PSA rising but scans clear: I was... - Advanced Prostate...

Advanced Prostate Cancer
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PSA rising but scans clear

Macscot
Macscot
34 Replies

I was diagnosed with PSA 20 and Gleaason 4+5 Jan. 2016. Sole treatment is ADT (decpeptyl) which I have tolerated very well. Psa rapidly dropped to 0 .1 and stayed tere for 2 years then began to rise and is now 9.19. 6 months ago my urologist proposed abiraterone but as there had been no progression on the scans he decided to wait. Scans this month : CT no sign of lymph or organ involvement as it has been from diagnosis - Bone scan -no lesions, in fact 2 lesions visible on prevoius scans are no longer visible. My urologist says scans are more reliable signals than PSA and does not think any further reatment is necessary at present. Has anyone had a similar experience or thoughts on this apparent anomaly?

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Magnus1964

I have experienced this several times. PSA going up but all scans clear. But I always went on some treatment when it happened. You might consider getting a second opinion. When your PSA goes up in repeated tests something is going on.

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Macscot
Macscot
in reply to Magnus1964

As I am treated by the Spanish health service, I am not sure how to get a second opinion, but I also think something must be going on so I will find out. Many thanks for your help.

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Magnus1964
Magnus1964
in reply to Macscot

I don't know how the Spanish health system works. I would start by contacting a patient advocate in the system.

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Fairwind

A Urologist might be out of his depth..Time to see a Medical Oncologist. Also, there are different types of scans. Try for one of the newer scanning techniques to spot early metastasis. You might ask about adding Casodex to your ADT. This old standby is cheap and can give surprising results... Gleason 9 requires a maximum effort for successful treatment..Stay on top of it...PSA doubling time is more important than the actual number..

You must be in the UK. In the States, decpeptyl is called Trelstar, a drug similar to Lupron..

4 likes
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Macscot
Macscot
in reply to Fairwind

THAnk yo for you reply. I am Scottish and live in Spain so you are right about me not being in the U.S.A.. Casodex looks like a fairly simple avenue to go down. I got it for a few weeks before and after my first injection to prevent testosterone flair. I will follow it up.

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Tall_Allen

PSA is not always a good biomarker. Sometimes bone alkaline phosphatase is better. The bone lesions that are no longer visible means that your type of prostate cancer is responsive to hormone therapy. In the UK, you can't get abiraterone until there is progression, but you can get docetaxel. A recent analysis of the STAMPEDE clinical trial showed docetaxel is beneficial in all metastatic men who have not had their prostates treated. There may also be a benefit in radiation to the prostate if you only had the two bone lesions. These possibilities should be discussed with your oncologist.

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Macscot
Macscot
in reply to Tall_Allen

Many thanks for this. You have reassured me that the urologist has good reasoning behind his decision. Last reading of alkaline phosphatase was 67 with normal range being 45 - 129 according to my information. I will discuss your suggestions at my next appointment in 3 months time.

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SPEEDYX

I am on lupron and zytiga since march and initial response was from taking firmagon in january psa 350 down to 22 ..since than psa rise to 39 .8 in 6 months and in September down to 39...2 recent scans show improvement and no progression...oncologist going by scans and maintaining current treatment

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Macscot
Macscot
in reply to SPEEDYX

This is helpful as my urologist seems to be on the same track as your oncologist. Mny thanks for your reply.

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tango65

Cold you get a Ga 68 PSMA PET/CT in Englands or in Germany? With a PSA around 9 these scans have a detection rate higher than 90% and they are more sensitive than Ct or Bone scans. The PSMA PET/CT could show if there are metastases, their number and location. With this information you could discuss how to proceed. It is not the standard of care but I believe it will give you more info about the cancer and it may help to decide treatment.

You could discuss the possibilities of Abiraterone plus ADT, chemo, abiraterone and radiation of the prostate and whole pelvis if there are few distant metastases or do nothing if there are not metastases.

I agree that the Urologist may be out of his depth. You need to consider in getting treated by a medical oncologist specialized in prostate cancer.

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Macscot
Macscot
in reply to tango65

I live in Spain and have no idea what kind of scans I get. However I will find out and find out about the scans you suggest and discuss your suggestions. MAny thanks

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tango65
tango65
in reply to Macscot

They may be doing Ga 68 PSMA PET/CT scans in Spain:

researchgate.net/scientific...

The main author works at:

Unidad PET/CT/MRI, CETIR ASCIRES, Esplugas de Llobregat, Barcelona, España. Electronic address: jrgarcia@cetir.es

Best of luck.,

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Kevinski65

With 2 subsequent rises in PSA abiraterone would be a good idea. If your insurance covers it. He should ad it to lupron.

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Macscot
Macscot
in reply to Kevinski65

I don't think he can prescribe abiraterone without there being mets. I am still on ADT. THankyou for your reply.

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dmt1121

As I read your post, I was struck by a couple of things. First, you said that your urologist treated you only using ADT, not radiation or performing a prostatectomy. Second, a Gleason score of 9 is typically considered aggressive cancer, so bone scans would not be a reason to terminate treatment. Most standard scans are inaccurate for PCa, especially in earlier stages. However, PSA is not a reliable sole predictor of cancer progression either.

