a good option since it would clear the existing metastatsis and delay the need to go back onto hormone therapy.
I went for the planning scan and should have been embarking on 3 days of treatment next week but at 1600 on Friday I received a phone call from the unit stating that because of the location right next to the spinal cord my treatment plan was complex. They had run two simulations and were concerned that damage could result from the treatment. The proposal is to delay treatment for possibly a week while they revise the plan and and carry out more simulations.
I was always concerned by the fact that the target was very close to spine but now I am very concerned and would be delighted to hear about the experience that others have had with SABR to the spine.
Hi Ever hopeful , that is an interesting post. I don’t have any experience with SABR but coincidentally this week I had results of a PSMA PET which identified a new met in my Sternum. I went through all the options with my oncologist including various RT options and her view was that as my PSA was above 2 and rising fast, the PCa was starting to gain a foothold again and I needed a systemic approach rather than trying to zap a single area. Her view was that micromets could be all over the place already and it would be better to slow the progress with HT. Unlike you, I have remained on HT since diagnosis in 2018 (as I was advanced at diagnosis), so I am already living with that and hopefully the new drug Enzalutamide (in addition to Zoladex) won’t cause too many side effects and should lower the PSA for a year or two.
My question to you would be about the chances of collateral damage to your spine with SABR and will that treatment lower your PSA? Best wishes, David
Hello Ever hopeful .
My husband recently had SBRT to the upper abdomen area mets which were difficult to get at and needed accuracy to prevent collateral damage. My understanding is that this kind of radiotherapy was originally designed for the treatment of brain tumours. Like any technique it is dependent on the machine used and the expertise of the oncologist and the technicians so I would be reassured that the experts will only do it if they are confident that they have the planning scan sorted. If you are concerned then don't be afraid to ask your team what their experience is with SBRT to the spine and what their success rate is with this procedure.
Thank you for the reply. Collateral damage is exactly what I am worried about. A concern reinforced by the fact that the team are having to go back and rework the plan.
I'm not suprised that you weren't offered SABR which, because it so finely targeted, seems best suited to those who have just 1,2 or 3 metastases.
Ironically I have just received the results of my most recent PSA test, last tuesday and it has dropped from 4.27 to 2.84 ! I know I was on bicalutimide for about three days but.......
I did not enjoy my 3 days on bicalutamide but this probably rather personal. I am suffering from atrial flutter and waiting for a cardioversion. One of the side effects of bicalutamide is breathlessness, atrial flutter also leads to breathlessness.
Best wishes John
Thanks for that though I am not sure I liked the survival rates very much until a bit of research told me that average live expectancy in Brazil is just 72.
I'm not just concerned about life expectancy. I'd like to be free of too many limitations as well and given the location of my single metasis I think I have cause for concern.
The RD&E does seem to have good reputation with SABR and they have been doing longer than most which is encouraging.
Thanks for your reply Ever hopeful I probably didn’t make it clear, but I only currently have 1 bone met and RT was dismissed. I guess a lot is down to the individual consultants choice, but I have faith in mine and she has done well so far. Interesting about the PSA reduction. David
Hi Confused about SABR,
I recently had treatment on my C5 and T4. Both had 6mm tumours on my vertebrae. The Radiology team made a mask which locked me down and reduced any movement. A second mould was created for the T4 tumour. I did 3 days on each tumour. One month on and I have had no side effects, apart from finding it a bit hard to fall asleep. I am not on any medication which is great. It was really easy and painless.
Do you know if you have oligometastatic or metastatic secondary bone cancer. Oligometastatic is still curable.
All of the best.
Munster
That was just the encouraging response I was hoping for. Thank you so very much.
Up to now the only experiences of SABR that I have been able to find relate to other parts of the body whereas you had treatment to C5 which is only two above C7 and therefore much more relevant to me.
My understanding of oligo is that it means that there are just a few matastases. I did read somewhere that SABR was only suitable for those with three or less and I have just one. Oligo is treatable by SABR whereas widespread metastases aren't because SABR is very focussed which does nothing for a widespread problem.
Hi Ever hopeful
You will get through this with ease. This is what they may make for you to ensure you keep still. Your definition of Oligo is correct - it means a few and Radiation is very precise and can cure your cancer.
Cheers
Munster
Thanks again for your encouragement.
I have already been kitted out with the hoodie and was due for treatement on Monday. I got a phone call at 1600 on Friday saying that they weren't happy with the existing plan and were going back for a rethink. Good that they are that careful but I have to get psyched up all over again.
Hi David
I was put on enzalutamide instead of Arbiraterone because I had trouble with my heart.
Like you said enzalutamide just makes you fatigued and a little tired, of course we’re all different, but I think you should be fine.
Out of all the treatments I’ve had, this one was easy. You usually have four tablets daily and try to take them at the same time.
If your in pain from anything like back ribs etc, you can still take co codormol or paracetamol, I would get the coated type that way the taste does not linger.
Stay safe
Joe
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