Radiation Damage/blocked Esophagus

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RE: Radiation Damage/blocked Esophagus

by trishcroker on Thu Dec 21, 2017 04:37 PM

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Who was the specialist who performed the dialations if you don't mond sharing the name and location please?

RE: Radiation Damage/blocked Esophagus

by Sdurnell on Tue Dec 26, 2017 07:22 AM

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I had mine in Spokane.  Doctor Carl Houglum has performed nearly 20 for me.  I'm 7 years out, and have had 20 or so, usually about 3 times a year.  But the last one was in February of this year, so I'm hoping that this is a sign of a new normal!\

Susan

RE: Radiation Damage/blocked Esophagus

by Dottiwf on Mon Jul 30, 2018 05:32 AM

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Many of the post I’ve read date back over many years so not sure who is still current here... like many I’m writing about my husband who was dx w/SCC base throat Feb 2017, 6-wks post enjoying all 2016 holidays and food and drinks. A few days after Christmas 2016, his mouth was swollen like a tooth abcess, dentist cleared him saying this was not dental related and sent us off to PCP. It took 6wks of PCP and their many blood test before receiving an ENT referral, in the interim he lost 30-lbs in 6 wks going from solid to soft to liquid to no food intake. The ENT immediately scoped and stated there was a lg mass growth blocking his throat, biopsy confirmed SCC-oralpharygeal cancer. ENT sent us to ER in order to get admitted under GI and get long overdue PEG feeding tube as we needed nourishment before chemoradiation therapy would begin. As a warrior facing lymphoma for 5yrs, I placed my husband under my same community oncology team for his HN cancer treatment, which we were told was standard 7-wk daily radiation with weekly chemo. Treatment started mid-March, and like many, tumor mass gone within 3-wks of therapy, yet they continued their 7-wk regiment. Never once discussed swallow test prior to or during treatments; it was home health speech therapist who pushed us to get ENT to order swallow test. This was finally done in August, 3-mo post treatment to be told he can’t swallow regardless of therpary due to scar tissue. We live in TampaBay FL, not far from Moffitt Cancer Center though sadly our community oncology never referred us there for higher level of HN specialty care. Since I was headed to Dana-Farber/Boston ilate August 2017 for my own consult I decided to secure a HN/speech team consult for my husband too, only to be told by their HN specialty cancer team that their centers would have done more swallow testing as base line and during treatment to best judge potential damage vs continuing planned treatment regiment .... sadly it sure seems like docs just want to plow thru “recommended fact-based regiments” without any patient monitoring! Their advise was to get into specialty care at Moffitt and/or use them as online consultants. Immediately we got into Moffitt’s local HN/Speech swallow team clinic and they brought in GI oncology as they pushed thru more swallow tests to finally advise in Dec 2017 my husband had collapsed occlusion of esophagus, damage from radiation, a complete collapse with blockage preventing any swallow function. They recommended us to a Dr David Estores at Shands Cancer Center/Gainesville FL who is a specialist in ELR/Esophageal Lumen Restoration post damage from cancer radiation treatments. This a is slow multiple dilation surgical procedure to penetrate blockage to ideally create initial passage and then every few weeks they repeat dilation attempts. We just finished procedure #9 and the doctor did successfully inject steroids into both scar and fresh tissue cells. So far the only attempt to swallow is with a tsp water several times daily to ideally force muscle activity and help rebuild the extensive damage to all throat muscles (we have 25-sets of muscles just within the throat base, esophagus, trach and vocal cords alone!). Our personal recommendation is to secure your medical consults only with HN speciality oncologist to make sure you receive the most current medical opinions and treatment options. Docs do not tell us the entire picture, we need to ask lots of questions, don’t ever let your medical team intimidate you when you want to ask/discuss disease, options and consequences. To the GA family being told vocal cord removal is only option, pls reach out to Dr Estores/Shands Cancer Center in FL, as possibly he is an alternative solution, or at least an option before losing ones ability to speak. I agree with fellow warriors and caregivers who are sadden by this swallow limitation post treatment, very few family or friends truly understand how this impacts one’s life and desire to thrive; and know that depression is very real, it is a form of PTSD and another condition to address and treat. We do our best daily to continue to remain positive, we believe that we are on a healing track finally, and getting my husband to swallow some liquids will be worth celebrating one day. Stay strong all, being cancer free is the goal but remember too your goal is acceptance and then learning to thrive again in life.

RE: Radiation Damage/blocked Esophagus

by Sdurnell on Wed Aug 01, 2018 03:47 AM

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Dotti,

I had my treatment at a cancer center in a small city two hours from my home.  This was 7.5 years ago, and I've been on these sites ever since.  It seems to me that it's rare for people to get speech services, including swallow studies, before or during treatment, no matter where it's done. So don't beat yourself up too much for not going elsewhere.

I eventually completelylost my ability to eat/drink/medicate by mouth a few months after I ended treatment, although I didn't do much during either for reasons we all know.  I was referred to speech and had a swallow study which found me aspirating, not swallowing, everything.  But they didn't know why.  The speech therapy was unhelpful.

Eventually my RO persuaded my ENT to try dilation, during which he discovered that my throat was completely closed by a stricture.  He could not dilate it, but after some research found a GI who began the process of opening my throat.  After a series of dilations he allowed me to eat my first, tiny, meal on Christmas Day (last radiation was Valentine's Day).  Within three weeks I was eating totally by mouth.

