Hi, I would like some help or opinion on my prostate cancer going forward.
I was diagnosed in 2020 with localised T2a-T1c 3+4 cancer, 50 samples taken, since then I have been monitoring PSA levels of 8.49 in 29/09/20 to 10.00 on 13/09/23.
This year I have 11.8, 10.8, 12.8, so I was asked to have an MP MRI, they found no difference, so I was asked to have another Biopsy. This resulted in the cancer being downgraded to 3+3, present in 10 of 27 samples. I had a call from the consultant and he was quite insistent on having Surgery or Radiology. I quoted to him that Don Gleeson said that 3+3 should not be called Cancer. He couldn't explain to me why my PSA was so high and I was not showing any deterioration and what was the point of having another MRI and Biopsy, if we revert back to the PSA level. I have refused and he is sending me another blood test for 3 months time in the hope that it will have decreased and we will talk again after the blood test. I told him to tell them at their meetings that I will only accept Brachytherapy as it's the one with the best results and that they can't promise me that I won't get impotency or incontinence from Surgery or Radiology. Brachytherapy is not done at this hospital, so I think that's why they don't offer it.
Any guidance would be appreciated
Hi Kezzer
I suppose the big thing here is what does the MRi actually say and possibly compare the last 2 or 3 Mri's.
What is the tumour (s) size in mm and is it anywhere near the gland edge.
You would have thought that PSA slowly increasing the Mri would have shown an increase in mm size
Over 4 years my PSA went from about 4 to about 12 and largest tumour size went from 3mm to 13mm.
Obviously everyone different and perhaps there is no increase but def worth checking, get hold of Mri report to take a look. and see what's happening
Best wishes
Steve
Hello Kezzer
Because of family history, my husband had his PSA monitored for many years and we watched it steadilt but slowly rise. About 4-5 years before diagnosis he was advised to have the old fashioned TRUSS biopsy. This was in the days when they did not do an MRI scan before biopsy and they could only biopsy one part of the prostate by going through the back passage. This was a more risky procedure in terms of sepsis and false negatives. My husband declined as the Digital examination showed no signs on cancer. He was advised to return to urology if his PSA reached 10 - which it did in June 2022. He was diagnosed at T3A N0M0 Gleason 4+3=7 . He was treated with 20 factions of RT and 18 months of hormone therapy.
We now wonder if he should have been diagnosed and treated sooner? We will never know. We also don't know whether he has been cured or whether there will be recurrence. AS Steve (Grundo) says - we are all different and our cancers all behave differently - both in how aggressive they are and how responsive to treatment.
I canot quite understand how/why your Gleason has gone down - I always thought the 'only way was up' but I may be wrong! In any case, the cancer has not gone away and you can't wish it away.
Whether you remain on active surveillance or resort to treatment is a very personal decision but, I am thankful that my husband actually had the treatment and has now been told that is life expectancy is the same as any man who has not had prostate cancer. He actively did not want surgery but that was his decision to make and I resepcted it.
HTH
Hi !
It seems that they are ok with doing mpMRI and biopsies but is there a reason why they don’t do a PSMA Pet Scan. I mean, there can be other reasons that you have 10 + in PSA but with a PSA in that area a PSMA would easily confirm if there any PSMA avid areas suspected of prostate cancer however low grade it might be.
Sounds like you’re into the radiation treatment pathway and HDR Brachy for your diagnosis has good success rate. Another option could be SBRT even if I suppose it’s not that commonly used. I would recommend you to think of adding hormone therapy to your treatment. I belive in your case short term of perhaps 6 months. By adding HT you’re adding benefits to the efficacy of the radiation.
Best wishes - Ulf
Hello Kezzer B
A warm welcome to the Macmillan online Cancer Community, although I am so sorry to find you here.
I quoted to him that Don Gleeson said that 3+3 should not be called Cancer.
That's a statement I personally disagree with - it's registered on the Gleason scale and it's not going away and in my view will eventually need treating, however that's not the point. Your team think it should be treated and have offered Surgery or RT you would like Brachytherapy - here's our guide to this treatment:
Our very own Community Member Alpine Wanderer has undergone this treatment and his journey is detailed in this thread:
RE: Surgery or Radiotherapy? Decision made!
He will be happy to answer any questions you may have for him - but as i write this he is away on his day job up a mountain in Spain.
If you speak to your team they will advise you of the nearest NHS Trust offering Brachytherapy - most trusts now offer this.
I do hope this helps - if I can do anything else for you please give me a shout.
Best wishes - Brian.
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.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007