Still waiting for CT MRI and biopsy results

HI,

I've just seen your posts and noted that you don't seem to have had much discussion with medics.  Were you  allocated a specialist nurse?.   They can be very helpful in explaining what that hospital offers and sometimes on what other patients have done.   Although this forum does that as well.

We there anything else said about treatment to the pelvic spread.  If it is just one, or maybe two lesions they could perhaps give you RT to it as well as RT to the prostate.

The psa of 10.6 is quite low to have spread.  At that level there's a good chance of it not being Prostate Cancer although it's a probability so you do get them.

You're going to see a private consultant and will need to be armed with questions.  I haven't looked at your complete posting history but have you been offered a psma scan.  That's more definitive than any other scan and the NHS does offer it.  The risk being it will find more and preclude RT treatment.   I recall that when I was diagnosed I wanted the treatment whether it had spread or not and wasn't keen on too much diagnosis.  Since then it appears that having your prostate removed can reduce the speed of spread.

Our hospital send people to another hospital for psma scans although at a psa level more than I want so I might pay for it.  It seems fairly common to pay at about £2500/£3000 or it was a year or so ago.

Being on hormones can be used as creating time if later treatment is likely.  I'd be pushing for knowing if it is a small amount of spread and if curative treatment is possible.

I'm not sure if that's helpful.   Good luck, keep pushing.

Regards Peter

Hi Emma,

PCUK has a number for their own nurses.  The doctor shouldn't have said it's bad.  Did he mention whether it's been reviewed by the MDT, multi disciplinary team, it should have been.  It's never good to go alone to an appointment as your brain freezes.

The NHS is very prescriptive. They follow NICE guidelines, tailored by the local consultants for the equipment they have, sometimes to keep cost down.  Although you can ask if there is equipment elsewhere.

They probably wouldn't remove the prostate because it might slow it down and would probably say it's not proven or worthwhile.  Similar with psma testing, they don't have enough scanners.  My own nurse said if I had a private scan they'd use it but they'd wait until they thought the scanner would see it. The scanners only see things that are large enough.

It's possible to frighten yourself reading of worst effects. I was told to  take each step as it comes but I like to look forward and know my options. There are people on here who've had all sorts of RT to occasional single spreads. You might do a search for Old Barry. As yet perhaps we don't know a proper diagnosis by the sound of it.

Also age and fitness can be a factor as they can give stronger treatment to younger people.

I'd think Oncology would normally be there and it was decided that was the best option.  Although you should have been given more explanation I'd think.

It was probably a good enough diagnosis but the options don't seem to have been well explained.  I was given 30 minutes to discuss the what's and possibilities.

The NHS wouldn't usually remove a prostate where another option better met their criteria.

Any scan can only see a certain size. I'd think if an mri can see it a psma will be clearer, it's whether it finds more.  I don't know if they do biopsies on the pelvix.

I'm not keen on appearing an Oracle. I've read a lot and like to think that if necessary I can talk sensibly to a doctor and offer thoughts that might help form a wider view for others.

Hi Emma.

Yes, you can have a prostatectomy with any Gleason score, mine was 9(4+5), the reluctance to do some is more to do with how much it has spread from the prostate.

To clarify my CT scan showed bone anomalies, the bone scan suggested that they weren't cancer related. According to my records I've not had a psma scan.

Hope this helps.

Edited by member 24 Aug 2024 at 12:29  | Reason: Spelling.

Hi Wedidntwantthis,

Re: Keto Diet:

I do not claim any expertise whatsoever, but according to Jane McLelland in her book "How to Starve Cancer", fat should be reduced in the diet, particularly for people with prostate cancer, as it is typically more 'driven' by fat than sugar (except in late-stage prostate cancer).  According to McLelland, most other cancers are more driven by sugar, so prostate cancer is unusual in that respect.  However, she seems to wholly endorse a low carb, low glycemic diet.  She also suggests that red wine (in moderation!) is good for prostate cancer.   

Just my two-penny-worth.

Best wishes,

JedSee.