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Newly diagnosed, considering treatments and my life in Cambodia!

User
Posted 09 Jul 2018 at 11:51

From my first appointment with my GP in early March 2018, I got the impression that the medical services were concerned re potential prostate cancer; and this has led to a number of stress related symptoms which have persisted on and off up to now. My PSA was relatively low at 3.1 but the DRE appeared to be concerning.

I delayed the process between the GP services and the hospital slightly by going over to South East Asia (my wife is Cambodian and lives there with the kids) and consequently I was again stressed at one stage getting headaches and disorientation (I've since had the tests, I had not contracted any tropical illnesses).

On 19 June 2018, I was advised that I had prostate cancer and the formal letter to the GP confirmed this as 'T3b N0 MX Gleason 9 carcinoma of prostate and as such we have to consider this to be high risk disease'. I have subsequently had the bone scan and CT scan for lymph nodes and these are clear. I had discussed with my consultant the potential treatment and I was advised to consider the hormone therapy followed by high dose radiotherapy.

Having now perused the treatments and side effects as listed on the 'prostate cancer UK ' web site I had become increasingly concerned at the side effects of both HR and radiotherapy and at one stage I was stating that I wouldn't be taking any treatments, and I would take whatever the cancer might deliver.... My interpretation of the side effects of the hormone therapy would be that my body would become 'feminised'. I had also noted the potential for side effects with the radiotherapy. Having now spoken with a nurse at Prostate Cancer UK on a number of occasions I am a little more comfortable with the situation....

I'll be in Europe for five days in September 2018 and I'll be back in Cambodia in December 2018 for five weeks (probably both trips during my hormone therapy treatment). My consultant is aware of these dates, however he has advised me not to book a further trip to Cambodia (for April 2019) until we are clearer about treatments and outcomes. Given that from November 2019, I was considering spending far longer away in Cambodia with my wife and family I really am concerned about the massive impact this diagnosis (and treatment) might have.

I am currently on sick with stress related illnesses (first time on sick since 2005 thirteen years ago, giving an indication of the toll this has already taken on me). I'm not sure when any proposed treatment will start meaning I'll possibly go back to work before this commences.

Whilst the operation wasn't offered to me, I've looked at the potential side effects for this and I really do not fancy it. Which means I will probably be going with the HR/ radiotherapy treatment and all that this entails.....

Looking at my lifestyle is all this doable?

Edited by member 09 Jul 2018 at 12:28  | Reason: Not specified

User
Posted 09 Jul 2018 at 12:51
Hi James,

Sorry you join us due to your PCa Diagnosis,

You could decline treatment as you originally thought you might or accept that particularly with your staging accept the HT/RT offered. There is usually some flexibility with HT before having RT. For reasons that are immaterial here I extended the proposed 6 month HT before RT to 8 months and I know some others have an even longer pre RT time on HT.

The question of whether this is doable depends very much on how you would cope mentally and physically with what you would have to deal with bearing in mind potential and variable effects of HT and RT. How fit are you physically? What support can you get in Cambodia? Does your job make heavy demands on you physically/mentally? Do you have other problems, (no need to specify) that are causing you stress related sickness and is it likely that these would remain and be exacerbated by HT/RT the full effects of which cannot be predetermined?

I really feel you need professional advice, maybe recommended by your GP who knows more about you to help you get a better idea of how you would cope. This is the main area of concern - timing I think could be arranged OK but the RT needs to be continuous and 20 fractions of higher dose RT if available to you, might be more convenient than the more usual 37 fractions each of 2 Gy.

Barry
User
Posted 09 Jul 2018 at 13:44

Thank you for your reply Barry.

I'm already under my GP for the stress related illness which has absolutely been caused by the worry re the prostate cancer. Whilst it started nearly two months before my actual diagnosis it is not as severe now, and is not as long lasting. The mere fact that I am communicating more about Prostate Cancer is a beneficial sign; I think before the diagnosis I was denying that anything could be seriously wrong (but probably subliminally admitting it could be very wrong). 

Generally, I am in pretty good shape mentally and physically (which is equally one of the things that has angered me); how can I for years go cycling, do the gym, eat pretty healthily and never smoke etc. etc. and then get this.....nb. I've already asked the questions- I realise there is no answer!

Cambodia is not known for its health care unfortunately although being currently based in the capital and with quite affluent family out there (some in medical care) I should be well supported/ looked after.

My work is well established here in the UK working for a local authority and can be pressurised but having said that my managers are very supportive of my current situation. They will make the necessary changes if required.

I've picked up on your comments Barry re the extended HT and 'the RT needs to be continuous and 20 fractions of higher dose RT if available to you, might be more convenient than the more usual 37 fractions each of 2 Gy'; and perhaps this is something I need to pay attention to.

