I found the ubiquitous lump on the left side of my neck in the late summer of 2007. After a fair amount of bouncing around the NHS system and enjoying endoscopes, biopsies, ultrasounds and CT scans, a lumpectomy finally revealed it to be a reasonably large secondary on a lymph node. A PET CT scan failed to find the primary however, and so we opted for a neck dissection along with a tonsillectomy, and tissue removal of the back of the tongue and throat - hoping to hit all of the likely suspects in one go. By this time I’d activated my medical insurance and went privately for this last Op, which was all accomplished on November 23rd 2007.

Strangely the histology all came back negative placing me in that select (2-5%) group of people with an occult primary. While I had - looking back - breezed through the biopsy and lumpectomy, the neck dissection, and tissue removal hit me quite hard and I struggled to recover from them. I also had a complication in the form of a bleed (needing an emergency re-admission), and a severe taste disturbance which coming over Christmas left me feeling fairly low.

During the follow up I suppose I rather arrogantly felt that I’d done my bit for King and country and so the suggestion from my local cancer team in the New Year that I now undergo Radiotherapy was not particularly welcome. I eventually declined it, based on the fact that the side effects would be severe and the benefit at best would be unproven. After all there was no primary to irradiate.

I asked the consultant surgeon who’d performed the last two ops to take me on as a private patient and for a year or more I visited him regularly for a nasal endoscope and general examination. In that time I also had an MRI scan just to make sure nothing was lurking away in the background. I even risked a holiday in the U.S. with my kids just before the first anniversary of the last Op. All was well.

So confident were we that I arranged to go for another PET CT scan in late February this year just to confirm that all was clear, but 6 days before I was due to have it done, I found a lump on the other side of my neck. I let the surgeon know, but clearly we both decided to go for the scan anyway, and a little over 48 hours later one evening he called me to let me know the results.

The new lump was indeed a tumour, or more accurately two or perhaps more in the lymph nodes on the right side of my neck. In addition to this I had a tumour on my tongue. Although well lateralised to the left side, on this occasion it had crossed the midline and infected lymph nodes on the right. There was evidence too of a spread on the left side indicating that not all lymph nodes had been successfully removed in the original neck dissection. Tricky.

From thinking I had no longer had cancer I have in the period of a little over a week now had to adjust to having four, five or even more tumours on three sites.

The consultant surgeon referred me to an oncologist, who discussed the options with me. To date, we’ve met twice, the latest meeting yesterday. Chemo and Radiotherapy are a ‘given’ the only dispute is whether they can preserve the parotid/sub-mandibular glands, or at least part of them to maintain salivary function. The other argument is whether I will accept ‘Pegs’ feeding (through a tube) or struggle on.

I meet with a Doctor in the Royal Marsden next week to discuss the possibility of joining a midline clinical trial in which the focus of the radiotherapy includes the sites of diseases, but bisects the salivary glands leaving at least some function. We will also decide whether I commence Induction Chemotherapy there, or back in home territory in Sussex. After the 'bouncing' and complete lack of communication I’m keen to avoid the NHS system. I'm lucky to have private insurance so will go that route.

I don’t regret the decisions I took 16 months ago, although clearly I wish the outcome had been more positive. The situation is recoverable, and the treatment I’m facing now is no worse than it would have been then. At least I go into it knowing that there will be a benefit and knowing what my original cancer is.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello John and welcome to the forum.

I read your post with interest and found the mnatter of fact logical tone rather disarming i must say.My husband was also one of the anomilies having a primary tumour on one side and a secondary tumour in his parotid gland on the other side.The medics never did discover how the spread occurred,but radiation refusal was never an option and in my humble opinion nor should it be.This is the most pernicious of cancers and really does require all the ammunition you can fire at it.

