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Just for the record

User
Posted 14 Aug 2019 at 16:32

Hello 

Just to put the record straight this was our journey

Thurs 16th May recalled to docs psa 12.7 fast tracked

Fri 24th May MRI scan

Mon 3rd June urology for results not available

Tues 4th June phone call with results shadow on prostate more then likely cancer

Thurs 6th June Bone scan

Thurs 13th June Trus Biopsy

Weds 26th June consultant on holiday so saw specialist registrar.Told gleason 4+5 =9 T3NoMo

Bone scan negative.informed us been discussed at MDT meeting and was a candidate for all radical treatment options.We were very pleased that surgery was an option has after doing our own research that was the way we would like to go IF offered.we were told A = we would need to see Oncologists to discuss there treatment and

B =we would still need to see the urology consultant has it would be his final decision wether Chris could have surgery.

Left with the way to go was the surgery route .minds made up.

July 10th weds 

9am meeting with oncologist offered Hormone treatment Bracatherapy and four and half weeks radiotherapy.

10.10am (same day)meeting with consultant (surgeon)told us he was willing to do the operation BUT then told for the first time would also  have to hav after op 3years hormones and six weeks of radiotherapy.The operation would do also an extended pelvic lymph dissection and no nerve sparing so 100% erectile dysfunction , Persisent Lymphadema.This was the first time any of this had been told to us.Also he could not give us a date for the operation "sometime perhaps in September".has a surgeon was leaving in August and no replacement.

We then went back to the oncologist for Chris to do a wee flow test to make sure was fit enough for Bracatherapy.Was asked if we had made a decision we said such alot to take in and needed time to think about it all.

Parting words from the oncologist team DONT FORGET THE,CLOCKS TICKING

after all that information why we agonised over which way to proceed .

All treatments are tailored to the individual patient and,we would have given "our right arm"to have the operation ASAP whip it out job done get on with life.But for us was not that simple.

Both treatments gave Chris 10 years.

I was looking for advice on Chris state of mind and how I could help him through with other peoples experiences.

I hope this has not put anyone off there sandwiches.

We will be fine 

This will be my last post.

I wish well to everyone facing a diagnosis of cancer

 

 

User
Posted 14 Aug 2019 at 18:03
Why are you leaving already? Did something happen?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2019 at 19:47
I'm a little puzzled by the "10 years" prognosis. From what you've written the cancer is localised and treatment should have a curative intent. There seems no reason to suppose it'll be life-limiting, unless there's something you've not mentioned?

Why are you leaving? This is the right place to be to get support and information from people who've "been there" and can give you first hand accounts of what the various treatment options entail.

Very best wishes,

Chris

User
Posted 14 Aug 2019 at 22:33

The journey is at an early stage and there are all sorts of possibilities on the way ahead. All may work well for you and I hope it does. However, quite a high proportion of men require down the line treatment and it can be helpful to receive support and also pass on experience gained to others.

As regards the 10 year comment, the Consultant I saw mentioned this number when I first saw him prior to starting RT, not meaning this was how long I could expect to live but that he would expect I would have at least 10 years. It's over 11 years since I finished the RT and I have had a further treatment but aim to be around for still more years!

Edited by member 15 Aug 2019 at 11:28  | Reason: Not specified

Barry
User
Posted 15 Aug 2019 at 00:11
A number of the comments made on 3b48's other thread have gone missing, including mine about initial shock of diagnosis, Stampede and counselling.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Aug 2019 at 15:14

Hi Lynn

Nothings changed were ok.yes I was wondering were the other posts had disappeared to .the reason my post to set the record straight was to address some of the comments made in the disappeared posts .

Just didnt want you to worry that something had happened 

 

 

User
Posted 15 Aug 2019 at 16:13
Phew - I think maybe there are gremlins in the system; it is an old platform that the PCUK IT people have to keep tweaking every so often.

Stick with us - members will always try to give the best advice they can but sometimes, without the back story, the advice can be confusing.

If you haven't already done so, I would copy the above post into your profile so that whenever anyone is replying to you, they can see how you got to where you are.

My missing post from the other thread basically said that he is still in the very early days of being told he has a cancer that is going to change his life and may challenge all the things he thinks define him as a man, so it is normal to have low mood, anger, sadness and to catastrophise ... the good news to hold on to is that he has been willing to go to counselling (many men will not do that). And to be honest, having had a discussion like that with the surgeon from doom, I'm not surprised that he is finding it hard to be positive at the moment!

Fingers crossed that a couple of positive appointments with oncology will reassure him.

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

User
Posted 15 Aug 2019 at 18:51

Lyn, There were no gremlins.  You quoted my post so perhaps also replied to it.  It was later obvious that my post was based on a misunderstanding. Therefore I deleted it but was unaware it would also delete yours.  To date I've always thought the reply button did nothing except open the comment box as you might expect it to say who it is replying to. Although it was probably the quote that did it. I thought the quote would remain.

3b48 might already know, that Andy62 has written a detailed account of his hormone/RT/braccy experience.  Although I know she's looking for advice on her husbands mental condition.

User
Posted 15 Aug 2019 at 20:49
Weird, in the past if one person deleted their post anyone else that responded or quoted had to go back in and delete theirs as well. Whatever happened, 3b hopefully knows she is among friends here.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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