5 years post treatment. Anyone having issues with voice and pains in neck arms and hands?

Hi Phil

I'm sorry but I have to admit to being quite excited to read your post.

I'm nearly 2 years post treatment for base of tongue cancer.  I had a left neck dissection and robotic surgery to remove the tumour followed by rt.

An odd voice and a horrible feeling in my throat were the first signs for me that something wasn't right.  During treatment though my voice disappeared completely and has never recovered.  It's extremely hoarse, barely audible and very uncomfortable to speak.  I've had loads of voice coaching etc by specialist teams but to no avail.  It's been confirmed that my epiglottis isn't closing properly and neither are my vocal cords.  I can definitely feel there's a problem on the left hand side where the tumour was and where the rt was targetted.  My neck is incredibly uncomfortable/painful and my shoulder still presents problems with certain movements.  I can't say I have severe problems with pins and needles but I do experience them in my left hand and foot.

I would be really interested to know whether you also have problems with a feeling of breathlessness and chestiness.

To date no-one has come up with an explanation as to what is going on - I don't think they even know.  You're the first person I've heard of who is experiencing a similar problem with their voice!

I havn't been able to work since my treatment started so I was also interested to read in your profile that you took early retirement due to your ongoing symptoms.

I'm so sorry you're having so many problems still but thankyou so much for posting!  I don't feel quite so alone with the voice problem.

Linda x

Hi Phil, it sounds as if something could have got damaged due to the treatment, i have never had tonsil cancer as my 3 cancers where elsewhere in the head and neck area, including the removal of the voicebox so my vocal cords went with it, I'm afraid i cannot be off much help, all I know it sounds as if you are in a lot of pain as i have taken very similar painkillers as you due to severe pain. Has this been happening from 5.6 years? It must be so irritating and uncomfortable for you and there has GOT to be a reason, i think you will have to insist that your condition is looked into again, i have been through quite a testing journey with cancer and never had or heard of this continuous severe pain so something is not right. I can understand short term pain but not SEVERE pain over this length of time, you might have to keep on at them until they get to the bottom of this. I honestly wish you all the best and hope you can get something sorted to give you the quality of life you deserve. Take care.

                                                           Chris.

Linda

I'm interested in your shoulder problems.  I had 2 right neck dissections back in January and also have shoulder issues.  I can lift a bag of cement quite comfortably, but can't reach out to pick up a cup of tea!!!

I'm getting great help from physio, but my surgeon thinks this is permanent damage.  I can live with it, but I am interested if yours got better with time - even if not to full movement. 

Hi Peter

Yes, my shoulder did get better with time, especially with the lifting function to the front ie picking up a cup of tea, and bringing the arm up out at the side.  I too had lots of physio for my shoulder and my neck for about 18months.

I do still have issues with my shoulder which are difficult to explain but using my arm through certain planes is very painful through my shoulder although I can actually move it now.

It certainly took longer than 6 months for me to be able to lift my arm although it did improve gradually over time.  I would say it was nearer a year for full functionality.  I'm keeping my fingers crossed that you will continue to see some improvement too Peter.

All th best

Linda x 

Hi Linda,

Yes I also have problems with breathlessness and chestiness. In fact GP has put breathless down to me developing Asthma and I take a pink inhaler in the morning and at night+carry a blue inhaler in the day in case I have an attack. I am not fully convinced of Asthma conclusion though.

My chest can get very wheezy sometimes and I cough mucus, therefore I tend to be given antibiotics as they think I get infections.

How is eating for you, do you have to be selective with textures etc?

I am now exploring having an injection int5o left cords that moves them nearer to the right ones to see if my voice stabilises a little.

Thanks

Phil.

Hi Chris,

The oncologist, palliative and nerv people concluded it is permanent damage caused by RT with fibrous tissue tangling with nerves and they cannot do anything to stop the tangling as too dangerous to have an operation in that area.

Oncologist reckons he has only seen this twice in his career and its rare, the last person managed it with fentynol but still had issues,

I read up on similar cases in the US and again it seems rare bu happens.

I am having a call with GP tomorrow to discuss possible cannabis oil treatments instead of upping my fentynol dose as I just get too out of it. I am also looking fort a good acupuncturist to try.

Phil

Hi Phil

Wow.  That's so interesting reading your reply to me and Chris.

