Questions

Hello Mal CG 

Welcome back.  i have read your journey to date and we are all different. You don't give any details of your initial PSA and your TNM on your notes, just that you have gone from T3 to T4 and don't say why - i can only assume that you have had some scans and they have shown a spread to other parts of your body.

The link below is our general "cover all" list of questions-

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

For Monday's meeting I would:

* If possible take someone with you - 4 ears are better than 2.

* Have a list of questions for the Consultant.

* Yon know the Hormone Therapy is working and this reduces your PSA and stops the cancer growing. You need to ask what the next step in your treatment is and how soon can it start.

* Ask to be sent a copy of the meeting notes.

I hope the above helps - let us know how you get on.

Best wishes - Brian

My story is little bit more going for wee at night peraphs once unless beer involved .

February this year I was going in for long awaited hernia op and decide to send off for private psa test on amazon 

The company was Randox health ,psa results came back at 26.7 a day after hernia op .waited about 10 days went to see doc with results she did a finger test there and then ,told me she would have to do a nhs psa test but would refer me anyway .I asked how test went ,she said enlarged with hard lump on bottom of prostate 

Her Psa test came back at 31 and tests went on from there mri scan confirmed PC bone scan next showed no bone mets ,biopsy took about 8 weeks for test and results came back 4+5 gleason .

Next step pet scan .called in for diagnosis by urology department and told pet scan had picked up a small area in pelvic region × 1

Urology told me when I asked gleaso 9 stage 3 

Appointment with oncologist end of July said stage 4 gleason 4+5

Urology had given me a month's supply of tablets and I was given zoladex 10 .8 implant 

I had follow up psa today and will be seeing oncology Monday coming 

In the blur of the last meeting I was told something on the lines of 4 tablets a day ?and radiotherapy going fwd when suitable .no talk of chemo 

Life as gone on as more or less normal 

I am a guy who realises ,no one is getting out of here alive ,but I want to try and get what i can time and quality wise out of as many years that I have left .

Hello Mal CG 

Thank you for the further update. As you are no doubt aware a Gleason 9 score is an aggressive Prostate Cancer - welcome to my club - the Gleason 9 club!!

So your consultant has started you off on a course of Zoladex which is Hormone Therapy and this is used to stop the cancer growing. The course of 28 pills would have been Bicalutamide to stop any "PSA bounce" when you started the Hormone Therapy.

From what you have said on Monday - further Hormone Therapy may be prescribed being Apalutamide or Enzalutamide - these are the two taken in tablet form 4 times a day. it looks like you may well have caught the cancer early and if it's only spread to the pelvic region it may well be Radiotherapy to the Prostate and Pelvic areas to kill the cancer off for good.

(I had possible pelvic involvement and had Radiotherapy to my pelvic lymph nodes - you can read my journey by clicking on my avatar).

As you are now on Hormone therapy on Monday, don't forget to ask if you need a prescription for Calcium and Vitamin D tablets as Hormone therapy can weaken your bone structure.

I hope the above helps, anything else just ask.

Best wishes - Brian.

Thanks a lot

Great,thanks 

Your post sent me scurrying to my Amazon App to see the PSA tests available - would never have thought to look there.  Am glad it helped you get your diagnosis as I know some Docs are reluctant to test.  I would encourage men of 45+ to get tested at least biannually and at over 55 to get tested annually.  If they find their GP's won't do this then I now know I can tell them to get a test off Amazon as well as encourage them to go for a private PSA Test.

Good Luck with your treatment.  I found the Prostate Cancer Toolkit set of pamphlets available from Prostate Cancer UK invaluable for getting information on first steps after diagnosis and starting treatment.  It gives you a comprehensive and easy to understand description of the diagnosis process and treatments available for different stages of PCa and gives you that little bit of understanding to be able to formulate questions.  You can find these online which would be best for you as waiting to have them posted to you would take too long as your appointment is imminent.  Write these questions down and write the answers given down as well as it is easy to forget both in the consultation.  Also good to take someone with you too.  My wife always came to my consultations as she ofte came up with extra questions when listening to answers to my questions and also remembered more than I did.  I asked to be copied in on all correspondence ad to be sent copies of all test results - offering to pay an admin charge if there was one - there hasn't been to date .  If you do not have a staging ask to know it.  What you need to know is your PSA at diagnosis, Gleeson Score and staging they will look something like this - this is mine:  PSA 13  Gleeson 7 (3+4) staging T2 N0M0 though T3 staging could not be ruled out because the tumour was at the edge of the prostate so they could not guarantee that cancer cells had not escaped into the local area.

We also found 2 Cancer Charities very helpful Tenovus who called me every few weeks for 2 years to find out how i was getting on and helped with forms for claiming some benefits - I also visited them as they had an office near my cancer centre where I received my treatment, and I also made good use of the Prostate Cancer UK Specialist Nurses on their free helpline 0800 074 8383 the lines are open Mon, Tue, Thurs and Fri 9am to 6pm and on Wednesdays from 10am - 8pm.  My wife thought they were wonderful as we rang them quite often with questions when we couldn't contact my key worker at the hospital.  I also made use of the Macmillan ask a specialist on here too with help for some of the side effects from Radiotherapy. 

A PS to my first answer I am quite evangelical about telling all my male friends and relatives to get tested regularly.  Now that you have been diagnosed you can quite rightly sound off about this to them and ensure that they are aware of testing and push their GP's to test regularly.  It seems that despite whatever appears in the news and newspapers with celebrities talking about their prostate cancer diagnoses it is amazing how many men I speak to who have no idea what a PSA test is.  The earlier this cancer is diagnosed and treated the more likely it is that you will be cured of it. It is especially important to get your close male relatives, father, brothers, and sons to get tested as with your diagnosis they are I believe 3 times more likely to also get PCa.  My little brother was diagnosed 3 years after me, and I am still on at my sons and nephews to continue with testing as my Wife's brother, my brother and I had PCa they must be at a slightly higher risk.