As for a PEG tube once again in my opinion it will be very difficult to undergo radiation which will undoubtedly be aimed at both sides and probably the floor of your mouth as well and still maintain adequate nutrition and hydration.These two factors are the mainstay of your recovery prospectsso i would encourage you to think very carefully before"doing it tough"

Hi there John
I read your post with interest but must say that I was also taken aback by your attitude to your 'trip' so far. Well done to you I say. Mind you, I guess my husband also got through the initial stages of his treatment relatively unscathed ~ it was the chemo to a lesser extent but definitely the r/t that was hell on earth. I wish you well.
Trevor had a PEG fitted, the day he couldn't swallow! My suggestion would be to be sure to have one fitted BEFORE you start your chemo and r/t. Some on this forum have been able to maintain nutrition while undergoing their treatment however there are many who have not and their tales are a lesson to be heeded. Trevor's PEG was his lifesaver so please be sure to discuss it fully with your team, early on.
Do you have someone to care for you or are you on your own? This can be a very tough journey for a carer so be sure to include him/her so that everyone knows just what is happening and what is to be expected.
This forum is a true life line, John so don't hesitate to post away with questions or in sharing your own experiences. I wish you well and look forward to supporting you along the way.
Hold on tight!
Cheers from Down Under
Deborah

Thank you both (and also Dr Joshi for correcting my mistake in terminology) I’m a single parent more used to caring than being cared for and I think my major issue in all this has been my reluctance to relinquish control and allow others to take over my life. Clearly this makes me a difficult patient, and my doctors and nurses have to be applauded for their patience with me!
My initial diagnosis coincided with my divorce and sale of my business and home, and we somehow managed to squeeze the various medical procedures in with selling up and moving, while caring for the kids. They and I moved in to our new home one Friday, I had the neck dissection the next, and by the Sunday night I was back at the kitchen sink, where I confess I feel most comfortable! The looks I get when insisting that staples are taken out, scans are conducted and whatnot is done only within school hours, I’m used to dealing with now.
I had little time for the cancer, so you can imagine I had no time for the radiotherapy, and batted it away with some vigour before finally agreeing to it when confronted with multiple tumours on multiple sites. It is going to be difficult, I acknowledge that, and my main concern through all of this is whether I had the guts to see it through. I did in fact discuss the likely prognosis if I refused treatment, and weighed it against the likely effects of that treatment if were to stay the course. I think on balance I’ll give it a go.
My heels are firmly dug in as regards the pegs though. A small percentage never come off them again, and I’m not prepare to be one of them. Right now my only strategy for ensuring that is to not go on in the first place. I’m sure you have vews on that!


John

my brother in law had a peg fitted and needed when he was going through quite agressive radiotherapy .When he was able to swallow food again which he did really quickly through sheer determination (soup and mash potatoe with sauces being his favourate)he also supplimented with ensure via his peg to make sure he got all nutrients to build his strength up. it was only temporary and he had it removed as soon as he was strong again .He did not want his peg but he did need his nutrients x

Hi John,

Sorry to hear that you have to go through this horrible treatment, but I must say yours is a very interesting story.

My partner was one of the 'lucky ones' who managed radio and chemo without a peg, however he was having most of the radio aimed at one side of his neck - I assume you are going to be treated both sides? We had been very determined before hand to make sure he had this really healthy diet, but by week two that went out of the window and he survied on weetabix ready brek, protein powder, milk and those special high cal fortisip drinks that the hospital gives you for about 6 weeks. Unlike many here he did not really suffer with a sore throat until the end of radio, but the chemo and radiotherapy made him feel nauseous and everything tasted so vile that he really didn't want to eat. Having said that he has a history of acid reflux and a gallstone so I suspect he may have been particularly susceptible to an uncomfortable stomache. I don't know whether a feeding tube would have helped in that regard? All I know is that I had to nag like mad to get more than about 1000 calories down him in the last 3 weeks or so of treatment and I just wondered how he would have managed if I hadn't been there to do preparations etc when he was feeling rough. He lost 30lbs in 6.5 weeks which he could afford to do as he was very overweight, but it was a bit of a worry as his RT mask became loose, which is not a good idea. You really dont want to be losing weight if you can possibly help it during treatment.

