#88106 01-15-2009 10:00 AM | Joined: Jan 2009 Posts: 1 Member | OP  Member
Joined: Jan 2009 Posts: 1 | I'm a first poster; long term survivor with significant radation damage. Both carotid arterities have had surgical repair. Diagnostic imag that I saw in conjunction with surgury and M D's notes reflect severe damage.
Recently encountered damage to ear canals; flesh has sloughed off exposing mastoid bone. Anyone have similar experience? | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I just had a stent put in my right carotid artery. I had no symptoms. My GP picked it up on routine check. It was attributed to radiation damage and neck dissection.
Take care,
Eileen
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Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. Im not familiar with the radiation damage you are posting about. Even though we all share the oral cancer diagnosis, its different locations and treatments are all individualized. Most have done chemo/rad/surgery.
Please update your signature to explain what kinds of treatments, what your stage was, etc. Read other people's so you can get a feel for what info people put there. Its very helpful when you ask questions so the person trying to help knows something about you to help. There is also tons of info on the main OCF site and a search there and on the forum.
The biggest radiation after effect problem I have is trismus. Sorry I wasnt more help.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Brody, Welcome, Your experience is not unheard of. We refer to radiation as the gift that keeps on giving. I met a fellow survivor who lives within 100 miles that told of similar blood vessel damage, vision problems and hearing problems. One better, he was also experiencing a problem with his heart that he said was related to scatter radiation.
I also have an dear aunt that had a similar ear tissue problem and she has not had radiation.
Please mention the year you were treated and what you know about the type of radiation you received.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Welcome Brody,
I hope your docs figure out how to solve your problems soon. Sorry that I can't help, but I wanted to say hi.
Mark,
Congrats on your 1300th post. Now that you're back, I'm sure you'll be surpassing me soon.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Interesting. I had no idea of the this specific side effect of radiation until my RO brought up the topic in Sept 08, telling me what was planned for during my next check up. He told me he was going to do a carotid ultasound in December 08. He does one after 1 yr and after 3 yrs as a std test. He told me that a certain % of time radiation will cause problems with blockage issues( I can't remember the %). I am not sure if all patients at Duke do this test or just his patients but he was very insistant I do the test and it is part of the scheduled check up procedure. He said now it is part of the "Gold Standard". Thankfully all was normal
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | My blockage occurred 11 YEARS after the radiation and ND damage so I wouldn't consider yourself all clear if you have no blockage after 3 years. Have your GP listen to your carotid on your routine checkups and if he hears something, then you can get a carotid ultrasound.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Welcome Brody, I'm new here, too. I haven't heard anything about that happening but like Mark says, this radiation is the gift that keeps on giving. I think chemo is too.
This carotid artery business is certainly news to me, tho. Gasp! Just one more thing to get checked for, darnit. I just recently went through the Hypothyroidism stuff. Wonder what will be next?? Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Funny you mention that. I was looking at my neck closely in a mirrir today and there is a noticeable difference between the size of my left and right carotid artery. I can barely even see the right carotid, which was in the immediate beamfield.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | 01 i had treatment and been normally fine.
in 06 i had a severe head injury.
i recently had neurology testing of my arms and electrical tests aren't right, so blood tests were done. they are normal.
the doc says, it isn't ALS. he doesn't know what the problem is and suggests no treatment. he discounts my head injury and supposes that radiation during cancer treatment messed up nerves in my neck.
i read some online articles (including those on this website) that say this can happen, but is rare.
maybe someday i'll know what's going on.. maybe i won't. thank goodness its not ALS.
i would be interesting to hear\read more about radiation damage to neck nerves.
i've been having my carotid checked routinely.
cu,
larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
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