| Joined: May 2010 Posts: 18 Member | OP Member 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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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/27913002https://www.mskcc.org/sites/default...sis-syndrome-michael-stubblefield-md.pdfGood 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
| | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 | 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 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2018 Posts: 72 Likes: 1 | 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.
| | |
Forums23 Topics18,248 Posts197,137 Members13,320 | Most Online1,788 Jan 23rd, 2025 | | | |