Didn't think it could get any worse (Gleason 10!)

I can understand how you feel but you have the correct mental attitude.
Kick its arse!

Obviously the treatments have to do their part but a positive mental attitude is important.

Prepare for tough time but as Nietzsche said - "What doesn't kill you makes you stronger"

It’s a shock and the waiting is the worst over the festive period,I just got my phone call on treatment yesterday from nurse following team meeting,I’m Gleason 7 3+4,and will be Radiation and hormone treatment or vital surveillance which after thinking about I don’t think I’ll take as I’m frightened it spread’s between MRI’s so will probably go with the first treatment,you seem very much in fighting mode and this site is very helpful,take care 

I'm so sorry to hear of your diagnosis and distress. It's a tough call. It seems as if you are beginning to work around to getting over that horrible, mind blowing shock. I think your wife is quite right to be chasing the hospital - I had to do this all the way through my husband's diagnostic journey. It does make you feel that you are being proactive and I do think it helped!

What I would advise is that you or your wife keep a diary of the dates, times, names and contact details of each and everyone you speak to and roughly what they say they will do etc! I found this very valuable when trying to jog things along and was able to say, 'on this day at this time you said you would do this by [date] - why hasn't it been done?' I also found that having a record meant that when we eventually submitted a formal complaint we could detail precisely everything! I also found that once people give you their name they start to take some ownership of the issue.

A second action that also worked really well for us was that we told everyone we spoke to that we would take a last minute cancelled appointment. We said we would just drop everything and go in. 

I do hope that you get your treatment quickly, that it works well and that it 'kicks this thing's arse' (love that saying!)!!!!

Good luck!

Hello Zaxx  Well that's a blow to say the least - I am so sorry to read your post. 

The good points - you are young, your family is on your side and you have a positive attitude. Remember 98% of people with Prostate Cancer die WITH it, not OF it so "kick it's arse" is a great motto.

Worriedwife has some great points in her post regarding the hospital and your appointments and she's right. Being proactive helps.

On a practical front a couple of points: (well 4 actually now I have written them)

* As you may well be posting more often now - can I ask you to detail your diagnosis and journey on your profile. To do this go to your home page - click on the chair in the top right - then "profile" and then "edit". To get an idea of what to write you can read my profile by clicking on the icon of the beach (you don't need to write a novel) but it will stop Community members asking you the same questions.

* We do have a Neuroendocrine cancer forum . It's not that busy but it may be an idea to join. You can do that by clicking on the link I have provided.

* If you need any extra local support do you have a "Maggie's" near you. This is a cancer charity and they provide plenty of help or just a brew - to find you local "Maggie's" 0300 123 1801 or enquiries@maggiescentres.org or www.maggiescentres.org

* If you need ANY help or support feel free to contact our help line on 0808 808 00 00 (8am - 8pm 7 days a wee). They are a great set of people with plenty of resources.

Don't forget YOU are a Community member and WE are with you here so ask any questions - there's sure to be someone here who has "been there - done that".

Let's KICK IT'S ARSE.!!

If I can do anything else for you just let me know.

Best wishes - Brian.

We are all behind you kicking it's arse and I have just put my hob nail boots on for you. Having a positive attitude is brilliant and I am sure that is why hubbie has done so well through his recent chemo. You can do this 

Hi Zaxx

Yes you’re right, more than a few years the way Medicine is moving. I’m a Gleason 9/10 but I don’t think there’s much difference between 9 and 10, seven and a half years ago I started my journey, I still expect a few more years yet, I’ve took pomi- t for that amount of time, it’s just a supplement along with a few other supplements. Mainly for helping my PSA and iron in my blood. 
Keep the faith and stay positive, your head may drop a few times only natural, but we’re here to help where we can, I’ve been on this forum for approx seven years giving advice where I can, I’m sure you will do the same after your treatment.

Stay safe

Joe

Hi Zaxx.

