I don't come to the board so much these days for many reasons, some are related to pacing myself at the Pc with other health problems and mainly I feel that if possible we must all try to resume normality in our lives. Yet will there ever be real normality when we have received such an unpleasant treatment as radiotherapy for head and neck cancer.

Because my primary was occult I received four target shots of radiotherapy at each session. I'm also fair and I was badly burnt. My facial skin healed really well and combined with the inevitable 'water diet' for dry mouth several times I have been asked if I've had a face lift many times. For those that don't know, this is because radiotherapy is likened to a severe form of chemical peeling and in some cases the skin that peels off can leave lovely new fresh skin. However where that treatment is greatest, in my case the neck and thorax, there has been unsightly red vein damage and this has become almost one large red birthmark like mass.

So two months ago, in May and at 6 years since surgery, my ENT oncologist discharged me, but his parting gift was to send me to see a burns plastic surgeon consultant. The consultant said it was quite a section and I'd say the largest section runs 9 inches by 3+ inches. I had my first sample area of laser treatment in June. This was bit alarming as the laser left me with 10 black polka dot spots and with a big birthday celebration just 2 weeks later I was in bits for a few days. 10 days later it was looking much better and Iwas able to disguise the stage it was at.

I've taken photos of the sample area daily and now 4 weeks on I can say I think the sample has worked and the thread vein marks in this 3cm sample square are 50% reduced.
I go back to see if it's worth proceeding further in August. I'll keep you informed and all being well will write a web page with before and after photos.

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

Hello Pauline ,I am delighted to hear you feel the laser treatment is proving positive for you .Paul's neck and lower face is damaged by the RT but he gets away with it because he is a man and his skin is courser .

I can understand how u feel about your neck and chest area as a woman and I remeber your posts and previus photos .Paul underwent a second course of RT recently in London and although he coped better this time as it was new and inproved and without the chemo he is on his feet but the area around his cheeks and down to neck have become quite obvious this time with broken veins .If we are going out somewhere special I try to camouflage them a bit ,but I know he is aware of them.Paul has Celtic skin which burned excessively and he sometimes thinks his colurful face and neck makes people think he is a heavy drinker .

Like yourself Pauine I have tried to back off a little from the site as we have been feeling a little jaded with going through round 2 and sometimes you need to try and forget about the word "C" sometimes .

We still keep updated and try to help if we can .

Will look forward to your updated web page and hope the laser treatment gives an overall improvement for you .

Love Bell and Paul .

Hi Bell
I am not up to date with the board messages of this year, but the few posts I glanced at reminded me there are many new sufferers, many old timers still here, some departed and many with very real fears.

I am really sorry to read that Paul has had to endure another spate of treatment. I think you are correct the first problem is having fine Celtic skin. Totally understand how Paul feels about people thinking him a heavy drinker because he has the permanent red radiotherpay skin damage. Occasionally just out of indifference I go out without cover up make up and people who would normally pass by when the camouflage make up is used, simply seem drawn to staring at the area. I sense the women - younger women in particular especially make up assistants thinking how could you have some lifestyle - sunbathing/alcohol that might have caused that.

Indeed even at the burns clinic a young student was invited to see my veins and as she went out of the door I heard her say to the registrar 'Ergghh that's horrible'. In fact it's not horrible compared to many other disfigurements people here have endured. I consider myself lucky to have got off so lightly. The skin is whole and it's just red, but it is of course not normal even colouration. My main problem is that the area is so sensitive and prickles easily so I need to wear low neck clothing as the less fabric on it the better, but of course this exposes it.

I am trying this treatment because it is 6 years later and each year the skin has become a little redder. But its really been this bad since year 3. There is still some marking on the sample patch but it is reduced. I've read that it can take several session sof laser work on one area to remove it all.

Paul is brave to have endured this treatment twice and your support must mean so much to him.I did not think one could have Rt twice - but I recently read if it's a longer time between treatments that sometimes it was tried.
You are correct that sometimes you need to push the C word to the back of your mind - ever vigilant - but the reason we try to recover is so we can live a little again.

Hi Pauline, My neck looks so red and veiny but was told nothing they can do?
I hoped togrow a beard tocover it but cannot even do that only blotches of hair here and there!

Paul

Hi Paul
Good to see you here. Hope you are coping generally.

That was what I was told repeatedly. I think they just concern themselves with the cancer check up aspect rather than the cosmetic aspect. I do believe some of the caution must be financial.

I also asked at my GP surgery about 2 years ago and a lady doctor took an interest and wrote to the same hospital I then attended for check ups. She enquired about this of a different department and of a dermatologist. Back came the reply that yes they probably could do something with lasers if the basic laser test worked. BUT the surgery wrote to me that I would have to be means tested at the surgery as it was considered cosmetic, blah blah. This amazed me and I just felt discouraged by the attitude in general so I just had a camouflage lesson and have used make up very effectively since. But it is a pain to do and obviously for a man less easy to get away with and you have the stubble problem too.

However on my very last oncology visit a new radiotherpay consultant was also in attendance and he seemed interested in the scale of my damage and I believ he discussed it with my regular onc after I left, as within 2 weeks I had a plastic surgery burns appointment.

Maybe they think if you have survived 6 years it may be worth spending more money!
But I think they do underestimate the impact this redness has on our self esteem. The worst aspect is the scale of the area for many.

One problem I also have is that the area itches near heat or sunshine or just if it feels like itching. But get this I have noticed that the small lasered area is not itching anymore.

Hi Pauline, Well yes I get stared at and in the summer more noticable,What with my big lip and my speech I feel different all the time and I have somehow tolive with it.
Was told no way that my Consultant would agree to skingraft even if I went private . My gums are alwys sore and my teeeth still rotting so guess thats the reason.


Paul

So sorry to hear your gums are so sore.

Paul just an update. I went along to see the consultant, but he was off sick. Saw someone else and he went on and on about possible hyperpigmenation. I've found it very off putting yet my first result was good.

He did no laser work, but said next time they would do another sample patch, but agreed the small sample result was noticeably improved compared to the remaining red veins.
It seems like it may be a long slow job. This time I was prescribed a skin numbing cream to rub in an hour before my next appointment. Both my husband and I commented the following day what a horrible feeling of deja vu we had walking the long walk to the pharmacy. The longest walk in my memory was the under corridor one to the pharmacy at Cheltenham to collect the morphine. Some horror memories never go away.

i am so GLAD this board is here - time and time again I read about patients being able to share and help others it has so helped me and therefor helped my family - thanks to all who share....