Base of Tongue Cancer

Hi, sorry that you have to go throught this journey.   As far as virus is concerned we practically all have it, in most people it stays dormant and cause no problems.  My husband has h&n cancer caused by a different virus and we are also baffled.

As far as treatment are concerned, everyone reacts differently but generally no major side effects until halfway down treatments.  I would suggest you feed yourself properly, even if you do not have any appetite, enjoy now and try to gain a little weight to have a safety cushion and stay hydrated.  Nutrition and hydration will make the side effects bearable and speed your revovery.

Wrapping your head around this is not an easy thing to do and you are totally normal, just do the best you can.

On a light note my husband has the same doctor than the famous Michael Douglas, they are quite proud of their success at the hospital :0)

Wishing you the best.

Hi Penelope

Thanks very much for your response. Please can I just ask what I can expect in terms of potentially being able to eat something again. I'm hearing all sorts of stories of people still on tubes one year after finishing radiation. How is your husband managing after his treatment?

Thanks again

Paul 

Hello younpa.

I was 54 when I was diagnosed with base of tongue cancer with a spread into my left lymph nodes.  No symptoms apart from a lump in the neck.  Came as a complete shock to me as I'd always been fit and healthy.  I never found out if mine was HPV16 or not.  I didn't want to know as I believe that the HPV16 ones are easier to treat and I knew I'd be disappointed if mine wasn't.  

The treatment is tough, but it's doable.  It messed up most of 2013 for me but I'm definitely still here 5 years later and very much alive and kicking.  I do suffer sometimes with poor appetite and I have a bit of a dry mouth.  Apart from that life is pretty much back to what it was before.  

If I can help you with anything just give me a shout.  I pop into the group most days or you're welcome to add me as a friend so you can message me.

Best wishes for your treatment. x

Hi Paul,

There are lots of us still alive and kicking after being diagnosed with HPV-16 positive cancers, myself included.  For me, the cancer was found about five years ago and I had treatment over the summer of 2013.  I don't drink or smoke either, I had and have a very healthy lifestyle, and the consultant described it as "a bit of a bummer, really"!  HPV-16 is extremely common, and despite the fact that it has been linked with multiple sexual partners, it can actually be transmitted in many ways.  Skin-to-skin contact is one of them, as is transmission during birthing, so as you can see there is a much wider chance of you having contracted it than you may at first have thought.  It also lies dormant for decades in some people before causing problems, so basically it is just bad luck and nothing more.  There is certainly no reason why it should be a cause of upset in your current relationship.

I had 30 sessions of radiotherapy and six sessions of chemotherapy, plus four molars removed and a temporary PEG tube fitted.  The problems that you mentioned as being the side effects of radiotherapy were not the main ones for me.  I had no speech problems at all (though my cancer may have been in a slightly different site to yours, being located in my tonsil and lymph nodes on the left), and swallowing problems during radiotherapy were limited to the effects of the burns inside my throat caused by the treatment.

While I had supplemental liquid food through the PEG tube, I continued to eat throughout, although I did need to change what I ate in terms of both the ingredients and the texture.  My mouth and throat were very tender and raw, so I could not take anything with any seasoning, spice, sweetness or acidity, nor could I manage anything with any kind of abrasive texture, including gritty or lumpy foods.  As my mouth and throat healed, these restrictions eased and I was continually finding that I could eat foods that I had previously found impossible.  By about 6 weeks after the treatment finished I was eating relatively normal foods, as long as they were covered in lots of sauce or gravy to help them down, and as long as they din't contain particularly large lumps of meat because I couldn't chew it up so well with my reduced number of teeth.

Personally, I still have a dry-ish mouth, but this continues to improve and its only real effect is to wake me two or three times a night for a mouthful of water.  I also have a dry throat, because the radiotherapy destroyed the normal mucous membrane that lined my throat and so foods don't slide down as well as they used to.  Sauce, gravy and 'wet' foods are all that is needed to manage this.  My throat is quite scarred inside - the consultant described it as being at the high end of scarring that he had seen - so most people have less trouble than me in this respect.

Now, five years on, the main constraints are that I still struggle a little with meat because my throat isn't as flexible as it used to be with all the scar tissue, and so it is difficult to persuade it to go down properly unless it is in small chunks.  I also find bread tricky for the same reason, as it balls up in my mouth and refuses to go down my throat.  Some other people find these easier, while some share my problems with it. 

