It was all going so well....

Hi Willow,

I realise this must have come as quite a shock for you both…there seems to be quite a few posts on here ATM where men are requiring SRT. All I can suggest is that you try and console yourselves in that at least you have a Plan B. And if SRT IS required, it’s not bad at all and hopefully your OH will only require a short time on HT and may not even HAVE many side effects.

This is a rollercoaster journey we are all on with so many ups and downs. Trying to stay positive is easier said than done, but I find being good to myself and family, having lots of ‘treats’ and keeping busy and active really helps me.

Good luck to both of you.

Derek

Oncos have such wildly different approaches and presumably each feels that their way works. John was different to Willow's OH in a couple of ways - first, his PSA didn't rise so soon after the op (it took 2 years), second - he had hormone tablets rather than injections and third - the original plan was for 3 months before RT and one year after. But yes, you are correct - he stopped the bicalutimide 3 months after the RT rather than do the full 12

Lots of research these days to suggest that 18 months HT is just as effective as 2 or 3 years but there may be a very good reason why Willow's onco is saying 2 years ... for example, the 18 / 24 months is usually referring to how long after the RT. An onco might say 2 years meaning "3 months before, and a bit more than 18 months after"  

Edited by member 17 Apr 2024 at 13:56  | Reason: Not specified

Mine was upgraded post op from T2c to T3a and Gleason up from 8 (4+4) to 9 (4+5). They said the Gleason score may have been raised as I'd been on HT for a few weeks prior to the op. 

On one of my scans they'd found nodules in my lungs but no-one seems bothered about them. I've done a bit of my own research and it's seems normal to have nodules there. Who knows. 🫤

I sincerely wish you and your husband well and hope they kill the beast.

For people with a detectable PSA after surgery the assumption is that there are some remaining cancer cells in the prostate bed i.e. just next to where the prostate was. Hitting this area with RT may kill them and hence cure the patient.

If scans show cancer cells beyond the prostate bed i.e. hip bones, pelvic lymph nodes or beyond. The assumption is that the cancer has spread and may be in many other places but be too small to show on the scans. This would be advanced cancer and could only be cured if every cancer cell was destroyed, including ones which are too small to show on scans, this is generally considered impossible.

As of late some oncologists are treating the visible hotspots with RT hoping there are no other hidden hotspots. Google oligometastic cancer to see more. The NHS seems to assume that once there are more than five hotspots it is not worth attempting treating them. There may be other reasons an oncologist thinks RT will not get all the cancer. If RT is ruled out then HT is the only option left. 

I have no idea as to whether a different oncologist would advocate RT for your husband. Some other poster on here may be able to read your profile and spot why your husband is unlikely to be a good candidate for RT. It may be that a second opinion is worth seeking, I don't know how you would pursue that or if it would be worthwhile.

Edited by member 08 Apr 2024 at 16:53  | Reason: Not specified

Willow,hope all goes well with the appointment, is this his first post op appointment or reaction to the 0.1 blood test. Is that a definite 0.1 or a less than<0.1. I did have some fluctuating PSA results. I was frequently told my PSA could level off at 0.1 

I had poor histology but my post op PSA was 0.03 and it was three years before salvage RT happened. SRT did half the job and in the last two years I have had two lymph nodes tumors treated on separate occasions.

Nearly ten years on from surgery and still here and still managed to dodge long term HT.

Thanks Chris 

Willow, okay thanks, with my PSA rising slowly we are in different situations.

I had the "very educated guess " salvage RT to the prostate bed seven years ago. With the advances in PSMA scans I was surprised when an oncology nurse speaker at a support group meeting said they still use the educated guess approach. 

Our hospital will not PSMA scan below 0.3.

Thanks Chris 

Thank you for the update. I was wondering how you'd got on.  Is that 30 radition treatments from Mon - Fri for 6 weeks?

That's a long sentence of HT for salvage treatment

Hi Willow,

Sorry that this has happened but at least a treatment plan is in place and I assume when you say treatment has started you mean HT and he will start RT soon?

I think he will be fine with RT although maybe find 6 weeks a bit tiring. As for the HT hopefully he’ll be lucky and not have too bad side effects. If there’s one bit of advice I would give him it’s to keep exercising, go the gym if you have one,or if you don’t like that sort of thing buy some resistance bands….it’s amazing what exercise you can do with these, and it’s important to try and stop your muscle loss. If you know a good physio go and see them and they will advise on what exercises would be good for you. Try and keep these going even during RT, that’s when my troubles started after I eased off during just 4 weeks of RT.

Wish him good luck from me, and indeed to you as well.

Derek