Husband newly diagnosed, PSA 24.7

I suspect that his tiredness is more to do with the mental anguish of what he is dealing with rather than any physical condition - the 'wait and see' really is the hardest part of this journey.

PCa is generally slow growing and the negative bone scan is really good news.

After the biospy is examined and discussed he will have his treatment options - either HT/RT or Surgery with possible SRT later if needed - it really comes down to how comfortable the surgeon feels about how much they can get.

Both treatments seen to have very similar positive results so no reason at this stage to think that this anything other than 'curable'.

If you can, I'd suggest some sort to distraction to help him take his mind off things - does he have any hobbies?

Good luck!

Steve

You’re right in saying that life can be so cruel at times, we had a lot of sad things happen around the time of my diagnosis.

PSA of 200 is high but there are members on here who have had PSA in the 1000s. I thought mine was scarily high until I found this out. Anyway until they’ve finished all the tests and biopsies it’s difficult to know exactly what’s what. The good news is that his bone scan was clear, I think with a PSA of 200 there is an increase likelihood that it has spread.

After the tests have all been completed (I’m not sure what other scans they might do) the MDT will meet and decide what treatment options are open to you. If RARP IS an option then you’ll obviously have to go on the waiting list for the Op. I’m not sure where this would be done but Ninewells may well have the Divinci Robotic equipment to do this. As I said surgery was ruled out for me, so I was almost immediately started on HT treatment to stop the cancer growing. I waited about 9 months for Radiotherapy for various reasons beyond my control, most people are on HT for around 3 months before RT starts. He may also have chemotherapy but it really depends on the outcomes of the biopsies and any further scans.

if he goes on HT, weight bearing exercises are very good for preventing muscle wastage. If he’s not a gym goer, or finds it difficult to walk, buy some resistance bands..they are very cheap and it’s amazing how many different exercises you can do with them. Swimming is VERY good if you’re on HT as it helps keep you supple. Balance exercises also very good. It might be worth a visit to a physiotherapist to see what exercised he could do.

I see there IS a Maggies centre at Ninewells, I think it would be worthwhile you both going along and having a chat with them…you don’t need to make an appointment. I thought Maggies wasn’t for me and it took my wife 6 months to persuade me to go along. I wish I had listened to her as the information and support I have had has been amazing and completely changed how I deal with this awful disease. I have also made many close friends who are always there for support. It might not be for you but you won’t know until you’ve tried.

Derek

Edited by member 25 Aug 2024 at 20:17  | Reason: Not specified

Hi Derek. 

Thank you for replying. We’re in Angus and were sent to Perth for his consultant appt & later the biopsies, although the MRI was Ninewells. Both have oncology depts but I think maybe folk are sent wherever the waiting lists are shortest. How long was it for you between getting your biopsy results and starting treatment? - I’m assuming since we are in approximately the same area the waiting times will be similar. 🤷🏻‍♀️.  It’s rather freaking me out that his PSA (200) seems to be so much higher than other folk I am reading about on the forum … I’m not sure if that would indicate it’s likely to have spread beyond the prostate.  

As regards keeping fit and healthy, he has a lot of joint pain through arthritis, which makes it hard to go for long walks etc, but he manages to stay fairly active particularly with outdoor bowling so hopefully that will help. (I wish I could get him to enjoy swimming, but unfortunately he never has!) 

Our first grandchild was due the day he had spinal surgery, and I can’t believe our second one is likely to coincide with all of this … fate sometimes has a weird sense of humour!! 

He is safe holding babies with only a few exceptions: the day of a bone scan, the day of a PET scan, or if he has Low Dose Rate Brachytherapy RT he can't hold babies for several months.

All the above require some radioactive material to be in his body. The material decays quite rapidly, but for LDR brachytherapy they use a lot of radioactive material and it can take anywhere from a month to a year to fully decay. The doctors will inform him of safety precautions if he has this treatment.

All other kinds of RT he is safe, as though he is exposed to radiation no radioactive material will remain in his body, so he will not emit gamma rays.

There are two types of Brachytherapy RT. Low dose rate (LDR) and High Dose Rate (HDR). LDR is also known as permanent seed brachy as the radioactive seeds are left in place, though they are only active for a few months. 

With HDR brachy the seeds are removed on the very same day they are put in so this is also safe from the point of view of him not becoming a gamma ray emitter. 

So LDR (permanent seed) brachy is the only option you need to be concerned about. As you say if the treatment team say it is the only sensible option then you may just have to accept it. It is often the case that patients are given several options all with an equal chance of a cure, and then choosing one based on lifestyle is the deciding factor.

Edited by member 27 Aug 2024 at 00:10  | Reason: Not specified

BTW, I meant to say…I assume it was Transperenial biopsies he had where they go in through the perineum rather than the rectum? The reason I say this as Ninewells sent a team down to Fife to observe the procedure when I was having my biopsies over 2 years ago, as they wanted to start using this technique which is much less prone to infection.

It’s was quite funny actually, with all these people looking at my bahookie I should have asked for an admission charge!🤣🤣🤣

Hi Derek.

I agree. I thought this was ground-breaking treatment. It was limited to  low/intermediate  prostate cancer which was contained. I've heard nothing since, and cannot recall anyone from this forum having this treatment.

Edited by member 05 Sep 2024 at 09:46  | Reason: Typo

Hi Kazzy. 

My second diagnosis in Sept 2022 showed that the disease had progressed extensively. T3a, extraprostic extension and Gleason 8 (4+4), later upgraded to Gleason 9 (4+5).

I saw the surgeon a couple of weeks later, and he put me on a waiting list for robotic surgery. I was told I may have to wait three months for the operation.

I was thrilled, when a couple of weeks later, they informed that they had managed to fit me in to for the op in Nov 2022. I went to the hospital that morning and was told the op had to be cancelled due to a lack of beds. My wife and I were gutted.

The op was rescheduled for Dec 2022. I went to the hospital was all gowned up and ready for surgery when at the last minute the anaesthetist had concerns regarding my suitability for surgery due to blocked heart arteries and the op was cancelled. My wife and I were absolutely devastated. That is when I started HT, to tide me over whilst cardiology and urology made a decision on whether it was too risky for me to be operated on.

Eventually I had the op in Feb 2023.

I sailed through the op, but unfortunately had a minor hear attack less than 5 weeks later. I ended up in hospital for three weeks where they drilled out the blockages and fitted stents. It was an awful time. It was very difficult, recovering from the prostatectomy and dealing with the discomfort and incontinence, whilst also having to deal with the the heart problem. I'm fine now.

As I stated, 18 months on from the prostatectomy, despite a very high risk of recurrence, my PSA is still undetectable. My heart condition has vastly improved and I'm now able to play footy with my 10 year old grandson.

Life's good now. I'm fully continent and I'm dealing with ED by using Invicorp injections.

At this time, I feel I'm a very lucky lad. However, despite trying as hard as I can not to,  I still fear the possibility of recurrence.

Edited by member 06 Sep 2024 at 09:49  | Reason: Additional text