Gleason 10 and low PSA at diagnosis. Now is it under control? concerned about back pain

Hello Phitowel and welcome to the forum though so sorry to hear of your husbands diagnosis, like you i am gleason 9/10 with a very aggressive cancer and a low initial PSA of 7.2, No surgery for me either so HT + RT, i also have a non secreting PCa ie intraductal, so the PSA number is less important than with a adeocarcinoma PCa, so to get the full picture of how treatment is working a scan is helpful, I too have a bad back, double fracture and osteoarthritis which was aggravated for a couple of months by RT+HT. take care.

Eddie

Hello eddiel , thanks for your reply!

The doctor said that the PSA is reliable also in low PSA secreting cancers. In other words, she said that all the prostate carcinomas secretes a certain amount of PSA, that in some aggressive forms can be very very small. So, as long as the PSA is decreasing and remains undetectable there is no reason to worry about.

Btw, what did they say about your back pain? Is it related to the HT?

Thank you! 

Hello Phitowel.

My husband is in a similar situation in that he is a very low secreter with lymph node involvement but T4, Gleason 9 and very aggressive so not curable but treatable. He has been on HT since diagnosis. We have been told the same, that provided the PSA is declining or remains stable then there is nothing to worry about. He also had radiotherapy to the whole prostate area over 3 years ago and so far all is well in this area. Hubby also has distant mets and these cause the PSA to rise slightly on each occasion for 3 consecutive tests at 18 monthly intervals, so that prompts further investigation with PSMA PET scans and a change in treatment. We are fortunate in Greece that we are able to have MRI scans every 3 months and when there is a PSA rise these correlate with an increase in distant met tumour size and enlarged lymph nodes around it. He also has CT scans to the chest area every 6 months to check that there is no further mets developing. His monitoring so regularly is because of the distant mets which are not treatable by radiotherapy but also in a very rare position behind the pancreas.

Lower back and hip pain increased after HT started but so far is not associated with any spread to the bones. My husband sees an osteopath at three weekly intervals and she says it is muscular and provides a lot of relief by both manipulation and physiotherapy.

Hi Pitowel,

I am not part of the MacMillan team, just another guy with PC. There way more experienced people in this forum who can give you better advice than me. I am two years down the track, had Robotic surgery, Salvage Radiation and HT. The information below is based on my own research and relates to my type of PC. This may not at all apply to your husband. 

After two years I understand PC is not that straight forward. We are all different, some of us have Acinar Adenocarcinoma (Around 96%), or Mix Ductal Adenocarcinoma (Under 5%) or Pure Ductal Adenocarcinoma (Under 1%). (Please do not hold me to these numbers).Then there is several other curve balls all behaving slightly differently, such as Intraductal Invasion, Extraprostatic Extension, etc.

PSA scores appears to be lower if DAC is present and may not not necessarily rise and therefor may not necessary be a reliable indicator. The reason I am saying this is to listen to your body and he sees changes in pain levels of he has concerns raise it with the medical team.  

What did the Pathology Report say? 

Kind Regards

Munster