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What next. Suggestions please

User
Posted 27 Aug 2014 at 12:12

Seeking advice here from all of you experienced experts.
Brief history
Current age 63
Jan 09 PSA 6 12 needle biopsy One core shows HGPIN No follow up beyond gaffing medical file to PSA all blood tests. Not aware of this
Dec 13 PSA 6.71 12 needle biopsy Adenocarcinoma 8/12 cores 15% involvement 51ml gland Gleason 3+3=6 T2 N0
MRI shows organ confined disease.
Following discussions with the Addenbrooks MDT, upgraded to Gleason 3+4=7 T3a
Options available; AS not applicable, Brachytherapy N/A, RP possible but not recommended as extra capsular extension means no Nerve sparing and no guarantee of full removal.
Decision then Neo Adjuvant HT + RT
6 months Zoladex 3.6mg Subcutaneous monthly injections
Continuing HT whilst undertaking 37 treatments of IGRT to 74 Gy
Mar 14 Full body scan No Mets
Feb 14 Started HT
02 Aug 14 Gold seed implants
09 Aug 14 CT Planning scan
29 Aug Start RT
17 Sep Last scheduled RT treatment

Side effects. Usual hot flushes, irritating, especially at night. Nocturia, 2-5 times a night. Fatigue, sometimes slept for 18 -20 hrs, wake up exhausted.
SE from RT, 2 days in had irritation of Bladder resulting in cessation of flow. Extremely painful. lasted 4 days, avoided Catheter, just. Cleared up of its own accord, few urine problems since. Tolerable.
Beginning to get tired from RT now, could also be from early starts every day & public transport!
In July, started to become aware of change in personality & attitude. More aggressive, less inclined to tolerate other viewpoints. Loss of concentration and memory. Will stop partway in a conversation, brain just stops working.
Excessive overconfidence, started to become risk averse, felt like superman, can do anything, without consequences, feeling quite invulnerable. Not true of course. Led to some appalling errors of judgement and risk taking when driving ( which I do for a living ), and out walking, Walked in front of a train! Saw it coming, and just crossed the tracks, it was close, but it didn’t bother me at all.
Culminating in a stupid traffic incident, which made me think that if I carry on like this, I’ll have a serious incident.
In conjunction with the OH, GP & work, voluntarily stopped driving and am currently on 6 weeks sick leave. Return to work to be discussed later with GP, Oncologist & Occupational health.

Reason for request. Onco suggest stopping ALL treatment at end of RT. Watch PSA & see where it goes.
Never been high, even with T3a, so not convinced I’m my case that it’s a good indicator.
From the site, David Kirkham suggests good reason to continue HT after RT, ‘to control dying cells’, recommended for total 3 yrs HT
‘Chilled’ suggests, if PSA at start was < 50 then 3 years, if > 50 then Indefinitely
‘Alathays’ suggests a Testosterone test to provide a baseline & other drugs to eliminate Adrenal T to < 1.0 nMol/L for added benefit
NICE suggest ADT for up to 3 years for men with High Risk Localised PCa. Not sure if mine falls into this category, but at my staging with my PSA, I’m not inclined to take the risk.
The only other relevant factor I can find, is a report from e.cancer.org of Feb 2013, which states that statistically, an HT treatment time of 18 months shows no benefit over a traditional treatment of 3 years.
If true, it also has the added benefit of getting off these side effects sooner. I’m all for that, but not at the expense of reoccurrence!

So question time. What do I say to my Onco when I go for my end of treatment meeting?
I’d obviously like to carry on HT. What experiences have you had when on a similar treatment path?
All advice gratefully received.

Chris.

User
Posted 27 Aug 2014 at 14:23

Hi Chris,

I'd obviously be steered by your Oncologist as he knows your case better than everyone.

That being said there is no reason why a dialogue can't be opened to understand the reasoning behind his decision process.

 

Where I am being treated, as mentioned, initial PSA below 50 then RT with a view to come off HT after two to three years. For the reasons mentioned by David K. To keep the PCa cells 'on the ropes' while the RT after effects are still effective.

 

You seem to have dug deep and have a good understanding of your options and the layman reasoning behind them, take them to your Oncologist and have that discussion.

I'm guessing the Toolbox will probably have some words that will back up your thought processes which may also be useful.

 

Best of luck

 

Kevin

User
Posted 27 Aug 2014 at 15:47
Chris

Love Rayxoxoxo

“Excessive overconfidence, started to become risk averse, felt like superman, can do anything, without consequences, feeling quite invulnerable. Not true of course. Led to some appalling errors of judgement and risk taking when driving ( which I do for a living ), and out walking, Walked in front of a train! Saw it coming, and just crossed the tracks, it was close, but it didn’t bother me at all.

Culminating in a stupid traffic incident, which made me think that if I carry on like this, I’ll have a serious incident.

In conjunction with the OH, GP & work, voluntarily stopped driving and am currently on 6 weeks sick leave.”

