Hi All

I read a posting today and the question that was "what happens if it comes back".

When you speak to your local team you can end thinking that your lot mate.

There are a number of possibilities that are worth considering;

Photo Dynamic Therapy PDT is one, Cyberknife is another

Regarding PDT a number of postings relating to the subject have been posted on the site and there is plenty of info out on the net.

A case study as taken from Daily Mail of a lady who had re-occurrence of base of the tongue and was told that that nothing further could be done she had gone through surgery, R/T and chemo

She was treated successfully using PDT the treatment does have it down side in that have you have stay in a dark room for up to 4 weeks as the drug used is light re-active and will cause sun burn, however it does not have the side effect of R/T and can be used more than once, Ok there are other possible limitations, size and depth of tumour etc, having said that things are moving along fast unfortunately it still treated as a "Cinderella" treatment but well worth looking at.

Secondly there is the Cyberknife Cyberknife. I put a link in it gives quite a bit of info and has been used for treatment after standard R/T treatment.

Regards


Tony

Thanks Tony,

I don't know whether your post was in response to my whinging, but thanks anyway. Yesterday when we were in the hospital I noted a new leaflet "Understanding Head and Neck Cancer" and PDT treatment was included.

I also noticed this a few weeks ago on boron neutron capture therapy: http://www.medscape.com/viewarticle/562315 which may be another option though likely to be expensive and mean having to abroad.

Bell and I have also been posting on a thread about re-irradiation options.

My concern that NHS teams here are not taking a vigilent enough approach to catch things as early as possible - maybe because they think there is nothing THEY can do if a recurrence happens. When I read about the screening that US patients with insurance get, it does make me cross. I know resources are an issue, but in the instance of our appointment yesterday that was not the issue. We were given loads of time, but most of it was spent chatting and not enough on physical examination.

Anyway, I have decided I am going to stop moaning here and take a more activist approach and see if there is some way trusts can make patients aware of the minimum standards of care for head and neck cancer - including post treatment and the RATIONALE for those standards.

thanks again,

Cathy

Hell Cathy ,I totally agree with you your feelings here and appreciate where you are coming from ,I feel when treatmen is newly completed the first year anyway is mainly a look at original site and prod round neck etc and you do tend to feel it is rather quick,in regard to collateral damage due to treatment around the year and a half to two becomes the bug bear as they are just not up to speed with problems a lot of people have which can run for another a year taking any quality of life away ,exactly what happens with Paul.

Always the term a another little legacy from RT will take time to find a solution .We now feel with treatment you are damned if you do and damned if you don't as Paul's side effects the last twice now have become intolerable and he looses qaulity of life to becoming house and bed bound .So in effect we are now nealry a year from end of treatment and things since xmas have just deteriotated .

I looked in depth into the PDT which you may find posts on further back Cathy .Contacted the man in london personally who was very helpful and they were going to take a look at Paul to see if he was elligible .Discusions with the Royal Marsden and all his MRI and notes etc sent off it was unfortunate that the position of Paul's tumour and the facial bones in front would mean the PDT light could not penetrate the area succesfully .

For PDT to be successful and it can be the tumour must be no more than so many centimeteres ,Pauls was but to target it was not .We were very hopeful about this at the time .

Have not heard of -boron neutron capture therapy: Will have a look at this .

Bell.

Hi Kathleen the Cyberknife and also another treatment , Brachytherapy can also be used which was another possibility for my husband but because of his positioning was unsuitable and also again this proceedure could have only been done in certain hospitals .I met a lovley girl on the forum from Phoenix Arizona who had base of tongue recurrence and had the brachytherapy done. She sent us all the pictures from start to finish as for short while we thought this was what they were going to use with Paul. She has done well and now ok and cancer free with no problems.

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

Thanks Bell for all of the information about PDT etc and also for yor honest posting about the pros and cons of re-irradiation. I think anyone who has followed your story will recognise that haveing radiation again is not a decision to be taken lightly.

