Salvage RT- questions

User

Posted 13 Dec 2016 at 21:25

We have had an appointment for 11th Jan for oncology appt to discuss salvage RT. Two years post RRP,, three consecutive psa rises, although only to 0.08. Consultant thinks no point in waiting because of original aggressive tumour (5+4)

For those with experience, please could you give me an idea of the questions we should be asking?

Thanks,
Louise

User

Posted 14 Dec 2016 at 08:50

Hello Louise, sorry can't help with the question but it was posted yesterday with no replies to "bumping" in the hope that somebody with the knowledge sees it.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Dec 2016 at 09:24

Hi Louise
Although I have been through the process I hesitate to give advice but will willingly share things I was told and hope this might be of some help. If the PSA readings have been rising slowly then it suggests that the cells are in the prostate bed which is why they can use RT as they know where to focus it. A rapidly rising PSA would suggest cells are elsewhere and so they would suggest HT rather than RT as HT affects the whole body. They could use both as a precaution. In my case we used RT with HT as a reserve if the RT has not worked.We may not get an answer to this for 18 mths or so. Think about what time of day will suit you best for treatment allowing for travelling time, etc. I was allowed to request an ideal time for me which was midday as I had to travel 47 miles to the hospital. This worked well for me and although there were a few days when they couldn't manage that time it was pretty close. Also double check that the slight continence problem you mentioned before will be OK.
I had another PSA test yesterday as I finished the salvage RT in June.I have another one in March followed by an appointment with the onco.
I hope this is of some help and I wish you both every success with your salvage treatment.

Kind regards

Kevan

User

Posted 14 Dec 2016 at 10:27

I've been reading quite a bit recently about benign prostate cells that are left over easily giving out as much psa as 0.08. I would ask of this before being nuked. Yes you have had 3 minute rises but can wait until 0.2 is reached and still have successful curative RT.

User

Posted 14 Dec 2016 at 12:44

One of the questions that could be asked is whether HT would also be started and if so for how long, as this can have varied and for some severe side effects.

Barry

User

Posted 14 Dec 2016 at 17:42

Originally Posted by: Online Community Member

But wouldn't these generate that level of PSA straight away Chris rather than slowly increasing?

Louise If you trust your oncologist I would go with their advice...they are the experts

Bri

Edited by member 14 Dec 2016 at 17:43 | Reason: Not specified

User

Posted 14 Dec 2016 at 17:50

Not necessarily Brian
These tiny tiny changes in benign cells can be caused by cycling and sex etc. I agree you should trust your Onco but it is fair to challenge them rather than just nod your head when you have a few facts. I was going to undergo 35 sessions of RT but when I questioned it they admitted it wasn't going to be curative. They were just throwing the kitchen sink at me because of my age. A bit different in Louise's case as the psa isn't romping away like mine , but even so it's ok to ask considered questions

User

Posted 14 Dec 2016 at 21:54

Hi Louise I had adjuvant RT after positive margins after RP my PSA was undetectable after asking I was told early RT was giving good results also asked my brother who is a pharmacist who asked consultants and he came back with the same advice
so ask about recent trial results which also show promising results on early RT after RT. I know your oh is further on than I was but worth asking .Andy

User

Posted 31 Dec 2016 at 23:35

Hi Louise, After Prostatectomy in late 2015 my PSA was .04 and fell a little to .03 on the 2nd test but then through 2016 it started to rise with the test doubling over each 3 month period (.04, .09, .18) Due to the rapid rise my Oncologist suggested we go for Salvage RT. Given the rate of rise it was a fairly easy decision to make to go ahead with the treatment so my questioning was mainly around the practical implications of the treatment e.g. What side effects was I likely to experience, how was the treatment delivered, how long would it last, how many sessions etc. The one question I specifically wanted an answer to was "Are we still working towards a cure?" fortunately at this stage the answer was yes. One thing I would ask is if they run any open evenings to the Radiotherapy unit. At my hospital (Clatterbridge on the Wirral) They run an open evening one night a month in conjunction with Maggies which helps to reduce any trepidation about the treatment itself.

I am now nearly at the end of my 33 sessions with just 7 to go, so far my biggest problem has been a bit of tiredness and a bit of a change to bowels but nothing which is even slightly problematical. Obviously I won't know how effective this has been for some time as my next PSA test is not until the end of March but I am living in optimistic hope.

Hope this might be of help to you both

Mike
"We know what we are, but not what we may be."
W Shakespeare.

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