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Edward's story

A ‘potted history’ of my Prostate problems from March 2010


1. March 2010 Prostate Cancer diagnosed at MK Hospital with a PSA of 147.


2. Prescribed “Zoladex” implants every three months with watch and wait.


3. Casodex and Tomslusolin 400.


4. Weight gain because of medication leads to type 2 diabetes.


5. Lots of Urinary Tract Infections with consequent Antibiotics.


6. Cancer “escapes” from Prostate to Lymph Nodes.


7. Prescribed “Enzalutamide” in June 2015. Wonderful drug making me feel “21” again. Young Body and Young Brain. Lymph Node cancer even retreating!


8. Not very good monitoring from Hospital as promised and after Nine weeks brain went ‘berserk’. Neuro reaction!! Change of Consultants half way through the course of treatment did not help.


9. Taken off Enzalutamide and left to settle down.


10. Asked to go on Abiraterone but NHS said no!! We cannot afford it, etc.


11. PSA up and down over a long period --- anything from ‘7’ in 2010 to ‘1100’ in March 2017??


12. February 2016 --- took One ONLY session of Chemotherapy which fails miserably and sends my Blood Sugar through the ceiling. After this session in hospital, where they undoubtedly saved my life, I am permanently on Novo 30 insulin injections. Incidentally I had to admit myself (with the help of my Son and Wife) in the middle of the night to A and E. I took myself off the Chemo and Steroids because of awful side effects (Burning down the throat, etc. and my hair even fell out after three weeks (only ONE session remember). Consultant “Yes, you did the right thing”.


13. 2016 ---TURP and 4.4cm Bladder Stone removal at Milton Keynes University Hospital. Catheter taken out too early with very painful consequences when inserting a new one so I can urinate again!! Wonderful aftercare from District Nurses and my Surgery.


14. UTIs stop!! Wonderful job done by surgeon --- operation took 2 hours instead of expected 30 to 40 minutes!


15. CT and MRI scans show cancer is moving again --- this time to the neck of the entrance to the bladder.


16. Off to Churchill Hospital in Oxford to see if there are any trials I can go on? Not really, but they will keep me in mind if any come along.


17. Put me on Abiraterone and a steroid straight away in early May 2017. Remember they would not give it to me one year previously. This time thanks to Professor Protheroe at the Churchill.


18. PSA reduces from 1100 to 440 in four weeks --- Wow!!


19. Then get my first Urinary Tract Infection since having Bladder stone removed which stops the downward trend in the PSA --- More Antibiotics which of course make me feel like a Zombie.


20. At the moment waiting to finish my seven-day course so I can get back on track, meeting Consultant on 27th July, 2017. This time I am being monitored very well (every fortnight). Having a job to keep my weight in check but I still manage to go to work a little.


21. FINAL THOUGHTS --- Why did I worry so much and not get on with life more (I did try). NHS (in my opinion) needs an “Adolph Hitler” to get things moving --- too much paperwork and too many staff (Double the wages of existing people and reduce the workforce drastically)?? Then of course everyone would leave? However, they did save my life of course. You must be proactive and ask all the right questions! I have reached “80” so something must be going right. THE ADVANCES IN TREATMENT SINCE MY DIAGNOSIS IN 2010 HAVE BEEN MANY AND VARIED!!


PS I have been off Hypertension tablets for over 12 months now!! Perhaps I never needed them in the first place? 

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