Questions about new diagnosis

Hi again John.

Regarding your information, its best to put as much as you can on your profile, mate. If you do that, it will save you having to repeat yourself in other conversations.

Obviously it's not good to see any PSA rise, and I understand your concern, however, it's not always a sign of disease progression. You haven't had enough tests yet to show if its a continuous rise. At least you are now in good hands, I'd be expressing your concerns assertively but politely to your oncologist/urologist.

John,

Here in the states PSMA PETS are standard after the Biopsy, as are Mp MRI’s prior to biopsy for most the physician’s dealing with initial diagnosis and staging of prostate cancer prior to treatment decision. The PET’s are important for seeing metastatic disease, which bone scans in the past were often used and still are.

Certainly understand your concern over aggressive or advanced but that often is typically important in determining treatment but not necessarily aggressiveness in speed of your cancer actually growing inside of you. Yes its optimum to get the cancer before its breeched the capsule, but even when it has, it not considered metastasized. Most treatment options are still available. Studies have shown up to six months from diagnosis to treatment has shown it does not affect outcome of the treatments.

Good luck! 

Hi

Obviously I'll know more after speaking to both the oncologist and urologist but I'm assuming I'll have the option of surgery or radiation.

I'm dreading having to make the decision between the two as I'm terrible at making decisions at the best of times, but this is literally a potential life changing decision.

I've never had any kind of surgery before so even the thought of the surgery itself scares me, let alone the side effects.  But that shouldn't be my defining factor - it should be the ultimate long term outcome.

Much like everything in life people will have had good and bad experiences with either option.  If your experience was bad then you'll think - "I really wish I'd gone for the other option"

I'd be really interested to hear other peoples' thought process when they made their own choice and why they ultimately went that way.

Thanks all

John

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

Hi

Had meeting with oncologist a couple of days ago.  Again, don't know if it's just an NHS or resource thing, but she said they still radiate the whole prostate rather than focal, with the potential side effects of that.  Don't know if focal is still fairly new so long term results not known ?  Or just most of the NHS is still a bit behind on techniques and technology.

Without outright recommending it, she said that they'd normally go for surgery for someone of my age and general health.    The cynic in me wonders if she just doesn't want additional work for the department.  :-)    Yes, I know it's ridiculous.

Still got a few weeks to wait for urology appointment so will see what that brings. 

Still hate the thought of having to choose.  If it was a heart condition etc where they said you could keel over at any point if you don't get this surgery then fine, choice made.  But having to choose between two different options and then later wondering if you made the right choice is terrible.

Anyway - another vent over.  Thanks for reading if you did.

Cheers

Hi John,

I’m now 57, diagnosed June 23 with 3+3 Gleason, Med team advised AS, I was all for having it out. Ended up on AS by default due to timescales here in the West Midlands. At 12 months, my PSA was going down, still is, and 2nd MRI was more favourable than the first one. 2nd Biopsies were delayed 6 months on advice from Med team. Had 2nd biopsies 23 Oct, one core with 3+4 and one core with 4+3, Med team recommending removal, will take 2-3 months.

As others have said, if you have removal then other options are still available if cancer were to come back inc RT. If you have RT, removal may not be possible further down the line. 

Again as others have said, everyone is different. For me, my decision will not be based on side-effects, as much as yes would love to avoid them if poss. My top priority is to hopefully still be here for another 15, 20, 25 yrs and, for me, it seems removal gives that the best hope. 

There is no easy answer and sadly not enough long term study data (10-years or more surveys) to make the decision any easier. Keep checking online for all the info you can gather to help. Some good stuff on YouTube about different approaches to removal and trying to avoid side effects as much as possible. 

wishing you all the best

Jon

Hi John,

Yes, at the moment I am in the NHS system in Worcestershire. My latest biopsy results meeting was with a locum consultant but I believe that all results and recommendations come from a meeting of the medical team that is headed by one of the main NHS urology consultant's covering the Worcestershire area. The main reason given for their removal recommendation was my age. He said that if I were 75 years old with say a 10-15 years life expectancy ahead of me, their recommendation might be different. He mentioned that radiation can lead to issues on a 10-year or so timescale with possible bowel cancer and if radiation were used now, that would not be an option for me if that were to arise in 10 years time when I would be 67 years old. Whether this is official NHS policy I cannot say but it does seem to accord with lots of views that you can find online.

Going back to my previous post (everyone is different...), another factor for my situation could be that, what is regarded as a slow growing cancer has gone from 3+3 Gleason to a mix of 3+4 and 4+3 Gleason in just 18 months from at 56 to 57. My PSA was 4.4 at the highest last year and was just 0.85 two months ago. Maybe the 2nd biopsy results are way ahead of the usual curve that they expect to see. I am due a consultation meeting with the lead consultant in February (!) when I would hope to find out more info if nothing changes before then.

Jon           

All surgeries have risks. I haven't heard of anyone die of prostatectomy; that is the good news. Recovery can be quite straight forward or difficult. Chances of incontinence nowadays are low, ED problem is under estimated; consultants tend to be over optimistic. I had surgery 13 years ago, suffer from very minor incontinence and permanent ED. We consider ourselves very lucky, enjoying our life in all its aspects.

If you go for surgery or any other options be confident and positive. Remember a lot of healing takes place in your brain. You are relatively young; I had my surgery at 72. Because you are young you have a good chance of recovering your sexual function, but in my opinion vast majority of men undergoing prostatectomies don't achieve 100% sexual function post surgery. 

Good luck - we all need that.

In my experience the NHS, especially its anaesthetists,  go to great lengths not to operate on anyone, if there's a risk they might not wake up.  

If they think you're a risky patient in that respect, they won't operate on you in the first place.