Good news is that four to 6 weeks after treatment his taste buds and appetite started to return. 5 months after treatment he is eating almost anything, has a huge appetite, and has definitely started to put weight back on.

I believe that they can put in a PEG port as a prophylactic measure before you start treatment (they do at Brighton if you are being treated both sides - where exactly are you in Sussex?), and then if you need it you can use it, if you don't its not really a bother. Might that be a compromise? I think that the % of people that end up using a PEg for life is minute.

By the way, I think Pauline T who posts here and had very agressive radiotherapy - both sides of her neck for an occult primary - managed the treatment without a feeding tube, but she did have to have tube help just after treatment ended. You might like to try and contact her direct through this site to see what she advises.

I wish you well with your treatment. Its tough, but don't worry you will get through it. If you are in the locale and want to chat directly, please don't hesitate to contact me through PM.

Best wishes,

Cathy

John,

I just finished my radiation on March 13th. And did so without a peg. But it was pure determination because I have a one year old and 6 year old. I ate as long as my mouth allowed. I drank the boost drinks but bought generic ones. I still drink them as a meal supplement because I only eat one meal a day and 2 supplements. But getting better by the day. Stay strong you will loose weight. I lost 32lbs. Do the best you can. Scrambled eggs has been one of the things I didn't have a problem with eating the entire course, also I did well with cold items, Iced Coffees help also as Trev will tell you to. Best of luck to you!

hi john
i just wanted to say good luck with your upcoming treatment,also regarding the peg after 2 weeks after starting chemo and radiotherapy my taste buds just vanished and anything i ate or drunk tasted disgusting and no amount of coaxing would get me to eat i just had no desire to do so,i had an n.g tube fitted but felt everyone was staring at me plus because i was constantly sick the tube would come out so they would keep taking me back into hospital to get rehydrated as even water had to go through the n.g.eventually i pleaded for a peg which at first they were reluctant to do as i had a gastric bypass done about a year before but the surgeon who did my bypass said he would do it.i woke up with it in place and it is brilliant it hides under my clothes and i have my feed overnight so no one is any the wiser.it is 2 years sine my treatment finished and only in he last 3 months have i been able to eat but under supervision my my dietician the aim now is to eat enough and the peg will come out,anyway john whatever you decide i wish you luck.take care love shirl xxx

Dear John (sounds like a good name for a song!)
You're right ~ I do have an opinion on the PEG business.
Trevor's initial story was very similar to your own ~ SCC (secondary, unknown primary) in his neck with 3 lymph nodes involved, tonsilectomy and neck disection followed by chemo and 7 weeks of r/t to both sides of his neck and also the front.
To be blunt ~ by the second week of his r/t he was nearly choking on the 'muck' in his throat because this s%*& is so thick it clings to the throat like blue tack and he was coughing up (and we're not talking your average bad chest cold type of cough, but a dragging, tear the soles off your feet and cough them up type of cough, all the while while your throat is raw from the baking it's getting) what looked like lumps of raw chicken meat!(you know how the flesh just falls off a well cooked chook ~ now you're getting the picture).
His taste buds were shot and everything tasted so bad he couldn't eat but that teamed nicely with the total lack of saliva (glands killed off by r/t)that just made anything he put into his mouth attach and line his mouth with the tenacity of barnacles on the bottom of a boat.
The oncologist recommended having a PEG fitted prior to any treatment however the pissant r/t registrar patted him on the back and told him that 'a big strong fella like you' won't need a PEG. Fortunately the dietician took it upon himself and went through the back door and arranged to have it fitted. By then Trevor wasn't eating so without the nutrition provided via the PEG, I cannot imagine what would have happened ~ he still had 5 weeks of treatment to go and guess what? The effects just keep on coming after that. Three months later he was able to get some food down the hatch and the PEG was out within another couple of weeks.
My opinion? I think prevention is better than cure any day. Until you have experienced the effects of r/t you can't know how dreadful it CAN be. Maybe, and I hope it's the case, you will do fine John however if you have children to care for, why make things tougher on yourself than they already are. Don't risk putting your kids through more than can be avoided. If you dont' get enough nourishment, you'll end up in hospital and what then????????
I can be a bit of a control freak so I appreciate how difficult it is to let someone else shoulder some of the load, but there will be no medals, so be good and don't just say "NO".
Ahhhh. That was a bit of a blast, wasn't it? I won't apologise though and hope that you give it all a great deal of consideration. You will gets loads of support from this site regardless John and I hope that all we hear is how well you are doing.
You take care of yourselves! How many kids do you have and what ages are they?
Cheers from Down Under
Deborah

