Dysphagia from Radiotherapy (Sudden Late Onset Fibrosis)

gboothy
gboothy Member Posts: 3
in Head and Neck Cancer #1

One of the causes of fibrosis in the body is radiation therapy (RT) or chemoradiation therapy (CRT), each used for cancer treatment.

For most patients, fibrosis is scar like tissue that may form during RT/CRT or soon after.

For other patients, who resolve well after RT/CRT, fibrosis may be suddenly experienced years after treatment.

When RT/CRT is given for Head & Neck Cancer (HNC), the fibrosis can cause crucial swallowing problems (Dysphagia).

RT/CRT is often targeted well beyond the tumor location to kill cancer cells that have spread along nerves (perinural spread) &/or to adjacent glands/tissue/ligaments/muscles/bone (local spread) and possibly to the lymph nodes in the neck (regional spread).

Dysphagia usually involves the dysfunction of the epiglottis down to the upper esophageal sphincter (UES).

So why would Dysphagia be a potential problem for people treated for HNC that is not in this area?

The answer is the width & intensity of the RT/CRT treatment fields and that comes down to cancer staging & grading ie cell type of the individual situation.

Stage (I to IV, with increasing subsections) is the standardized measure of how advanced any cancer is & Grade (I to III ie Low, Intermediate or High) is the standardized measure of how aggressive any cancer is.

In 2006 I was diagnosed with a Stage IVB2, Grade (mixed) tumor of the parotid gland ie a very advanced & a highly aggressive parotid gland cancer.

My RT was thus similarly aggressive in width & intensity; it took in areas down to the UES.

After recovering from the RT, I had no Dysphagia at all.

In 2012, more than 6 years out from RT, I ordered a roast dinner and started to gag when I tried to swallow. I was later diagnosed with severe Dysphagia due to permanent fibrosis from the late effects of RT.

I have had to return to pureed food, medical drinks, intensive speech pathology exercises, future repeated UES dilation procedures, experimental antioxidant therapy & possibly UES surgery, all to avoid Nasogastric (NG) tubefeeding or finally Percutaneous Endoscopic Gastrostomy (PEG) tube feeding for life.

I have been told that the patients that are most likely to develop fibrosis & Dysphagia are bilaterally irradiated patients of the Oropharynx (Base of the Tongue) & Larynx.

Oropharyngeal Cancer Treatment

www.cancer.gov/cancertopics/pdq/treatment/oropharyngeal/HealthProfessional/page4

Laryngeal Cancer Treatment

www.cancer.gov/cancertopics/pdq/treatment/laryngeal/HealthProfessional/page4

My guess is that the HNC people at risk are those with higher Stage (number?) scores only. The dysphagia could range from mild to severe.

There is no reversal treatment for fibrosis & also xerostomia markedly increases.

My six years of surviving well have now become surviving poorly for life.

Sudden Late Onset Radiation Induced Fibrosis can occur well beyond the normal post-RT surveillance time, when contact with one’s radiation oncologist has ceased.

I have been in communication with two other people with sudden Late Onset Radiation Induced Fibrosis (Dysphagia); suddenly affected 14 years & 24 years after RT/CRT!

People such as these often live a reclusive, low quality life.

They have been successfully treated for cancer & then forgotten about.

Their struggle is to survive survivorship!

The problem is that longitudinal statistics of late onset fibrosis, beyond a patient’s surveillance period, are not collected by radiation oncologists & the condition often goes under-reported.

Mortality takes precedence over morbidity in cancer treatment.

Most HNC patients know of only one significant post-RT/CRT morbidity ie Osteoradionecrosis (ORN); unfortunately Late Onset Radiation Induced Dysphagia is another significant one.

The only statistics that I have ever seen are from the small sample in:

Abstracts for the Tri-Society Head and Neck Oncology Meeting, Singapore, 1-3 September 2011.

Surviving survivorship: the challenge of late onset dysphagia

See page 9 of the abstract:

www.anzjsurg.com/SpringboardWebApp/userfiles/anzjs/file/2011%20Tri-Society%20Head%20and%20Neck%20Oncology%20Meeting%281%29.pdf

These statistics were collected in a survey done by a small public referral hospital in Sydney Australia, of patients from surrounding larger public treatment hospitals, 2-8 years following RT/CRT for HNC.

Private hospitals in Australia treat the more common cancers only.

The most interesting paper that I have found is:

Dysphagia After Radiotherapy for Head and Neck Cancer June 2010

Susan E. Langmore and Gintas P. Krisciunas

“Alternatively, those who experience a sudden (later) onset may have had an experience (trauma or surgery, addition of co-morbidity, exhaustion of compensatory mechanisms) that resulted in the addition of extra TGF-β (transforming growth factor beta), or a suppression of that threshold, thereby triggering the aberrant wound healing process.”