I can well remember when we were given a similar diagnosis of a rare prostate cancer with distant metastasis in July 2020. Like you we had many tears and were in a state of shock when we saw the oncologists but will never forget that they told us they could do 50%, the other 50% was down to us with having a positive attitude as well as lifestyle changes. My husband's initial prognosis was possibly 6 months but it depended on how the cancer reacted to the different treatments. Here we are in 2024 and still going strong and with a good quality of life, albeit different from what we had initially expected. Yes it has been a rollercoaster as we have gone through different treatments but are reassured when the experts say that they still have more tools in the toolbox for further down the line. Your attitude to 'kick arse' is brilliant and just what is needed.

Can I pick up on what sounds like leg and foot oedema. My husband had the same when he first went on to hormone therapy - this was as a result of the lymph nodes not being able to clear the debris from killing the cancer cells fast enough and it disappeared after about a month. The same thing happened again at the end of chemotherapy. We were told to keep the leg elevated when sitting, but exercise is also important. We also kept the area well moisturised with Vaseline with aloe vera, plus massaged it twice daily. Luckily my husband 's osteopath is also trained to do the right lymph system massage which helped. There are also compression stockings if necessary but you would need to be measured for them. Hopefully it will soon clear up for you but make sure your medical team knows about it.

Please come back with any questions, no matter how small or silly you might think them as we have all asked them.

Best wishes and hugs to you and your wife, it is very much a couples journey.

Hi Zaxx,

Sorry to hear about your result, it's a terrible blow and it's hard to get your head around I know. There is a point where you have to stop crying and absolutely kick some arse!!! That's best attitude. You are on HT so it will be shrinking back, You are young and naturally fit, so you have lot's to fight with and there's some great treatments to be had. In this fast changing world there are always new options and combinations of drugs and most importantly we are all here for you.

Best wishes to you and your wife.

Thank you for all the replies everyone. It is nice to hear that there are couple of people out there in similar situations (not that it is nice for any of us want to be dealing with this).

The hormones seem to be having an effect. I was taking regular pain killers to help manage the pain in my lower back and pelvis which stopped me sitting comfortably and stopped me sleeping. But since starting them, I haven't been taking the pain killers as much, especially since the injection. So small victories. One small side effect of the hormones (which I wasn't expecting, but makes sense) which has given my wife, sister and mum a little bit of a laugh is my nipples are more tender. Anyone else experience this?

The waiting for the next appointment (even just a few days) is a killer. The referral went through last week, so we are hoping to get our first appointment with Oncology very soon. My wife has already threatened to start busting heads if things don't move forward (and she can be quite scary and persuasive when she needs to be).

I have picked myself up a little notebook so I can make notes and record all the different phone numbers of the different people we end up talking to.

Regarding the oedema, as soon as my wife (who is a vet, so very medically minded and clued up with what is happening with me) noticed it, she made sure any time I was sat on the sofa or laid on the bed, that I had my leg raised up and would give it a rub and a massage. It has definitely improved this last week with the odd small flare up when I did a bit to much.

We both had a bit of a massive wobble this weekend as the information was finally processed and the emotions took over. Everything about this situation doesn't seem fair. First I get prostate cancer at an age you wouldn't expect and then it turns out to be the worst type and super hard to treat and it means I might not be here in 12 months. What a pile of crap. But as others have said, my age and health will play a big part in how well my treatments go and how long I can hold on for, so that is one thing I am clinging to.

I will say that my work has been really supportive of my situation. I have been very open with them about what is going on and the findings from the tests and the various meeting discussions. Even though I have only been with them since September they have offered help with getting me set up to work from home, made it clear that if I need to take a break from things then it is perfectly fine, they are always asking how I am doing and provided links to company support information. Everyone from my colleagues in my team to the business director are being so supportive.

Cheers.

Zaxx,

After the initial shock you have absolutely got the right idea to hit the PCa hard.  Yes a few wobbles but together you will get through this.

When I first went onto Zoladex (Goserelin) 6 years ago, I found that jogging was quite painful with sore nipples, but this went away after a year or two.

Good luck,  David