Possible biochemical recurrence.

So the fun and games continue.

I have been experiencing back pain at night, so had a pelvis and lower back MRI. The GP has called this afternoon sounding quite concerned.

The MRI says (amongst wear and tear type stuff) "Diffuse hyperintensity of the bone compartments sparing part of the L5 and the sacral bones are suspicious for diffuse metastatic infiltration of the spine".

Now, my PSA has fallen from 0.42 to 0.27

My last PSMA PET scan showed no sign of bone mets.

Is this likely to be something unconnected to PCa?

My father-in-law's PSA fell from 16 to 2.4 to 1.2 (without treatment) so no one realised it had spread to his kidneys and liver.

Piers, I am off to see a physiotherapist this morning for an assessment on my knee. I already have osteoarthritis of the hip and probably in the hands.

I am reasonably mobile but the joints do ache. The knee pain gets far worse when in bed and night , apparently there is a link between night pain and hormones.

My last PSMA pet scan a few weeks ago included the knees but nothing was detected,we know that doesn't mean there is nothing there. It did detect another pelvic lymph node tumor which is going to have SABR treatment.

Hope you get a solution soon.

Thanks Chris 

It may be that's what I get.

If I am honest, I am not entirely comfortable with the comms from the onco. He is very much of the "I know best" school of medicine and is reluctant to communicate outside of consultations. If I ask him a question in a consultation he is rather "ugh, you won't understand the answer. But in simple terms..."

When I was dealing with the surgeon, he was superb. I had his mobile number and email address. I never abused them, but if I had an occasional question I asked it. He responded in minutes usually, with a straightforward and practical answer.

I think I know the radiographer at the place I am going (such is the joy of an extended period in the cancer care system!) and he is a decent chap. I will see if I can agree beforehand what we are doing and why.

By way of an update.

My PSA is still not <0.1 but is falling.

Pre-EBRT my erectile function without "assistance" was eventually sometimes  around 80% of pre-RP. Immediately post-salvage EBRT there was no change. In the last month or so, however, there has been a bit of a drop off. I am 7-8 months post-EBRT and unassisted I struggle for 60-70%. I am into Viagra / band territory.

The EBRT team said that what I had two weeks after the course is what I would have long-term. However, I have read elsewhere that there can be a decline up to two years afterwards. Can anyone advise on this please?

In other news, I am trying shockwave therapy. This is supposed to promote blood flow, by encouraging the body to grow new blood vessels. I am half way through the course, but it can take several months before the full effect is evident. The physio says that I should go from 15/25 to 20 or 21/25, where 25 is a perfect erection. I will update things go along, in case it is of interest to anyone.

I've never heard this.

You want to be doing the maximum to exercise the penis. Try to get on the penile rehab dose of Tadalafil, which is 2 x 20mg/week. Hopefully that should enable you to get good erections on those two days and quite likely the following two or more days too Make sure you do get regular erections. It doesn't sound like you need a pump at the moment, and if you can get good erections (with Tadalafil if necessary), that's better than a pump. The Tadalafil also improves blood flow in the area when you don't have an erection, and the 2 x 20mg/week dose will give continuous dosing. (The 5mg daily low dose will also give continuous dosing, but you won't get the extra couple of boosts which may help to achieve better quality erections, although you might find you can do just as well with the 5mg daily low dose if offered that instead, and you can always save up a few day's worth to get a higher boost.)

Piers, I take it all your tests are at the same lab. I had my bloods taken at , hospital,a regional health centre and occasionally at my doctor's, all three locations use the same hospital lab. I do now have all my bloods taken at the area health centre at roughly the same time of day.

Thanks Chris