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Salvage radiation

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User

Posted 25 Aug 2020 at 18:18

We've got a letter from the Urology Department. Basically we will have a meeting with the oncologists soon to discuss Ian's radiation treatment. We will be discussing whether Ian should get radiation only to his pelvic lymph nodes along or also to the prostate bed. Since there is no evidence of any cancer there at the moment (PET scan confirmed this), it would probably not be necessary. I agree, what would be the benefit of radiating that area if there is no cancer there right now. It would not stop any future cancer from developing in the future, say like in 5 years, right? If Ian was to get radiation to his prostate bed, he could wait 6-12 months to let his incontinence recover further. I feel that's a long time, especially being on hormone treatment all that time before, with all its side effects. Also with Covid, we don't know what the situation will be in 6 months. I don't know if he can get radiation treatment done privately, not in Scotland anyway, we would need to go to London. Anyways, they want him to start on Bicalutamide tablets 50mg once daily for 4 weeks and then introduce an LHRH analogue injection, which could be given after 2 weeks on the tablets, until he start radiotherapy. What are your thoughts about that? Is it usual to take tablets and injections together? Or would he have a choice to refuse them? I just worry about all the side effects, and some could do permanent damage. I don't see the point of Ian getting radiation to his prostate bed, since there is no cancer there, and if he did, would it not worsen his ED problems as well? I know those problems would only show up a year later or so, and if he can keep using the pump, etc, whilst on hormone treatment, then surely that's good, no? I feel that the less time he needs to spend on hormones, the better. So, if he waits 12 months for radiation, then that would be a long time for him to be on hormones, and he'd probably have to be on them afterwards for a while, as well. Ultimately, I know it's his decision, and i'll support him whatever he decides, but, at the same time, I guess I'm concerned about our intimate life as well and how it will probably be negatively affected by all this, and all the side effects from the hormone treatment. I think its going to be a roller coaster!

Edited by moderator 25 Aug 2020 at 18:37 | Reason: Removed formatting

User

Posted 25 Aug 2020 at 19:05

It is quite hard to follow your post but I think you are saying that the onco is leaving it up to him whether to include the prostate bed in the zapping zone, or to only have radiation to the affected nodes?

If there is microscopic cancer in the prostate bed, the RT will eradicate it so it cannot raise its ugly head in 5 years time. If the prostate has been removed, a new prostate cancer can't develop in the future - it can only develop from the cancerous cells left behind.

You have thrown in the mention of getting RT privately but I am not sure what benefit you think there might be to going private? Were you thinking that the delay of 6-12 months was about NHS capacity? It isn't; it is about the hormones being given time to weaken the cancer so that the RT is more effective. However, I agree with you that 12 months would be a long time to wait and, if he only has the lymph nodes zapped, the matter of his bladder control may be irrelevant. RT is certainly available privately in Scotland - as in England, it is commonly done on the NHS machines and the money generated is fed back into the relevant hospital's finances. Going private is unlikely to change the timing of the start of RT much.

The bicalutimide are essential - if he went straight onto the injections without taking the bicalutimide first, he would risk a tumour flare as the cancer gets a testosterone rush. There will be no significant side effects to taking bicalutimide for 4 weeks.

Out of interest, was all of this information provided in the letter from the surgeon? It will be interesting to see whether the onco gives you the same options / choices and also what his / her view is of the assessment that there is no cancer in the prostate bed.

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

User

Posted 25 Aug 2020 at 20:09

The PET scan won't find micromets in the prostate bed (micromets are mets too small to show up in a scan).

If you don't have the prostate bed treated and there are micromets there, they will continue growing. You probably won't be able to have the prostate bed treated with radiotherapy later - you only get one shot at pelvic radiotherapy, because that one is your max lifetime dose (there are some rare exceptions). The radiotherapy does come with the risk of temporarily weakening your remaining sphincter - pelvic floor exercises are very important. There's a small risk of getting a stricture later (on top of the risk you already have), and of getting bowel problems. You need to weigh these up against the risk of having micromets.

Radiotherapy rarely has any immediate effect on erections, but the hormone therapy usually does while you're on it. In a small number of cases, radiotherapy can result in loss of erections some years later due to fibrosis of the blood vessels supplying the penis.

The tablets and injection are part of a bundle - that's how you take hormone therapy. Hormone therapy isn't always used with salvage radiotherapy - you could ask your oncologist what difference makes to outcomes in your position. If they are only proposing neoadjuvant hormone therapy (i.e. before the RT, and not afterwards), that's not a long time - usually 3-6 months.

