A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Tue Aug 28, 2018 10:15 am

I am very upset this morning. :cry:
My Nanoknife treatment has been postponed because of red tape. Due to some current reviews being undertaken, the medical profession is clamping down on private treatments. I can now only continue with Nanoknife if my MDT team discuss this and agree that this can be incorporated as part of my treatment. As the only time the MDT team discussed my case was back in April when the put me into the "Go away and die quickly pile", this naturally hasn't happened. The MDT meet on Mondays, so I have to wait until next week to get onto a doubly busy meeting. What happens if they don't agree to it, I cannot even bare to think about. I am paying for this treatment, this is not cosmetic surgery, it is hoped that this will extend my life.

I am at a point of total despair,

toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Tue Aug 28, 2018 10:50 am

That is devastating! This is your decision and you are in effect half way through your NanoKnife treatment. Words fail me I’m afraid.

Kerry
Posts: 20
Joined: Wed Jun 20, 2018 7:22 pm

Re: Nano knife for Stage IV PC.

Postby Kerry » Tue Aug 28, 2018 11:27 am

Dear Toodotty,

Oh my god - I cannot believe this is happening to you! It’s so unfair. I don’t understand how they can stop your treatment when you’re paying for it.

Reading your post has made me so angry and I wish there was something I or someone could do to help.

Could an online pertition help? Could your local MP do anything?

I understand totally how time is of the essence and you need to get moving with treatment - it’s not fair to delay this or cause you so much stress and upset in what is already such a difficult time.

I hope and pray you can get this sorted. You are always so positive and brave you deserve to have the best shot at battling your PC.

Kerry x

Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: Nano knife for Stage IV PC.

Postby Michaela1 » Wed Aug 29, 2018 7:08 pm

Hi Toodotty,
Can you have it done abroad? Would there stiĺl be red tape? I think it is disgusting, like you say it's not just for the hell of it, it's actually to prolong life!xx

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Aug 30, 2018 10:46 pm

A quick update,
I have been told in no uncertain terms that my MDT will not sanction this treatment and therefore I am unable to continue with it in the UK. I can go ahead and have it at some cowboy institute on the continent but not with a experienced specialist in the UK. I thought it was a free country, somehow I have been mistaken. Past being depressed, now seething with anger. I have written to my MP, my GP and complained to PALS of the trust that I am under. Please be warned if you are planning any private treatment in the UK you could also be impacted by this. I am in contact with the lovely nurses on this site, and they are equally dismayed.
toodotty, aka stroppy cow, aka trouble is my middle name.

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Nano knife for Stage IV PC.

Postby kate2101 » Fri Aug 31, 2018 9:45 am

I’m so angry for you, how dare they! This is your life and your money, it’s beyond belief. Carry on fighting, behind you all the way x

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano knife for Stage IV PC.

Postby toodotty » Thu Sep 06, 2018 2:19 pm

Well Nanoknife is now off the agenda, I cannot get treatment in the UK as my MDT will not approve it. If I want this I will have to go abroad. In the meantime I will return to chemotherapy tomorrow, round 7 though I have been told that the side effects are likely to be worse due to the build up of toxins in the body. Great, just what I need, I have to hope that the milk thistle affords me some protection. Hopefully the next three months will give me time to review alternative treatments and to pray for some miracle to happen. I still have not been told by my Oncologist whether there is any change since by baseline scan and I have sort of given up asking.

toodotty