Results Day

Hello AlwaysHope

Thank you for a great post both supportive and extremely informative which is so helpful.

I think priorities are definitely changing.

Hi Barry

Definitely not what we were expecting but we’ll get through it. I’m also encouraged research and new treatments in the coming years which will be useful and beneficial.

It’s Complicated as we have private cover but were advised to stick with NHS however due to the long wait times, we’d still be waiting for the biopsy as it was 6 weeks wait time plus 2 week wait for the results. As husband is paying for it thought we’d use it as was anxious enough without the thought of high grade aggressive cancer. It was me that wanted him to use it and the PETscan at that point was not on offer. Also in Buckinghamshire there is a shortage of materials for doing the PETscan so we are lucky to have got in when we did.

Husband has only been in this job since 1st Feb this year and it’s a 6 month probationary period. Stressful intense programming job in London. If he quits no health insurance. I know we are lucky to have private cover, not sure how much it will cover but we’ll see, but it’s not cheap and will be even more expensive if we take it over if he leaves his job.

Hi

The PETscan was done privately and we waited to see the MDT at the NHS hospital, everyone agreed best course of action. However when we got there yesterday and I asked what the PETscan report said the CNS team leader hadn’t seen it. Support worker rushed off to phone and get copy.

The CNS gave husband prescription for bicalutamide to start immediately and for us to book LHRH injection with GP surgery within 3-14 days.

Interestingly the private consultant also didn't have a copy of the PETscan report which had been filed on 11/5. Luckily I had asked for copies of everything and had taken it along as I thought he’d have the full scan. Last time we saw him he had the Bone Scan and MRI scans, presumably from NHS urology team.

I agree we need to have a definitive staging. After the PETscan on 9/05/24 it was  PIRAD 4/5 T2cN0M0

At 11am at results meeting it was T3bN1M0, Gleason (4+5) = 9 and by 730pm it was with the added T3bN1M1a with him querying M1b.

So now we move on to the Oncologist with a 12 week waiting time.

Hope I haven’t rambled and also I hope I haven’t offended anyone by using our private health care. It’s expensive, it comes with the job and we might as well use it. Rightly or wrongly, and please don’t judge me if it speeds things up it’s good and if that then frees up space for someone without this cover that’s good too.

I am also slightly confused that certain things are done by the NHS Urology etc and the private sector, there seems to be a cross over as most consultants have private clinics too.

Thank you for your best wishes.

G

Hi Gill, I think if you have it you should definitely use it at this point because of the extra wait times just won't be there. and of course you can go anywhere you want. I see what you mean about having to carry on working though, my partner works from home which he finds easier, it cuts out the travelling and if he's feeling tired he can work around that. Maybe that's something your husband can do later.  Hopefully he has a sympathetic boss that will work with him on making plans. My partner is having strong meds and theres been times when he's all done in but he still manages to work through ok . He also has a "Sit stand "desk that goes up and down so he's not spending all day in a sitting position. It seems to make a big difference to him .You can always go back to NHS if it doesn't work out.

Read his bio and you will see he's in a similar position with a similar prognosis, but we are 2 years in and he's doing really well and we are hoping for a lot more years to come x

Hi Brian

Thanks for your reply. Such useful and helpful information in the mountain of paperwork and information. Certainly makes things a bit clearer.

Certainly puts things into perspective.

Enjoy your hols! That actually brings me in to another question which I seem to have seen within the vaults of information - holiday insurance and treatment and best time to go.

We were going to go away before he started his new job but it never happened and just before he tested with a high PSA we were going to book to see our friends in the US in the new year, obviously now on hold. What is the general situation regarding travel etc?

Thank you all for being with us on this strange journey. 

Best Wishes

G 

It's good that he's started HT to stop it from spreading, in the meantime the most important aspect is to find out if Def M0 or M1.

If M1 then where is it? Presume bone scan is clear by the way

Good luck

Steve 

Hello GilliB 

Ah yes - holiday Insurance - once you mention "The Big C" it goes through the roof. We have a place in Turkey so we need worldwide insurance as it's in Asia. Mrs Millibob has a few issues (medical I should add) so before my Radiotherapy after diagnosis it was £2,2K - now after RT it's £ 780 for an annual policy.

We do have another forum for this and here's the link-

Travel insurance forum for cancer patients 

It's going to be a journey - but with all the support here - you will both be fine.

Best wishes - Brian.

I was half expecting immediate HT. So I was relieved when they gave us the prescription. Husband was surprised.

Thats the confusing aspect. Bone Scan on 29th April was clear and a sigh of relief was had by all.

Apparently M1b can mean spread within the pelvis soft tissue/node area and not just bones. But don’t quote me o that as I might have misunderstood as it he b makes me panic and think bones.

Thanks for the good luck wishes, gonna need them me thinks!!

Thank you all for the support.

My husband is not ready to reach out yet he says and I am respecting his wishes but are there any tips or hints to show him the way towards support please. 

By the way thank you so much for the travel insurance link. Think we might be holidaying in the UK this year til after radiotherapy. Wish the weather wouldn’t be so horrible.