I've been doing quite a bit of research for about a year now as I have been convinced that something really isn't right in my neck area with all my symptoms and especially my lack of voice.  The symptoms you describe of wheezy chest and swallow are the same for me although now I also have an added issue of scar tissue on the base of my tongue which has grown where the tumour was removed forming a shelf for food to sit on. And yes, I do have to be selective about the type of food I eat due to various issues including swallow and taste.

If my research is correct I think you're right about an incorrect diagnosis of asthma.  My feeling is that one of the injured nerves is called the Recurrent Laryngeal Nerve which innervates the vocal cords.  It is more easily injured or can suffer compression on the left hand side as it has a more circuitous course than the right.  When the vocal cords don't close properly or there is palsy the voice can be affected as can the swallow.  It is easy for food or liquid to go down the wrong way (which can lead to infections) as the closing of the vocal cords help prevent this and food can accumulate in the area due to a weak swallow also causing infections.  Breathlessness is also a symptom of Recurrent Laryngeal Nerve damage.  I've also thought for a long time now that I've got fibrosis in my neck which causes some of my symptoms although the hospital team like to call it soft tissue damage.

I have read about the injection for the vocal cord but not considered it yet as I havn't seen the consultant for a few months due to Covid and I havn't had a chance to mention my theory.  I must stress that it is just a theory so I don't advocate that you stop using your inhalers or anything drastic but it does all make sense.

You mentioned before that you're experiencing terrible pain.  Is that due to the pins and needles and numbness in your hand?  Presumably that's a constant pain?

Did you have a neck dissection out of interest? 

And I'm really interested to have a description of your voice now.    

I can't thank you enough for posting Phil.

Linda x

Hi Phil,

Like Linda, I was really interested to read your post. I am very sorry about your voice problems and likely RT damage. (Linda’s too which are severe also). What I understand less is that Oncology teams seem to claim to know nothing about this and that it is rare - perhaps you 2 are extreme cases but many people, myself included, have long standing voice issues after Chemoradio for tonsil or tongue base tumours. Several members of a newly formed Patient Support Group where I live talk about the many voice changes they6 have - particularly deeper, gruffest, hoarse voice which is unpredictable, weak and difficult to project. When each one of us ask about the problem we are usual told by Oncologists that this is something they never see or is ‘incredibly rare’. They certainly don’t have any solutions. There is no joined up thinking across the country on many post-cancer treatment issues, so each doctor thinkis they are unusual, as they never hear about others........I don’t have an answer either, but as this (mild for me) problem affects me everyday, I will continue to mention it to the Team and correct them every time they try to say it is unusual!

The neck pain thing is also something largely unrecognised by ENT & Oncology teams. Many of us develop neck pain post-treatment (the commonest being the arm/stiffness after neck dissection, which should improve with time and exercises). Others get an increasing pain in back and sides of neck after RT - I just can’t shift mine. It requires exercises several times a week to keep it at bay, but it won’t go. I am aware that some people go on to need Botox injections into painful neck muscles (several have this in my hospital). It seems strange that no exercises are routinely given to RT patients for neck stiffness and pain, in the same way they are for jaw stiffness and pain. 

I think these 2 areas are ones that the Head & Teams could really improve in - information and support for long standing voice changes and also the problems of neck stiffness & pain. So thanks both for sharing and I wish you the best of luck in getting treatment and help for these life-affecting issues.

Hilary

Hi Hillary,

Thanks for the reply. Regarding what I said about being rare, this was referring to the chronic pain I am getting in shoulder, arm and hand staring to develop after 5 years. My Oncol etc are aware of this and the t5hing you mention potentially happening but earlier on after or during treatment. Hope that makes sense.

Thanks

Phil.

Hi Linda,

I spoke to my doctor the other day about5 my pain increasing but they just redacted by upping my Fentynol dose to a 75mg patch, up by 25 mg. Seems I am just going to be a junky lol.

I am now looking to try out acupuncture once things open up a little from Covid. I am also going to push for a second opinion about Botox injections as they told me it was too dangerous for me.

After going through my nortes taken over time I think thy diagnosed me with. "Brachial Plexus-Associated Neuropathy After High-Dose Radiation Therapy for Head-and-Neck Cancer" although the never formally said this. When reading about it it can affect breathing also.

I am really starting to feel like I do not have Asthma and its all to do with finding it hard to get rid of mucus that can build up sometimes and if I also get anxious or out of breath walking. My chest feels fine today and I have taken no inhalers for it.

Voice is becoming a nightmare and sometimes decides to stick high pitched. I find it quite embarrassing at times and also people ask how my cold is a lot :-( this gets a bit annoying and I see it as being 'voiceist' lol.

Phil.