Thanks also for your lovely PM. I am not off toe K anytime soon and hope to be reading more positive news about Paul on your thread soon.

I hope you are enjoying having your family around. We are having a lovely time with Alex.

Much love
Cath

Hi Cathy

I don't think that you were whinging you are just looking out for Chaz and the more you find out the better you are armed.

I agree with your comments sometimes it seems to be pointless turning up for the follow up appointments a quick feel around the neck and look into the mouth I do that every day.

Hi Bell

I really hope that things pick up for Paul, on the plus side he has a hard fighting lady in his corner.

Regards


Tony

Trevor only had a couple of follow up appts and I wondered what the point was really. They put the camera down his throat and always commented on the site where his tonsil was removed and all was well with the world.
How could they know??? I did say at one stage that the cancer hadn't been in his tonsil anyway, so why the joy at how well the site was doing? If there was no sign of the primart to begin with, I didn't understand what a scope down the throat would achieve. Turned out we didn't have to worry ........ I guess it's all better than nothing. Isn't it?
D

Debs that is a classic!

I continue to worry as Chaz has started to complain of a sore throat first thing in the morning - it was just after eating before. He also clears his throat incessantly which constantly sends shivers of worry up my spine. He says its a side effect of the radio, but I haven't found many people talking about that 5 months after treatment? I wonder if I would feel better if they had had a good look behind his tonsil and down his throat with an endescope last week. I somehow think I would. I feel so bloody cross at the moment I could scream and strangle his ENT consultant!

Hi Cathy

Perhaps I can help, Chaz and I had the same cancer, tonsil and the lymph involvement basically a "mirror" case. I am 2 years + on and the same thing happens to me all the time.

My little secret is chewing gum, I get through about 4 packs a day and the old throat is OK its worse in the morning I drink about 2 or 3 cups of tea to clear the throat.

Plenty of fluids when eating and yes things do get trapped and us "head and neckers" are always doing what Chaz does.

He sounds about normal to me don't worry he will be OK.

The chewing has also helped with the mouth opening (you know locked up jaw), I can open my mouth as wide as a normal person (Kathy says I got a big mouth so that helps).

Don't worry it all sound normal, back to work now had my 7 cup of tea of the day.

Take care

Tony

Thanks Tony,

You are kind. That is most reassuring. He has actually started on the gum quite recently but maybe not doing it enough. He has a little saliva now but hardly ever uses his mouth spray. I have a feeling that would help although he does seem very bunged up most of the time.

Actually I often wake with a claggy sore throat and tea always sorts me out. He has stopped drinking tea post therapy and I think that may well be part of the problem - the other day I gave him some green tea half way though the pm and that shut him up!

Ok I must get back to work. I am glad you are doing so well. Very encouraging.

Take care,

Cathy

Just one cup of tea and my throat would be cleared too ~ as well as my stomach! Tea. Ughh.......
D

The regime of post treatment after care in the uk is pretty poor,and is the subject of research investigation by Macmillan Cancer.rob finished treatment on April 13th and wasn't seen again in clinic until May 30th.If we hadn't had the guys on the boards i would never have know about the gift that keeps on giving,and rob deteriorated at an alarming pace for three weeks after radiotherapy.He slept 18 hours a day took nothing but tea by mouth,coughed and choked on mucous couldn't open his mouth,and lost his voice,his weight plummeted and he was absolutely miserable.Our GP who admitted he had never seen an oral cancer case,was wonderful but feeling in the dark,and just responded to each problem as it came even reading advice on the forums.By the time we saw the surgeons /oncologists in May he had picked up a lot and they just did a cursory physical and visual examination and said "so far so good" when i questioned the swelling on his surgery scar they said it was fluid,and would go down with time.On reflection i would have been more aggressive and more worried if i had known better,but i didn't,and without that day to day contact with the hospital we had when he was having radiotherapy i felt very frightened and at times absolutely useless.

