My last PSA was now 2.4.It's doubled and only ever increased since my first treatments.
My oncologist WILL NOT get me a pmsa pet scan....
For me, I think there is spread, oncologist said they would be concerned until PSA results got to 2.0
Now it's over that and the trend goes up
May23 0.08
Dec23 0.25
Feb24 0.44
June24 0.58
Sep24 1.1
Dec24 2.4
You could try asking one of the help people found on the prostate cancer uk website - they will be able to tell you whether your oncologist is doing the right thing or whether you are entitled to a second opinion via the NHS I think.
I think there's tall Allen, but he's not added a reply and not sure how we do this?
I’m also in the U.K. and concerned about limitations to our care with the NHS, which however has so far been great for me. I wonder if you should ask for a second opinion at a centre of excellence - Marsden, Christie? Good luck.
You could try messaging TA directly. I don't think he will mind. I am not sure if he will be aware of the protocol in the UK but he will probably have an opinion on whether the MO is in the wrong.
Prostate cancer UK will know the protocol and they are very helpful. Nurses I think - if I am thinking of the correct organisation.
If TA thinks there should be a scan then you can push the NHS or maybe chase a private scan. Dr Sen in India is very well thought of.
Get a new MO! My PSA was climbing, and when it hit 1.14 my MO ordered a PSMA/CT Pet scan. Found TWO very avid abdominal lymph nodes. Had SBRT to both, five days each. PSA dropped to 0.20 ninety days later, then to 0.12 at six months. Hoping trend continues.
Find a new doc, get the scan. You’re still young enough to benefit from current technology - don’t let a biased or $ limited doctor shorten your life! Good luck!
your psa is still VERY LOW so stop worrying so much and live !!!
Hmmm! He is 52 with rising PSA so he needs to get some good advice from a specialist centre.
Your right.it's still low.
You'd have been even more righty right right when it was 0.09.
But it was the oncologist who said they wouldn't be concerned til it hit 2.0...
So I think with the upward pattern and hitting 2 I think I have cause for concern?
But I'm 52 with kids under 18, so I'm trying stay informed.
Pragmatic is ok
Sounds like your oncologist is tricky. Where in the uk are you?
Can I suggest you ask your GP to get you a second opinion - to which you are quite entitled. You could ask for UCL or the Marsden or the Christie in Manchester, or if you are in Scotland, Edinburgh (Cancer centre is at the Western general Hospital). Plenty to choose from.
Given your age I think that increases the imperative to get an opinion on your management from a specialist centre.
You had RT. According to NCCN guidelines, recurrence after RT is defined when PSA is 2.0 ng/mL above nadir. Your nadir was 0.08, so you have a recurrence after RT.
Your PSA doubling time is quite short. You should try to do something to lower it. You should try to push for PSMA.
You have in your bio that you couldn't handle Xtandi's side effects. There are also other 2nd-generation antiandrogens like Zytiga (abiraterone), Erleada (apalutamide), Nubeqa (darolutamide). Maybe you could handle one of these better than Xtandi. 2nd generation antiandrogens are much better than 1st generation ones (Casodex (bicalutamide), ...).
I had a severe reaction to Erleada. Zytiga has been a breeze and it’s been working.
Unfortunately, that's the state of the NHS now. Despite the extra billions poured in, those seem to have been swallowed up in huge salary increases for the doctors and there's not the money now for such things as PSMA PET scans. I had to go privately to get a PSMA PET scan and the subsequent RT. And don't get me started on the approach of the local surgery to PSA testing once you're past 70.
Certainly get a second opinion. If your stonewalled and still feel you would want the scan, then an NHS University Hospital that undertakes private work (£3000 ish) would be your best approach as the results are 'in house' so to speak for forwarding to your MO. If money is an issue there are centres in Europe that are far cheaper that you could have a city break and still be quids in!
Hi Mrtroxley. I see your in the UK. I was in your position 30 months ago. My oncologist told me no scans until PSA was above 4. PSA test was every 3 to 4 months. I had a test & psa was 3.8 so had to wait another 4 months to test and psa was 5.6. Then I was referred for a psa pet ct scan in Oxford. Results were bad, over 15 mets above and below diaphragm, about as bad as it gets. I was on chemo within the month and my psa dropped to 0.09 and is hovering around that for a year now. Keep pushing and do your best to time your psa to give you a result above 4.0 From your results your next test will likely be above 4.0 and then you should get your psa scan. In the UK the NHS Dr rules. Only other option is go private. If money is tight consider India for private treatment.
I'm sorry to hear your situation.
I took the liberty of plotting your PSA data, which shows an accellerating increase in the PSA. Your doubling time is very short, ~ 3 months, which means that a PCa tumor is growing. I projected the growth out another 3 months and your PSA will be ~ 6 at the next test in March, 2025.
You should start now to get ready to do SBRT by scheduling an appt. with a Radiation Oncologist (RO). And, get a new MO who will order the PSMA-PET scan and an MRI ASAP that the SBRT folks will use to contour the radiation treatment according to where your tumor is located.
Best of luck !
Thank you.That's awesome.
I think you may have actually taken more time thinking about my situation than my oncologist.
Graph looks great(although very worrying and looks like where I expect it to be in 3 months aswell.
Feeling a bit hopeless and not sure how long I've got at this rate.
3 months would get me up to my boys 18th birthday...
I've started urinating blood again similar to when first diagnosed, so I'm presuming the prostate tumour continues to grow.