I thought long and hard about how graphic i could be in my explanation of the effects of radiaotherapy.Having read Debs post i don't need to bother!!she has covered the topic in her ususal down to earth factual manner most eloquently.lol
Robin was 5foot 11inches,weighed 15 stone and was built like a brick outhouse.He arranged his treatment so he could work every day and have his RT late afternoon so it wouldn't interfere with his work as a plumber.
He was never even offered a PEG as he had laughed off the effects of surgery and was back at work within ten days.He survived four days of Rt,and was taken into hospital to have a peg tube on day 14.He received rads to his right and left side and also the floor of his mouth and he had every side effect that Debs listed,plus severe burning to his neck,thrush,ulcers,sores,and his weight plummeted like a stone.He had no one to take care of but himself and his business,he was cared for by me 24/7 and still it beat him.

John you can't talk yourself through radiotherapt,so why even try to do it tough with kids to care for.Rob was eating again before his recurrence but the back up of having his peg tucked down his undies was a godsend.Noone even knew it was there..

Even if you never use it having a peg in place before treatment starts is far easier than being rushed into hospital with dehydration and malnutrition belive me.

liz

Good Morning everyone, and hello again. I went to the Royal Marsden yesterday and met another bright young Doctor willing to fill me full of poisons and stick my head in a microwave.

The difference in the approaches are subtle but quite interesting (Dr Joshi go on alert for corrections, I’m repeating all this from memory!) The Marsden offer a 6 week course (2x5 days) of Induction Chemo as opposed to Brighton’s 9, two drugs instead of three (the Marsden go for the Cisplatin and 5-FU but not the Taxotere) and as an inpatient rather than the outpatient regime which Brighton was offering. The Radiotherapy too was slightly different as they offer the collimated beam - IMRT - which is more accurate and mitigates (note: not eliminates) some of the more extreme side effects as regards the parotid’s etc. Both will be giving Cisplatin at the same time.

I can of course pick’n’mix and take either treatment at either hospital.

She also gave me (when pushed) her estimate of my survival chances, which she rated at 65%, Brighton’s opinion was 70%-80% and this leads me to the biggest concern of all, whether these estimates are being spun to coerce me into taking the cure.

This site and just about every other list the overall survival of mouth cancer as a maximum of 50% when lymph nodes are involved. I’m not sure whether they’ve taken into account the 1% of patients who die during PEG insertion and the 2% of patients that are killed directly by the Chemo/Radiotherapy… In my case I have had lymph node involvement on two separate occasions on both sides of the neck, I cannot see that improving my chances somehow!

I’m going to talk to the oncologist in Brighton on Friday if I can be squeezed in, and maybe request a meeting with the cancer team. Informed decisions can only be made in the presence of information. I’m mindful that the If, When and Where need to be dealt with in short order though, and I thank you all for your help so far. That seems inadequate to explain the strength I’ve drawn from you all and these discussions, I think you know what I mean though.


John

Hi there John
Good for you, I say chasing up so much information. I would forget what the first person told me as soon as the next one started to speak, I'm sure ~ particularly when it comes to figures. One thing is for sure, your decision will definitely be an informed one and no matter what it is, I wish you well.
Cheers
Deborah
PS I'm sure there would be a statistic for the number of people who get hit by a bus before starting their treatment ~ with or without a PEG! Tee hee. I'm only stirring!