Edited by member 25 Aug 2020 at 20:11 | Reason: Not specified

User

Posted 26 Aug 2020 at 07:07

The reason for zapping a wider area would presumably be the same as it was for me, which was concern that undetectable cancer might be present in those areas. How wide an area is irradiated has little impact on either short or long-term side-effects of RT. I'd follow the recommendations of the experts if I were you.

I found the whole business of RT and HT to be relatively Ok. Not entirely problem-free, but nothing too horrendous.

Best of luck, whatever your decision is.

Chris

User

Posted 26 Aug 2020 at 10:08

As others have said the RT to the prostate bed will deal with micro mets there.

These will not show up on any scans at that stage. I had thoughts about having salvage radiotherapy privately when my oncologist was showing reluctance to do it. The costs are eye watering and it tends to be on the NHS machines anyway.

Ido4

User

Posted 27 Aug 2020 at 08:10

I had my RT privately through my work medical insurance at the Clatterbridge Private Clinic, which is in the same building as the NHS Clatterbridge Cancer Centre. I had my treatment on the NHS machines; the only difference was a fancy waiting room with leather armchairs and newspapers, and nurses who brought me my pre-scan water rather than having to get it myself 😁. The bill for the treatment was £28,000. Definitely NOT worth funding it yourself!

Cheers,

Chris

Edited by member 27 Aug 2020 at 08:11 | Reason: Not specified

User

Posted 21 Sep 2020 at 16:40

Hi everyone, Just an update for everyone- Ian had meeting with oncologist last Monday, and he recommends radiation therapy to the prostate bed (at a lower dose) since there is evidence of a positive margin after the operation, and radiation to the one lymph node (only one is cancerous) at a higher dose. He wants to see Ian again in December to see that his incontinence is continuing to improve and if he's happy with it, start radiation in January/February. He would receive 33 sessions. This seems a lot, but our surgeon had said it would be 4-6 weeks! In the meantime, Ian has received his first 3 monthly injection of Prostap on Thursday, and so far he doesn't feel much different, but its early days. His oncologist recommends he's on the hormone therapy for 2 years in total. The oncologist also thinks any focal treatment might not be as successful, and he would probably then need more than one treatment. But, the private consultant Ian was in touch with about a possible operation, will be in touch with him soon, but I don't know if they will be able to treat the positive margin? All will be revealed!

Edited by moderator 21 Sep 2020 at 16:44 | Reason: Removed formatting

User

Posted 22 Sep 2020 at 12:02

I hope the HT and RT go well. I asked about an operation to remove tumours a year or so after my prostatectomy but was told it wasn’t an option due to the amount of pelvic disturbance during the original surgery and adhesions. It will be interesting to see what Ian’s surgeon says.

Ido4

User

Posted 24 Sep 2020 at 09:29

I had salvage radiotherapy. I was on bicalutimide for 4 months before it started. In total, I had 18 months of bicalutimide.

I had a PSMA scan which showed cancer in 2 lymph nodes but none on the prostate bed. Nonetheless, I had radiotherapy to the full area (bed and nodes). I was pT3b and Gleason 9, positive margins, so they took no risks in the end.

Today, 2 years on from radiotherapy and one full year without any treatments at all, my PSA is >0.006, the lowest the machine will go. The oncologist said she knew it was medically possible to get me to this stage, but that she really wasn't sure we'd achieve it. We have.

All decisions are personal, but I have no regrets.

User

Posted 07 Nov 2020 at 18:18

Hi Lynn,

I tried to post a new message under a new conversation title and it hasn't come up. This was yesterday. Does it take a while to show up?

User

Posted 07 Nov 2020 at 19:12

Sometimes but not usually this long. It is easier, and makes more sense, to just post here on your existing thread.

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

User

Posted 08 Nov 2020 at 15:00

I'll do that Lynn!

I wondered if anyone knew if it's safe to take Echinacea supplements whilst on hormone treatment. Ian has stopped his herbal prescriptions from his herbalist for immunity, but he could do with some boosting. We got back from a little holiday and he has got labyrhinitis now! The medication for it is making him also more tired. Good news is that his PSA was down to 0.1 after 7 weeks on HT. I think he's being quite lucky with side effects so far; some hot flushes, feeling a bit more emotional, sometimes more tired (going to the gym helps counter-act the fatigue). Are these side effects likely to get worse as time goes on, and could he get others a long the way? He's to be on HT until September 2022. Hopefully he'll start his 33 RT sessions in January/February, dependent if oncologist is happy with his incontinence.

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