New, low psa but lots of bone pain and worried

Hi I’m not sure that the letter is actually saying much to be fair. I think it’s just saying you need further investigation because raised “pip” like bump found. A while back (Im a woman btw) I was having an unusual bleed, because I take HRT.( which can cause this)  And I had a fast track test request form for “suspected” womb cancer. I guessed this was just to outline what type of tests/ examinations and a precautionary thing. ( no cancer of course ) HRT side effect. Did you read the conversation about low testosterone and how it can pull on the “Epididymis” this can cause unusual feeling of pulling a discomfort. May be of interest to you? This may not be as you fear. You’ve had lots of tests already with no evidence so far, it maybe just that they are being very good and checking every possible thing. It’s a good thing really - a more comprehensive MOT. 

Hi Yorkshire boy , how are you getting on?  Has the pain subsided and did you get to talk to your GP?  David

Hi David

this is paul, yorkshire boy. I dont know how its happened but as i was trying to log in, it asked my username (which is different to normal) and when i put yorkshire boy i accidently missed the space so ive got a new username and lost all my messages friends everything. Ive asked macmillan support to reset everything

ive got a urology appointment on the 23rd. So 2 weeks after the urgent referral was sent. This is proving to be the longest 2 weeks of my life. although im also apprehensive for when it arrives as the urologist may tell me something im dreading.

Both physically and mentally im a mess. The rectum pain has got worse this last week. Im standing much more just to have a rest from the aching. The fact its worsening quite quickly is worrying me. 

Ive also got new pains all over my body, in my spine, in my back ribs. When i breathe i get a pain in my back. Ive also started to feel like im struggling a little breathing, its weird as my voice feels weaker and i have to actively try to make my voice louder. I seem to be getting worse very quickly which surely cant happen even with aggressive pc can it?

My shoulder pain is no better. Ive realised that if i lay in a certain position where my weight is on a specific point on my lower shoulder, i get much more pain. The pain isnt in my shoulder joint its lower more on the humerus bone which is worrying. 

ive started taking over the counter sleeping pills to help me sleep as im shattered.i just cant sleep and feel naucious as the bone pains are a constant reminder what im facing.  Im currently on 25mg amitriptyline but ive got s telephone appointment with my gp where i’ll ask for 50mg as that acts ad an anxiety med at that strength.

I dont understand how the mri without contrast on my lumber sacrum upper pelvis and coccyx came back with no concern, no bone marrow issues. Ive read mri is a good scan for bone mets but they werent looking for bone mets. Is there a chance theyve missed mets while focussing on bulging disks? 

Ive never had bph or prostatitis, so this nodule has to be cancer, and with low psa , low testosterone and a smaller nodule i worry this is an aggressive advanced variant. 

Hello Yorkshire boy 

A couple of thoughts come to mind here, well 3 in fact:

* I think it would be to your advantage to contact the urology team, let them know when you had your last MRI Scan and at which hospital and ask them to get a copy and review it.

* As your medical affairs look to become more complex make sure you have full access to your records on the NHS App.

* If you haven't already you need to start a record of all contact, telephone numbers e-mail addresses and names of everyone you come into contact with on this journey for future reference. you may well need them at some pint in the future.

best wishes - Brian

Paul (Yorkshire boy),that all sounds terrible.  I am not medically trained but it just doesn’t sound like prostate related stuff to me.  Prior to all this were you healthy?  Only 9 days to go before your appointment but if it is as bad as it sounds, perhaps 111 or A&E should be your next call.  David

Hi david

its crazy, im sure most is anxiety related but i just dont know. The pains in my back is very worrying. Its when i breathe in and expand my lungs, my breathing feels laboured but my oxmeter shows 97-98%. 

its all happening too quickly. 

Ive been watching my psa since i was 49. they were perfect my gp told me. I never knew there was an agressive variant with low psa. 3 dre’s since october and took the 3rd to feel the nodule. 
gutted. Ive just become a grandad. 

Paul (Yorkshire boy ), congratulations on becoming a grandad.  Set your sights on being around when he reaches 21.  Try and relax but if you are really in pain, talk to an expert.  I was convinced when first diagnosed that I wouldn’t make Christmas. I wrote a post The end - straight to palliative care! which might help.  David

Congratulations xxx

Hi david

love your “the end” post very uplifting. 

i will fight with everything i have. Unfortunately i dont think this is a fair fight. I think mine will be small cell neuro endocrine or one of the other rare aggressive ones that’s already spread as i have such low psa. Highest its been is 0.6 and im 54.  Plus i already have low testosterone so there isnt any armoury to fight it. 

what can i expect from the urologist next week? I know he will do another dre, check my psa for the last 6 years and check the results of the non contrast mri of my sacrum coccyx ipper pelvis. Is it a matter of just seeing him to get the prostate mri ordered? I know he would not be able to diagnose me there until an mri or even a biopsy

i can imagine if mine is the rare variant he wont have seen many scnepc. Ive read they are less than 1%. Cancer research uk states there were 1813 case of pc in my age group 50-54. So that equates to less the 18 in my age group. Another study i read suggested only 48 people diagnosed under 60 per year in the uk.

i hate this nightmare, back in october i was  in great shape, gym 3 times a week. Then i notice the coccyx pain come out of nowhere. then in the last 6 weeks with bone aches in my humerus and a nodule found and i may be looking at months to live with bone mets and god knows where else. 

Does anyone know if quite agressive bone mets that seem to be changing weekly would show in blood tests?

i seem to have bone pains everywhere. I dont know if this is normal with aggressive pc but each week i seem to get a different additional  bone pain.

Now my spine has started and it hurts to lay on it and even breathing in and out hurts my ribs.  At night is worse. Large bones like pelvis hip and humerus all feel afected. 

Ive read calcium levels or ALP can  elevate with bone mets but they are all fine and have never budged in 3 years. Heres my latest taken 2 days ago. 

calcium 2.5 mmol/L

calcium adusted level 2.28 mmol/L (range 2.2 -2,6)

ALP 53 u/L (range 30 - 150}

Serum total protein 68 g/l (range 57 - 76)

Serum inorganic phosphate 0.8mmol/l (range 0.8 - 1-5)

Serum globulin level 17 g/l. (Range 18-50)

All except globulin are within range. Ive read when globulin is high it can possible be malignancy amongst other things but mine is low and has been for 5 years.  Surely if all my bones are changing i would get some indication in my blood?