Possible biochemical recurrence.

I am often referred to as an exception by members of the forum.

Diagnosed at 46 with T3a and Gleason 7.  PSA around 7.

Upgraded post radical prostatectomy to T3b and Gleason 9.  Seminal visicle involvement, positive margins, perineural spread.  Non nerve sparing.

Post operative PSA 0.014.  After 1 year, it had progressively risen to 0.023.  Oncogist recommended radiotherapy to the prostate bed.  She planned on a narrow field.  I asked for as wide a field as possible.  She was reluctant.  I also asked for ADT and she was resistant to say the least.

I paid for a PSMA scan.  It showed very small amounts of cancer in two nodes outside the narrow field She proposed but within the limits of the wider field she could treat.  She also agreed to bicalurimide.

I took one tablet per day for three months before 33 days of SRT.  Was on bicalutimide for 18 months in total.

Fatigue was, quite frankly, a challenge.  I put on about 8kg.  My body hair fell out, not ny head hair.  I also took tamoxifen to stop breast growth.

SRT finished 3 years ago, ADT 2 years ago.  My PSA since SRT has been stuck at <0.006.  The lowest they measure at my hospital.  My oncologist said that she would have expected a G9 to have reappeared by now.  She said it could still be there, but if it is it isn't behaving as aggressively as she expected.

Any regrets?  No.  I'm alive.  I'm well.  My daughter graduates next year as a doctor, my son in two years with a business degree.  He'll be the next Lord Sugar or the next Del Boy.  I'll get to both graduations.  I think I'll reach retirement and beyond.  Plenty of reason to think you'll still be running your business for many years.

Remember  oncogists know your case best.  Your PSA is only one factor in deciding when to go for salvage treatment.  But I personally would insist on at least bicalurimide.

I was lucky that my psma scan worked at 0.023.  It may have saved my life.

Finally, don't be afraid to challenge the medics.  Armed with what I'd learned here I am known as the most informed patient they've ever had.  This forum and the people on it are a force for good and a source of patient empowerment.  To all those who helped me to get to this point, alongside the pcuk specialist nurses  a huge thank you.

John had salvage RT with HT - he had no problems during the RT except needing a short afternoon nap some days towards the end - but he was working full time and continued to play rugby and go to the gym as normal. He has had no medium or long term side effects apart from hot flushes sometimes.

That was 10 years ago; his PSA remains at or around 0.1 and most of the time, prostate cancer is just a thing that happened to him in the past. He was 50 at diagnosis.

The thing about your situation is that the T3 makes recurrence in the prostate bed more likely than distant mets, and your PSA (starting below 0.1 post-op and then beginning to increase 1 - 2 years post op) is behaving in a classic way for local recurrence. CJ's PSA was high immediately post-op which is indicative of mets. 

Edited by member 08 Aug 2021 at 18:43  | Reason: Not specified

There is no point in regretting your decision. Whatever you decided it was right for you at the time. You couldn't have predicted the future. The surgeons disagree because they don't know either, and how could they, this is an unpredictable disease.

People on this site just happened to draw the short straw, we got cancer. Some treatment decisions would best be made by the flip of a coin, as at least then no one can regret their choice.

Even though I say we drew the short straw, there were a lot shorter straws to be drawn, if you were born in the third world, you would have probably been dead long before you got the chance to acquire prostate cancer. 

I may write a strongly worded letter to the advertising standards people! It seems to me that medics aren't always entirely honest about pain, but am learning the code:

Painless = this will sting a bit.

Virtually painless = this will really smart.

Mild discomfort = this will hurt. A lot.

Discomfort = brace yourself, you won't like this, and probably won't forget in a hurry what I am about to do.

Uncomfortable = the most pain you have ever experienced.

Minor pain = you will be pleading for death.

BAUS and the European Uro-oncology association stats indicate that SRT is most effective if delivered following 3-6 months of HT first to weaken the cancer and then 12-15 months of further HT (18 months in total). More recent data (Stampede trial maybe?) was that the more common 3 years of HT provided no benefit over just 18 months. My understanding is that it is just individual oncologists who may decide on a case by case basis that AHT is unnecessary? 

A few years ago, MoJ guidance on rape cases had to be changed when it was realised that detectable PSA in swabs was not necessarily reliable forensic evidence of penetration of a body part by a male.

