They forgot about me!

Many thanks Lyn! I had never even heard of Brachytherapy before. Sounds like something to do with dinosaurs! But I'm well versed in it all now, having researched all the different treatments. Yes I think my Uro is definitely the man to see. I just hope that, as I'm still a 3+4 that AS will still be a viable option for the foreseeable future.

Thanks Gordon and Andrew! I am almost at the big 60 and yes, I have had an mpMRI. That just shew where they have to stick the needles during the biopsy I guess, as it didn't make any difference to my diagnosis and treatment options. Just that they decided to always do a template biopsy! (Ouch!) My other health conditions are type 2 diabetes, arthritis and very recently gained, sciatica! I am on the edge of obesity too, but am doing something about that, to the tune of losing about 1 pound a week. Her boss has been absent for about four weeks, but I see him tomorrow! At long last. the registrar and her nurse assistant both seemed to take a stand of feeling very sorry for me and sympathised and thrust a cup of coffee into my hand, probably to stop me screaming! I will update this post with what he tells me, after I see him (The Uro man)! Wish me luck!

Hope meeting was informative..

 Gleason is just 1 component in decision, isn't it. Your PSA has been 'steady' .  Have you had any feedback 're.  mpMRI. ?

Plenty of time and options, hopefully..  Fitter and less weight .. keep it up.  

please post update... Gordon 

You can ask for your hospital records. They're free and have to be provided within 30 days of asking (EU ruling). They will contain your precise diagnosis, scans, radiologist reports, MDT meeting reports, etc. Sometimes you have to ask for the bits you want. Things like scans are large and you probably have to specify which ones you want (my full body MRI scan is 10500 images and came on 13 CDs, but you view it using special software).

"wide beam radiotherapy" - probably mean External Beam Radiotherapy (EBRT), and it's well controlled with quite accurate targeting on modern linear accelerators.

For any radiotherapy including seed brachytherapy, there are two sets of side effects, short term, and delayed. The short term ones happen during the treatment which lasts about a year from the implant date, but is more concentrated in first 3 months. Delayed side effects are those which start some time after treatment finished - some can be temporary, some can be permanent. These are described in detail in each treatment leaflet in the Toolkit. Unfortunately, no treatments are without side effects, but if you have the choice of more than one type of treatment, you should factor in the different side effects when making your decision.

Interesting how different Drs work. I’m 57 and had no symptoms. I was referred to Urology because my PSA was slightly high. My MRI showed an anomaly and was confirmed by biopsy as local pca with Gleason 4+3. My surgeon said I had no option but surgery as he wanted to keep RT for when I’m older. HT, etc not discussed but I knew nothing then!

Had my operation 17 June and glad I did tbh. Gleason revised down post op to 3+4. Mild stress incontinence which is now virtually over after 4 months. ED is an issue but pre op I had mentally decided my order of priority: life, incontinence, ED. 

I had to fight for appointments too. My biopsy results took 6 weeks, they forgot about my catheter because nobody recorded that I hadn’t been in despite phoning in Ill the day of the appointment. I complained about two Drs, one told me I was too young for cancer as it wasn’t in the family, one lied to me that my bone scan was clear. What a waste of time and effort. Oh and my named nurse...who?

Back for follow up just before Xmas when no doubt all the anxiety will resurface.

Rob

Edited by member 23 Oct 2019 at 10:46  | Reason: additions

Lyn,

No I didn’t. What happened was that after my diagnosis I was referred for a bone scan. Unfortunately, like with everything else, I had to chase it up. I went back to see my Urologist who despaired that I hadn’t had it. It transpired the Trust had decommissioned the scanner prior to installing a new one, but not actually told anyone, so a backlog built up. Eleven days before my operation I had the scan at another trust. On the morning of my operation in June, unbeknown to me, the report had still not arrived. My urologist, based on psa, mri, Gleason and biopsy, was convinced it hadn’t spread and decided to go ahead with the operation.

The scan report arrived after my operation and showed a lesion on my pelvis. However my psa had dropped to unrecordable, my Gleason was slightly downgraded, post op, and my lymph nodes were all clear, a benign mark of some sort. So I had a PET scan in September, which came back clear. But I am ahead of myself. Unfortunately, the morning after my surgery the junior doctor who had assisted in the operation, did the Dr round and in response to my direct question, do you have my bone scan results, replied that they were clear. This wasn’t true, eithe my results were still not known, or He hadn’t seen them. It only came to light on discharge day when, after the Dr round, he came back to me and said, we found a couple of marks on the pelvis, we don’t yet know what they are but we’ll let you know at the six week review. He promptly hurried off, leaving me as though I had been hit by an express train.

Edited by member 24 Oct 2019 at 06:39  | Reason: Not specified