There is a huge range of experiences, and please be cautious of interpreting one person's bad experience as being representative of the group as a whole.  Some people do indeed have long term issues, but for most people the effects are limited to what I have described for me, approximately.

Back to the HPV-16 virus, it is one of the most responsive of all to treatment, and the consultant will be aiming for "cure" rather than "palliative" treatment.  The treatment is harsh, but the worst of the effects only last for a relatively short while (measured in weeks or small numbers of months), and then the healing process kicks in and you improve steadily.

I found that keeping a sense of humour about the whole thing was my best way of coping, and I was always looking for the funny sied of everything that was happening.  I found it much better than feeling sorry for myself.  I couldn't do anything to change the situation, so all I could do was make the best of it.

Let go of what you think you know about the side effects of radiotherapy, because unless you have seen them first hand then you can't equate something you may have found on a generic website with your own individual circumstances.

Best wishes,

Josie

Quite frankly, if I were to tell you that my husband could now swallow even water until december 15 and that he had a steak last week, would it make you happy :0)

It was not a problem with swallowing that cause his the issue, more a terrible taste and super thick mucous ghat made him gag.

When you feel terrible stay away from your favorite foid you do not want to ruined this pleasure.  Avoid dry food those are harder to swallow and my husband started drinking milk with his mesl and it helped.

Thanks very much Margaret. Your diagnosis seems to be similar to me. I've been very low today trawling UK and US websites looking for hopeful positive messages, which seem very hard to locate. My mind is jumping so far ahead worrying about not being able to travel abroad and eat out. The impending sense of loss seems endless which is so disappointing for me having worked for 36 years and looking forward to retirement. Your post has lifted me somewhat so thanks again and I have added you as my first friend. Paul x

Thanks very much Josie for such a detailed response. I also have to have 6 molars taken out which are mainly capped teeth so I assume that  I will end up becoming a vegetarian. The side effects of radiotherapy do seem daunting as today I have read of people who subsequently have brittle teeth which cant be removed and end up falling out. I will heed your advice about radiotherapy treatment and how it affects everyone differently. Some of my anxiety is around a recurrence in the same region which I understand would not allow further radiation treatment.  I just wish I could smile at the moment or even just be able to lose myself in a novel which seems impossible. Thanks again for taking the time to reply and I've added you as a friend. Paul 

Hi Paul

My cancer was a 2 year misdiagnosed tonsil with bilateral lymph node spread......so, different to yours but similar treatment and definitely similar fears. I can feel and hear your mind jumping as I read your post and I'm sending you a virtual hand squeeze.....not much help I know at this stage but I promise you everything will settle into its own space and you will feel calmer. 

You will see the same advice time and time again on this site....... Take each day as it comes.....Its usually nowhere near as bad as you are fearing at this moment and any side effects take time to kick in which gives you plenty of time to give a shout out and get sound advice on individual concerns. 

Best wishes

Gill....

Thanks Gill. I really do hope that I may start to feel calmer at some point as this is week 3, the fear is constant 24/7 and I just cant concentrate on anything. I know everyone says keep positive but with all due respect they're not in our shoes and It's so difficult.

Hi Youngpa

I was in a similar situation to you in December 2015; I was 59. I had 9 molars removed and then 6 weeks of chemo-radiotherapy. I lost a load of weight (this is a good thing - I was dangerously obese) but when it became too much too quickly I was fitted with a naso-gastric tube. This was an inconvenience but not painful. My cancer team encouraged me to start to swallow again and I only had the tube for about 8 weeks. Eating, and especially swallowing, was a challenge to begin with but perseverance paid off and the team kept me well supplied with painkillers etc. while the healing progressed. I have recently been told that it was HPV.

Now? I can eat everything I want with the exception of meat (so what?), bread and cakes (don't miss them), and, bizarrely, chocolate (makes me cough). I am exactly in the middle of my recommended height/weight range and am probably fitter than at any time since I left primary school. I have an increased awareness of 'enjoying the time you have' as the C word caused me to accept my own mortality and I feel that, in retrospect, the diagnosis and subsequent treatments were among the best things that have ever happened to me!

No promises here, and everyone has his/her own problems, and I know that the bloody thing may come back, but I hope my experience might cheer you a little.

Keep smiling (no, really)

CS