Questions about new diagnosis

Hi John, 

I can't really answer the technical questions but I can offer some reassurance. 

I was diagnosed over 5 years ago with a T2 4+3=7 and I'm still here alive and well. I won't deny that it's been a difficult journey at times but my latest PSA result is now undetectable. 

Hopefully others on this great site will add their positive experiences and advice. 

Good luck, 

Kev.

Thanks Kev & KS25 for the replies.

Yeah - I've been watching a lot of the PCRI Youtube videos and did see that one a while ago.  It was actually these that initially alerted me to the newer PSMA pet scans as the main man in the videos mentions them a LOT in the more recent videos.  But with a lot of the newer methods and technologies these people mention,  it depends on availability and where you live. 

I know the NHS does have the scanners available but, as I said, the scans aren't used routinely during diagnosis.  I just think this could potentially pick up disease that may have already spread that the MRI and bone scans didn't. 

I could be wrong but I assume surgery would be pointless if there has already been any kind of spread, even small ?

Thanks

Hi John.

I'm sorry that you've had to join us but welcome to the forum.

 I know you hate 'usually' to describe possible disease progression and treatment outcomes, but as you say,  everyone is different and there are no certainties.

What age are you mate and what is your PSA?

In general, your staging and Gleason score is about the average diagnosis for folk on here. I'm not medically qualified, but would say that although its always nice to get sorted asap, that in your case there is no need to rush anything. I don't think there's any need to concerning yourself over advanced scans, or spending any dosh on private treatment.

In relation to your surgery enquiry, the cut off point seems to generally be T3b staging. I had surgery when mine had breached the prostate capsule (T3a) and I had a high Gleason 9 (4+5). Two years later my PSA is undetectable. 

I know how difficult it is, especially if you're a bit of a pessimist, to see the positives, but you're in a decent position mate. The treatment timescales you've mentioned seem normal. I ended up waiting 6  months for my op.

I wish you all the best.👍

John,

I was very scared of surgery and side effects  including just the thought of a catheter for 10 days. Both surgery and radiation have side effects some overlap and others like rectal are radiation. Today versus years ago leaps in technology have come to minimize side effects in both procedures. Surgery with Puboprostatic ligament sparing, and Retzius sparing along with procedure technique to reduce or eliminate incontinence. Nerve sparing for ED issues and Robotic Single port entry for overall quicker surgery recovery. Now with Radiation, the development of Space Oar Hydrogel is used to minimize rectal side effects. 
For me choosing Surgery also had to do knowing that I would still have Radiation as a backup and approaching 71 the window to receiving surgery was getting closer to close regardless approaching 75 but sooner if my health were to deteriorate for any other reasons and preclude surgery. Salvage Radiation is much easier than a Salvage surgery as the surgery is considered much more difficult and done only by certain surgeons very experienced in that salvage surgery. Twenty years ago I had non-hodgkins lymphoma and my Oncologist recommended a lower chemotherapy regimen than CHOP saying we wanted to keep that in reserve for relapse or transformation. I liked having that as backup and I was blessed to go into remission and remain.

Another reason I chose surgery was that while I was in surgery after the prostate was removed and tissue to check on margins the tissue was sent immediately to the hospital pathology for staining to see whether I had clear margins. This clearly delays the closing of the surgery and in my case my margins did come back positive which surprised the surgeon because based on the hundreds of tissue he visually has seen in surgery which he did not see anything unusual and the PET scan saying it was contained within the prostate really was a surprise. Many Surgeons do not bother with this and at your post surgery appointment they give you the disappointing news that you have positive margin. Well my Surgeon was then able to go back in for 2 more hours delicately continuing nerve sparing and cut for more margin and at my post surgery appointment I was told the final margin was then negative. Without that additional step of my tissue going to pathology I would have been told at my post surgery appointment that unfortunately you have positive margin as many are. His afternoon surgery appointment got delayed by two hours by the surprised breeching of the capsule by the cancer. Immediately upon my catheter coming out I was continent and have minimal ED side effects 90 days out with more improvement expected. I was up walking immediately after surgery and did not even spend that night after surgery in the hospital. Within two weeks I was back to normal activities like driving and getting out and around and traveling. Although my catheter was in for 10 days that was due to a 3 day holiday period but that allowed my surgery to continue to heal. Now on a downside I did get a blood clot in my leg from the surgery likely due to my surgery taking much longer than expected but blood clots are a side effect of any surgery not tied to prostate surgery. Anyways my thoughts on my direction I chose.

I agree.

Ned was operated on in America. He appears to have had access to procedures that are very uncommon here. I've not heard from anyone on the NHS who've been fortunate enough to have margins checked mid prostatectomy. I've seen on TV, eminent UK surgeons, checking margins during other very serious and complex cancer operations, but not during prostate removal. 

Likewise, the single port, puboprostatic ligament, Retizus sparing prostatectomy maybe available here,  but I suspect only in specific hospitals. It was certainly not offered to me.

Ned also mentions that in America PSMA PET scans are standard after biopsy. It seems that here you often have to be have to virtually on deaths door to get one.

Perhaps, it shows that if you have the disease, America is the place to be?

I was just grateful, despite having to wait 6 months, to get the bog standard 'whip it out' op, in good old Blighty. 😁

Edited by member 20 Nov 2024 at 20:34  | Reason: Additional text

Cheers Kev. I've been here just over a year and had never heard of margin checking mid op or that it was an option here. Like a man in orthopedic shoes, I stand corrected.

It does beg the question, why hasn't it become a standard procedure?

Edited by member 20 Nov 2024 at 21:27  | Reason: Typo