Question advice please

TRJB 21 days ago

6 replies
122 subscribers
330 views

Hello all

I posted a few weeks ago but can't now find it. I was advised to create a profile, which I have. So all my details are there.

Biopsy result early next week and it's a dead cert that it will be positive. Please can I ask your advice on questions to ask, what did you wish you asked and didn't etc. looks like the recommendation will be for radiotherapy but won't know for sure until next week.

I've spent the last few weeks reading through all the very helpful posts here and gained lots of information and have a few questions written down but any others

would be great

Thanks

johnam 21 days ago

Hey TRJB if you go to the top of the post and the little spy glass type in TRJB and they will come up as you have 3 .

i made a list with my husband took it to our first oncology meeting and was told put it away I’ll answer everything . Well don’t as I challenged him on out third visit and he was quite shocked I spoke up . Things changed from then and he is now very approachable.

our list was very comprehensive and maybe that was the problem . The crux of it is ( I’ve taken out what was relevant to my husbands diagnosis )

• What is my Gleason score?

• What is my Cambridge Prognostic Group

• How far has my cancer spread?

• What treatments are suitable for me?

• What do they involve?

• What are the advantages and disadvantages of each treatment,

• including their possible side effects

• How effective is my treatment likely to be

• Can I see the results of treatments you’ve carried out

• Can I get copies of all my test results, emails and letters about my treatment?

• Is the aim to keep my prostate cancer under control, or to get rid of it completely?

• Are all of the treatments available at my local hospital? If not, how could I have them?

• Can I join any clinical trials?

• How quickly do I need to make a decision?

• After treatment, how often will I have check-ups and what will this involve?

• If I have any questions or get any new symptoms, who should I contact?

• At the end of the discussion I reiterate what I understand is going to happen next, and get their confirmation that I understood.

• I ask for the timescales.

• I ask for who to contact if they slip outside that.

• I ask for email addresses to contact - I am a great believer in the written word so there’s no confusion on who said what.

is my son and grandson more at risk and what. Should they get tested .

hope this helps

liz & OH x

TRJB 21 days ago in reply to johnam

Thankyou, I have some further ideas now. Just looked up what Cambridge Prognostic Group as haven't come across that before. Will add the questions to my list.

TRJB 12 days ago

A quick update and further question

Results back:

18 biopsies taken - Left lobe perineural invasion and extraprostatic extention, surrounding a nerve. Right side 8/8 cores involved, left side 10/10 lobes involved. Gleason score 4+5=9 - grade group 5. CPG 5 T stage T3b with bone scan now booked. Waiting for results to see what treatment moving forward ie Chemo or Radio or removal all mentioned.

I also found out which I was unaware of if taking Tamulosin the the PSA level should be doubled, so what my GP saw as normal 12 months ago, if this had been doubled would have not looked quite so 'normal'. Not very happy about this tbh.

Quesiton - can anyone advise what perineural invasion and extraprostatic extention, surrounding a nerve means as I do not want to rely on 'Google' for this and didn't ask.

Grundo 12 days ago in reply to TRJB

Hi TRJB

PI , it has possibly affected nerves within the prostate,

EE means moved just outside the gland.

I see your Gleeson is fairly high/aggressive so that is probably why.

But it is still potentially curable obviously as long as not in the bones.

Probably best option is HT and Radiotherapy.

Best wishes

Steve

Millibob 12 days ago in reply to TRJB

Hello TRJB

Thank you for the update. Your cancer is a Gleason 9 (aggressive) and a T3b (Left the gland). I can't give medical advice but you haven't had to make a choice yet so personally with those two in mind I would be avoiding surgery!

Good luck with the bone scan - please do come back with any questions,

Best wishes - Brian.

Community Champion badge

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Strength, Courage, Faith, Hope, Defiance, VICTORY.

I am a Macmillan volunteer.

johnam 12 days ago in reply to TRJB

The best people to ask are the prostrate cancer nurses at your hospital.

we were lucky at our local Maggie Centre as the councillor we chat with was a PC nurse for over 20 years . So she spoke in laymen’s terms and it made it easier to understand . Another forum would be

www.macmillan.org.uk/.../mac11639-earlylocalisedprostate-e06

https://www.prostate-cancer-research.org.uk/wp-content/uploads/2020/11/PCR-patient-booklet-2020-singles.pdf

best wishes.
Liz & OH xx

More from this forum

Question advice please