New here and worried

Hi Stumack and welcome 

In some ways I think it's good to start HT asap to stop the cancer in its tracks.

Probably what is important is the tumour size and is it anywhere near the capsule edge

If not then all looks ok especially as bone scan clear.

Anyway looks treatable with RT and potentially curable.

What is the PSA by the way

Best wishes 

Steve 

It’s not normal to get any more serious treatment before the biopsy that’s for sure. But the HT is a familiar first treatment plan. The HT will put the cancer to sleep immediately and your PSA will diminish to undetectable so yes they are telling you the truth.

My PSA was 90 and went down to nothing before I had my biopsy.

Relax.

Hello Stumack 

A warm welcome to the online Community although I am so sorry to find you joining us. You are quite correct in that HT is normally started after the biopsy - it looks like someone was keen to get you on the treatment path!! (I was started on HT the same day as my biopsy - click on my name or avatar for details). 

I don't think they are hiding anything. Acinar Adenocarcinoma is the most common type of tumor in prostate cancer and they have gone off the MRI scan to decide early HT. Mr U is right in his post - the HT is already working - so try and relax - enjoy Christmas and wait for the oncology appointment.

If you get chance you can update your profile page - to do this on your home page, click on the chair - top right, then "profile" then "edit". Once you have written something don't forget to save it. 

Feel free to ask any questions, however trivial.

Best wishes- Brian.

PSA 0.6

Sorry just seen that in your original post.

That is very low assuming u were not on HT at the time, is that the only PSA u have had.

Probably the most important thing to do is check with them on  tumour size in mm.

And is it well contained in the gland

Steve

Yeah that was only PSA since original visit to doc. The consultant did say it was unusual but not unknown to have low PSA and still have cancer. My pathology report says tumour 16mm I’m sure they mentioned possible breakthrough but difficult to remember the discussion as I was still in a bit of shock 

Some pc. can Def have a low PSA.

16mm not too bad but possibly could have broken through, even if it has just broken through still treatable/curable.

If it has then good that HT started so should have prevented it from going elsewhere.

All the best 

Steve 

Hi Stumack  - you’ve obviously done a bit of research and you’re quite right : it’s unusual.  You are a “low secreter”, with an acinar tumour (the usual prostate cancer).   However, your digital examination and your MRI showed a large / obvious mass, so the assumption may have been : low secreter + obvious/ very likely tumour = probably Gleason 9. Depending on location in the gland (felt on digital examination, so very likely on the edge and, if not, definitely affecting the gland), then the decision was made to put you on HT for safety (stops growth in its tracks). Now you have confirmation of aggressive grade (likely grade 9 was confirmed on biopsy), then they’re definitely looking at oncology. Having started you on HT, you can calm down as the tumour shrinks and the urgency is reduced so your appointment is, quite correctly, placed in February. They will devise a treatment pathway for you and I would be hopeful (now that your bone scan has come back clear) that they will have a curable pathway in mind. If, further down the line, after your (likely) radiotherapy, you will come off HT.  your issue then is that you are a “low secreter” so it will be difficult to monitor if the cancer has been fully treated (normally done with regular PSA testing, but your cancer isn’t affecting PSA in the normal manner). I suspect that, because of this, they will perform a PSMA PET scan - this would “light up” any areas of concern. Hopefully, that will come back clear and you can get on with your life.   AW

Question - I have an oncology appointment for Feb next year however I have started having pain and crepitus in my neck and worried it’s nets even though my bone scan was clear last month. Would you advise I contact my GP and if so is it likely to make them bring forward my oncology appointment or is it the case of tough it out till Feb. Worried about this new development 

Hello Stumack 

My oncology team have told me to report any new continuing pain/ache to them, however my last bone scan was almost 4 years ago. The last one I had turned out to be a shoulder rotator cuff issue.

In your case I would contact the GP first and he should be able to sort you out and if needed refer you to the oncologist.

Best wishes - Brian.