I would highly recommend that you find a good medical oncologist working with a prostate cancer center within a teaching hospital to get a second opinion. A urologist is ill-equipped to deal with these sorts of diagnoses and treatment recommendations. I have not heard of any prostate cancer patient ending all treatment based on bone scans or PSA levels with a starting Gleason score in the 8-10 range. This disease adapts well to new treatments, so having a second option from an expert in the field may go a long way to staying ahead of it and living longer.

At best, you will confirm what you were told was correct. In addition, you will be getting someone who is an expert to provide you more information.

Good luck!

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Macscot

Apparently, it was not necessary to get more aggressive treatment as I responded well to ADT which I am still on. I will follow up your suggestion to get a medical oncologist opinion.

Confirmation that my urologist is correct would be reassuring. Many thanks for your reply.

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thevvy

Hi Macscot

I had a similar Urologist. Who you really need to see is a medical Oncologist, who specialises in prostate cancer. Urologists are fine for operations and initial diagnosis, but treatment of PCa with drugs is not their domain normally.

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Macscot
Macscot
in reply to thevvy

Several members of this fprum have also suggested a medical oncologist. Seems to be the way to go. Many thanks.

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DavidHealth

The progression you have is quite normal. ADT stops working 100% after about 2 years.

I disagree that PSA is not a good measure of what is happening. I find it a very precise guide, and the change in PSA is your main guide to choices. Remember it measures the KILL and not a cancer count. Bone measures etc. are nice, but irrelevant to the action to take.

Stating the obvious: Have you stopped doing what caused the Pca in the first place? Are you on a strict raw veggie and fruit diet? No sugar? No wheat?

Your problem now is to find the MOST GENTLE next steps. All the ones you have mentioned are not gentle at all, and will damage you. Alas, you have allowed the PSA to climb beyond diet-only control, and you need to add some help. There are 2 possibles to try, as you have just a little time to experiment:

Estrogen patches or gel can take over the ADT job. It takes a while as the Lupron type of ADT hangs around for the best part of a year, and continues to poison the system. Others on this forum have had an ADT "holiday"doing this.

Low dose Xtandi and sodium Ascorbate via IV can knock that PSA back quickly with minimal side effects. It is a much gentler solution than the Abiraterone Zytiga route, and may "buy" you several years of low PSA at low cost. I would suggest this to "hold the fort" if you go the Estrogen route.

It's all about the Immune System. THAT is what keeps you alive. Do not damage it more than you have to.

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VictoryPC

You are Brilliant Sir. You speak the Truth.

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DavidHealth

Thank you for the compliment. Just trying to help others not make the same mistakes as I did.

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VictoryPC

You will save so many if they do....

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Macscot
Macscot
in reply to DavidHealth

Many thanks for your interesting post. I take your point about diet but have not yet gone the vegan route. I do avoid sugar and wheat. Otherwise mare or less vegetarian . i will investigate your suggestions.

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spouse21

Side message to David Heath: There are a number of men on this board with high Gleason, low PSA. And my husband recently had very low PSA yet was full of new mets. So PSA is not always an indicator of what's really going on.

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GeorgesCalvez

That is quite common, cancers with a high Gleason produce proportionally less PSA for the size of the tumour than low Gleason cancers.

There is a poor correlation between the tumour mass and the amount of PSA produced from patient to patient as different cancer cell lines express the gene for producing PSA to different degrees.

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DavidHealth

I do not think that the Gleason score has much to do with it. We have about 20 "brands" of cancer at any one time (changing all the time) , and they all get killed (and grow) at different rates. There is strong evidence some brands give off more PSA when they die than others, and I am starting to suspect that later mutations tend to give off less PSA. PSA only makes sense if viewed as a measure of kill, not cell count. It is the change in PSA that has to be watched.

I believe that while the PSA is low (under 1), and the immune system is still in reasonable working order, the current bunch of mutations are "under control" and will be eliminated in the coming months (even if new mets appear they will usually be small). Of course, if the immune system has been trashed by ill-advised treatments, then a PSA of 1 simply means the immune system is not doing much killing and there is far more cancer than that low PSA indicates (and a bigger problem is coming). This is the situation after chemo - the low PSA looks good but wait a few days ...

It's all about the immune system and how much kill it is getting.

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rscic

PSMA Scan???

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AlmostnoHope

Sounds pretty typical but watch for the onset of CRPC because in all my friends it will happen after 6-9 months months of Decapeptyl. Keep an eye on it and consider intermittent use of it.

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Macscot

Many thanks. I get 3 monthly blood analysis and 6 monthly scans, so should keep on top of this.

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AlmostnoHope

That's smart...

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j-o-h-n

Get to an Oncologist who specializes in Pca asap (if possible)...

Spanish version: Hay un ratón suelto en la casa.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/28/2019 4:52 PM DST

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Macscot
Macscot
in reply to j-o-h-n

Thanks for this. Scottish version - there's a moose loose aboot this hoose - and as a kilt wearer, I can safely answer the question :- What is the difference between a kilt and a skirt? -

underwear

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j-o-h-n

Funny.... I will use that with your permission of course....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/29/2019 12:54 PM DST

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Macscot

No copyright . no problem!!!

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