See the abstract:

div13perspectives.asha.org/content/19/2/32.short

The lesson is:

Report a sudden & increasing swallowing problem for immediate diagnosis & action; albeit that treatment is limited at this stage.

It may never happen to you or may happen to you only mildly.

Fibrosis is the silent, second significant morbidity related to RT/CRT, particularly of the head & neck.

Regards

gboothy

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    I'm not sure I get the point

    What you say is mostly true.  Radiation of the neck causes fibrosis.  The more radiation, and the larger the irradiated area, the greater the effect.  So those of us who have the most heroic intervetions are at the highest risk for subsequent problems.   Where I personally differ from you is in your assertion that fibrosis leading to permanent deglutination problems confers low quality life.  There are a number of us here with these problems.  Some are forced to use  a PEG tube on a permanent basis. Others, like me, are essentially unable to eat solid food.  My diet is mostly heavy liquids with a little pureed food now, after being through more than one course or radiation.  I must say, my quality of life is quite high despite this.  It is my opinion that how one perceives this problem determines whether this is a significant trouble or not. 

     

    best to you

     

    Pat

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    #3
    longtermsurvivor said:

    I'm not sure I get the point

    What you say is mostly true.  Radiation of the neck causes fibrosis.  The more radiation, and the larger the irradiated area, the greater the effect.  So those of us who have the most heroic intervetions are at the highest risk for subsequent problems.   Where I personally differ from you is in your assertion that fibrosis leading to permanent deglutination problems confers low quality life.  There are a number of us here with these problems.  Some are forced to use  a PEG tube on a permanent basis. Others, like me, are essentially unable to eat solid food.  My diet is mostly heavy liquids with a little pureed food now, after being through more than one course or radiation.  I must say, my quality of life is quite high despite this.  It is my opinion that how one perceives this problem determines whether this is a significant trouble or not. 

     

    best to you

     

    Pat

    Attitude......

    is everything!!!  My radiation was minimal, so I may not be facing the potentials of this problem, but Pat, your attitude is a role model for those of us that DO face recurrences, multiple radiations/chemos!!  I guess the alternative to NOT having the radiation and it's possible side effects, isn't too exciting either!!  Without the radiation, I'd think a higher staged ca patient wouldn't be alive to complain about later onset side effects.....just saying!

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    Mrs. Sarge said:

    Attitude......

    is everything!!!  My radiation was minimal, so I may not be facing the potentials of this problem, but Pat, your attitude is a role model for those of us that DO face recurrences, multiple radiations/chemos!!  I guess the alternative to NOT having the radiation and it's possible side effects, isn't too exciting either!!  Without the radiation, I'd think a higher staged ca patient wouldn't be alive to complain about later onset side effects.....just saying!

    Pat

    Well said Pat...life is what you make it with or without cancer

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #5
    I am one of those people who

    I am one of those people who have suffered from late term fibrois dysphagia.  I was Stage III NPC in 2000.  I was not prepared to have another PEG Tube put in, especially knowing it may never come out! But they told me in December 2012 i would never eat or drink by mouth again, and the survivor in me said Hell No, went to therapy and 5 months later i drink water,coffee and my ensure and experimenting with pureed food.  At 42 it may not be what i wanted, no more soft pretzels or pizza.  But my life is not ruled by food its the unconditional love to and from my child, its falling in love again flawed and all with the right man, it appreciating everyday of my life as a Gift from God.

    Maybe the quality of my life differs from someone not afflicked by these issues, but in no way would i trade a minute of the Blessing of awareness cancer gave me!  My quality of life is A ok!

     

    thats my opinion,

    Rach 

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    longtermsurvivor said:

    I'm not sure I get the point

    What you say is mostly true.  Radiation of the neck causes fibrosis.  The more radiation, and the larger the irradiated area, the greater the effect.  So those of us who have the most heroic intervetions are at the highest risk for subsequent problems.   Where I personally differ from you is in your assertion that fibrosis leading to permanent deglutination problems confers low quality life.  There are a number of us here with these problems.  Some are forced to use  a PEG tube on a permanent basis. Others, like me, are essentially unable to eat solid food.  My diet is mostly heavy liquids with a little pureed food now, after being through more than one course or radiation.  I must say, my quality of life is quite high despite this.  It is my opinion that how one perceives this problem determines whether this is a significant trouble or not. 

     

    best to you

     

    Pat

    Inspiration

    Pat, you've always been my hero and my inspiration.

    Deb

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #7
    longtermsurvivor said:

    I'm not sure I get the point

    What you say is mostly true.  Radiation of the neck causes fibrosis.  The more radiation, and the larger the irradiated area, the greater the effect.  So those of us who have the most heroic intervetions are at the highest risk for subsequent problems.   Where I personally differ from you is in your assertion that fibrosis leading to permanent deglutination problems confers low quality life.  There are a number of us here with these problems.  Some are forced to use  a PEG tube on a permanent basis. Others, like me, are essentially unable to eat solid food.  My diet is mostly heavy liquids with a little pureed food now, after being through more than one course or radiation.  I must say, my quality of life is quite high despite this.  It is my opinion that how one perceives this problem determines whether this is a significant trouble or not. 

