Salvage radiotherapy after radical prostatectomy

Hi Ian, just read your entry and thought I would throw in my own experience. In late 2014 I was diagnosed with aggressive PC, gleason 9. my PSA was doubling every 4 weeks. I had surgery to remove the prostate, nerves and lymph nodes but my PSA although back to a low figure continued to double after my post op 6 week blood test. I was put on HT which controlled it for a while and then it was decided I would have salvage radiotherapy targeted at the prostate bed, I had 20 sessions. I had the usual side effects during the treatment, pain urinating and during bowel movements, also increased urgency to go. My PSA dropped to undetectable and remained that way for 12 months to the month. I had started to feel ill again and by chance a routine blood test found my PSA had climbed, it doubled again every 4 weeks and I was left as long as possible before hormone therapy would commence, this time it would be a long term treatment plan. Anyway, the long term effects of the radiotherapy, my bowels never recovered properly, I was left never being able to empty my bowels properly and ended up visiting the toilet sometimes 8 to 10 times a day, with urgency, the doc gave it a medical name  which I can't remember..sorry. It destroyed my confidence to leave the house and the docs decided I should take a daily laxative, probably permanently. I now take Laxido twice daily and a Senna liquid at night, it helps but its still not right. The positive thing for me at the moment is that without any explanation from the docs and having no treatment, as in HT, my PSA suddenly dropped to zero at the blood test where I was expected to hit the level to start HT. The only thing I did off my own back was when my PSA started to climb again, that same month I started to drink a daily cup of dandelion root tea and take a daily 10,000 IU capsule of vitamin D3, I'm not claiming that was the reason for the zero result, but hey, you never know?

Now, would I still have had the radiotherapy, being honest, I don't know, I don't enjoy how my bowels now function but it was given as a chance of a cure, just as the surgery was. At the end of the day, you have to go with your own gut feel and accept the consequences if it doesn't quite turn out as planned. I suppose we all want as long as possible on our little planet we call home. Good luck whichever way you decide.

Hi Ian thank you for your prompt reply re your scan details - very helpful indeed. I seems my husband's PSMA scan had different tracer and results may be good but we are worried about his rising PSA. He is having another PSA test next week at GP and not at hospital (trying a different lab) so we wait and see. He had MRI before his PSMA scan but not sure what tracer they used for MRI - result showing residue in prostate bed only. But Conclusion of his INMP Ga-PSMA WBDY scan report: There is no evidence of gallium PSMA avid residual disease seen on this study. My husband is waiting for PSA to reach 5 and then will take his Hormone Therapy ( he cannot be treated with RT in same area again) - he had RT in 2011.  We are confused and seeing his onco-urologist on 21st April. Hope your salvage RT going well - sorry to hear about your rectum water leak. Post operation in October 2016 my husband had similar problems on and off because he had salvage surgery (very rare treatment after RT) therefore, his prostate was stuck to his rectum. Thank God the surgeon did not damage his rectum -  meaning tried his best not to put in colostomy bag which was at a high risk when operating.  I gave my husband pasta, rice,  etc to help with his bowel movements and it worked. I wish you a successful treatment. Best wishes, Hafez.  

Thanks for the update Hafez, it looks like the PET scan your husband had is using a tracer which has better sensitivity than the F-18 Choline scan I had. It is good to see more radio-tracers being developed to help with diagnosing and staging prostate cancer as many of the existing tracers do not work with it.  My big worry is that the PET scan hasn't detected any micro-metastasis which my oncologist is pretty sure is there. He described the scan as possibly giving me a false negative which isn't very reassuring. 

I will just have to keep hoping that my recurrence is local and the combination of HT and RT will see it off.

Thanks also for the dietary advice, much appreciated.

Best wishes to you and your husband.

Ian

Thanks for the reply and information. I agree we make our choices and have to accept the consequences as I did in  2015 with the surgery. I suppose like you were at the time I am hoping for a cure rather than management but who knows how that will work out. Like you I have been taking vitamin D3 (200 micro-grams, drinking green tea and pomegranate juice, peeling apples to avoid the pesticides etc.). This coincided with my PSA doubling rate moderating from 1 month to 2 months but who knows if all that had any effect. It might have happened anyway.

