Hi [@Matthew2022]‍ 

Just wanted to give you an update on my situation and keep this thread as a record.

I paid privately to get the PSMA scan done and the results of that did now show any spread outside the prostate.  The consultant said that having this scan as a baseline for future use if my PSA rises after surgery will be very useful.  As they will have something to compare against.

My treatment doesn't change and I am having open surgery next week - non nerve sparing including lymph node dissection.  I am lucky to have health insurance so was able to get the operation privately without a long wait.  The consultant and MDT were pretty definite that this was the appropriate course for me at this time.

The consultant said that my cancer looks like it is contained but it has high risk of recurring due to my high PSA.  The next step will depend on the histology post surgery and what happens to my PSA.   But he told me to mentally be prepared for follow up radio treatment about 6 mths after surgery.  Essentially he is aiming for a cure but there are no guarantees as the high PSA suggests some undetectable spread.

I know you are on a different path.  But I am thinking of you and your family and wishing you all the very best.  

Rory

Hi [@Jellies]‍ Rory,

It's really good to hear from you with an update on your journey!

Your clinical team appear to be giving you a truly excellent chance of a cure albeit I understand these things are stubbornly uncertain. Increased uncertainty is sadly a big part of our futures but I reckon you've good cause to be very optimistic. Let's hope your heightened PSA plummets and the post surgical histology results give you the break you and your family richly deserve. You've been through enough already never mind having to endure surgery (and the after effects). 
 

As for me, well, I'm holding it together as best I can. My wife and I are making the best of a pretty rubbish scenario and the kids are adjusting slowly but surely. I feel grateful for many blessings. I'm waiting for a second opinion but it's likely I'll be taking early chemotherapy followed by radiotherapy to the gland and SABR to my two metastasis (T5 vertebrae and pubic bone). I'm on Prostap HT injections or similar for life, the effects of which are no fun as we know. I appear to be responding quickly to the hormone therapy at least  - after 2 weeks my PSA dropped from 61 at diagnosis to 4.3. I'm holding the likes of Apalutamide, Enzalutamide etc. for later down the track. My Oncologist is really excellent in every way. 

As you say, let's keep this thread going for our mutual benefit and to help share information with the community. It means alot to hear from you - we've not physically met but we are brothers drawn together in adversity. 

I often think about you and your loved ones. Your path ahead is gruelling but there is much hope! Your attitude has been inspiring from day one  

Very best,

Matthew
 

[@Matthew2022]‍ 

You and your family have my total admiration and respect for the way you are working through everything.

I had my ORP last Monday.  I was rolled down to theatre at 3.30pm and expected to be back in my room awake by 8pm ish.  Just before I went in was chatting to the anesthesist and he said he had bloods ready in case I needed a transfusion because there could be a lot of blood loss.   

He was right because by the time I came round it was 11.30 pm and I was in the HDU after losing 2l of blood.  But I did just about manage to dodge the transfusion.  As a result I spent 5 nights in the hospital and took a bit longer to get my strength back.  Felt a bit like being hit by a bus for a few days.

Right now I'm recuperating at home and will get my catether out in a week's time.  Definitely getting stronger by the day.

Then it is a matter of waiting for the results.  The surgeon said the operation went well and here was nothing unexpected so it's a case of "fingers crossed".  I guess I'll have another meeting with him in 6 weeks or so when they have the histology results and I do another PSA test.  

Take care 

Rory

[@Jellies]‍ 

Hi Rory - Really good to hear from you. Whilst it's excellent you're getting on with life-saving treatment it's definitely not an easy ride by the sound of things. I hadn't realised an operation to remove a small walnut-sized gland could cause major blood loss. Not good. Glad you pulled through with your typical pragmatism and courage. I have a feeling you're going to contain this blighter and be cured. The thought of a catheter though gives me the heberjeebies. Roll on the next week when you can be released. The wait for your next histology results will be hard no doubt. 
 

My second opinion landed this morning funnily enough, confirming my start of chemotherapy a week today. Six cycles of Docataxel every three weeks followed by lots of radiotherapy. That'll take me into next year. The hormone therapy isn't much fun but relatively speaking I'm responding really well with little to no side effects. Many men have a tough time with things like fatigue, hot sweats, insomnia, brain fog, depression etc. Luckily I'm okay so far. 

