Dad diagnosed - looking for some guidance

Hello,

My husband was diagnosed earlier this year with similar numbers. PSA 8.3 Gleason 4+3 but was T3a. He had a bone scan and they said it had spread to his pelvic bone, we got a second opinion and PSMA pet scan which revealed this wasn’t the case. It had spread to one lymph node though….maybe two.

He has started on HT already, and is now booked to have RARP (robotic assisted radical prostatectomy), but is very likely to also need RT when recovered from op. He is being treated with curable intent so we are hoping for the best. We’ve made lots of lifestyle & diet changes too so we can help ourselves as much as possible.

It must be so difficult if he won’t let you go with him to any appointments. With it being a new diagnosis, hopefully in time that will change. 

Best of luck to your dad and try not to worry too much. (Easier said than done I know…and we were all there worrying just as much at one point…and still have some of those days) As many people will tell you it isn’t a death sentence and there’s so much that can be done. 

He’s 60

So sorry to read this! It’s such a difficult time getting the diagnosis and then all the waiting. Hopefully they will both have a plan in place soon and things will seem a little better. 
Fingers crossed whatever was seen on your dads rib is nothing. As I told you before my OH got a positive result on pelvis from the bone scan but that changed with a second opinion and PSMA pet scan. 
Take care 

Hope Dad soon gets a determination

One more update… MDT was delayed until today and Urology nurse called this morning. The spot on the rib was judged to be nothing, however the PET CT did flag another mark on his spine. We now have to await a date for an(other) MRI to look at what this is…..!

In the meantime it seems they want to meet with my dad to discuss treatment options, which seems slightly counter intuitive given the nature of this other spot has not been properly established?

Update from appointment today (unfortunately i am receiving this second hand from my dad)… confirmation that a solitary spot was shown on my dad’s spine (rib confirmed to be nothing) from the PSMA PET CT.

They do not want to commence hormone therapy ahead of doing another MRI on the spine. I can only assume this is to confirm the nature of the lesion, but from everything I have read I am fearing the worst scenario. Why would they not just get hormone therapy going right away?? 

Feel completely lost. Assuming it is just one metastasis I am hopeful that it is caught so early, that the prognosis is not too bad and treatment will keep it at bay for a while. Now to wait for another scan.

Thanks again,

Sam

Thank you Gareth. That’s really helpful insight. Apparently the MDT were a bit perplexed by his results so it sounds like the MRI will just give them the confirmation either way.

He hated the MRI first time so sure this won’t be any easier!! 

will report back when we have (hopefully) final diagnosis and treatment plan set….. thanks all,

Sam

Thank you all for helpful responses, it’s really comforting to have this forum! Will keep you updated, as things progress 

Thanks Lyn - current position is definitely preparing for the worst, but hoping (praying) for the best.

Hoping for confirmation of date for MRI today, MDT next Friday and then results following week. 

update - he was discussed at the MDT on Friday and has been notified that he has a phone appointment Monday morning. First time we’ve had phone appointment and not face to face… obviously don’t want to read too much into it but glad the waiting is almost finally over and we will know one way or another what his treatment pathway is.

In other news, my mum (who was diagnosed after him with breast cancer), is now three weeks post surgery and recovering really well. Keeping positive!

will update on Monday. Good weekends all, 

Sorry to read this news. So much that can still be done though. I watched a video that someone posted on here a while ago with regards to Oligo metastasis, it was an American doctor (obviously can’t mention names) speaking at a prostate cancer conference and I found it really interesting. 

Hope your mum is still recovering well too x

Yes I can understand that, the waiting around not knowing really is the worst part. I can’t even imagine what you’ve all been going through with both your parents diagnosis…really good to know they are strong though and getting through it all. Fingers crossed your mum won’t need further treatment.

And thank you, he’s doing really well. Just a step at a time….but feeling more positive x

Have you checked whether he should go to the GP practice for his Zoladex injection or whether the first one is being done at the hospital? Best to book the appointment now as the GP or hospital clinic will need some warning to order the Zoladex and (if the GP practice) to ensure that the appointment is with a nurse who knows how to use Zoladex depots.

