Newly Diagnosed. Upset, angry and terrified

Hi John

That's great news! We found that once we knew 'where we were going', we felt much better. There were and still are anxieties. I was frightened of the affects of treatment and now I worry about recurrence. But - we don't let these interrupt our enjoyment of life! The treatment was not as bad as we were warned it might be and the recurrence is beyond our control and we will deal with it if wand when we have to. In the meantime we enjoy life together while we can

I hope you can move to this same space and start to feel mentally in a much better place.

Thank you very much. Yes, feeling more settled and focussed. This experience has made me realise how precious each day is and appreciate family and people more x

I’m so glad that our little gang have been of assistance to you in asking the right questions during your consultation with the medical experts. You appear to be in a much better place than 19 days ago  when you first posted on here! (The title of the thread says it all) .   I would ask that you provide updates on this thread as you go through your treatment pathway, so that others can learn from your experiences.     AW

Great news! I hope all goes well for you. Remember there will be ups and downs along the way but there is always plenty of support around through your medical team and groups such as this. 
Take care and best wishes 

A

Hi everyone,

I thought I'd provide an update after 10 or so months. Having read through my thread from the start, I cannot believe how bad I was feeling. I didn't recognise myself. I do wear my heart on my sleeve. Not a bad thing I guess.

I have been updating my Bio mainly to help anyone that it may help. In a nutshell, I started HT on 13/8/24. Had by HDR BrachyBoost on 15/11/24 and 15 sessions of EBRT that finished on 8/1/25. Here are my positives and negatives or let's say challenges to put a more positive light on it.

Positives

• Had 3 PSA results; 15/11/24; 0.27, after 12 weeks on HT only down from 5.3. Then 2 results of 0.01 on 1/2/25 and 29/5/25. Obviously great news.
• My mental health is completely better. I have the odd wobble and down day or two (who doesn't). But since diagnosis, much, much better as all of you had predicted. I just wished I'd believed it at the time.
• I never actually took any medication for anxiety or depression because, in truth, I wasn't ill with these conditions so to speak. I was just suffering from shock and disbelief hence the symptoms but I got on top of them which took, I'm sorry to say, about 3 months, so 3 months of hell to be honest. Not nice!

Challenges

• Hormone Therapy. I have not tolerated HT brilliantly. Hot sweats are manageable (no problem) but muscle and bone paid hideous despite pain relief and exercise (I've tried everything). I am also convinced the zero testosterone I have is playing havoc on my bowel movements (motility which HT can aggravate I've read). I've been on Decapeptyl since 28/8/24. Had my 4th and last injection on 29/5/25. I say my 4th, my oncologist wanted me on it for 18 months which a second opinion has confirmed, but I have made a decision to come off after 12 months. Apparently, it only adds about 1-2% of reduced recurrence chances (BCR and NED). I had a HDR BrachyBoost procedure. When this is researched particularly outside the UK, there is more and more opinion to be found to warrant a reduced HT duration leading to reduced toxicity. However, the NHS and NICE guidelines quite rightly use the only information resources available to them which are tried and trusted trials but in my opinion, dated. Modern thinking appears to be steering those who received BrachyBoost with EBRT and HT towards a reduced HT period. My decision may prove to be the wrong one but quite frankly, whilst I am honestly pleased with the pathway I chose, I have had enough. I think 12 months is more than enough.
• Proctitis! Unfortunately, I have developed Proctitis. When I look back I believe I started the symptoms 3/4 weeks after EBRT. Mucus discharge but I managed to reduce this by significantly reducing fibre. There's no secret that side effects are more likely in the short term following EBRT but, sadly, things have got worse especially these last 6 or so weeks. I now feel I have to go to the toilet all time (Tenesmus) and, recently, had to visit the Emergency Oncology Department, due to severe lower abdominal pain, discomfort, mucus discharge (despite no fibre) and visits to the loo every 1-2 hours. Was prescribed Proctosedyl Suppositories which did help but I tried to resume a normal diet last Friday with a G+T to feel a little more normal only to suffer a massive setback in symptoms i.e. food I eat basically run straight through me. Obviously, the alcohol aggravated the inflammatory aspect of the Proctitis. My fault but nasty. My oncologist has ordered a flexi sigmoidoscopy which I have on 3rd July to assess extent of inflammation and hopefully a treatment plan.

The fact I'm on a curative pathway should and is, in itself, fantastic but the 2 side effects (HT and Proctitis), particularly the Proctitis, is causing a severe reduction in quality of life. I can see light at the end of the tunnel with regards to HT as, come 31st August, the 4th injection effects start to wane. Hopefully some testosterone will return.

It would be helpful to hear any feedback on this, from anyone who has, is or knows of anyone who has or is suffering from Proctitis and anything that can be done to alleviate.

My warmest wishes to all x

Hi JPMJIG - well, we usually converse on WhatsApp, but I thought that it would be better to express my sympathy on here: proctitus is a hard pill to swallow after the radical treatment you’ve been through.  Of course, all these treatments (brachytherapy, radiotherapy and hormone therapy) are still working their magic (18 months after treatment is the nadir, when the treatment effects wear off) so the proctitus should start to settle down as well, as time progresses. I understand that you have symptomatic treatments in place and a flexible probe check just to be sure that there’s not a sinister development causing your current symptoms (very unlikely in your timeframe since treatment).  Hang on in there John - and laugh in the face of the devil - it’s going to be hard to do that I know, but grit your teeth and face that imposter down!    AW

Hello John (JPMJIG) 

Thank you for such an honest, no holes barred account of your journey so far. I am sure this will help people to realise it's a marathon and not a sprint and there are hurdles along the way - and we are all different.

I am aware of Community member BoroG who has suffered Proctitis and I am sure is on a research project at Newcastle Hospital looking into this. I hope he doesn't mind and I have "tagged" him into this post - he may just be able to help,

Kind Regards - Brian.

Thanks Al

Thanks Brian

Hi John, soon as the word cancer comes up it's really scared, I'm 13 years your senior but very healthy and looked after myself and was still employed full time, so was a massive shock when first confronted with the diagnosis, soon come to terms with it all once I knew what the plans was facing me moving forward.  I opted for hormone tablets then 2 injections followed with 20 sessions Radiotherapy.  Choose this route due less server side effects, won't say there hasn't been some, but have copped with them and now we'll on the mend , my PSA is barely detectable,  gone from 21 at start now 0.01, no more injections needed just PSA check every 6 months over 3 years followed with 1 test for 2 years

 I had retired in March but I am now starting back part-time this Thursday,  2 days week

 So there is light at end of the tunnel   just stay positive and take each day as it comes  they know what they are doing. good luck with what ever path you choose