John while i applaud your tenacity at getting all the options available i am mindful of the most relevent information we all receive.
Delay is not a sensible option as this kind of cancer can be horrificly aggressive,and while you are procrastinating it is still working its destruction.Statisitcs only matter if you are one of them.Robin was given a 90% chance of a ten year survival/cure,and he was dead 7 months later,others here who had one foot in the grave,are still here to tell the tale,there are no guarentees and no absolutes but delay can be fatal so i would get treatment underway.

regards liz

Hi John,

Wow you really are being thorough. I don't know much about induction chemo except that it is sometimes used to reduce the necessity of neck dissections and seems to reduce the risk of distant mets. I would imagine IMRT is preferable to the radio offered at Brighton for reasons of which you are aware, however I wonder how easy/practial it would be for you to undergo daily treatment in London given your child care responsibilities?

Re stats, I don't think doctors can really estimate the chance of survival. We saw Mr Weighill yesterday at Brighton and he argued that most head and neck cancer research is "heresay". It is such a rare cancer that they have not been able to undertake the kind of large scale random trials that guide breast cancer treatment.

Most of the research I have read is retrospective and looks at a few prognostic factors and not all. Much of the data available comes from studies that are undertaken for different objectives and most of them include evident bias. Moreover, I am not sure how applicable sample %s are to individuals for reasons that are evident in Liz's example. I imagine that science has only just begun to identify some genetic prognostic factors....

I guess that the stats the medics give are based on their knowledge and experience and your particular cancer, but I agree that they might tend to be optimistic to encourage you to start treatment. But who can blame them? Not having treatment isn't really an option is it?

Having said all that, I have read series that argue that the length of time from diagnosis to start of treatment and the actual length of RT treatment do have a bearing on outcome (the shorter the duration of the RT, the better the outcome). So for that reason I would urge you take Liz's advice and a) get the wheels in motion soon and b) get a peg fitted beforehand as it would not be in your interest to have to interupt treatment to have one fitted.

Best wishes,

Cathy

Hi Folks,

Apologies for the extended gap before replying but had to make the decisions and let everyone know before posting on a public board.

I will be taking Induction Chemo at the Royal Marsden in Sutton and then the Chemo -Radiotherapy there as well. It’s important for me to state I have every faith in the Doctors and Surgeons I have consulted in Brighton, but the IMRT at Marsden offers a better chance of at least some post treatment function of the parotid (salivary) glands.

Additionally induction chemotherapy as an inpatient at the Marsden actually had a lesser impact on my ability to care for my kids without compromising the care I would receive. Although I hate to cut the umbilical cord with Dr Simcock and the quite fantastic individuals in the Brighton team, I have to take a holistic approach to this and consider my family as well.

In no particular order - Liz, Deborah, Charly, Cathy S, Mom of Two Boys, and Shirl, I thank you to the bottom of my heart for your input and support. Although I didn’t engage you directly or individually on the posts, I drew strength from everything you said. I hope that I can show a fraction of the guts that you and your partners have demonstrated over the coming months as I know this one is going to be tough.

My one doubt in all of this was whether I had the stomach for the fight and I don’t think I’m being too dramatic in saying that the experience of this forum was one of the factors that made me determined to give it a go. Yes, there was a moment or two when I considered letting nature take its course, and you all must share the blame for turning me away from that.

Final word to Cathy S - I live in Bolney, about ten miles up the A23 from you, and know Mr Weighill well. He performed his third Op on me (in as many hospitals!) a couple of weeks ago. Although sadly he wasn’t receptive to my request for air-miles or complimentary steak knives because of my patronage, I can think of no better surgeon for you to consult. Somewhere toward the end of this process I might need another neck dissection, and if I do, I’ll make damned sure I’m on his list for the procedure.

All the best


John