New, low psa but lots of bone pain and worried

Hiya

My first symptoms were blood in urine and semen. I went to a uroligist and he sent me for a turp operation for enlarged prostate and they did a biopsy on a growth outside the prostate, in the seminal vesicules, at the same time. It came back as intraductal cancer. They said it was aggressive and Gleason 8 and was likely to come back after treatment. I had a bone scan and full CT scan within 2 weeks of diagnosis and luckily they were clear. So non metastatic.

Then I quickly started 9 rounds of chemo and straight after that 39 sessions of radiation to the prostate, seminal vesicules and lymph nodes. I also started serious hormone therapy at the same time and was on that for 14 months. The hormone therapy has much worse side effects than the chemo and radiation but thats another story. 

Within months of finishing the radiation my PSA was down to 0.03 which is considered undetectable. From reading Dr Google my case seems to be a bit unique as PSA very rarely goes to undetectable within 6 months. Its called the PSA nadir and is a very good sign of treatment success. So I suppose I am sort of ahead of the curve and seem to have a better chance now of long lead time to possible recurrence. Every case is different!

For peace of mind I think you really should have that bone scan. i remember clearly how relieved I was after my clear result. The aches and pains may not be what you fear most and most often they are wear and tear.

Hormone treatment tries to get rid of all your testestorone as thats what feeds the cancer cells. Thats why it is so unpleasant, in that it strips you of a lot of your manhood.  Having a low testestorone already is a plus.

Hope this has been of help?

regards

Brendan

Hi Brendan

a great help thank you. Sounds like you were very astute and going private saved future problems and possibly your life. I wish i had pushed more when my coccyx started hurting as its been 8 months. I was thinking neuroendocrine pc and didnt realise others also dont raise psa. 

did they ever state how long you may have had it?so far my 2 dre ‘s have been normal but i have a feeling a low psa of 0.6 and normal dre is hiding pc and cost me valuable time.  No blood  in my urine or semen that ive seen although i have noticed my semen has a yellowish tinge and a little watery, wierd, maybe an age thing. 

was that your first psa or had you had any before? My baseline is around 0.5, its moved up and down slightly over the last 4 years but highest its been is 0.6 and lowest is 0.45 Strangely those 2 outer numbers came within 6 months if each other before it settled back down to 0.5

yes i have very low testosterone and all that comes with it. I can see why you dont like ht.

 I think i will look around and see how much private bone scans and mri are. if they spot prostate cancer on a private mri can i jump back into the nhs quickly?  Is that what you did?

Hi Mate

I really dont think you have any cancer. If the Doc thinks you are ok from a DRE then you most probably are. Have the bone scan and you will be clear, I am almost 100% sure. You need to stop worrying as I think you are cancer free. Worry is our worst enemy.

From 

Hi

just been to my docs, he gave me a dre and unfortunately thinks he felt a tiny nodule. it was on its own.  He said a couple of mm. I have very low psa of 0.5 so if this is prostate cancer then i have a very aggressive type and would explain the pains in my shoulder as i do worry its spread quickly. 

i also have low testosterone so it may be castrate resistant too. 

i guess my question is can i have a tiny nodule in one area and a much larger cancer that has  spread in another part that he maybe cant feel. Does cancer form in multiple different places. 

hes sent me for an urgent 2 week referal to a urologist so i think he is worried too. 

i am numb. I dont know what to do with myself. I dont think i can sleep for the next 2 weeks.  ive had quite a few dre’s over the years and this is the first that felt something. I knew something wasnt right with this shoulder pain. 

I had a dre in january and everything was clear then. It nust be growing fast

Hi Yorkshire boy , that is at least a step forward although still not conclusive.  Finding a nodule doesn’t mean it is cancer but at least you are being referred on so hopefully a diagnosis soon.  We all react differently when getting test results - personally I usually am positive and know that I can’t change anything by worrying, but I do understand your current mindset.  Unfortunately as I mentioned previously, only a diagnosis is going to resolve your current situation. Good luck with the referral. David

Thanks for replying David.

im bricking it if im honest. In not sleeping as it is and this has just pushed me over the edge. While ever the dre was ok i could convince myself i was imagining it, but now there is something there i know its real. 

This shoulder pain feels right on the humerus bone. It feels different from any pain ive had in my shoulder, its not in the joint its lower on the bone and feels gnarly even when im not moving. Of course im now feeling a million other pains that im atributing this it also.

if my psa was elevated i wouldnt be as worried but because its 0.5 and stable im now thinking ive drawn the bad hand and got the aggressive neuroendocrine one (35 per 10000 cases). Plus i have low testosterone so i may have the castrate resistant variant. 

How long does it usually take a urologist to order an mri when i see him. 

Can you have a small nodule and a large cancer that has spread in the same prostate. It that usual?

how do you all cope when you first got bad news? Im struggling if im honest. I dont know what to say to the mrs when she gets home. Its too much of a coincidence to be getting these bone pains and also have a nodule. 

Hi YB

Probably the most important thing now is to have a MRI scan because that can tell u a lot.

Bone pain can be down to something else so doesn't have to be cancer, ok Dr has felt a nodule but may be nothing or if cancer could just be low grade.

As I said initially push for a MRI when U can

Best wishes 

Steve 

 Yorkshire boy , you ask how we coped with bad news?  Well I guess we all coped in our own ways.  Personally I was given 5 years as a likely timescale, so I decided that I would not put off things that I wanted to do.  I got my affairs into order, moved house, went on lovely holidays and enjoyed the family.  Life is for living and that’s what I wanted to do. I drank a toast on my 5th anniversary from diagnosis and have a toast each year!  You will be fine.  David

Thanks guys

so ive been thinking

its 2 weeks to see an nhs urologist using the pathway. How long is it normally to have a prostate mri and then get the results. Am i talking 6 weeks total do you think?