I had come to accept that I would never swallow anything ever again, so I was delighted to find that was not going to be the case for me.  I know that it might happen later as a late radiation effect, but for now I am enjoying eating, and I hope that happens at your house too, and soon.

Susan

RE: Radiation Damage/blocked Esophagus

by claudias on Tue Sep 11, 2018 11:33 AM

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HI,

I am not sure that you will still on this forum.  That is very interesting that you used acupuncture and herbs.  Could you share a little more detail.  And how are you now? THank you 

RE: Radiation Damage/blocked Esophagus

by Janey6 on Fri Sep 14, 2018 01:06 AM

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Hi Kathy, We are in same boat. Radiation has caused fibrosis in several areas of the throat. There isn’t a stricture that can be dilated...an easy fix. The entire throat is fried. And we’re pissed!!!! The latest treatment now is to deintensify radiation for select patients because this problem of being tube dependent sucks. Yes, it’s a very cruel outcome . cancer free but can never eating anything again. We’ve been to several ENT micro surgeons that try to restore some swallowing. But not my hubby. Ugh.....

RE: Radiation Damage/blocked Esophagus

by Janey6 on Fri Sep 14, 2018 01:24 AM

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Dotting, You are so spot on in your assessment of plowing ahead with past treatment protocol rather than adapting a rigeme for individual. We were at premier cancer center. MSK NYC. my hubby was treated June 2012 SCC STG IV BOT. He got 70 Gy (33 IMRT). They hounded him to get a PEG. He refused, lost a lot of wt but finished treatment gained wt back. Fast forward 6yrs.....aspiration pneumonia x3 . Swallow eval shows big problems...no strictures but no surgical procedure is available to help. We’ve been all over. Laryngeal folds not closing. Motility of esophagus not working, epiglottis won’t close.etc . It was 2012 when he was treated. At that time there was plenty of evidence in the literature stating that PEG tube dependence was a major morbidity...a life altering inability to swallow. Yet major Ca centers are still using this method......one place, Mt Sinai in NYC is deintensifing IMRT....THEY realize the damage it’s caused. Too late for many people.

RE: Radiation Damage/blocked Esophagus

by calaska on Fri Sep 14, 2018 01:27 PM

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On Sep 14, 2018 1:24 AM Janey6 wrote:

Dotting, You are so spot on in your assessment of plowing ahead with past treatment protocol rather than adapting a rigeme for individual. We were at premier cancer center. MSK NYC. my hubby was treated June 2012 SCC STG IV BOT. He got 70 Gy (33 IMRT). They hounded him to get a PEG. He refused, lost a lot of wt but finished treatment gained wt back. Fast forward 6yrs.....aspiration pneumonia x3 . Swallow eval shows big problems...no strictures but no surgical procedure is available to help. We’ve been all over. Laryngeal folds not closing. Motility of esophagus not working, epiglottis won’t close.etc "" target="_blank" rel="nofollow">http://close.etc " target="_blank" rel="nofollow">close.etc . It was 2012 when he was treated. At that time there was plenty of evidence in the literature stating that PEG tube dependence was a major morbidity...a life altering inability to swallow. Yet major Ca centers are still using this method......one place, Mt Sinai in NYC is deintensifing IMRT....THEY realize the damage it’s caused. Too late for many people.

The similar happened with my husband. He died later 02/2011

RE: Radiation Damage/blocked Esophagus

by Dottiwf on Mon Sep 17, 2018 02:44 PM

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Good morning community - just an FYI that I've reached out to a source to see thier interest in using these blog platforms to create a data-based survey re the life-altering side-effects from the HNC oncology's agressive 7wk protocal that clearly leaves more colleteral damage than most oncology teams discuss or possibly are even aware of such outcomes post their treatments. Our family experience is neither radiation nor medical oncology gets involved post treatment complications, as swallow challenges are not in their wheelhouse. They assume one's ENT or PCP is monitoring. My experience there shows neither ENT nor PCP have suggestions or solutions other than "you are cancer free". From personally being a 6-yr cancer warrior, patient advocate and now caregiver to my husband since 2017 for his HNC challenge, I'll state that follow-up involvement re one's healing and survival ability post blood, throat and metastatic breast cancers is minimal other than watching for a medical recurrence. We can do better for patients today and tomorrow, we have a wealth of knowledge from our individual experiences, if that data is collected and monitored on an anacceptable platform perhaps we can interst the medical researchers to help make tomorrow's choices a bit easier for patients. We never know why "we were picked" for these crueling disease journeys, but we do have a voice and if nothing else, I know my mission is to help pay it forward so each new patient can own their journey and learn to thrive in their "new life" post disease ideally with less life-long complications. Stay strong all - and I will keep this community posted on any new fact-gathering developments.

Hugs and smiles from TampaBay FL.

RE: Radiation Damage/blocked Esophagus

by Dottiwf on Mon Sep 17, 2018 03:03 PM

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Also look up ELR/Endoscopic Lumen Restoration - Dr David Estores at Shands Cancer Center/Gainesville FL. His speciality for >10yrs now is working with HNC patients that suffer bloackage due to radiation. There are limited options out there, he is very niche within this field, varies articles are published including NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4751005/. I found him from online research last year when I cam across this article from yrs ago in our local paper:  StPetersburgTimesendoscopiclumenrestoration.ashx.

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