low psa, normal dre, bone pain in hips and coccyx

Thanks for replying.

I hope you are right 

there are some instances, though rare, something like 1-2%,  where an aggressive variant doesn't show on a psa test. I also worry the dre was conducted by a standard GP and not a urologist who probably does dre 15x per day. Maybe he missed something. 

Something is definitely wrong in my pelvic region. Strangely my coccyx doesnt hurt at all when im stood up and not sitting on it and  my hips only hurt when im laid sidewards on them. Its like pressure has to be there on the bone. its now been here over 6 months. 

Thanks

Hi

thanks for replying

i hope it is arthritis as that is a better outcome that this. I don’t know how low my testosterone is or how long it’s been low but they had mentioned starting me on testogel replacement therapy. I need to find out if it’s prostate cancer before I go near that stuff. 

can you get arthritis in the coccyx? It hurts so much when I press it. 
I am surprised how much it sticks out and easily felt it is. It literally just hangs there. I’m not surprised many people break theirs. 

the reason I seem to be fixated with this is that it definitely feels something is going on around my coccyx and back passage when I’m sat down. I have a fullness in my rectum which makes me think there is a problem with my prostate.

Thanks

Edited by member 10 Jan 2025 at 21:48  | Reason: Spelling

Hi again Paul.

Funnily enough since you started this thread, my lower back has been really playing up. Which is why I'm awake and posting on here at this unearthly time in the morning. 🙂

None of us are medically trained but we do have pretty good knowledge on prostate cancer and the chances of your symptoms being advanced PCa are remote.

I found an NHS link on coccyx problems, may be this will help.

https://www.nhs.uk/conditions/tailbone-coccyx-pain/

I hope that you get the problem sorted. 👍

I have an appointment with my GP in the morning. How should i approach this to best ensure i get taken seriously. I will ask for another dre tomorrow as a starter. If the GP is still adamant he cant feel anything how do i get an mri?

Will i need to see a urologist first or can my gp order one? Im not sure how this works.

As a last resort, I am in the westfield health scheme so can claim back any consultation fees but i have to get a referral from my GP to see one. I believe if i get my GP to refer me i can get a consultation who can then get me an mri. I am assuming its a urologist i need to see?

Thanks

Obviously i believe there is something else going on so i am going down the private consultant route to have an mri or bone scan on my pelvis and lower back. I’ll update once i have the scans. Thank you to whoever read and commented.

Hi you mentioned in an earlier post in this thread that you were offered testosterone gel - did you not want to take up this offer ? Low testosterone is linked to prostate cancer so exogenous testosterone could potentially prevent prostate cancer  also low testosterone will result in lower estrogen and arthritis for those who are prone to arthritis. Have you had your testosterone levels tested ?

Edited by member 18 Feb 2025 at 08:18  | Reason: Not specified

Hi

Quick update. I had an mri today. Unfortunately it wasnt for my prostate, it was via the nhs and was to check lumber pelvis sacrum and tailbone. It was the only one i could get on the nhs as they wont give me a prostate mri due to normal psa and normal dre. As its the nhs it will be 2 to 6 weeks before i get the results. I plan on paying private for the prostate specific mri.

My tailbone still hurts and its now been 9 months since i first felt it. I dont know if im imagining it but the tip feels thicker. Its got a type of ball shape on the end thats well over a cm wide. When i look online that seems to be thicker than the norm. It still aches when i sit or lay down. No worse.

Im still getting the fullness in my rectum but only when im laid or sat down. It hasnt got any worse but no better. Im also still getting the hip and pelvis pain. Still cant get comfy when sleeping on my side.

I havent developed any new prostate symptoms, no problems peeing or ejaculating. No bowel issues either. I still have slight erectile dysfunction but ive had that over 5 years so nothing new. Like i said the fullness feeling in the rectum like im sat on a little ball is still there. 

Things hadnt really changed in the 3 months from my last message . However, i have since developed 2 more bone pains in the last month. One is in my left humerus arm bone just above my bicep. This is a very strange pain in that i sometimes get a pain even when im not moving it. Its very painful in bed and they is absolutely no way i can lay on that side. This is the most worrying pain as it hurts without any movement and is very painful when i lay on it.

Ive also developed another bone pain in the top of the left ulna bone just in the bony bit just before the elbow joint. The ulna bone doesnt hurt until i use my arm in a certain way. Its also quite painful when i push the bone on that specific point.

From reading the internet, pc mets to bone can appear in any bone but the arm bones seem to get affected less than spine pelvis hips so those would be more unusual mets i guess. My 3 main bone pains, the long bone near shoulder, the left ulna bone near elbow and the coccyx. 

If i do have the neuroendocrine highly aggressive nepc that doesnt show on psa ive read survival can be less than a year, but other than the 2 new bone pains mine hasnt got any worse in 9 months. Should i look at that as a good sign as im sure i would be much worse after at least 9 months of mets. That Humerus pain is worrying though, thats definitely a different pain to any of the others in that it hurts without movement or pressure. 

also, what can actually be seen on mri of the lumbar, pelvis, sacrum and coccyx. Would a dexa bone scan have showed more. 

Thanks

Edited by member 29 Apr 2025 at 21:32  | Reason: Not specified

yes i agree,  

this symptom below started my investigation.

the strange fullness and pressure felt up inside my rectal area felt when laid or sat down. It feels like im sat on a ball.  Ive now Had for at least 9 months that i can recall. Still have it but no more painful and still not showing on last dre. 

Pain in my lower back, hips and pelvis for 18 months

Pain in my tailbone that i can actually touch and hurts to press for 9 months. 

2 new bone pains in the shoulder and ulna  that hurt even when im not using the arm and is the most painful of all the bone pains.  Quite worrisome. 

Now with my psa being low and stable for-at least 4 years along with all the bone pains my investigation leads me to believe that if it is metastatic pc it must be an aggressive neuroendocrine prostate cancer .  Unlucky if its this as its only 1% of new cases per year

my thoughts:-

de novo neuroendocrine is rare,  1% of new cases so 500 in uk per year. Also average age at incidence is usually higher at 68 average(im 54). A large study i read lowest was 59 years old. 

I would have thought however that due to the agressiveness of nepc i would be in a worse condition than i currently am. Other than this new bone pain in my left shoulder there has been little to no progression in the last 6 months that i know of.
I would jave thought a very agressive pc would now show on a dre. 

im praying im wrong here but these bone pains arent going away and new ones starting. 

Edited by member 30 Apr 2025 at 05:33  | Reason: Not specified