It feels just like I'm going through radiation again...Help!

Options
teacuplady
teacuplady Member Posts: 20
in Head and Neck Cancer #1

I was treated for cancer of the voice box almost 5 years ago and have done fine up until this fall. I've been to my ENT and Radiologist and then down to Florida for a month's vacation. My symptons have gotten worse each week, and I am so happy to be home again. I'm going for a Pet Scan and to see my Radiologist on Wednesday. I can't believe I have all the same symptons during the worse of my Radiology/Chemo treatment:  throat pain, ear pain, gland pain, difficulty swallowing (It's almost impossible to eat or drink), hoarseness, and the worst is very strong nerve pain in the side of my face. Thankfully I don't have every sympton at the same time. Has anyone heard of getting these symptons 5 years out of radiology? Any ideas would be appreciated. 

Comments

  • IAmStrong
    IAmStrong Member Posts: 58
    #2
    Options
    Easy to Get Frightened...

    Hi.  I want to address a few of the symptoms you are talk of.  First is the facial pain.  I had developed this a few years out.  Most of my radiation was to the lt side and I horrible pain and spasms.  I went to my primary..I recognized nerve pain and did Not recognize trigeminal nerve pain.  I studied it, treated pts for this yet that is not common.  I am taking Baclofen 10 mg qd and it totally works.  Those nerves can easily travel to your ear.  Difficulty swallowing can develop at any time post rads.  It is smooth muscle and ligaments to make this work from the mouth on down.  It is smooth muscle.  Because radiation affects our blood vessels, they can lose their elasticity over time.  Thus increased probs.  My cheer leader is over 30 yrs out.  She was radiated like no tomorrow, not to save her life.  She was Way too advanced with preschoolers.  She was also a pt in my office I worked in til my dr retired...she had gotten to the point she could hardly open her mouth...over 30 yrs later.  Her advice:  Open your mouth Wide regularly and take a tongue blade or such to force your tongue base down and throat to open up and exercise those muscles.  You may be having esophageal spasming too, you won't necessarily feel it as such-also making it diff to eat and drink.  Did you have any lymph nodes removed?  Can be lymphodema of vocal chords, soft tissue etc.  Massage with moisturizer ( I use cocunut oil) your face and neck (helps break scar tissue down and increase circulation), face esp after getting pain under control ie see primary and ask about trigeminal nerve pain and treatment.  Best to you. 

     

  • Barbaraek
    Barbaraek Member Posts: 626
    #3
    Options
    There is something called

    radiation recall. I don't know if your symptoms could be related to that or not. My husband had it when he tried adjuvant chemo, but wasn't as far out removed from treatment as you are. I hope that you find some answers, and importantly, some relief soon.

    Barbara

  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Options
    Hi teacup

    I call it long term reedition side effects as with me and being I was treated twice I had a lot of radiation stored up in the tissue that did not start to come back out until 6 or 7 years later. It is not as bad now as it was at first but still have little recall burst of radiation now and them. A lot of ear, neck and jaw pain, I use Nucynta for it and so far it been helping me.

     

    Tim

  • yensid683
    yensid683 Member Posts: 349
    #5
    Options
    Radiation Fibrosis Syndrome

    Sounds suspiciously like scar tissue impinging on the nerves, symptoms consistent with what I've read about something called RFS (radiation fibrosis syndrome)

    Not wanting to scare you but it is common for people who've had radiation treatments for cancer, and from the papers I've read about it, it is most common for lymphoma patients, but is also seen for head and neck.  The difficulties you describe may (and I emphasize the MAY) indicate entrapment of various nerves that enervate the jaw, throat, swallowing mechanism etc.

    I had 33 rads, concentrating on the left side but also accessed the tumor from the right and I have all kinds of hard scar tissue under the left part of my mandible and constantly have to work on stretching, massaging and exercising these areas.

    Your doctor's may be able to shed more light on this, here's hoping there is no recurrence!

Discussion Boards