PSAM Pet scan is best way of telling. You had one before the op and it was clear, so to the best of our knowledge you have no distant mets. They may do another one of these, they may need to wait until PSA has increased quite a lot so they know the mets are big enough to show on the scan. Different tracer chemicals can be used, Choline etc. Someone else may know the best tracer, and what level the psa needs to reach before the scan is reliable. 

If there are no mets very likely to be effective. If there are distant mets which were too small to show up on any scan you are back at square one. Do not pass go, do not collect £200.

This is your final role of the dice, throw everything at it including ADT, maybe stop after six months if you find it unbearable. 

That area of tissue and adjacent regions will have received lifetime limited radiation dose, they won't try again. I don't think any other targeted treatment is possible. 

In the last few years it does seem that distant mets can be targeted. I think the technique used is SBRT. Once you have cancer cells in your body which have adapted to spread I think you will have constant recurrence, but I have no evidence for this. 

Yes at least 3 years. Chris J has managed about 5 years with no treatment, and has only just started ADT now, we wish him many more years. So if you accept the treatment and the reduced quality of life you have a number of years ahead of you, we have a member at 15 years now (I'd say that was exceptional) I would be thinking at least five years. If the mets are in organs rather than bones then things are much worse. 

Is there any data on the success or failure of salvage RT, there does seem to be a number of us who have another recurrence after  SRT.

Thanks Chris

Peter

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

What happens if I do nothing?

I have not heard any cancer doctor refer to prostate cancer being "cured". Whatever the treatment no one can ever be sure there are not a few remaining live cancer cells which will start to grow given enough time. So they won't promise that.

But if you focus on the optimistic, if you have the recommended treatment you are 85% likely to have 5 years without a sign of any problem. That's a lot better than the situation you are in now.

And you have to put the estimates in context. OK 40% of patients had some sort of recurrence after 15 years - but by definition that information comes from treatments done more than 15 years ago. Things will have got better since then! For example the machine on which I had my salvage radiotherapy recently was an amazing new model which started by doing a low resolution CT scan, so it could adjust the settings to optimise accurate delivery to my prostate bed as it was in the machine that day (fine tuning for my exact position, plus small variations in bladder and rectum positions) - at the very least that should minimise side effects compared with older technology, and should ensure no part of the target gets accidentally under-irradiated.

Piers, are you referring to machines with image guidance (ig) capabilities.

Thanks Chris 

Best wishes,

Chris

Something of an update here.

I have still been feeling quite low since the radiotherapy, both mentally and physically flat. However yesterday for the first time I started to feel a bit more upbeat. That's almost exactly two months after the treatment ended.

The hemorrhoids, which were the main side effect, have gone. However, I have symptoms consistent with diverticulitis - a feeling of pressure or mild pain in my abdomen lower left. It eases with a bowel movement. At present it is not too troublesome and I would rather have that than the problems that others experience. I never had this prior to radiotherapy and remember the day it started, in the first week of treatment.

I had my first PSA today since cessation of treatment and it has dropped 35% from 0.42 to 0.27.

Since I posted this, the onco has called me. After work on Friday, which was good of him.

He said "I don't know what the scan shows, but it is not PCa. It is unheard of for PSA to be falling, with the numbers you have, and for there to be visible bone mets".

He also said the pain I am getting is not consistent with cancer, because it is intermittent and only at night.

I must say, this roller coaster ride is becoming a bit wearing. After my last PSA and consultation I was planning what to do with the rest of a life that probably was not going to be shortened by prostate cancer. I had sold of a lot of my business, because I didn't want to have to do it when I became ill. I was making plans for what to do next.

Then... "BANG! you've got bone mets in your spine". Then an hour later "Oh no you haven't".

I think I have coped well throughout it all so far. I hope I don't suddenly have some sort of crisis later.

Edited by member 22 Apr 2023 at 11:13  | Reason: Not specified

Piers, it's frustrating.

If you look at my profile there is a list of my treatment and values. I never get a definite answer to why PSA results fluctuate.

I now just accept results for what there are. We have a plan if the next result is a rise. Fortunately still managing to dodge long term HT. I didn't have HT with SRT, did you?.

Fortunately things have progressed with scans and treatments for some of us. 

Hopefully it might just be a blip. 

Thanks Chris