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#198577 06-22-2019 02:45 PM
Joined: May 2010
Posts: 18
Sandy23 Offline OP
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Joined: May 2010
Posts: 18
Does anyone have any knowledge on radiation fibrosis? Since radiation never leaves your body, it can continue, in some people, and cause progressive damage. I was treated for throat cancer in 2010. Lots of radiation treatments, as probably most of you have been through. I've always had some residual issues, especially in the lung area because radiation created scar tissue. However, in the past 6 months i've been having more and more problems with throat area. Airway narrowing, difficulty in swallowing (especially pills), constant coughing (sometimes to the point that I spasm), excessive mucus. I've been back many times to my ENT as things just get worse. He told me what it was, but said there is nothing that can be done for it. I'm going to get a 2nd opinion, but would love to hear from someone who knows anything about it. Thanks for reading.

Sandy23 #198578 06-22-2019 04:17 PM
Joined: Jul 2012
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Joined: Jul 2012
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Sandy23,

I have radiation fibrosis in several areas, but I’m no expert. I have looked into the subject, and found they say there is really no cure for it, just supportive care. A former rehab doctor at Memoria Sloan Kettering, Dr Stubblefield, is an expert in this area and is now in NJ, at Kessler Institute for Rehabilitation Care, so I missed seeing him in NYC.

Most recommend rehabilitation care. I assume SLP does exercises that may help as I’ve been through it several times.

For swallowing, I’ve had throat stretches by my stomach doctor (my mind is starting to fade) wheby they stretch your throat under sedation, usually when they do a yearly biopsy for barrets esphogus it has helped my swallowing.

There are a few books on the subject, one by Dr Stubblefied, and many arrticles on the subject such as this one:

https://www.ncbi.nlm.nih.gov/m/pubmed/27913002

https://www.mskcc.org/sites/default...sis-syndrome-michael-stubblefield-md.pdf

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Sandy23 #198579 06-23-2019 02:56 AM
Joined: Oct 2017
Posts: 36
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I have a stiff neck after treatment.
Doctors say its fibrosis and surgery scars
not sure what is the best way to fix fibrosis , some say Physio.
I have been through several physio therapists . it is just too hard


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
Joined: Mar 2018
Posts: 72
Likes: 1
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Joined: Mar 2018
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I went to a speech /swallowing therapist, who gave me some very good and easy exercises.
Some as easy as just looking as far left and right several times, each day.
Maybe it will be frustrating at first, but as you stretch out your neck, hopefully you will gain mobility and less pain.
Everything with this cancer recovers so slowly, but surely.
You will recover over time, stay positive.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.

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