Prostate cancer confirmed at age 48 :-(

Hi Hertsman !

Sad for diagnosis you’ve received but you have really come the right forum with some amazing people that can help you on your path with own experiences and lots of compassion.

Well like you said, you have low volume, low PSA and have a lot of treatment paths to choose from. But your cancer is moving and you’re young and in good condition so, make sure to have treatment and also try to hit it really fast and hard right from the beginning 

As you can see I’m not from UK and only know what other persons have said in this forum but I think focal therapies like HIFU, cryotherapy etc. is used in studies and trials in the UK so perhaps that why they don’t mention them as standard treatment forms. But I think it could be good to ask. I think because you have a low PSA and lower risk / low volume cancer your not a ’candidate’ for PSMA Pet Scan.

Anyway, you are young and in good condition so you have a lot of really good alternatives of treatments with a high curative prognosis.

I myself have been on the radiation path. You will probably here from some really persons telling there personal stories going on the radiation path or prostatectomy path. And don’t be afraid to ask 

Best wishes - Ulf

Good Afternoon Hertsman 

A warm welcome to the Macmillan online Prostate Community - I can well understand you having a rant and am sorry to find you here at 48.

I would have thought with those statistics you would be suitable for surgery to remove, HT/RT or Brachytherapy all treatments to be given with a view to them being on a "curative pathway".

In the UK "focal therapy" is normally available on the NHS as part of a clinical trial or on the recommendation of your consultant. - it's not generally available. I can understand the refusal of a PSMA-PET scan as there is no suggestion of a spread outside your prostate - oh and the cost of £2,500!!

I hope the above is of help - feel free to ask any questions, however trivial.

Best wishes - Brian.

Thank you Millibob and the Ulfhbg

The lack of PSMA - Pet is frustrating as if i were to weigh this up in business terms, i understand the cost implications from the perspective of perfoming this on every patient (though i understand Australia has managed to do so at a much lower cost)

You would have thought however that the long term cost of having to deliver a signifcant volume of medication over time and further treatments when mistakes are made are significantly more than the initial 2.5k outlay to be reasonably definitive.
I note the surgeon from UCL was making this argument as the proposed future for Prostate cancer testing rather the the horrificness of the biopsy.

As a result i would have hoped you individualise each time based on the risk factors and patient individual history.
The reason i'm concerned in my case is that i had a history of problems, but the hospital hadn't even checked my medical history until i suggested that it might be a good idea to do so.

Anyhow, i suppose i should try and see the positives that i do at least have a couple of choices.

I do note however that there is limited research data performed on the outcomes of younger men, as i was hoping to get at least another 30 years  of life.

The UK seems to review survival rates on 5 and 10 year timelines, which isn't the best news at 48.

I did find the australian paper on survival rates for those under 55, which was marginally positive, though i found the predict prostate tool that the hospital sent, just depressed me.

Good Afternoon Hertsman 

Whilst I understand your frustrations with the NHS (I could write a book but it wouldn't help) I think you need to look at the situation as it is now:

PSA 1.27 : Gleason 7 (3+4) : T2N0 (M0 I assume).

These are figures which if treated correctly should lead to a "curative pathway".

You said "I was hoping to get another 30 years of life".

This should be very possible. I understand you have been researching Prostate Cancer and treatments and studies throughout the world.  Since I have been involved in Prostate Cancer, not just as a volunteer for Macmillan but since I started my personal journey I have learned very quickly to accept what was on offer and not to trust life expectancy statistics.

I have found the Prostate journey needs to be "micro-managed" and once you know where you are going and what you want "knowledge is power". If you tell your team what you want and why you can get it.

If you live in England having FULL access to the NHS app helps too as you can keep an eye on your progress, test results etc too.

I do hope this helps, please come back to me if I can do anything else for you.

Best wishes - Brian

Hi Hertsman ! 

I can only agree that you would be a perfect candidate to have the PSMA Pet Scan as, together with the biopsies and the MRI to really map up your diagnosis. Probably the PSMA Pet Scan would only confirm localized prostate cancer with lots of treatment payhways.

