SEcond time around tonsil cancer and nasopharyngeal cancer

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bunty21
bunty21 Member Posts: 3
edited December 2017 in Head and Neck Cancer #1

 

In 2010 I had a late stage SCC of the tonsil with mets in the neck.  I  was successfully treated with chemo radiation (65 grays over 6 weeks)  and after had neck dissection of Right hand side.  I had a second cancer diagnosed this year with SCC in the parapharyngeal space,  the GPs really let me down and did nothing quickly and by July there was some submucosal spread behind the nose.   Surgery was not possible as it was right next to Carotid artery and extending up into base of skull.   specialist was not sure if this was a new primary or a recurrence as both tumours were HPV+  and nasopharyngeal SCC is rare in this country.  I am not a smoker.

 

my only hope was to do more radiation and this was done in August and september (a further 65 grays) ./   there were some areas of mouth where RT has been "double" life time ie cross over areas that received RT both 2010 and this year.   as a result the effects of RT have been very severe.  RT ended mid September and within 6 weeks most oral mucositis was healed.  however, I have been left with recurring blisters, tiny blisters which last a few hours , filled with saliva retained, they are often painful and erupt to leave shallow ulcerated mucosa.  nob ody has yet managed to make an accurate diagnosis of what exactly is happening but suspect it is salivary damage.   I wonder  how can this be treated ?      i am doing the obvious things as part of regular routine such as saline rinsing, nasal irrigation with Neil Med sachets, Caphosol rinsing, and use of gels and sprays which are available for treatment of xerostomia.   I also have a burn which became an ulcer from the RT,  it will NOT heal and has left an open wound between back gum and edge of tongue.   Would Hyperbaric Oxygen therapy help ?  I have my post treatment PET scan next Friday and am getting very anxious about it now.  I got used to this first time around, but this second time is even harder to deal with.   look forward to hearing from others in the forum.  I am UK based

Suzanne (Bunty)

 

 

Comments

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
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    You're the first...

    Person I've seen on here who described what I experienced with the little blisters that only last a little while.  I only received 54 gray however...and only one course.  But I went through a period of from about week 4 of 6 to about 2 weeks post treatment where these little blisters would literally pop up over the course of an hour...  They'd go from nothing to 3-4mm really fast.  They hurt like crazy.  But I could usually pop them with my tongue or reach a finger in there and pop it.  It would instantly feel better and would be done.

    Super weird.  I didn't do anything other than pop the ones I could reach.  Went away on it's own.  Good luck, hope it just stops for you like it did for me!

    Brandon

  • Mavish
    Mavish Member Posts: 84 Member
    #3
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    I had blisters and slow healing ulcers too

    I had right tonsil SSC. I had blisters. My dr said that they are happening because radiation damagged the tubes of the mucosal glands. And as part of the healing process glands statted workıing but there is no chanal to drain what they produce. So blisters are occured. In time being body makes new tubes to drain them. I am not having them any more.

    I had also have open wounds in my mouth, although I had only one set of RT (exelarated 35 rt sessions in 30 days) My dr sad it is late tadiation complication and happens to people whose tıssues are more tensitive to radiation than others. It took more than a uear to heal. They left me with scar tissues in my mouth.

    For the open wounds,my doctor monitored me every week to make sure they are healing (things going right direction).If it wasnt they were going to do a biopsy.

    It took long time to heal, but healled. I was told there is noting to do to trat them, just give your body time to heal itself. 

    They were very painful, I felt like they would never heal at that time, but they healed.

    Good luck!

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