Advice on when to start radiotherapy?

Jane,
It's hard to say. My situation was slightly different from your hubby's. I had my RALP in January of 2012 and my Gleason was considerably higher than your hubby's. I decided with the help of the Rad Onc to go with adjuvant radiation. My decision was primarily based on the study done by the SWOG. It had some fairly convincing data on adjuvant radiation. IMHO, I'm not sure your hubby is a candidate for salvage radiation, but could be a candidate for adjuvant

I just completed my IGRT last Friday and it wasn't too bad. I worked through the therapy and only took 1.5 days off for the fatigue. The other side effects are still around a little, but much better since I finished the treatment.

Best of luck with your decision.

I was put in adjuvant RT prep mode the day my post-DaVinci path report came back. My PCa was out. How far out? There could only be educated guesses. It wasn't in the lymph nodes they removed, so it should have been in the area not excised in surgery, right? We pulled the trigger on RT, I did 39 sessions, but 3 months after it was finished I had a detectable (0.01) PSA. It was out too far, and we guessed wrong to a degree. I say that because I don't know but what the RT killed a large part, and I might be much worse off today if I had not done it.

I have continuing, and in some cases worsening, side effects two years after RT was finished. Finishing RT is not the end of RT.

Knowing what we could know at the time with the resources allowed me by my insurance company, the decision was correct. We "threw the kitchen sink" at it, but we missed at least a part.

I'll agree that you want at least a second opinion, and likely a visit to a good PCa oncologist. But at the same time, to ask if anyone is 100% sure - don't waste your time and create illusions.

Thanks all. I think the problem with my husband is that his PSA has gone DOWN as well as up. If cancer is present, then this shouldn't happen. All the PSA tests were done in the same lab.

It is this up and down pattern that is confusing the ORs we are seeing. One wants to go for HT and RT immediately (and I think I concur). The other wants to do a review of the path report (as he went from Gleason 8 at biopsy to Gleason 6 post surgery). This has been done and the Gleason 6 is confirmed. PC was also present in the bladder neck.

They also both recommended a C11 choline PET scan. This is now also causing delay as there is a problem with the manufacture of C11 in the UK at the moment and no scans are being done.

Additionally, several people (inclduing specilaist doctors) have said that the scan is unlikely to show anything because his PSA is very low at 0.2 - 0.4. Apparently not much shows up on the scan until PSA = 4.

So we can either watch and wait and continue the monthly PSA tests (which is what my husband is inclined to do) or we try to nip it in the bud and hope that the cancer has not already left the prostate bed. The kitchen sink approach (as described above by the moderator) s my preference (though I appreciate there can well be many unwanted side effects).

I wonder if there is anyone out there who felt that the watch and wait position is a good one?

It is already 8 months since RP and although PC is supposedly slow growing, one size doesn't fit all! As is very obvious from the personal stories in this forum.

Purgatory - I am always so sad to hear your story (but so grateful for all the advice you have given me along the way). What type of radiation treatment did you have? I guess this will bring me to another question for the forum (which I will post separately), but I am conpletely bamboozled by the differing array of types of treatment we can have: IMRT, EBRT, Rapid Arc, Cyberknife or 4D IG IMRT plus DART. There is also the option of proton therapy, but again we don't have this treatment in the UK, so we would have to travel abroad for that. This is the next thing for me to try and get my head round. Little steps! Little steps!

English Alf - so pleased the RT seems to have zapped it for you.

Turner 2 - you had RP the same day as my husband! Now you are in the zero club (which is fantastic news). I hope I can persuade him to join you there sooner rather than later!

Thanks again for your advice.

Jane

Thanks English Alf. The videos are very interesting. We live in Sevenoaks and my husband works in London so, in actual fact, he can pretty much choose where he goes and what type of radiation he has. Our local NHS hospital is in Maidstone, but they don't have all the most up to date radiation equipment. In fact London will be easier for him than Maidstone. I guess RapidArc is the creme de la creme if it dleivers so many doses.

The other option is to pay for proton therapy and I have been following the threads on this forum about that too. He would need to go to Switzerland or Germany or even USA for that. but it seems not to have demonstrably better results than standard IMRT or EBRT. It also seems to work better if you have this treament when you still have a prostate to treat! Plus of course, the astronomical cost of installing the machinery means that it's in the institutes' interest to persuade people to go and use their facilities, so they seem carry very persuasive advertising which isn't necessarily the best thing.

He is hoping to go either before (or maybe best to go after) work each day once it starts. From what I have read, tiredness will be the most tricky thing during the course of the treatments (side effects aside) so I presume that this is not unrealistic.

I don't know about the PSA up and down situation, but it looks like, so far, your husband's measurements remain at least 0.2. When I was evaluating salvage radiation, my docs and my reading of journal articles indicated that the chance of successful treatment dropped off quickly if you wait beyond 2.0, so I elected to go ahead with SRT when my PSA passed 0.4. Based on what you have said, and David's caution above about possible complications, I think you may be able to wait a bit while you investigate further, but if it were me, I'd not wait until the PSA got anywhere near 2.0.

Also in my case, as in most cases, it was a bit of a shot in the dark. Based on my slow PSA rise since my RP surgery, both my R.O. and my Uro believed there was a very good chance that whatever was going on might be local to the prostate bed and therefore responsive to radiation treatment. My pre-radiation x-rays showed an enlarged lymph node near the prostate bed which was directly targeted during my SRT treatment. The SRT worked for at least two years, though I've recently had a reading of 0.01, which may or may not indicate SRT failure -- too soon to tell.

I mean 2.0 based on studies I read a couple of years ago. Those showed a sharp drop-off in effectiveness for those who waited beyond 2.0. However, I think this guidance was based on the studies' parameters, with 2.0 being chosen as an arbitrary high-end cutoff for a statistical analysis that looked at many separate studies.

My best guess -- and this is only my personal guess; not a medical or mathematical opinion -- is that the risk is essentially linear -- rising as PSA increases and reaching a critical point at around 2.0 that indicates the chance of successful radiation has become quite low.

My own doctors' recommendations were to go to SRT at or soon after hitting a PSA or 0.4 -- in my case I was at 0.44 when I began SRT -- unless there is reason to believe the PSA rise is not due to something local to the prostate bed and thus not likely to respond to SRT. In my case, the slow rise over 8 years suggested --but did not prove--a local recurrence.

My opinion might now get biased, (!) as back in the early 80's I used to work for British Rail at London Bridge and my mum trained as a nurse at Guys. So I would think that he might find a few Southeastern trains between Sevenoaks and London Bridge Station with RT at Guys Hospital next door to the station the handiest and perhaps better than the M26 and M20 or A25 and A20 to/from Maidstone and its charming one-way system! How's his continence, as I think he'd be well advised only to travel on trains with toilets on them, and if needed there are accessible toilets at intermediate stations like Lewisham and Orpington.
I found the train much easier than traffic on the motorway when travelling to and from my RT in Amsterdam, especially when I was getting very tired.

And this is a useful little brochure about RT at Guys
www.guysandstthomas.nhs.uk/resources/patient-information/radiology/radiotherapy-to-the-prostate.pdf

Alf

Just got out of the hospital a few hours ago cut out tumor and it is sent out willl not know anything until next weeker! they cut . Thank You for the prayers I need all I can get, cannot imagine cancer the second time in two years. doc says it was bleeding badly and they messed around thinking infection, then kidney stones which I have had 5 times , scanned and did not find stones then went in with scopes and found the tumor. My spellig is bad as I am still pain meds. Take care! Know who is giving radiation! as they found a lot of damage from radiation