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Newly diagnosed, the journey has begun

User
Posted 02 Nov 2020 at 11:38

Hi all, just been diagnosed last week after several years of niggles that no one could diagnose. I went from diagnosis of possible UTIs to it might be prostatitis and eventually when my PSA levels rose significantly I ended up with the mpMRI and TP Biopsy last month. I'm still coming to terms with all this, having had a heart bypass only three years ago I had hoped I've had my share of serious health issues but alas no.


My background is as follows...


I'm 50, non smoker, non drinker and average weight. I started having UTI like symptoms back in 2013 and over the next two years I had 14 episodes of these UTIs, each treated with antibiotics lasting a week to four weeks. I finally saw a consultant in 2015 who suggested prostatitis might be the cause. I had suggested this to my GP after my third or fourth UTI episode back in 2013!


Unfortunately he gave me Ciprofloxacin and I had a significant reaction to it after eight days of a six week course. I developed significant musculoskeletal issues and struggled walking and using my arms. I had tendon pains, headaches, fatigue, insomnia and developed neuropathy issues. I still have the muscle, tendon and neuropathy five years later and was diagnosed with fibromyalgia as a result. After the 2015 Cipro issues I had no further treatments for UTI/Prostate type issues and only had mild and infrequent issues, usually with needing to go more frequently at night and occasional discomfort after sex. In 2017 a whole new ball game started when I had emergency open heart surgery after suddenly developing episodes of chest pains. the GP insisted it was stress! 


My PCa journey started in 2018 when I had a PSA test after one if the milder episodes and it was 5.5. I was referred to Charing Cross and had an mpMRI that showed nothing of concern. By October 2018 my PSA was 7.5 but it was decided surveillance was best option. by May 2019 it was down to 7.2 and so surveillance was the chosen option again. In October 2019 my review appointment was cancelled and despite me chasing Charing Cross many times I never had an appointment sent to me. I was also dealing with some cardiac stuff again and the prostate appointment slipped...


Then Covid appeared and all of my appointments went on hold until September this year when I managed to get some bloods done by my GP. Disturbingly the PSA had risen to 12.9 and alarm bells rang. It took a couple of weeks but I managed to get an mpMRI and then another 17 days later I had a biopsy. Two weeks after that I had the positive diagnosis and confirmation. I'm a 4+3 localised so a few treatment options have been put to me, specifically RALP or HIFU. The goal I hope to cure by removing the cancer if all goes to plan.


So I guess I'm here for support, research, sharing experiences etc.. I'll post my questions in a separate post!

User
Posted 02 Nov 2020 at 12:23

Hi Chris


I'm sure you will find plenty of support here and will get most if not all of your questions answered.


Sounds like you have plenty of options to consider. I'm several months past surgery now and life very much back to normal. Click on my profile if you are interested to know more.


Very best of luck

User
Posted 02 Nov 2020 at 12:26

Thanks Mike, hope you're doing well. What treatment option did you go for in the end?

User
Posted 02 Nov 2020 at 12:36

Hi Chris, sorry to read about your diagnosis. I’m a little surprised your options don’t include radiotherapy. Was there a reason for that?


As Mike has said you will find plenty support and advice here. 

Ido4

User
Posted 02 Nov 2020 at 13:19

Hi Chris,


Mine was localised (diagnosed T2A but ended up T2C in the end) Gleason 3+4


I went for an open nerve sparing prostectomy.


Was very scary ( the lead up) but actually operation was fine. Recovery took a while but from about 6 weeks got progressively easier. 

User
Posted 03 Nov 2020 at 15:34

Hi Chris,


Sorry to see you joining our club and like Ido4 i am surprised Brachytherapy was not offered to you also but there may be some reason could be your young age.


Wishing you good luck with the treatment.


John.

User
Posted 03 Nov 2020 at 17:30
Interesting that HIFU was suggested though, especially with a G4 element. I hope it was explained to you that HIFU does not have great results as a primary treatment and that, if you go for that option, there is a very high chance of recurrence and needing either a repeat of the HIFU or more radical treatment or both. There is no such thing as a cure for cancer but if you are hoping for full remission, HIFU is a very odd choice to make.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Nov 2020 at 06:08

One of 3 forms of Prostatectomy or several ways of administering Radiation are the more frequent ways of treating PCa, with Focal Therapy of which HIFU is one type, used in a very small but increasing number of cases and then mostly as salvage treatment for failed Radiotherapy. There can be reasons why an individual is unsuitable for a particular form of treatment or wishes to a avoid a particular form of treatment due to possible adverse side effects. Some men decide they just want Prostate it cut out and the cancer in it gone, although if during the operation it is found that the cancer has gone where the knife can't cut , subsequent RT may still be recommended. It would be sensible to look at the pros and cons of treatments in the Tool Kit and if you think you would favour RT, ask why this was not recommended in your case. It may be because Surgery and HIFU is done by a Urologist. If you see an Oncologist, he/she may recommend RT as consultants tend to favour their own speciality. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit


 

Edited by member 05 Nov 2020 at 02:23  | Reason: to highlight link

Barry
 
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