Heamotologist have given me a appointment for camera down ureatha.
Oncologist says they can see if there's spread? Also happy give me another bone scan(had 2 months ago??)to see if any spread????
Which is a contradiction to why she won't give me pmsa pet scan????
I've had MRI to pelvis(prostate tumour) and leak into bone with metasiss.
Gleason 9 prostate cores tested.
That's it for tests......
Not very thorough considering it's stage4 ...
My pleasure.
What did the MRI find?
Are you considering doing RT (i.e., SBRT) ?
Bob in New Mexico
You may want to research taking a daily Dutasteride pill as a way of slowing down the whole process and buying time. My PSA went from 10 to 2.4 while on Dutasteride monotherapy after 5 months, with no other treatment. MRI studies have proven that Dutasteride physically shrinks PCa tumors by 30% after 6 months, compared to a 17% net growth in tumor size for men on Placebo during the same time period. It's not a "cure", but it will slow down the growth rate and buy you some significant time. Unfortunately, 15-30% of men are non-responders, which may partially explain why it's not used more often to treat PCa. It is FDA approved to treat male pattern baldness by reducing DHT by >95% (remember that DHT is 10 times more potent than T).
Both finasteride and dutasteride reduced the incidence of lower grade PCa tumors, but significantly increased the incidence of Gleason high grade PCa tumors without a significant difference in survival rates. The issues concerning safety and the lack of evidence that either finasteride or dutasteride reduced incidence of high grade PCa led to strong and overwhelming disapproval of these drugs for chemoprevention of PCa by the panel of scientists and medical experts.
That finding was reported 22 years ago, and that one study was later debunked by numerous follow-on studies and subsequent analyses. More recent studies have not been able to replicate those old, misleading results. I wouldn't have taken it myself if I had thought it would harm me.
As I said, it is not a "cure", but it does slow down the progression of the disease significantly, which many men can benefit from.
consider qualifying all of your comments in that you are not a doctor and you are unsure of the impact on others. Consider including the risks and if stated risks have been debunked, show the evidence. If the drug were effective on high-grade tumors, we would all be using it. Prove me wrong. But I'll acknowledge that you suggested he research it vs giving it as medical advice so that's appreciated.
Thank you for your comments.
Up to 30% of men with PCa don't respond to Dustasteride, for some unknown reason. That, plus the black box warning in the US (not in the UK or Europe), makes some men hesitant. Those are two main reasons why it's not used more often, despite many successful, recent positive studies showing effectiveness on all grades of tumors.
Yes, people need to do their own research. I have over 30 studies (.pdfs) about Dutasteride that people are welcome to ask me for copies of.
I have a Ph.D., but I am not a Medical Doctor.
Mrtoxely's bio says that he already had "5 x Radio therapy".
Thanks. I forgot to look at his Bio.
Mrtroxley
I am very sorry to hear about your doubling issues.
I have posted more that once that when it comes to Medical issues, we need to be our own advocates. If it just don't seem right, goes against what you read as standard of care, or have reached the point that you do not feel you are getting adequate care for what every reason.
It is just plan time to move on.
I personally have done well with Medical Oncologists, but have fired Primary care Physicians, Cardiologists, and Dermatologists over the years. Each time, I have have done some research beforehand and eventually gotten a physician in whatever specialty noted above that not only helps me but also explains what he is doing and what the results are, and has a caring manner.
Best wishes in your journey.
Are any of us ok to reach out to an advocate on here for my next steps?Ie tall Paul or others advice?
I’m in New Zealand and oncologist got me a scan when PSA was about 2.0. Well worth it as showed 3 new Mets which I then had radiated. Low psa doesn’t mean no activity unfortunately
If I recall 2.0 is the threshold to fire both barrels....Right now I'm in a terrible mood (not about Pca) and hope you get what you need from the doctor. If you don't, kick his ass for me.....
Good Luck, Good Health and Good Humor.
j-o-h-n
Sucks to be in socialized healthcare? Hahahaha, I live in the Netherlands where I pay about 1500 euros a year for our mandatory health insurance . All treatments covered. Got two PSMA Pet scans during 10 rounds of Cabizetaxel. One midway, one at the end.
I read in another post that someone wished he had money for treatments but he didn’t want to dip into what he saved because he would need it for his wife’s later years. So what’s worse ?
What reason was given for no PSMA scan? It's important in the NHS in my experience to determine if it's a funding/availablity issue or a clinically driven decision. They don't always say unless you ask. If it would change tx then you should try and get done privately perhaps. If it's not thought to be clinically helpful then ask why not and ask for a second opinion at the Marsden. If they think PSMA scan might change tx they might offer one. The advice about talking to the Prostate Cancer UK helpline is also useful. Just a phonecall away and might help. Good luck.
Just to add - there is no mention in your bio of Abiraterone? There are NICE rules about not having it after xtandi but if you only had 2 weeks of this and had to give up because of intolerance Abiraterone can be offered (from a funding point of view). I don't know if this is clinically still an option for you but it's perhaps worth asking the question of your oncologist. . TA here might know.
so what is your MO waiting for?
Take that as a "Nothing to worry about" and live it up until something else comes around.
Possible uptake after pet/scan but PSA is still 0.01?.
PSA rising - When to get a PSMA PET scan?
Is PSMA PET Scan worth it when PSA<0.2
clear PSMA scan but PSA still rising 