I have stopped the above for now as I have read that taking antioxidants etc. can reduce the effectiveness of RT as it targets the more active cancer cells more and antioxidants help with the repair process.

Wishing you all the very best, Ian.

I thought I would put an update out now I have finished radiotherapy so here goes...

I finished the last of my 20 salvage radiotherapy sessions last Wednesday 26th April with 55 Grays bring targeted at the Prostate bed and the seminal vesicle remnant with active cancer. I have coped surprisingly well so far but feel pretty tired and am having bowel issues in terms of urgency. I am using Fybogel to calm this aspect down. I find I need to go to the loo multiple times before I begin to settle down. I am managing to go out but am trying to time it so that I am not caught out. My next PROSTAP 3 injection is on 18th May and I will continue on this for two years post radiotherapy I believe.
I am trying to visualise the cancer has gone and hope that in two years time my PSA will stay down after HT stops. 
My body has been hammered with laparoscopic radical prostatectomy, HT and now radiotherapy in a period of about 21 months. I am trying to remain positive and to that end have managed to get travel insurance and have booked flights to Canada in July to see our eldest son who is working in Calgary for a few months. Something to really look forward to which is really important for all of us in our situation. You are all amazing people and this site is so useful. I would find life much more difficult without it as well as my family and friends too of course. Best wishes, Ian.

Hi Ian

Good to hear you've finished your RT and that you coped well with it, but even better to hear that you've already made plans to go to Canada. I went years ago, not to Calgary but around Ontario and Québec and I thought it was fantastic.

I used the equivalent of Fybogel during and just after my RT but I also found I needed Imodium for the opposite from time to time and the need for that went on for ages. If you're going on a long flight you might want to consider carrying some.

All the best to you.

Jim

Thanks Jim, I wasn't sure I would get travel insurance never mind at what I feel was a reasonable price so my wife and I are really looking forward to our Canada trip. The flight is around 9 hours so I appreciate your advice to take something like Imodium due to the bowel side  effects from radiotherapy. It's great to have something to look forward to but this disease is kind of present on your mind a lot to say the least. I'm attending a course at Maggie's to try and help me deal with all that has happened in the last two years. In 21 months I've had a radical prostatectomy, HT and now RT. I really appreciate the chance to talk these things through on this forum and I am also aware that many have gone through worse things than I have and continue to do so.  

I hope all is as well as it can be with you.

Best wishes, Ian.

Bloody 'ell Ian, you're not kiddin', people say to not let cancer take over. They should try it, eh? It certainly is present on my mind a lot but that's not to say it stops me from getting on with life, (in fact I don't seem to stop these days) it's just that it never really goes away. 

We all deal with what's happened to us in our own ways and from what I've heard a Maggie's course should be a help. There's no Maggie's close to me so I'm only going by what others have told me, although I've been to similar things. Like you cancer has really impacted on me with all the treatments that come with it. When I look back over all that's happened to me in the last 3 and a half years I find it amazing that it's all happened to me! Doesn't that sort of stuff only happen to other people? 

Take care

Jim

Hey Ian I have no words but I wish you all the best in your treatment

Hi Jim, The Maggie's I go to is 16 miles away but the traffic means it can take up to an hour to get there. It's on the same site I had the RT. The course is run by a psychologist and a support worker. I attend the second of six sessions tomorrow. The first session was last Friday and was excellent. I am sure it will be really helpful. Like you I maintain a very active life not wanting to let what has happened to me to get in the way. Some of this is denial and some sheer bloody mindedness. I certainly am determined to live life to the full while I can. I am tired after the RT but still doing as much as I can. I find I am going over all the decisions and treatment I have had to date and over analysing what ifs and buts. You are so right that the impact of this disease has huge effects on us physically and emotionally and that all of this is appears to be what happens to other people. I hope this course helps me to learn to live with whet has happened to me and to avoid the deeper negative thoughts that will only bring me down and serve no useful purpose. Carpe Diem!

Best wishes to all. Ian.