Paul has now reached the 2 year mark and doctor at clinic suggested a septoplasty and adhesion removal to make breathing easier .Operation was done last Tuesday .He was completely sure when he checked previous NPC site while in everything was ok .Unfortunately the biospies have come back showing sqaumous cell occurrence beneath the original site .

We received this infomation on Monday as we had to go back because Paul's nose is sore and pouring and seems to be a reaction to splint inserted.This hopefully will clear up when it comes out on Thursday .

The doctor has said nothing else can be done here in Scotland bar Chemotherapy .He has spoken to doctor at the Royal Marsden in London as they seem to have a machine that could burn out the remaining or reoccuring cells although Paul has had the maximim amount of RT here in Scotland .We are so shocked and numb at the moment and are waiting to find out how all this will work .Firstly he has to have abother CT and MRI scan then a consultation with a Doctor Nuttal at the Royal Marsden London.

Does anyone know about this hospital and the machine ,also about making travel arrangements what we do about staying there through treatment etc I know our doctor here will eventually advise on this when he finds out but we are so shell shocked at moment and so many thoughts going through our heads and just waiting for information.Our daughter gets married on 9th of May and Paul does not want to restart anymore RT till after this as he had such a horrific time before.
In all honesty it as taken a year and a half to get to this stage .I feel I have been prattling on apologies for this. Have looked at the web site for hospital but sometimes personal experience fom someone may be near the area or who has been treated there would be helpful.

Any information would be grateful .

May thanks Paul and Bell .

I'm sorry I know nothing about the hospital, but just wanted to know I'm thinking about you.

You really must be shell shocked.

Hi Bell and Paul
I'm sorry there is absolutely nothing I can say or do to help as far as the hospital goes but just wanted you both to know you are in our thoughts. Times must be pretty tough for you right now. It isn't easy.
Hope all goes well
Love from Down Under
Deborah

Hi Bell and Paul

Really sorry to read about the reocurrence, it is the news that no one wants to hear ever.

The Royal Marsden is one of the world's leading hosiptals for cancer.

I have not been to the hostipal but they have published loads of things and are a centre of excellents.

You are going to the right place for advanced treatment, all of us hope that the treatment will have a positive outcome.

Remain positive and keep saying, they found something it early and we are going to get it fixed.

Stay strong and keep fighting.


Regards



Tony

Hello Bell

The treatment is focussed radiotherapy called IMRT . The oncologist is my friend Dr Chris Nutting who works at the Royal Marsden.

More on IMRT: here

Hope that helps.

Best wishes
Vinod

Thank you to everyone for their kind replies .Dr Vinod K Joshi, thank you for the link .Our specialist took Paul's stent out yesterday and hopes the adhesion removal and septoplasty operation will give him much needed relief.He too is shocked at biopsy results as when he was doing operation he said the site was looking clear and good .
He has liased with Dr Nutting who has said once the MRI scan is done to clarify any other spread he would see Paul with a view to possible treatment for this reoccurrence .There are so many questions in our head as to what size it is and how long it would take to grow etc .Paul took a long time to recover from RT and really has only been getting back to normal in last byear with the help of steroids on and off .

He had such a terrible response to previous chemo plus the toll of the 5 week RT and would like to walk our daughter down the aisle on the 9th of May and have a little quality of life before he resumes treatment.

Paul and I are confused about this new form of RT as we understood that he had had the full quota of RT already and suffered complete loss of saliva and a Few other problems so is worried about more RT.We understand this hospital is the best and our only chance and are pleased that should scans be ok,we will travel to London and meet Dr Nutting .We wondered if anyone on the forum had maybe had this treatment and could let us know the format .Paul is wondering how long we would need to stay there or whether we would need to fly up and down but until we get to that stage we won't know. We will just need to sit tight again till MRI scan is done and be patient.Think this part for everyone is alway's the tummy churning stage wondering if the worst sonario is going to arrive with dreaded scan results .
Thanks to everyone once again,

Bell & Paul.

PS. Have read the link more clearly now Dr Joshi and should Paul be lucky eneough to have further treatment with this new IMRT for reoccurrence would be delighted to post his experience and outcome .

This message has been edited. Last edited by: Bell,

I was born in surrey and lived there for the first 16 years of my life. Even in those days the Royal Marsden was considered the leading authority on cancer care.Other hospitals have now caught up and are delivering the same excellence as the Marsden,but i think the availblity of the equipment that delivers the IMRT is very limited and is probably the reason you need to go there.

