Scared newcomer

Hi Daniel DP857864 

Welcome to the forums although im sorry you have found yourself here. The forum is split into different cancer types. I have put a link below, if you have a scroll through and join and post in the one for your cancer type you will be able to chat with people in the same situation as you. I had a different cancer to you but found my little section very helpful and supportive. Sending hugs. Xx

community.macmillan.org.uk/cancer_types

Hello DP857864 

A warm welcome to the Macmillan Online Community although I am so sorry to find you here. i am Brian one of the Community Champion here on the Community and I am also in the 4th year of my personal Prostate Cancer journey.

The community is divided up into cancer specific groups and I would advise you to join us on the Prostate Cancer group where you will get lots of answers to your questions - here's the link you need:

Prostate cancer forum 

Once you click on the link I have provided and the page opens up, click on "join" on the black banner at the bottom of the page. Once you have joined our group you can introduced yourself in the "New Here - Say Hello" section by copying and pasting or reposting your post above.

I can assure you you are not alone with that diagnosis and we can help you along and point you in the right direction.

I look forward to "meeting" you again in our corner of the Community.

Best wishes - Brian.

Thanks Bungle1 and Millibob, I followed your kind instructions 

Hi DP857864 Daniel - we are in the same club! I am 68 - and have been diagnosed with the same. It's really frustrating because it's so rare. My Gleason is 4+4. I have been on an anti-testosterone hormone for some 5 months and my PSA has dropped from 6.9 to .4. I was due to start Radiotherapy tomorrow but am having a bit of debate with the oncologist about choices so it may slip - hopefully not by too much. Like you I am worried about two things - can this thing be successfully stopped AND how much damage will the treatment do to my body. I am still hunting around for the right forum to discuss this rare condition. Happy to share my journey re various scans - MRI,PET,CET as they hunted for mestastises etc - all the best

By the way I have found a meta analysis of interventions re DA - I don't know how you feel about reading academic papers etc - but I can send you a link or copy if you would like - to be frank it is only at this stage of my treatment that I have started to dig into some of the literature etc - its all a bit frightening!

Thanks! I am very curious about exactly what tests are useful in hunting for spread and metastasis. Also curious about how you reconciled radiotherapy with limiting damage (compared to prostatectomy, I suppose). 

I can manage with technical papers though I'm not sure I'm yet sufficiently informed to drill to that depth. A week ago, I didn't know a thing about all this. A lot of my opinions are still based on previous impressions, possibly misguided. 

Hi DP857864 I have trusted the scan process - as I said above I had whole body PET and CT scans - I was told this was to check bone and soft tissues. Both came back clear ... that was good enough for me. I have not been offered a prostatectomy. As I understand it this type of cancer is not actually in the prostate but in the seminal vesicles. I did ask whether or not an operation was possible. They said that there was a risk of leaving behind little bits of the duct which would then not be susceptible to targeted Radio Therapy. I stress that this is my understanding which may not be completely correct!