     

    best to you

     

    Pat

    Pat,
    your the

    Pat,

    your the GREATEST!

    rachel

  • Reggie13
    Reggie13 Member Posts: 9
    #8
    rachel12yrsuv said:

    I am one of those people who

    I am one of those people who have suffered from late term fibrois dysphagia.  I was Stage III NPC in 2000.  I was not prepared to have another PEG Tube put in, especially knowing it may never come out! But they told me in December 2012 i would never eat or drink by mouth again, and the survivor in me said Hell No, went to therapy and 5 months later i drink water,coffee and my ensure and experimenting with pureed food.  At 42 it may not be what i wanted, no more soft pretzels or pizza.  But my life is not ruled by food its the unconditional love to and from my child, its falling in love again flawed and all with the right man, it appreciating everyday of my life as a Gift from God.

    Maybe the quality of my life differs from someone not afflicked by these issues, but in no way would i trade a minute of the Blessing of awareness cancer gave me!  My quality of life is A ok!

     

    thats my opinion,

    Rach 

    Inspiration

    Very Inspiring message Rach.  I had a stage IV base of tongue cancer in 2004.  I did fairly well until almost two years ago I had to go back on the feeding tube due to aspirating.  I now cannot swallow anything and my speech is very bad.  But I'm still alive and there is no signs of the cancer returning.  As long as there is breath in your body there is HOPE.  I was just wondering if you ever expernce the constant greenish mucus in the throat.  I have it BAD and don't know what is causing it.

  • lornal
    lornal Member Posts: 428
    #9
    Reggie13 said:

    Inspiration

    Very Inspiring message Rach.  I had a stage IV base of tongue cancer in 2004.  I did fairly well until almost two years ago I had to go back on the feeding tube due to aspirating.  I now cannot swallow anything and my speech is very bad.  But I'm still alive and there is no signs of the cancer returning.  As long as there is breath in your body there is HOPE.  I was just wondering if you ever expernce the constant greenish mucus in the throat.  I have it BAD and don't know what is causing it.

    Old Post

    Reggie, this is an old post - you might want to start a new one.

     

    I had tonsil cancer in 2007 and had surgery, chemo, and radiation.  Healed up fine - took about a year to get back to normal.  And then, in late 2012, the trouble started.  I started having trouble swallowing.  Had a scope and barium swallow - no issues found.  Had to change meds a couple of times because the pills were too big. Had another scope in April 2013, and another barium swallow.  Again, no issues found, but went to a GI.  Started having my throat dialited - 13 times.  It only worked for a short time each time.  Lost my voice, had to go on a feeding tube.  All the docs said it was the scar tissue.  But, in December, 2013, on the last dilation - the doctor noticed a lesion, took a biopsy, cancer again.  Finally had a PET (no doctor thought it was necessary before that). It lit up the screen.  Had a total laryngectomy in Jan of 2014 - no chemo or radiation. Alive and doing well.  Happy and living!  If you haven't had a PET since this started - try to get one.  Lots of doctors looked around, and didn't see anything unusual.

    Lorna 2007 & 2014

     

    PS.  Mucus is a way of life with us larys.  Not sure about the green though.

     

     

     

  • MGC
    MGC Member Posts: 72 Member
    #10
    lornal said:

    Old Post

    Reggie, this is an old post - you might want to start a new one.

     

    I had tonsil cancer in 2007 and had surgery, chemo, and radiation.  Healed up fine - took about a year to get back to normal.  And then, in late 2012, the trouble started.  I started having trouble swallowing.  Had a scope and barium swallow - no issues found.  Had to change meds a couple of times because the pills were too big. Had another scope in April 2013, and another barium swallow.  Again, no issues found, but went to a GI.  Started having my throat dialited - 13 times.  It only worked for a short time each time.  Lost my voice, had to go on a feeding tube.  All the docs said it was the scar tissue.  But, in December, 2013, on the last dilation - the doctor noticed a lesion, took a biopsy, cancer again.  Finally had a PET (no doctor thought it was necessary before that). It lit up the screen.  Had a total laryngectomy in Jan of 2014 - no chemo or radiation. Alive and doing well.  Happy and living!  If you haven't had a PET since this started - try to get one.  Lots of doctors looked around, and didn't see anything unusual.

    Lorna 2007 & 2014

     

    PS.  Mucus is a way of life with us larys.  Not sure about the green though.

     

     

     

    Great information

    This is one of the most informative posts I have seen. Thank You Very Much

     

    Dysphagia from Radiotherapy (Sudden Late Onset Fibrosis)

     

     

    Mark

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