Regards

 

 

User
Posted 09 Jul 2018 at 20:32
Another point I omitted to make but of which you may be aware is that more often than not these days HT can continue for a very considerable time after RT. Some HT is by an injection that lasts for 4 or 12 weeks but it would be useful to know what you might have as this could affect flexibility.

It is natural to be shocked by a PCa diagnosis, especially when a man is fit and in some cases there are no prior symptoms. It can be very difficult to come to terms with it but one way or another and with support, that is what you will have to do. Each man has to deal with it in his own way. Many find it helps to become more involved with their work or throw themselves into a project. If you do nothing there is the strong possibility of spending more time worrying about your situation.

Some men find it helpful to gain a better understanding of the disease and treatments and find studying the 'Toolkit' useful. You can download or obtain a hard copy of this from the publications department of this charity.

Wish you well on your cancer journey - any questions we will try to answer.

Barry
User
Posted 09 Jul 2018 at 22:11

Thanks again for this Barry; and very useful to pick up your point re the longevity of the HT treatment. This is something I will have to make further enquiries about. And I think you've summed it up just right for me 'how on earth did this happen'....?

Nb; part of the rationalisation of all of this has been to research and talk which is obviously what I am doing now, and also again I have found this charity to be very useful in providing information both on line, sending me hard copy booklets (I had 'computer glitch' one day therefore I could not access information) and a very personal and friendly call from one of the nurses.

Regards  

User
Posted 09 Jul 2018 at 22:24

Sorry to read your post James.   I just read of someone who seems to have been given an injection to self medicate on hormones while on a long cruise.  It's in the profile of Healey who has just posted, I might have mis-understood.   Perhaps that is an option for travelling.  Although I doubt they'd be over keen unless you are stable, able and very willing.  I had 28 self injections of anit-coagulant after my op and at first thought I didn't want to do it but then thought that many people self inject every day to stay alive and mine is only a short time.

I travelled to Australia 7 weeks after my op and tried to plan ahead to time it against what my options may be.  At first I thought flying for 24 hours and being away a month was unwise but actually it was no problem at all.

As another point, my own opinion, as a patient, is that with a T3b and Gleason 9 I'd get on with treatment as soon as possible.  I always find it hard to understand that anyone would consider not being treated but realise we're all different with different circumstances.  So hope you are offered the options and can make a good decision that could enable an almost normal life.   Regards Peter

User
Posted 10 Jul 2018 at 11:36

Hi Peter, thank you for this response.

When I spoke with the Prostate Cancer UK nurse, she also referred taking the medication over to Cambodia with me during my December trip- and I'm guessing that this is doable. I've spoken with my wife about this and I believe that either somebody in the family will be able to administer this for me or failing that many local pharmacists are pretty well clued up. One thing I have not yet worked out as I am away for five weeks this December would it not be possible to have the injection in the UK just before leaving and immediately upon returning....(slightly longer than a month)? 

In the long term as Barry has stated it might be that I would need HT injections post radiotherapy, and this therefore would come at a time when I might be looking at spending increasing amounts of time in Cambodia. This would be something I would have to factor in; having said that I have just been reading that some HT treatment can be administered every 3 months or even every six months; something to look into.....  

On your last point 'So hope you are offered the options and can make a good decision that could enable an almost normal life'; I think my initial reluctance to engage was based on the side effects - in fact this is all I was seeing. I recognised that the consultant and others were stating they aimed to 'cure' but all I could see was 'at what costs'......?

Regards

 

 

User
Posted 10 Jul 2018 at 13:41

Could you have a 12 week injection before going to Cambodia. My oncologist was very strict about the time between injections. I am on PROSTAP 3 but have been told to have it at 12 week intervals, no exceptions!

ido4

User
Posted 10 Jul 2018 at 16:43

Hi, thank you for this comment.

The truth is, I have absolutely no idea.....On a plus I have just now got my first appointment through for next week to discuss ( I assume) treatment options, although my consultant has already inferred probably Hormone Therapy and High Dose Radiotherapy (HDR). Given it was all new to me at the time I wasn't aware of the various types of HT and Radiotherapy.....

Regards

User
Posted 10 Jul 2018 at 18:39

Thank you very much to a gent who has just private messaged me. Apparently as a newbie, I am unable to answer you personally/ privately (???), however it is clear for me to see that travel wise and the anxiety wise we are/were very much alike.  I'll be re reading your post again and hopefully taking some of your points on board at my next consultation. Hopefully one day I'll be allowed to reply!!! 

Regards

 

User
Posted 12 Jul 2018 at 16:27

Hi All

I've just changed my username to 'SteveJ111'; Steve is my name- think I somehow got a little mixed up with anonymity advice....

Regards Steve

 
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