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Apprehensive and Frightened

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User
Posted 28 Oct 2014 at 20:14

Well the journey continues, since being diagnosed PSA 9.4 Gleeson 7 T2 in April at the age of 51 I feel as I have been through the whole catalogue of options offered by my local Hospital.

I initially selected Brachytherapy only to find out on MRI that the cancer had spread and that this was no longer an option.

Having then been refused a RRP operation I managed to convince a surgeon to cary out a robotic procedure only to have the operation abandoned after an hour and a half due to breathing problems. Whilst inside the surgeons reevaluated my prognosis and changed I have now been changed to T3c due to seminal invasion.

I am now on hormone therapy Zoladex and due to start 38 sessions of radiotherapy in 3 weeks
I ham now struggling with a growing waistline despite daily trips to the gym a total lack of interest in the trouser department and more hot flushes than a transport cafe’s kettle.

After all this I am now feeling very apprehensive and frightened about what the future holds

User
Posted 29 Oct 2014 at 08:29

Hello TMAC. Sorry to hear of your problems, which I am unable to help you with as we have no experience of it. Just wanted to welcome you and say hang in there until a more experienced member comes along.

In the meantime, if you go into the "SHOW SEARCH" (top right of the conversations box) and type in Zoladex or hormone therapy you will probably pick up postings by others who have been there.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Oct 2014 at 17:48

Thanks for the response Kevin 

Was good to hear that I am not in the boat alone.

Thanks for the MG comment Just about to put her away for the winter.

 

 

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User
Posted 29 Oct 2014 at 08:29

Hello TMAC. Sorry to hear of your problems, which I am unable to help you with as we have no experience of it. Just wanted to welcome you and say hang in there until a more experienced member comes along.

In the meantime, if you go into the "SHOW SEARCH" (top right of the conversations box) and type in Zoladex or hormone therapy you will probably pick up postings by others who have been there.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Oct 2014 at 09:18

Hi TMAC,

welcome to the club.

Many guys on here are on the HT / RT path, some like yourself just starting and others well down that track.
I've been on it for 18 months or so, I've had my RT and HT jabs are the norm for me now.

As you have found, going onto HT causes your quality of life to drop to a new reality. However, the drop does stop and you hit the new base line.
You also become adapted mentally as well, you are going through a major upset in your life at the moment which has changes everything around you.

Keep going to the gym, it will at least reduce the waistline expansion speed.... :)

Hot flushes are a pain but they do settle / you get used to them (never really worked out which)

Your trouser dept will be closed for the duration I'd guess. There are some luckier guys who don't take that hit.
I wasn't one of them so I console myself with the fact that no testosterone = no cancer growth.

Bottom line is you will get used to your new 'normal', like the rest of us you will probably have a moan about the changes but hey - you are around to moan!

Chin up, it will get better.

All the best

Kevin

p.s. nice MG

User
Posted 29 Oct 2014 at 09:28

Hi Tony,
Waistline going and hot flushes from Zolidex, they are normal, I don't know what we can do about the waistline but I take Sage Leaf capsules twice a day to try to control MY hot flushes.

What does the future hold, well, only one source can answer that, none of us know what our futures are, I have my faith which keeps me comforted, so all I can say is LOOK FORWARD, treatment options are constantly being improved, as long as NICE can be persuaded to sanction them !

Keep cheerful and look to the future, you don't need to feel frightened, but, we all deal with this dreadful disease in our own ways.


All the best,
Chris.

User
Posted 29 Oct 2014 at 17:48

Thanks for the response Kevin 

Was good to hear that I am not in the boat alone.

Thanks for the MG comment Just about to put her away for the winter.

 

 

User
Posted 29 Oct 2014 at 17:51

Chris 

 

Thanks for the reply yesterday was a bad day.

Today has been a better day off for my radiotherapy planning CT scan next week.

ATB 

Tony

User
Posted 29 Oct 2014 at 20:29

Tony

 

I know it may be hard at the minute but you will come to terms with this. I was also diagnosed at 51 but with a PSA of 214, Gleason 7, T3b and widespread mets to bone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. That was Feb 2008 and I'm still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. My oncologist is a brilliant researcher and a passionate believer in RT over surgery. The basic facts are indisputable - survival rates are 50/50 between surgery and RT but if you look closer at the data (age, Gleason, PSA at diagnosis etc) then you realise that surgeons tend to cherry pick their cases http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. He once said to me "Give me a man with curable prostate cancer and I will cure him to at least the same degree of certainty as a surgeon but with fewer side effects". I'm not knocking surgery but simply emphasising that you have not ended up with the short straw http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif.

Despite almost 7 years of HT, everything is still working in the trouser department http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif. Libido is way down but function remains - we are all different. I am incurable and have accepted my fate but you have a very good chance of making it to old age http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

 

Best of Luck

Edited by member 29 Oct 2014 at 20:30  | Reason: Not specified

Nil desperandum

Allister

User
Posted 29 Oct 2014 at 21:13

Thanks for the encouragement Alister.

Had a look at your profile blimey mate you have been through it. 

I have been getting a back pain like sciatica and I am assuming its not a good sign!

This weekend I'm going to give the old magic pill a try to see if it helps.

 

P.S have been in IT since I left school remember the large mainframes the 7t rack tapes and punchcards in fact i caught the last of the paper tapes and 64k disk drives !!

 

 

User
Posted 05 Nov 2014 at 11:15

Have been called in this Friday for my pre-Radiotherapy scan.

Anyone know are they just scanning for the positioning and the tattoo or are they taking the opportunity to have a look at everything?

Just wondered as I have been suffering with a a constant lower back pain on my left side should I mention it or should I tell my specialist nurse?

Thanks

Tony

User
Posted 05 Nov 2014 at 12:17

Hi, I think they simply scan for positioning - the scans are then used to write the computer programme for your treatment. If you have a new lower back pain, I would suggest you visit the GP to check whether you have a kidney or urine infection.

Good luck on Friday

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Nov 2014 at 20:19

Thanks Lyn

Have dropped a pee sample in to my local surgery.

Got the sciatic pain in the leg to go with it so fingers x'ed

Tony

User
Posted 30 Dec 2014 at 16:47

Have now started Radiotherapy 17 sessions down 20 to go! 

Side effects so far urgent need to pee have decided that this should be included in the next olympics along with searching out the nearest free toilet.

Passing blood in the stools a bit alarming at first but now used to seeing it.

Back pain getting worse and now having trouble with left leg Oncologist examined me and has referred me for a spinal MRI.

 

 

User
Posted 30 Dec 2014 at 17:51

I don't know how many men here know that they can apply for a RADAR key through www.radarkeys.org.

They are not just for disabled people. I applied and got one many years ago following a botched operation which left me with urgent needs.

You have to pay for them but once you have one you have access to most locked toilets.

Hope that helps

We can't control the winds - but we can adjust our sails
User
Posted 31 Dec 2014 at 10:37

Thanks for the heads up on the RADAR Key have been onto the site and ordered one. 

Will also be going to the hospital armed with a a TENA always hits me 40 mins after leaving the hospital just a shame I live over an hour away!

 

 

 
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