I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Inconclusive PSMA scan

Email this conversation Print this conversation

User

Posted 16 Sep 2022 at 16:57

Thanks Jellies. We seem to be treading a similar path. Your first PSA result must have been a shock after a good histology result. I do hope you get the break you deserve.

User

Posted 16 Sep 2022 at 17:17

Good luck with that Chris. If it is somewhere else there is a chance of RT on that area from what I read. I read of someone who had treatment on higher up lymph nodes after prostate RT. The oncologist said a risk in the past was damaging the intestines, improved RT focus nowadays can avoid that. Let's hope your current treatment catches it though.

User

Posted 17 Sep 2022 at 13:30

Best of luck with the treatment Chris

User

Posted 19 Sep 2022 at 09:11

Best of luck Chris with your treatment. Everything crossed for you x

User

Posted 19 Sep 2022 at 11:52

Originally Posted by: Online Community Member

I’ve been on 150 mg Bicalutamide for just over four weeks. So far the only apparent side effects are slight tiredness and indigestion but it is still probably early days for side effects.

You might want to ask about getting Tamoxifen too, to prevent the Bicalutamide causing breast gland growth and painfully sensitive nipples, which can happen if you're on it more than a month (usually at around 2-3 months).

User

Posted 19 Sep 2022 at 12:57

Thanks Andy. I was wondering about Tamoxifen. The Onco just said if you get tender breasts we will give you something for it. From what I have read it is more likely a when than an if. It would seem to make sense to be proactive about it rather than reactive. I'll contact my GP as they did the prescription for the Bical. Chris

User

Posted 19 Sep 2022 at 17:00

Chris I did an 11 month stint on 150mg Bicalutamide per day with very little issues at all. I was prescribed Tamoxifen once weekly from the offset and never had any breast issues nor tenderness at all. Good luck 🤞

User

Posted 19 Sep 2022 at 20:22

Our CCG (now called an ICB) does not permit tamoxifen or RT to the breast buds to prevent breast growth in men on HT. Another postcode lottery.

Edited by member 19 Sep 2022 at 20:23 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Sep 2022 at 10:41

Thanks for the heads up Lyn. I'll need to find out whether my post code is a winning ticket.

User

Posted 20 Sep 2022 at 10:59

20mg Tamoxifen tablets are generic and dirt cheap. Never heard of anyone being refused in last 4 years (except on medical grounds, typically if you're at risk of cardio issues or DVT), but most often you do need to ask for it.

The other tablet sizes are massively more expensive.

I was prescribed 20mg/day, but told to start with twice a week and adjust to symptoms. It's quite slow acting.

It is liver toxic for some people, and my liver wasn't happy with more that about 40mg/week. It is worth getting a liver function test done when you've been on it for 3-4 months.

User

Posted 21 Sep 2022 at 23:54

My hilar (chest) node biopsy was negative. Phew. So it looks like the PSMA scan was a false positive - of course the biopsy could have missed the spot but no point dwelling on that.

Net result is I came out of the med onco meeting with a prescription for Bical and Decapeptyl and good to read everyone's experiences with these drugs. Will be reviewed in a month to see if they add addional treatments. To be followed by pelvic RT - presumably in a few months.

Best all.

User

Posted 22 Sep 2022 at 12:59

Jellies, good news on the biopsy results. Hopefully everything is confined to the pelvic area. It's easy to get yourself tied in knots with the "what ifs" but best just to try to put your hilar out of your mind now.

So far, five weeks on Bical hasn't produced any significant side effects for me. I'm arranging to get a Tamoxifen prescription from my GP. I understand that whilst it's used to treat gynaecomastia in men, it's not actually licensed for it. However it's approved in the NICE guidelines for men on long term Bical (20 mg per week), so hopefully there shouldn't be any problem getting a prescription

User

Posted 22 Sep 2022 at 16:36

Thanks Chris,

I totally agree, take the positives and move on. For treatment I take Bical for 2 weeks, then the Decapeptyl injection, then Bical for another two weeks. After that I think I am done with the Bical as it is just to counteract testosterone flare. Good to know you had no serious side effects on it.

