Worried the cancer has spread

Hi Spud. I think it’s because it’s an aggressive T3b N1 Gleason 9 and treatable- they decided to hit it with the Chemotherapy at the start. On that diagnosis I think Chemotherapy would have been inevitable at some point.

 Alwayshope will know - but I also think with a low secretor it’s hard to keep a proper check with your PSA readings.

Best wishes - Brian.

Hi Spud.

I think that Brian is right about the chemo. It is always a toss up what to start with but because you are a low secreter it makes it more difficult to monitor you with the PSA, also you had a rapid initial rise (the same as my husband). Having a Gleason 9 along with lymph node involvement means there is a chance that the cancer could have spread via this super highway to another part of the body and these distant parts don't tend to produce the PSA protein very well and so are difficult to pick up with low secreters.Giving you chemotherapy first would attack and kill any distant cancer cells as well as the ones in the prostate and nearby lymph nodes first and then mop things up with radiotherapy later. It gets on top of the cancer more quickly than radiotherapy does.

Please remember that none of us are medically trained but base our response on personal experience. My husband is a T4, Gleason 9, Grade Group 5 low secreter but with distant metastasis so we only use the PSA as a possible indication that everything is stable but he also has 3 monthly MRI's and and a CT scan every 6 months to check that there is no further distant spread. 

The fact that you do still express PSA means that you should be eligible for a PSMA PET scan, if you need it, which is a lot more sensitive at picking up if the cancer is becoming active again and will show exactly where it is so that you can have targeted therapy. There are a range of hormone therapies available now which are proving very effective plus additional treatments further down the line if necessary including more chemotherapy, radiotherapy, immunotherapy, so plenty of options. 

It is our first time doing it so we haven’t had to give one up before. Euston is a delight, both my wife and myself have cancer and he has been a brilliant support and distraction during our treatments. He also is familiar with many parts of ARI and Maggies at Aberdeen and gets a lovely welcome from staff and patients when he accompanies for appointments or treatments

Hi Spud,

Hope things go ok for you. Have you got a Maggies near to you? I find them really supportive, even if I just want a space to sit and have a quiet cuppa away from all things cancer in the hospital

Hi Brian,

Thanks yet again.

I’ve kept you busy today.

When I was diagnosed my oncologist said that It wasn’t curable.

I had all the normal tests and scans.

But I did end up having a TURP and this is when they found out that every chip (sample) was cancerous 

take care Brian

kind regards. 

Spud

DCL

Hi and thank you for your pointer for Maggie’s.

 I do go over there weekly and have done since chemo days.

thanks again 

take care

Spud

Hello Spuduknow  It’s no problem. I am having a weekend off. Your first reply was posted in Calais and I am now heading north at Peterborough Services so I am already busy

Those chips from a TURP got me upgraded from. A Gleason 7 to a Gleason 9 so I am in the same club.

You take care and speak soon

Best wishes - Brian.

Alwayhope

Wow the information you have given is fantastic and all makes sense.

She did warn me last time that if the PSA starts to rise that she would put me back on my Prostap Hormone injections.

thanks again, you have all been so kind to me as you all are with others.

take care

Spud

”You don’t know how Strong you are,

until being Strong is your only choice”

Bob Marley