Background: previously a service engineer driving well over 1000 miles a week with a clean license and no accidents so I was used to driving. . I had finished HT but with Skeg having Red routes I gave up driving down to what you describe (I’m sorry to read you’re the same but have to admit I gain some comfort in not being alone). I’m now back in the bigger city and off HT for nigh on 6 years yet I’m still very unsure of driving as I’m told even my crossing the road is not good to say the least. The point I’m attempting to make is long term HT might put you in the same boat, but then again hitting Pca hard whilst you can might be the price worth paying.

As an aside I later thought it could be my eyes, however as I had stopped driving didn’t bother with eye tests. I did have eyes tested circa 6 months back, diagnosis was suspect glaucoma so on drops but vision was deemed Ok.

Ray

User
Posted 27 Aug 2014 at 15:50
Chris

Sorry forget the 'love' bit - as you may have gathered I'm cutting and pasting from word so that was left over from last letter/post

Ray

User
Posted 27 Aug 2014 at 17:24
Ray.Sorry you're in the same boat, but I am relived to find that i'm not going potty. Everybody I've told thinks it's stress or depression or both, that it's not the hormones, but your experience is quietly comforting.The 'Love bit" is fine. Keeps us all smiling.Chris
User
Posted 27 Aug 2014 at 19:54
Hi Chris,I can not assist with any advice at all as mercifully my experience and therefore my knowledge of PCa is limited. However, PMSL I have just found that my return key on my laptop does not function in Quick Reply. Works well enough in documents and other sites. No matter, back to why I am here, just wanted to send you a man hug, and wish you all the best. Dave Please excuse the lack of formatting and paragraphs, non-functioning return key. Dave
User
Posted 27 Aug 2014 at 20:28

Guidance for intermittent HT is a psa below 0.1 for at least a year. If that is achieved then consider HT break & watch psa. If three consecutive rises occur then back on HT straightaway. This protocol is believed to give same survival time as continuous HT in medium risk cases.

This would likely give you a time on HT of about eighteen months. Also bear in mind it will take time to recover from HT effects when you cease them.

 

User
Posted 28 Aug 2014 at 02:20
Hi Chris, Could you please clarify a point. Your profile shows that you are half way through RT but you say RT is due to start on 29th Aug? You have been very unfortunate in the side effects you have experienced. I got off quite lightly. HT caused early fatigue, mild hot flushes for part of the time (I was on HT for 8 months) and slightly sore nipples and a loss of libido - that's about it. RT made the tiredness a little worse and significantly increased frequency of needing to pee, both day and night although this gradually reduced to pre RT levels over a couple of months post RT. I did also need a prescribed ointment due to slight discomfort to my bum for some of the time. So side effects vary in type and intensity from one man to another. I would suggest you have a word with your consultant regarding the severe side effects as it may be that an alternative form of HT would be more suitable in your case. HT post RT was not offered to me but now seems to be coming more common anything up to 3 years. I wish I had had post RT HT as it may have killed off the few strays cells that now seem to be responsible for my slowly rising PSA which is possibly meaning I return to HT. The decision on how you proceed is of course yours but your consultant is in the best position to advise. Sometimes the body gets used to HT and side effects become less marked. Sorry, I am not able to paragraph this - not sure if it is my old laptop or yet another bug on this forum.
Barry
User
Posted 31 Aug 2014 at 20:52
Barry.we all seem to have a bad dose of computer / digit problems here. RT started on 28th July not August ( doh! ), so only got 2 1/2 weeks to run now. Just booked a two day spa break with treatments to celebrate the End. Looking forward to that, but going to be at a loss as to what to do now I don't have the treatment to focus on. It's surprising how all consuming RT becomes when you do it this way. Like everybody else on the programme, I'll have spent a working week just sitting waiting for water to fill my bladder before the RT! ive got my last meet with the Onco on Wedneday, they don't seem to do an end of term meeting here, so need to get my reasons in place soon. Also need to decide whether to try to follow the Jane Plant 'eat yourself out of PCa' diet. Anybody out there following it? Hope your PSA is controllable with RT. good luck with that. PS. Can't paragraph either, must be the site!
User
Posted 04 Sep 2014 at 10:47
Greetings all. Thanks to the responders, always good to have info from the experienced.

Had the chat with the Onco yesterday. We decide that regardless of the stage no. We would err on the side of caution rand keep on with the HT long after the RT is finished. How long is yet to be determined, but probably 2 years. He agreed with my thought that whilst we have the PCa under treatment, we might as well do as good a job as we can by keeping it under medication an eradicating as much of as possible, hopefully totally.

The Wife and I discussed the issues surrounding HT and agreed this was the best way to go regardless of the side effects, if it give me the 'blue blanket' confidence that everything is being done to terminate this issue and give me the best chance at long term remission.

Did ask about the Testosterone value and testing and possible treatment of same to eliminate, but was turned down flat. Completely unnecessary, as if the PSA is less than 1 ( mine was .94 at the last test ), then the RT / HT is doing its job. We'll test PSA in 6 weeks to see what effect the treatment is having.

So ther we are. 2 weeks RT to go, then back into the big wide world on my own. Won't know what to do with myself, this has been so all consuming, having nothing to focus on will be a bit of a shock.

Hope everyone out there gets the results they need. Keep up the good work.

Chris

 
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