User

Posted 28 Oct 2022 at 22:53

Time for an update. My 33 sessions of SRT to the prostate bed are finally complete. The radiotherapy team have been brilliant which has made the process so much more bearable. It’s now the waiting game to see what happens (or doesn’t happen as the case may be). The side effects have been fairly varied. Bladder urgency started first but Solifenacin eased the symptoms. Bowel urgency followed and caused me a few accidents until I became better able to predict what was going to happen and when. Radiation Proctitis has been a pain in the arse but that has been improving with Proctosedyl suppositories. Fatigue/tiredness have been tolerable and so far not a single hot flush from the Bical. My main concern is my continence started to go rapidly down hill in the final week of RT. Just when I thought I had it cracked it I’m back to wearing pads during the day. I would love to hear other people’s experiences of this. Did you eventually get back to where you were before RT?

The other peculiarity is suddenly starting with Lymphoedema in my right leg. I did get a mild symptoms in my right leg post RP (34 lymph nodes removed) but has the RT acted as some sort of trigger? The RT team tell me that zapping just the prostate bed shouldn’t cause Lymphoedema. The symptoms are mild but it is limiting how far I can walk. I’m trying to get hold of my CNS to discuss it. In the meantime I’m going to have a go at some self-massage techniques to see if it helps. Again, would love to hear other people’s experiences.

User

Posted 28 Oct 2022 at 23:14

Chris, I had already been fitted with a suprapubic catheter before salvage RT so judging incontinence is difficult.

If you ever start passing lots of blood clots and debris get help from someone who understands severe radiation cystitis, stage 4 radiation cystitis it is rare, which means it is not always recognised.

My bowels were a bit iffy for quite a while but when they eventually settled down they were better than pre surgery.

Hope things start to improve, keep doing the PFEs.

Thanks Chris

User

Posted 29 Oct 2022 at 11:03

Hi Chris, I have found that my level of urine control deteriorated during SRT. I don’t wear a pad every day but do have the occasional accident. I find there are times I can hold a full bladder without a problem and then can suddenly leak at other times when my bladder is almost empty. I wear a pad when I’m golfing or going out. I saw a urologist who offered to fit an AUS but I decided to leave it for now. I also took solifenacin for a while which helped but when I read that this drug is linked with dementia I stopped taking it!
Sorry it’s such a long reply. All the best.

Ido4

User

Posted 29 Oct 2022 at 14:00

Thanks Ido4. Its a big decision having an AUS fitted. It's early days and I'm hoping the continence improves from two pads a day. The odd dribble I can live with.

Thanks for the heads up on the Solifenacin. I'm not going to stay on that any longer than I have to.

Chris

User

Posted 03 Nov 2022 at 07:47

I can’t offer any advice re incontinence, but sending you best wishes Chris and hope the continence improves and lymphodema. I suffer from lymphodema in my arm following radical surgery and rt. there should be a lymphodema service attached to,your local hospital and your GP should refer you for a lymphatic drainage massage and possibly a compression garment which will help keep the swelling down and ease the pain. It really is a pain, but hopefully you will get some relief. Keep us updated with your progress x

User

Posted 03 Nov 2022 at 08:59

Thanks for your kind words Jayney. I'm struggling to get hold of the clinical nurse specialist (not helped by being away in a bad phone signal area). Same with my GP. I can't believe how difficult it is just to get Tamoxifen prescribed for my sore nipples. However being away for a fews days is at least a tonic after the RT sessions. I'll have another try when I'm back. In the meantime I'm having a go at some self massage watching a YouTube demo video. I think it's helping. I'll keep you posted.

User

Posted 05 Nov 2022 at 00:13

Enjoy your time away Chris and your change of scenery and hope you get through to someone next week who can help. Keep the limb moving if you can. Self massage is great (even better when an expert shows you what to do rather than YouTube), but currently you don’t have any other options! I hope the pain subsides, I take ibuprofen when mine flares which helps with the inflammation. X

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.