In 2012, I developed Radiation Induced Fibrosis (RIF) or Radiation Fibrosis Syndrome (RFS), more specifically sudden Late Onset Radiation Induced Fibrosis; Velopharyngeal Incompetence & Severe Dysphagia (fibrosis from the Soft Palate down to the Upper Esophageal Sphincter, inclusive). My Current Treatment: SLP exercises, "Smooth Pureed" diet plus Resource Plus medical drinks and Pentoxifylline & Tocopherol (Vitamin E) antioxidant therapy. My Current Operations: Rod Dilation by ENT Surgeon of the UES - day procedure, Balloon Dilation by ENT Surgeon of the UES - day procedure (soon) and Cricopharyngeal Myotomy (later). Viewers can read an abstract (on page 9): Surviving survivorship: the challenge of late onset dysphagia. http://www.anzjsurg.com/SpringboardWebApp/userfiles/anzjs/file/2011%20Tri-Society%20Head%20and%20Neck%20Oncology%20Meeting%281%29.pdf
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Hi Gboothy Dysphagia can be a real problem (as you already know) for a lot of head and neck patients. I am going to copy something that was posted in a group that I belong to on facebook. It is a head and neck survivor group and the man that posted this is pretty knowledgeable. Over the past 20 years, Head and Neck cancer (HNC) mortality rates in New South Wales, Australia have improved by 23% (from 9.5 to 7.2% deaths per 100,000 per annum). This has, however, occurred against an increase in morbidity. One such serious morbidity of treatment is dysphagia (swallowing dysfunction). Although well documented during the acute phase of HNC treatment, dysphagia has unfortunately been under- reported and managed as a late treatment effect. We know that changes to swallowing function are common in HNC patients and that it may have a negative effect on people ‘surviving well.’ In our recent review of patients from 2-8 years following multi- modal treatment for HNC, 64% of patients (n=80) reported dysphagia. Further, in a recent cohort study of laryngectomy patients in Australia, 72% of survivors (n=120) reported having a marked swallowing dysfunction (Maclean, Cotton & Perry, 2009) so this is clearly a common problem, regardless of which mode of HNC treatment is chosen. The long-term management of dysphagia in HNC patients is challenging for clinicians as it often presents after cancer surveillance has been completed. Additionally, treatment options for dysphagia due to fibrosis are limited. It is just another thing with head and neck cancers that needs more attention and more information passed on.
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Hi Jules2, Thanks for that. You're on the ball! The full abstract of "Surviving survivorship: the challenge of late onset dysphagia", is in my link & here on page 9. http://www.anzjsurg.com/SpringboardWebApp/userfiles/anzjs/file/2011%20Tri-Society%20Head%20and%20Neck%20Oncology%20Meeting%281%29.pdf See also in relation to the above, "Effect pretty hard to swallow": http://www.theleader.com.au/story/1239178/effect-pretty-hard-to-swallow/ I have communicated with two Late Onset Radiation Induced Fibrosis sufferers; 14 & 24 years after radiotherapy! My ENT Surgeon tells me that the irradiated patients most likely to develop Late Onset Radiation Induced Fibrosis are: (a) Bilaterally irradiated patients (?) (b) Bilaterally irradiated Oropharyngeal (base of the tongue) Cancer patients. Lesson: Report sudden dysphagia to your ENT Surgeon, and if confirmed, an appointment with a Speech Pathologist may be made to start immediate exercises. For All Members: See: "Dysphagia After Radiotherapy for Head and Neck Cancer: Etiology, Clinical Presentation, and Efficacy of Current Treatments": http://div13perspectives.asha.org/content/19/2/32.abstract A Specialist with privileged access may get you the full paper. Regards gboothy
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Hiya gboothy Thanks for that and have read the speech therapist excerpt. I am sure if I asked I could get the whole paper from the hospital that I attend. I had radiation for BOT but no surgery, so am guessing if I develop problems I would need to go back to the ENT or speech pathologist as opposed to the surgeon. THere is a local guy that I have been told has had problems with dysphagia some years after treatment, however, I have not personally spoken to him and the old chinese whispers could be rampant. 🙂 Thanks for bringing up the issue as it is certainly a life impacting one, as are most side effects from head and neck cancer treatment. GOod old radiation the gift that keeps on giving! THanks again Julie
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Hi Julie, Re: Surviving survivorship: the challenge of late onset dysphagia. In the abstract, the last sentence starts "In this paper": The "paper" is a "a free paper presented at a meeting" & one of its co-authors that I contacted has said "it has some patient images – they have consented for me to use them for presentations but I am a little loathed to forward the presentation itself on because of this. The abstract contains the stats regarding this anyway". If you give me your email address, I can send you the complete paper: Dysphagia After Radiotherapy for Head and Neck Cancer: Etiology, Clinical Presentation, and Efficacy of Current Treatments June 2010 Regards gboothy
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Hiya gboothy will inbox you with an email addy. Thanks!!
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