Stage 4 at diagnosis 2y ago with Gleason 9spread in bone in pelvice and possibly elsewhere.
Had chemo and radiotherapy (to prostate)
Lupron injections 3 monthly
PSA results
May23 0.08
Dec23 0.25
Feb24 0.44
June24 0.58
Sep24 1.1
I know they are not massive PSA values, but it's an upward trajectory.
What are your thoughts on figures and ideas.
I'm not going start digging a 8x3 in the bottom of garden just yet.
BUT!
calculate the doubling time that is more important than the raw numbers
I see your in UK like me. I had the same 2 yrs ago. Oncologist refused to take action until PSA was above 4.0 Testing was 6 monthly so when tested I was upto 5.6. They then put me back on ADT and 5 sessions of Docetaxel. Refused triplet therapy which was standard in USA. After my treatment the NICE guidelines changed to recommend triplet therapy. Don't know if they reduced the PSA cut off from 4.0 to 2.0 as per USA. You can ask you oncologist what the current value is to begin active treatment. Chemo was pretty easy for me. Hot flashes are bad but the Dr just brushes them off and refuses to treat them in my case. My PSA is currently 0.09 last test and I am happy if it stays around that.
You might consider low dose estradiol patches. These can greatly improve the toxic side effects of not having any testosterone. Relieves hot flashes, protects bone density, lifts brain fog, many positive effects. Patches at 0.025 to 0.05 mg/day, changed twice weekly.
Estradiol gel can do the same thing. Just depends on preference. Look up Dr. Richard Wassersug on Youtube. He has had much to say about it, in a positive way.
Doctors don't offer it. Most doctors have never lived without testosterone, and they have NO IDEA how awful it is.
Second the low dose patches. .1mg changed twice weekly but yes got the scrip from his urologist who does hormone therapy because his two MOs were against it. But they mainly seemed uninformed. He says it has helped with the hot flashes a lot—fewer and less severe. There are scientific papers on this you can find on the internet and also has been discussed on this blog.
I already asked my GP for low dose estradiol patches but she refused when I said for hot flashes. That's an off label application and not approved by NICE so she could not prescribe. She said the USA medical was more adventurous in treatments than the UK. I am buying some Venlafaxine 75mg tabs from India that I hope will do the trick. Ive suffered greatly but UK Dr's simply don't care when it comes to discomfort and pain.
PSA of 2 and they would look to look into it.But PSA has been on the up since the initial biculamide/chemo and radiotherapy
But it's been sub 1.....
I know, I hear you. Just telling you what happened to me. I had to watch my PSA rise over a couple of years to get above 4.0 before the oncologist would move to the next treatment. The PSA test came back at 5.6 and was rising quickly at that point. They sent me to Churchill Hospital in Oxford for a PSMA PET-CT Scan. Came back with over 15 mets in lymph nodes above and below my diaphragm and one rib. That was a pretty bad prognosis because the mets were widespread. Got chemo very soon after that and now coming to 2yrs and PSA was 0.09 last test. I know it will come back but our only choice is to keep fighting it as best we can so we can live as long as possible. You are not alone. Of course, if you are well off, you can go private and have most anything you want. I am not one of the lucky few in that respect. I do wish I had private health insurance but I didn't know how discriminatory the NHS is when it comes to cancer treatment in geriatric patients as well as other illnesses in the older population. Its criminal really but we don't get any say in it. Stay in touch
I assume you're still on ADT. Your bio states you had issues with Xtandi. I guess you can try zytiga (abiraterone acetate). UK guidelines are out of my bailiwick.
Still on adt.But the PSA rises are small at mo, but there is a pattern.
They have always increased since initial biculamide, chemo and radiotherapy
Why wouldn't you move to zytiga now vs later...is there something in the guidelines preventing starting the 2nd line treatment now at PSA 1+?
Zytiga is expensive. I use Abiraterone Acetate, the generic. It is a miracle drug.
Consider these protocols:
prostatecancer.news/2023/05...
prostatecancer.news/2022/09...
Have looked.My doctor will wait til reaches 2 to do anything.
But I'd like to have confidence in what I'd like when I sit with the oncologist next.
I read the 2 articles.
Both seem to refer to prostatectomy patients
I've still got my prostate
I have tried ezalutamide at begining instead of chemotherapy, but the ezalutamide didn't agree with me side effects wise.
I think I should be concerned
I think I should start considering a response or request to my oncologist
I've not had a pmsa pet scan and will only get one if I can prove how it will change the treatment I'm offered?
What's your thoughts???
They treated recurrent patients.
if you do nothing you get nothing on the NHS, I call it NHS DIY, NICE pull the strings and Oncologist just conform as the have no funding power. Seek a trial The Christie Hospital Manchester or Royal Marsden, You can ask for a referral off your oncologist and he is obliged to do it. My husband has done the battle which has given him 16 years, but left to our local oncologist he would have been lucky to have had 5 years. If you’ve had Abiraterone you can’t have Enzalutimde, tried. Privately expensive, read my husbands bio
I'd like to push for pmsa pet scan, Oxford and royal Marsden have them???I need prove that getting pet scan would change there treatment of me.
So there radiotherapy, doxetaxel, androgen in sections, second line androgen tablets, hacking n chopping, the eeeeeeerm?????
Not really much left in the nice treatment draw!!!!!
Psa rise 
Unexpected rise in PSA
Slight PSA Rise
PSA rise
