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Hi all, I'm newly diagnosed with Prostate cancer

User
Posted 20 Apr 2024 at 01:52

Originally Posted by: Online Community Member
I'm less than convinced and would have been happier with 42 again or a little bit higher.


Must be the first time anyone here has wished for a higher psa result!


I reckon the 32 is probably fine.


Jules

User
Posted 26 Apr 2024 at 14:34

Minor update.


Finished the Bical and am now 2 weeks into the Prostrap, noticeably more tired and have taken to having an afternoon siesta, hopefully this phase will pass.


I have a private consultation for which I will be charged £300 with a Radiologist in May and to discuss options re Abiraterone and will also be confirming RT treatment and schedule.


I filled in a form to request a meeting with my MP. He has a decent track record of speaking out re Prostate cancer and may well be aware of the current situation re NICE and Abiraterone, but I thought it worth  seeing him in person. Downside being that like many MPs he has understandably switched away from holding surgeries and has suggested meeting at my house, so it looks like I'm gonna have to spend a bit of time getting the house into a reasonable state. I'm reminded of the kind of questions ya used to get in O level English exams. 


Q1 Imagine Her Majesty the Queen was calling for tea at your house, what preparations would you make?

Edited by member 27 Apr 2024 at 09:30  | Reason: Not specified

User
Posted 26 Apr 2024 at 15:10

Q1 Imagine Her Majesty the Queen was calling for tea at your house, what preparations would you make?


A1. I would definitely move the underwear I left to soak in the bidet. After discussing national debt and world peace I'd ask if she just uses her bidet for pre-soaking laundry, or if the french president had told her any other uses.


p.s. I know it's KC III now, so perhaps Camilla does the laundry stuff, and KC just has to put the bins out.

Dave

User
Posted 12 May 2024 at 12:14

I hate gardening and I hate DIY!


Maybe I'm yet to reach the age where I can look proudly upon a well trimmed hedge or an immaculately wood stained shed or maybe I'm just a lazy sod.


However some tasks are unavoidable hence yesterday I found myself on the roof of a building I have an interest in applying coats of rubber roof paint, it seems to be good stuff, it's definitely water proof, but seems to be turps, white spirit and acetone proof as well.


Not great timing, as yesterday I had the meeting with a consultant and today I had a meeting with my MP as referenced in my last post.


I stopped using lifts many years ago and tend to attack flights of stairs with Vigour. Nova Health care are situated on the 4th floor of St James's Hospital, not a problem, I reached the 4th floor and took a few seconds to compose myself before going through the double door.


“Did you use the stairs?”, the receptionist enquired cheerfully as I approached the desk, I'm clearly not as fit as I thought... I filled in a short form and a medic gestured me to a side room to take my vitals.


He sounded French or similar and when I apologised for the paint on my hands he said that he thought it was a tattoo, which makes me think there must be a lot of seriously s*** tattoos in France.


He put the blood pressure band around my arm and the heart monitor clip on my finger, the dial immediately jumped up to 3 digits and he looked a little puzzled.


“I've just ran up the stairs”, I explained


“Why?” he said accompanied by a Gallic shrug and using a similar tone of voice to super full bladder lady.


He decided to take a blood sample first before taking the heart and blood pressure readings, which by then had returned to normal.


The consultant's office was spacious with a nice view of the city centre. She asked me to relate my story and was checking it against her records. She showed me an image of my prostate from the MRI scan and explained that although I was deemed high risk because of my initial PSA the tumour in my prostate was fairly small, easily locatable, of intermediate grade and she was confident of treating it using Brachytherapy which she specialises in. She went through the planned procedure and confirmed she would also be planning the EBRT. She opinioned that my desire to have the pelvic lymph nodes radiated was borderline overtreatment and that another option would be to treat lymph nodes later if cancer appeared there, This surprised me as I'd not heard of anyone on the forum been told similar and the standard mantra seems to be that initial treatment offers the best chance of something approaching a cure. Perhaps attitudes are changing or perhaps she was influenced by the addition of Abiraterone to my ADT.


I started a thread about Abiraterone in the general section of the forum and will be adding more details there, So short version is that it will be costing via Nova Healthcare £520 per month. This includes cost of the drug itself plus extra testing that will be needed as it has been associated with impaired liver function and blood pressure issues and I was specifically told that it wouldn't be tolerated with my level of alcohol consumption which is approx 35-40 units per week..


...but that's for another day is I haven't even got the prescription yet and I'm off to the pub to watch the first leg of the play-offs, I will post about my meeting with the MP and update the Abiraterone thread tomorrow, hangover permitting.

Edited by member 17 May 2024 at 12:36  | Reason: Not specified

User
Posted 12 May 2024 at 13:18

Reminds me that I need to get up on my roof to see if I can spot the source of an occasional leak. Flat roof which was firbre glassed so shouldn’t ever leak unless the cowboys didn’t apply it properly or screwed up the join with the neighbours ancient felt.


I’ve probably been in that same orifice in Jimmys when I was consulted about my brachy and EBRT options. I seem to remember having to fill in a mountain of forms about my sex capabilities. And I took the stairs too, much to the surprise of a guy I sought directions from. Good luck with your choice of treatment options.


Just watching the play-offs first leg, it’s 0-0, half time and I’m bored out my head. But guess that Leeds fans will take that as job done so far.

User
Posted 16 May 2024 at 13:27

Just a couple of bits connected to my last post.


 


I mentioned that my consultant thought me opting to radiate the pelvic nodes as possibly overtreatment which surprised me a little and she did reference the Indian study that I'd posted earlier in the thread, which indicated some benefit in high risk patients.


 


Prostate-Only Versus Whole-Pelvic Radiation Therapy in High-Risk and Very High-Risk Prostate Cancer (POP-RT): Outcomes From Phase III Randomized Controlled Trial | Journal of Clinical Oncology (ascopubs.org)


 


Which gave me an opportunity to ask a couple of questions regarding a trial that she'd been involved with, obviously this meant me owning up to having googled her, but I dare say she's used to it. I hope she didn't google me!


 


This is the trial


 


ASCENDE-RT*: A multicenter, randomized trial of dose-escalated external beam radiation therapy (EBRT-B) versus low-dose-rate brachytherapy (LDR-B) for men with unfavorable-risk localized prostate cancer. | Journal of Clinical Oncology (ascopubs.org)


 


It's a comparison of LDR boost as opposed to EBRT boost, so not strictly relevant to me as I'll be receiving HDR, but the part of the trial that intrigued me was that all patients received 8 months HT before RT, this seemed a bit strange to me as perhaps some of the patients cancer might have developed Hormone resistance on this timescale, but she explained that the head of the trial felt 8 months the optimum period as it allowed for maximum shrinkage of tumours which he favoured.


I suppose it confirms what we already know there are very differing opinions on the best way to treat Pca! My HDR is booked in for August with EBRT to commence 2 weeks afterwards and the Abiraterone arrived by courier yesterday in a fancy Nova Healthcare carrier bag.


 


We tend to be a bit cynical about MPs these days, expenses, cash for questions etc., but I'd like to think most at least start with the correct intentions, serving the community and improving the country.


Mine arrived promptly in a modest SUV but an immaculately ironed white shirt!


He has a good knowledge of prostate cancer, but wasn't aware of the situation re Abiraterone. He listened to me drone on for 10 minutes or so, asked a couple of pertinent questions and said he will write to both NICE and the Minister for Health.


 


2nd leg of the play-offs tonight Bob, I'm confident we'll beat Norwich, but doubt it will be much of a spectacle for neutrals.


 


 


 


 

 
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