From being on other forums the discussions around ’cure’ from prostate cancer treatment is actually really a controversial discussion even if the science can show lots of statistics on overall survival, death from prostate specific cancer, recurrence and etc. One of my biggest issue has to do with the ’split’ in the profession that same diagnosis and perhaps same treatment, one MO consider it with ’curative’ intent and another MO does it to prolong life but not with curative intent. From a patient perspective with mixed messages that is really stressful to say the least.

In my opinion, the controversy regarding cure or not is probably why you don’t find this type of statistics either, but only 5-year and 10-year. There are however lots of PC cancer that stills lives 10 + years after treatment(s) with no signs of PC so perhaps it’ up to you as PC patient to identify yourself as cured or in a very loooooong remission 

Regarding individual treatment and not ’one size fit all’, you have always the possibility to really have a good argument with your MO / medical team and who knows, they might be able to offer you focal therapies.

But in the end, both radiation and prostatectomy for your diagnosis comes with very good statistics of a high ’ cure rates’ with very low side effects and very low risks of recurrence, as do focal therapies as well of course.

Best wishes - Ulf

Hi Hertsman.

Good afternoon I'm very sorry to hear about your current circumstances/ongoing problems.

Yes I was diagnosed last June 2023 with terminal prostate cancer that had spread to my bones/pelvis.

My uncle had PC around 10yrs ago and had to fight to get his GP to refer him to the hospital/consultant for treatment but luckily he was able to have his prostate removed in the end and cured.

And my brother who is only a year older than me was diagnosed around 5yrs after my uncle with PC and again had his prostate removed and cured.

I have been tested for the "Brca Gene" so that my children can be checked in the near future to have the best outcome as possible.

Yes I have also been under the Urology Department at my local hospital since 2005 and nobody has ever picked up my PC even though I had surgery on my bladder in this time!!!!

Please don't worry about the rant that's what we are here for my friend.

Prostate Worrier.

Thanks Brian.

Thanks for the response.
I think my every journey within the NHS has shown that the need for "micro-management" is a constant.
I've worked in academia for some time, so totally agree that knowledge is definitely going to be power.

My only solace at the current time, is that my father is currently still with us 15 years after his Open radical prostatectomy, so this is the comfort that i'm trying to convey to my children and trying to take for myself.

I've just received my histopathology report too, which i'm just diving into.

Thanks also to Ulf and Prostate Warrior

Is the survival rate general - even if you have surgery and they remove it all? My hubby is 53. Concerned to say the least. Hubby having a radical prostatectomy in less than 2 weeks. 

My husband has a psa of i think 6.5 and his gleason score is 3+4=9. He is having a radical prostatectomy on the 15th.  Scans show no evidence of spread. So hoping its contained and will be totally removed. Risk of lab reports coming back showing the need for radiation as well. I am crossing everything that this will not be the case. But scared about the results.  He has family history of his dad and grandad. He has some fatigue and thought it was age and the fact that he works all hours in a physical job.  Really hoping that this gets better post surgery/healing time. 

Fingers crossed for your husband.
I also have a similar family history and i'm happy to say that my father is still here following his radical surgey in 2009, so there are great positive stories out there.

Im waiting for a second opinion from another London hospital, but i'm so worried about this waiting period, that i might just go for the prostatectomy and be done with.

My life is consumed with wondering if every little new pain i feel, means its spreading.

I know its unlikely and i have been reassured by 2 consultants that waiting for the second opinion is fine, but you cannot help where your mind takes you.
I
The decision to make as to whether to go with brachytherapy or the prostatectomy, feels almost impossible.

It doesn't seem to matter how many times you go over and over the data, stats, likely outcomes, it still feels like the choice between a punch in the face or a kick in the unmentionables.
As always some aspects of the NHS have been great, some have been terrible.
I had asked for the second opinion over 1 month ago, but a mix up between 2 of the best London hospitals has resulted in a delay in the second hospital MDT review and therefore a delay in treatment.

I'm fairly sure that the second opinion will offer the same options, but for such a life changing decision i wanted to be sure.