Salvage radiotherapy

Lovely feeling when you have finished the RT isn't it. Another step along the road completed so fingers crossed for a good result.

Good on you for booking your trip to Canada and I hope that you will enjoy it and have a relaxing time.

I have only had one Prostap injection so far which has been fine but I am 3 weeks post hernia op so am just very frustrated at not being able to get on with the garden at the moment. The surgeon said that the hernia op was a bit more difficult as a result of the salvage RT as it damages some of the tissue as it passes through which makes some of it thicker. Anyway, three more weeks and I should be back to normal.

Glad things have not been too bad for you. All the best for the future.

Kevan

A quick update, I had my PSA measured on Tuesday and it is <0.1 which is good news for now but it is very early days.

I don't have PSA testing to three decimal places that would appear to be the norm elsewhere so who knows how much below 0.1 it is.

My PSA doubling time was between 1 and 2 months so the oncologist has repeatedly suggested that there are microscopic mets in addition to the local recurrence the RT has hit. Time will tell. At least for now the number is very good, long may that continue.

Best wishes, Ian,

I thought I would update on my progress and get the view of the wider experience on the online forum. I finished salvage radiotherapy 26/4/17. My PSA <0.1 on 2nd May 2017 and again 1st August 2017. Prior to this my PSA doubling tome was around 1.2 months and started rising approx. 1 year from surgery.

My neutrophill count was 0.85 on 2nd May and is now 1.1. I saw a different oncologist from the one I usually see today. He is happy that the PSA is undetectable(as am I) and is unperturbed by the low neutrophil count.

Since my PSA return was early and the PSADT rapid I asked his view on early chemotherapy given that my previous oncologist said that the quick return and rapid rise in PSA almost certainly meant I had metastasis but it wasn't big enough for scans to pick it up, particularly since the resolution of the PET scan is a minimum of 5mm. He told me that since the PET scan I had last December was negative for any spread (my PSA at the time was around 0.8) that he didn't think any further treatment was necessary or desirable. I will remain on HT (PROSTAP 3) until the end of April 2019.

I will be so happy if this salvage radiotherapy has cured me but worry that if I have microscopic metastasis that by the time this is picked up chemo won't be as efficient as it would be earlier. That said I don't want to unnecessarily intervene for the sake of it having read some of the problems fellow sufferers have had during and after chemo.

Shall I just accept this advice and hope that I am cured or should I seek a second opinion? I really don't know what to do for the best.

Your views and advice on the above would be very welcome. 

I think you've been really brave and tackled it head on. You've more or less done all you can for now I think. Oncologists around the country treat things differently but I feel you've had good advice. Click my picture and read my profile. Sort of similar to you I think although my psa post surgery was instantly high and racing. They are so convinced I have mets that I've refused the RT. They said I was off the cure path with my lymph node involvement. I'm not even back on HT thankfully and in very good health. We're going to wait till psa around 20 and then re-try PET scans etc. I'm not in denial but living life to the full off treatment rather than maybe going bananas with stress having it. I've been working as a Healthcare Assistant at an old folks nursing home for the last four months and it has been giving me an immense amount of satisfaction in my retirement. My wife says it's an unbottled talent we didn't know I have.
I hope you can relax a bit now and enjoy your time without worrying about psa. You've done good !!!

Thanks Chris, your story has many similarities. It is unbelievably disappointing when the surgery fails, I can't describe how dark I felt when I received the news. I was initially told in January I was incurable and that RT was off the table. I asked for a second opinion and three oncologists met to discuss my case. Apparently they do this sort of thing routinely on each Tuesday lunch time. The decision was to proceed with RT and that the chance of success in curing me was around 40%. Like you my PSA was rising rapidly but after a period of being undetectable (It was undetectable on 1/6/16 and then 0.3 1/9/16, 0.4 8/9/16 and 0.7 around 22/10/16). I had the surgery 23/7/15.

I admire your take on things and coming off treatment if and until your PSA reaches a pre agreed point. I think the choline F18 or C-11 scans seem to be unable to see a lot until PSA reaches about 20 so that seems sensible. That said I had a Choline F18 PET/CT scan last December when my PSA would be around 0.8 or so and it picked up tumour activity on an SV remnant but I think it did that because the tumour was very metabolically active. I had a prostate bed tumour picked up on a Gadolinium enhanced MRI scan last October which didn't really register much on the PET/CT scan as it was not very active metabolically.

I am now suffering increased side effects but generally they are very manageable and other than fatigue I feel well.

I return to my job as a head of science at a secondary school tomorrow (I teach Physics) so we will see how juggling a demanding job and fatigue goes!

I am so grateful that this forum exists and has many knowledgeable and supportive fellow sufferers and their partners.

Many thanks for your comments about next steps and keep in touch re how you are doing too.

Best wishes, Ian.

Thanks Col, yes it throws a spanner in the works as it is quite rare but tends to behave aggressively and not throw much PSA out. I was told my prognosis is worse because of it's involvement but the urologists couldn't quantify how much worse.

I will seek further advice,.

best wishes, Ian.

Thanks Lyn, I'm not sure if the intraductal spread was invasive or non-invasive, I will see if I can find that out. I wasn't told at the time of the surgical review, they just said that it made my prognosis worse, more unpredictable and raised the chances of recurrence. They also mentioned a tendency for this type of cancer to be more aggressive and suggested that moved me from a Gleason 7 to at least an 8. The appointments I get say you can be seen by any of three oncologists. I'm not sure if I will see my original oncologist in February. He has said in the past that surgery was the right first choice for me as the intraductal cancer doesn't respond well to radiotherapy as you have also pointed out. It also disguises its presence by not throwing out much in the way of PSA. Despite having adenocarcinoma and intraductal cancer my PSA was around 7 or 8. I hope I can take comfort from the fact that the PSA is undetectable after radiotherapy and continued hormone therapy. Do you know if intraductal cancer responds well to other treatments?

Are you on 6 monthly appointments???