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Just been diagnosed, scared as hell

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User
Posted 27 Jul 2016 at 07:41

Hi all,

when you were all diagnosed did you feel that every ache and pain you got was down to the PC, bone scan Tuesday, so things are moving

Paul

User
Posted 27 Jul 2016 at 08:42

Yes that is common and for many men it never goes away - even after successful treatment, new pains or symptoms cause worry that the cancer has come back.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jul 2016 at 08:44
Originally Posted by: Online Community Member
Hi all,

when you were all diagnosed did you feel that every ache and pain you got was down to the PC, bone scan Tuesday, so things are moving

Paul



Paul

I did not think my aches and pains were down to PCa at diagnosis, but did and still do worry about aches and pains now. My medical team all assure me that bone spread is "unlikely" with a PSA below 20.

Thanks Chris
User
Posted 27 Jul 2016 at 08:45
Originally Posted by: Online Community Member
Yes Cyber Knife is a non invasive surgery, it involves about 5 sessions of around 30-60 mins, no cutting so hardly any side effects, I think you have to meet certain criteria but it is available privately, there is a lot of information on the net, its been around since about 2010,

Paul



It is too new for any data about long term efficacy but the mid-term results haven't been great. It is looking to be more useful as a salvage treatment than first line :-( If you use the search box above, you should be able to find the members that have had cyberknife.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jul 2016 at 22:08

Hi Paul


 


I had not heard of cyber knife surgery so presumed da vinci. Sorry for misinformation. I have learned something today!!


 


yes after diagnosis i did think every ache and pain was down to pc. more to do with stress!!

User
Posted 06 Aug 2016 at 10:12

Just had bone scan, Tuesday 2nd, I have also got an appointment with a medical oncologist on Tuesday 9th Aug, the date of the letter was 29th July so they could not have had the results of the scan before the letter was sent out, I thought I was going to have an MDT meeting first, I suppose all hospitals do things differently,

Paul

User
Posted 06 Aug 2016 at 10:26
Paul

Can only speak from my experience, at our hospital,the MDT meet to talk about you and other patients, not a meeting with you.

Others may have different experiences.

Thanks Chris
User
Posted 06 Aug 2016 at 10:54

Thanks Chris,

Paul

User
Posted 06 Aug 2016 at 16:27

Just been diagnosed and after a couple of days worrying and a few tears I have accepted that the best thing is to get on with it. I have slightly different issues in so much as I live in France. The good thing about that is the medical service here is very good. About 5 years ago my PSA started to climb and when it reached 12.2 a biopsy was recommended. I had the biopsy on 23 June and I was told the results on 11th July. On the 29th July I met with my Consultant and he explained that I had to have a Bone scan and that is booked for the 26th August. I will meet the consultant later the same day and depending on the outcome of the scan I will have to decide on removal or Radio therapy. I have learned today from this conversation about the Da Vinci method and not sure if that is an option for me. The consultant says I am young and fit and the cancer is small and contained within the Prostate. Of the ten biopsy samples taken three were positive and only on the left side. The difficulty I have is having someone to bounce the million and one questions off and I do worry about the future. No Macmillan nurses here, although I am back in UK next week so may try to speak to one then. 


Over to you guys


 

User
Posted 06 Aug 2016 at 16:56
D

Welcome to the club nobody wants to be in. Firstly I would advise you to start a new conversation of your own it makes it far easier to keep track of your questions and answers and we are all different with different issues and circumstances. A new conversation has to be moderated sometimes it is almost instant other times it can take a few hours, so the conversation may not appear straight away. Secondly download or send for the toolkit it has a wealth of information.

There are no silly questions and we discuss all subjects and side effects even the intimate ones.

Not only do we have guys we also have many knowledgeable gals. Stay positive, sounds like you have a few options,did you get a Gleason score it helps to know what you are dealing with.



Thanks Chris
User
Posted 06 Aug 2016 at 18:30

Hello dogginut and welcome to the site.

It would help if you gave us your Gleason score. Yes 12.2 is high but Gleason would give more information.

As the cancer is small, contained, only 3 positive and only on one side, have you decided on removal or radiotherapy by yourself or are they the only treatments available in France.

Download The Toolkit from publications on this site for more treatment options. Whatever you decide on think carefully before you choose (if you have options open to you of course) because you will have to live with any side effects.

As Chris said, starting your own conversation may well give you more replies as not everyone looks at everyone else's posts. There may be a short delay before the new topic is put on.

Write down any questions you have for your consultant and write down the answers, and if at all possible take somebody with you to the consultation as there is a lot to take in.

You don't say whether you are on your own or have a partner, but we are here for you both if you need us so ask away with your questions.

All the best

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 07 Aug 2016 at 19:46

thanks for the support I will repost and start a new post

User
Posted 09 Aug 2016 at 17:18

Hi guys,

Just had the results of the bone scan, they were clear, what a relief, as the prostate is so large I have 2 options, RT or robotic surgery, I am going with surgery with the top guy at our hospital he does nerve saving surgery, so 29th Sept prostate gone, cant wait,

best wishes to everybody

Paul

User
Posted 09 Aug 2016 at 19:08

Glad the results were "good" Paul and that you are happy with the decision you've made.

Good luck with the op. I hope it all goes well for you.

Best Wishes

Sandra

*******

We can't control the winds - but we can adjust our sails
User
Posted 09 Aug 2016 at 19:33

Thanks Sandra,

I only had 2 options, RT or surgery, the MDT said surgery was the best option but I had already decided that was the way I was going to go if I had that option, I have the top surgeon at my local hospital he has done about 500 nerve saving ops,

best regards

Paul

User
Posted 09 Aug 2016 at 19:43

Hello Paul,


it's good to hear you sounding a little more positive - it ain't easy.  I was quietly confident that that your bone scan would come back clear, well done!  I remember the relief when mine came back clear.


Good to hear that you've made a decision and I pray that your operation goes well.


 


Frank.


 

User
Posted 09 Aug 2016 at 19:50
Things feel better once you have made a decision. Hope all goes well for you.

Kind regards
Kevan
User
Posted 09 Aug 2016 at 19:58

Thankyou all,

Feel a lot better now I have made the decision although it was really made for me, I only had 2 options as the prostate is quite large, surgery or RT, the MDT recommended surgery but I had already decided, if in doubt cut it out,

best wishes to you all

Paul

User
Posted 09 Aug 2016 at 22:02
P

You should also consider your surgeon's success of removing all the cancer. It is no good still being able to get erections if you still have cancer cells left in your body. I can only assume that all surgeons would like to spare nerves, you will see many guys say on here the priority is get rid of the cancer, followed by continence, and then erections.


Thanks Chris

Edited by member 09 Aug 2016 at 22:03  | Reason: Not specified

User
Posted 10 Aug 2016 at 07:26

Thanks Chris,

The guy is the top robotic surgeon at our hospital, he will remove the prostate and send it to the lab to see how close to the edge the cancer is then decide about the nerves,

Paul

 
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