Hi all,

Back again with another question. My dad has been doing some research and is looking at potentially referring privately to the Marsden for the oncologist appointment and treatment plan thereafter. As it stands, all his diagnostics have been done through NHS (save PSMA which we did privately to expedite). 

The reason for going private is that he wants to be treated at the Marsden (we have had a couple of family members go there and it’s been excellent), and his private work insurance will cover him to do this. The negatives from my perspective are that we aren’t really close (approx 1.5 hours), so logistically for treatment it won’t be the easiest, and I have read several places that private for cancer isn’t really the be end and end all. 

I’d be really grateful for anyones shared experience, I completely understand why he wants to go to Marsden (+ our hospital hasn’t been fantastic if I’m honest), but is there anything we should be aware of? Can he actually be referred to the Marsden as NHS? Or could he at some point switch back to NHS whilst at the Marsden?

Thanks as ever,

Sam

Hi Sam,

My husband got referred to RM on NHS and we live in Manchester. It was a urology referral though as he was going to have the op. As it turned out the waiting times were longer than we expected so we ended up paying private with the same surgeon but at LBH. We stayed in an apartment in London for 3 weeks around surgery (which was great for us) but I realise this wouldn’t be a good option for everyone and logistics have to be considered before making such a big decision. There is a lot to be said about being happy with your hospital and consultant though, it made such a difference to us. So as Lyn said you could still get the second opinion without committing to treatment there.

We initially paid for a private second opinion at the RM as our local hospital MDT confirmed bone met in his pelvis. All his scans were sent to RM MDT and they disagreed with original diagnosis…he had the G68 PSMA pet scan at this point which sided with the RM MDT. (Thankfully)

We had already prepared ourselves for the advanced diagnosis but we still wanted to go down the radical treatment path and then deal with the bone met later. I had received information about the Atlanta trial where one of the arms was what we wanted but of course you can’t choose. I did often feel like I was clutching at straws but I was constantly looking for a route with curable intent as I had the belief that anything was possible.

Best of luck with whatever decision he makes.

Elaine

thanks so much, all makes a lot of sense. Plan of action is now to get request second opinion with RM tomorrow and get that moving. I am also looking at contacting the Atlanta trial to get a better idea of it.

Will keep you updated, thanks again 

Sam

Yes a referral is needed but personally I found it very useful to have made the contact with the trial team prior to discussing with my local consultant. They were very helpful and even telephoned to discuss the options with me.

Hi all,

We had first Onco appointment today during which they set out the treatment plan for dad. Really liked the oncologist and spent an hour speaking through treatment options. Current plan is as follows -

- Zoladex starts tomorrow 

- Apalutamide starts in three weeks 

- IMRT to prostate, 20 fractions (55gy). Planned for three months time

- SABR to spine, 3 fractions. Planned for 5-6 months time

We had a really good discussion around Dox vs Apal upfront, and relative benefits of each. All in all came away from appointment feeling happy with plan. The only slight spanner is they’re still not 100% convinced on the spine met so they want to do some more blood tests to rule out other possibilities (they said 90% prostate but still not definite…).

Grateful for everyone’s views on treatment plan!!

Thanks and happy valentines!

Edited by member 14 Feb 2022 at 21:30  | Reason: Not specified

All,

Quick update (this is also a really nice diary to look back at what’s happened!). Second opinion today at the RM, the consultant was brilliant and said they’re not convinced that the spot on the spine is a met despite PSMA PET CT and MRI correlate… He said hes seen two cases like this before and one was a met and one wasn’t, they want to do a fusion MRI scan to confirm. Also don’t think it’s Myleoma… 

Dad was due to start Aplutamide on Monday but consultant wants to stop that until we know.

Trying not to get hopes up but some really unexpected news. Will update as we go as always.

thanks 

Hi all,

Had results today from follow up MRI. Consultant at the RM really does not think that lesion on spine is met despite the positive psma pet ct, so is recommending downgrade to stage 2 and proceeding with curative dose of radiotherapy of surgery.

Honestly I’m in shock and just feel numb, would have thought would be jumping for joy but don’t seem to really be able to process it. Maybe it will come in the days to come but at the moment it just doesn’t seem real.

I just want to say a massive thank you to all those on the forum, we would not have got a second opinion if not for reading the posts here.

All the best