The biggest challenge is adjusting our longer-term plans and dreams. Currently in the midst of career succession shenanigans (I'm a tech company owner and Chairman), financial and estate planning and even selling our home of the last nearly twenty years. We were planning on downsizing anyway so that's no major sacrifice. Having to free up funds to buy a separate superannuity for my wife as the chances of my reaching pensionable age is pretty remote sadly. 

All that said, I'm grateful for many things. It could most definitely be worse!

Stay in touch, recover fully and quickly my friend. 
 

Matthew

Thanks Matthew 

Funny enough you get used to the catether after a few days.  I'm told taking it out is easy...right... Isn't it amazing the sort of treatment we can take on board in an effort to tame this beast.  It is mind bending to think I could be sitting here cancer free, but no way I'm getting ahead of myself.  Current trajectory is radio in 4-6mths until the numbers show otherwise.

So glad you are coping with the hormone treatment.  God speed for the next installment.  It sounds like they are throwing the kitchen sink at you.  

I can totally understand where you are coming from with forward planning and providing for your loved ones.   It is quite the mindshift.  We are very fortunate in that my wife has a pretty good job and pension herself.  I'm also in tech with a US multinational and they have been fantastic.  Actually the support from so many people has been really humbling and uplifting.  

Rory

It's good to hear you're getting the support you need from all quartes [@Jellies]‍ including a supportive employer. The world is mostly awash with good people. 

Hope this finds everyone well. 

Update from me day 2 post Docataxel chemotherapy cycle 1 of 6. 

No discernible side effects other than day 1 I felt a mild Ready Brek glow sensation a bit like a raised internal nuclear reactor and slightly increased breathlessness. They went overnight and today I caught up with some work, walked a brisk 3 miles and spent another 30 minutes in our gym. Preparing now for work related video conferences this afternoon. Pleasantly surprised given I was warned to expect a handful of side effects by now but especially fatigue and sickness/nausea. I realise it’s early days yet and this treatment can be cumulative in nature. Long way to go.  

At DX my PSA was 61, following Zoladex injection in just 2-3 weeks it dropped to 4.3. A month later (last Thursday) it dropped to 0.67 so it’s heading in the right direction thankfully. 

Hope to hear how things are going for you all, as ever. 

Matthew

Hi Matthew. Thought i'd chip in a wee bit here. No idea if it reacts differently in males opposed to females, but my wife was on Docetaxel, and the one thing she was told is Docataxel doesn't tend to cause sickness/nausea. she was actually taken off the anti-sick meds prior to starting it as they said she wouldn't need them. She didn't. Whilst she needed them for the first type of chemo she was on (EC for breast cancer).

Something she did have a problem with when on Docetaxel was dry mouth and issues using mint toothpaste (it stung her mouth and gums badly). If you find yourself being bothered with your mouth, get a soft manual toothbrush. Not a medium firmness one, but a soft one. even a bona fide baby tooth brush is good. As for the mint, there's a toothpaste called Oranurse (sold by Amazon etc), and it's mint free and has no taste. It's made for people on chemo and people who generally can't tolerate mint or flavoured toothpaste for one reason or another. The effects of chemo tend to be accumulative, so if issues with your mouth do begin to surface, nip them in the bud quickly. It can stop you from eating, and even drinking.

[@Matthew2022]‍ 

Great to hear from you Matthew.  So good to hear that you are tolerating and responding to the chemo treatment so well and impressive that you are keeping work spinning at the same time.  I will be a few weeks from any gym work but also looking forward to getting back for the benefit of body and mind.

Spent the day in hospital today to get my catether out.  You pee and then they scan your bladder to make sure it is emptying properly.  Back home now and need to wear pads but hopefully that will improve over the coming weeks.

My consultant also dropped by and said results of my surgery were good.  Negative margins, clear lymph nodes and no adverse features.  He also said my cancer was not as extensive as the biopsy suggested and the 4+3 grade was unchanged.  The MDT reviewed my case today and said that with a bit of luck I should not require further radio treatment.  Of course I need to get my PSA in 4 weeks time and will be keeping my fingers and toes crossed for that result.  

Take care.  

Rory

Hey [@Jellies]‍ - this is very good news, I think you've got this. Whilst of course you're not totally out of the woods just yet but you can see the clearing ahead of you. 
 

Who'd have ever thought just a few short months ago all of this wasn't a thing. How things change. It's remarkable how we humans can pull things together and pull together. Family closeness and the support of friends and colleagues deepen. 
 

Hope you stop leaking soon and the monitoring of your PSA reflects exactly the views of your capable clinicians. 
 

Take care, thanks for the wonderful update!

M