I cant see waiting till May being an option as SCC is very aggressive,and will surely become much more difficult to treat in another 3 months.
Still maybe they can come up with some chemo to keep the growth in check until IMRT is started.

what a bloody awful situation

thinking of you
love liz

Thank you Lizz, was hoping when the team here said they would not have known about this for a while with normal clinic visit and camera unless Paul had had this operation where they decided to biopsy while they were there, gave us hope we had more time should treatment be an option .These are questions we should have asked ,think you are so shell shocked you come home and think I should have asked this and that .

We have been told we are priority on MRI scan list in Ayr but still could be a wait of 1/2 weeks .A part of us wants it done right now and another wants to put it on hold .All part of the emotional turmoil of this disease ,waiting and worrying till consultations and scan times come in. Paul has already told out daughter her wedding will go as planned on 9th and she must not worry, but this is worrying me as his health and treatment options must come first.

Love Bell & Paul

Bell,
I've only just seen you post and i'm absolutely gutted for you both!
2 years on - when you're reclaiming your lives and then IT's back. I don't really have the words to tell you how sorry i am.

The Royal Marsden is one of the biggest cancer centres in Europe. They are doing clinical trials on NPC - they wanted my participation but it was too soon after treatment for me to commit. They were vaccinating against the glandula fever virus - Epstein Barr. They think that may be the cause of my cancer. Undifferentiated NPC.
Was Pauls previous cancer squamous cell also? Is it definately a recurrance of before?
You are both in my thoughts. I hope all goes well Thursday.

xx

bell so sorry to hear of pauls re- ocurence i am thinking of you both.
bev x

Hi ,to Chelle and Bev,thank you for your kind thoughts .Yes it seems to be underneath orignal site and is Sqaumous.Paul went in for adhesion removal to help his breathing after RT damage and also repaired deviated Septum .After operation surgeon was delighted and unfortunately said he had no worries about the area at all .Unfortunately he was as shell shocked as us when reaults came back .We are hoping it is early and there is no other spread to neck etc .So waiting on his MRI scan now which is the 26th Feb.Our team have approached Dr Nutting at the Royal Marsden who has said he will see Paul if MRI is ok .Paul worried about new treatment being as debillitating as last time and this is why we have been looking for other new treatments,hence the posting on the PDT .
This operation Paul had about 2 weeks ago has left him at moment even more congested and miserable unfortuntely,even after the stent was taken out things have not improved yet.He has been trying the nasal douches again but they seem to make things worse. So.. all in all I think this is why he is so terribly down at moment, and very sceptical.Managed to get him out yesterday for a walk at the sea front and also today so trying to keep him busy and occupied.Thank you for your replies it is so good to have people to talk to who understand .Will let you know how we get on .

Best wishes to you both ,

Bell xx

Bell,
I can understand Pauls debths of despair - after all he has been through. I've often said myself that i don't think i could possibly go through all that again. & it must be devastating for you not being able to console him.
I reada blog written by a chinese guy that had gone through IMRT for NPC, it seems to be standard in the states. The side effects are less than the regular R/T as it's far more accurate and precise. The Royal Marsden isn't alot further than the Brighton Cancer Centre i went to. & i wish i'd been given the option to have IMRT there as it may have saved my saliva glands! But i was none the wiser then.
What an agonising wait you both have ahead.
Keep pushing him to keep busy Bell, and i apologise on his behalf in advance in case he takes his frustrations out on you!!

Chelle ,u r a great girl and I hope your business is up and running now .I was delighted to hear about your engagement that was such fabulous news for you .Tried to send u a private message of congratlations but some how have not mastered that technique yet.Our eldest daughter is 31 and is getting married on May the 9th ,she was so excited and now getting into bridzilla mode.Have you guys set a date yet?.
Thanks for your support Chelle. xx

Bell my duaghters wedding was just 6 weeks after Rob died,and believe me when i tell you that Paul will make the wedding and he will do her proud.Somehow from somewhere we find the strength to do these things for our children.The morning of Lynnes wedding i didn't know how i was going to get out of bed never mind go to her wedding alone and spend the day smiling.All i could think of was Rob wanted to make it to her wedding so badly,and he knew how scared i was of having to spend the day in the company of my ex husbands new wife.But i did it,and my ex was such a support.Paul will find dig into his reserves and come out fighting,just you wait and see.

love and best wishes

liz

Bell,
We're waiting til 2010 so we can save hard.
The business is doing better than i could have anticipated and if this is supposed to be my quiet season then come the spring i'm going to be running ragged!!
Amir's going to Glasgow the end of the week to visit his brother, but i'm too booked up to take any time off yet.

Keep us posted.
Michelle