liz

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

I remember the last day of Trevor's r/t and the team all made a point of saying goodbye, wishing him well, reassuring him they were there should he need them but also adamantly stating that in two weeks, he'd be getting back on top of things and it would all be behind him. Could it be that they honestly believe that? Why would they lie blatantly to someone in such a delicate, depressed and close to defeated condition? I have struggled with this many times. Is there any possibility they have never seen how these poor souls suffer?
I just don't get it and believe that if the drs, nurses, radiographers think there are no problems after two weeks post treatment, then I guess it's possible they don't feel the need to be doing anything indepth in follow up.
While I say that,and think it often, I am also aware that the best test (PET) showed no hot spots or activity for Trevor and 12 months later his gut was eaten out by cancer. How does that work? HOw good is the best test? It must be frustrating for the drs who are trying to keep ahead of this stuff. If it doesn't show it's ugly head,how can they knock it off?
Then again ~ here I go again ........ how can they state categorically (when they must know there isn't always rhyme of reason to how this disease progresses) that it only takes two weeks to recover from having your head and or neck roasted?
Sorry. That touched a nerve.
Deborah

well girls i agree but Paul has been at the clinic every 6 weeks for 4 and half years consistently and he is in a terrible state at moment and this is exactly 9 and half months since second RT has finished so I am back to post RT side effects and toxicity .

I feel not enough is known in what to expect and how to pre treat before it gets out of control, I know this seems to be in the minority of cases but never the less they are still feeling there way in the dark through this .

I know feel Paul has become another statistic in second RT regime where they are really unsure how he will react further down the line.
I also know it was his decision to do this but with due respect he was told there should be very little or minimal problems this time.I feel if he knew this would all take place he would have not done it, but alas it is a gamble and we took it ,who knows maybe things will get better .
Deflated ,Bell.

Hello all.I'd like to agree with Cookey,Trev and Deborah about the after care for R/T. ITs an absolute joke.In Novemeber 2007 I was on liquid morphine in my last week of R/T as I was in so much pain.After my last session I was told I will get worse for 2 weeks,just keep upping the morphine,then I'd start getting better.....I was then abandoned on my own with no Macmillan nurse for support,no follow up appt until the following end of January.By New Years Eve I was at the emergency doctors surgery with a raging temperature,thrush,infection in my mouth,all skin was still red raw burnt and I honestly begged them to put me in hospital as I felt so ill.I was given thrush medicine,told to take codeine....erm I'm already on morphine which is stronger...I just wanted to give up.By the middle of January ,2 months after R/T,I was asked if I wanted speech therapy...NO I just wanted HELP!!! I went to the speech therapist just to get myself to hospital and burst into tears.I was then referred to a fantastic Macmillan Nurse who took one look at my mouth and just shuddered.She immediately changed all my medication,put me on morphine patches and wanted to see me every week to support me through this horrible time.Why is this service not offered straight away when you are diagnosed with cancer and definitely during R/T.My original op was in April 2007 and I never got any professional support until January the following year.I know this sounds awful but people with Breast Cancer/Lung cancer/Bowel cancer-basically all the "well known" cancers there are lots of suppport groups,assistance etc but Oral cancer...erm whats that??which is what most people said to me when I told them, don't seem to get any or very little help outside the hospital environment. Sorry I have wittered on about this but I do still feel very angry at my treatment before I met my lovely macmillan nurse,who still sees me now every 6 weeks just for help and catch up.

When I was first diagnosed I was allocated a MacMillan nurse.I met her once and since that day never met her again.My support and care came from my wife Lorraine and also a superb team at my radiotherapy unit.I felt quite let down by the MacMillan trust.On another occasion when very ill Lorraine enquired about me having some alternative therapy (ie a massage, reflexology etc) at my local hospice which they said would not be available to me.I ended up paying quite a lot of money for private alternative treatments.

This is probably just my experience.