Dad diagnosed - looking for some guidance - - Page 3Supporting someone with prostate cancer

User

Posted 06 Feb 2022 at 19:02

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

User

Posted 06 Feb 2022 at 19:29

Not much point contacting the trial directly - you need the oncologist or urologist to refer him. Atlantic website has a map of the trial sites.

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

User

Posted 07 Feb 2022 at 16:59

Originally Posted by: Online Community Member

Not much point contacting the trial directly - you need the oncologist or urologist to refer him.

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.

User

Posted 07 Feb 2022 at 17:40

Yes I contacted the trial directly. They emailed me all the information which was good to read. It wasn’t a trial that was available to us here in Manchester so would have had to get referred somewhere else if we had wanted to join.

User

Posted 14 Feb 2022 at 21:02

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 22:30 | Reason: Not specified

User

Posted 15 Feb 2022 at 14:16

Also forgot to say this was the first Onco appointment, we have second opinion with RM booked in three weeks time. Thanks a lot for all the support.

User

Posted 10 Mar 2022 at 17:32

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

User

Posted 10 Mar 2022 at 19:28

Sounds really positive. We were in exactly the same position where the RM didn’t think it was mets in my husband pelvis. I felt the same though that I didn’t want to over think or get excited just in case.
No matter what now atleast you know you’ve tried everything you can to get as much information about diagnosis and treatment.

Will keep everything crossed you get even more good news 🤞🏼

User

Posted 21 Mar 2022 at 19:19

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

User

Posted 01 Apr 2022 at 12:03

Met with urologist today from RM. We have decided to go down the surgery route as it will be the best way to clinically assess once and for all what the spine is (as PSA post op will give true picture on what’s going on).

Disadvantages are that given disease burden at prostate, it is not going to be fully nerve sparing (at least on right side), and urologist thinks there’s a 50% chance of recovering erectile function (got to admit I cringed a bit here and wanted to sink away into the floor), but nevertheless on balance thinks it’s the best route for dad. Overall - feedback was that he needs to lose 7-8kg ahead of surgery to reduce complications both during and after.

Surgery date is 16th May, still can’t believe we have landed here given where we were a month ago - what a real rollercoaster.

Quick update on mum, she’s recovered super well from surgery and 5 days radiotherapy booked in for two - three weeks time, all looking positive there. On a personal level she really struggled with return to work and her management have just not been supportive at all (asking her to take holiday instead of sick leave!) - so this week she took the tough decision after 21 years to throw it in! Big change for her but if the last 6 months have taught us anything, health and family comes above all else.

Keep safe everyone x

User

Posted 01 Apr 2022 at 13:00

Glad your dad's treatment is on its way feel sorry for your mum what a way to treat someone after 21years service 😬 hopefully she fares better than me after weeks of form filling told I was entitled to nothing it's about right probably should have joined the great settee brigade but nothing to thank any one for 👍 good luck to them both in the coming months with their treatment

User

Posted 01 Sep 2022 at 10:50

Hi all,

Realise it’s some time since I last posted an update so wanted to check in with all on progress.

Dad had his surgery in May and it went well, he recovered quickly from it (albeit struggled with the catheter!) and has been doing well since. He had his first PSA test in July and it came back undetectable. Still trying to get our heads round this given 6 months ago he was diagnosed as stage 4, and was told by the oncologist he had 5 or so ‘good’ years. I appreciate my dad’s case is quite unusual, but it goes to show (as I know others on this forum have), that getting a second opinion can really make all the difference. We never approached it expecting a change of outcome but more just to validate what the first oncologist had said

The Marsden said that they had seen about 5 cases like my dads before (a false positive on PET CT as a result of benign hemangioma), but expects as these scans become more common that rates of false positives will be more prevalent.

By no means feel like we are out of the woods yet but things are certainly looking more positive than where they were 6 months ago (for both mum and dad!)

thanks again for all your support, and if anyone wants more info on my dad’s case and who we saw for second opinions etc, then always happy to have a chat.

as an aside, I’ve felt a bit powerless over the last 6 months so signed up to the London Marathon in October… I couldn’t do it for PC UK as they had no spots left so running for Macmillan instead… wish me luck!!!!

User

Posted 01 Sep 2022 at 16:19

Hi Sam,

Amazing update. So pleased to hear that all is going so well.
I feel the same that it’s hard to believe how things felt 12 months ago compared to now after the second opinion. I too am reluctant to get too carried away as I know things could change at any point but enjoying life again for as long as possible.
Wishing continued good health to your dad and of course your mum, glad she is doing well also 👍

User

Posted 01 Sep 2022 at 16:47

Hi,

That's a good outcome, and a possibility to keep in mind.

There is a paper on another similar case: Vertebral Hemangioma Mimicking Bone Metastasis in 68Ga-PSMA Ligand PET/CT

User

Posted 02 Sep 2022 at 11:27

Great news for your dad ;-). Just to say also that they thought my cancer had spread to the right iliac bone in my hip as something showed up on a PSMA PET scan. However an MRI revealed this was unlikely to be cancer and probably a haemangioma.

Good luck re. the Marathon.

Zum

Originally Posted by: Online Community Member

Hi all,

Realise it’s some time since I last posted an update so wanted to check in with all on progress.

By no means feel like we are out of the woods yet but things are certainly looking more positive than where they were 6 months ago (for both mum and dad!)

thanks again for all your support, and if anyone wants more info on my dad’s case and who we saw for second opinions etc, then always happy to have a chat.

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Dad diagnosed - looking for some guidance

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