Post treatment, radiation scarring in esophagus - no idea what to do.

kalieilak

Hi there, everyone.

 

I'm glad to have found this group - I have been muddling along with my dad's treatment for almost two years now and wish I had found this group sooner. I'm my dad's legal guardian as he has a brain injury that leaves him unable to understand and navigate complex situations. He has a caretaker who he lives with. So, lots of my information comes second-hand and getting doctors to share first-hand info with me is beyond difficult and aggravating.

 

He had an esophagectomy in December of 2015. The latest situation is that he is unable to swallow post-radiation to a new growth that showed up in his throat area. The new growth is "inactive", but he is still unable to swallow. The doctor says it is radiation scarring, but I'm unsure if this is permanent or something that could go down with time. We have had his throat stretched 3 times in the past month and a half and each time it closes up completely in between visits (the last one was only a 2-week wait between appointments). Has anyone else had issues with throat stretching post-radiation to the area? I'm just unsure of what to expect and if this is even worth continuing as it is pretty hard on my dad. The doctor said that my dad's stricture was one of the toughest he has ever worked with, so I'm not optimistic for results but don't want to give up on this if there is hope that this treatment will help my dad swallow again.

 

Thanks for any thoughts or experience. I'm struggling quite a bit with this at the moment and am unsure how to navigate this new barrier.

 

Best,

 

Kalie

Deathorglory

Hello Kalie

Hello Kalie,

My situation was different than your dad's but I'll share anyway, in case it's helpful.  I did my radiation (plus chemo) before my surgery, but I did have my esophagus essentially fried shut.  I was given an obscene amount of morphine ( 1/2 liter bottle) plus"magic mouthwash"(lidocaine based) to help me to be able to eat and drink anythingat all.  Post surgery, I had no real problems with swallowing and never had to get stretched.  I'd definitely suggest getting a second opinion about what is going on with your dad.  You didn't mention what cancer center you're working with, but, by definition, half of all doctors and hospitals are below average.  Your dad deserves to be treated by the better half.

All the best,

Ed

paul61

Sometimes it takes several dilations to work

Kalie,

I am so sorry to hear that your Dad is having difficulty swallowing. I have no personal experience with esophageal dilation but from reading posts on this forum over the years, many survivors have several dilations before the scar tissue is stretched enough to provide permanent relief. I agree with Ed, that it may be valuable to seek a second opinion on the best approach to solving your Dad’s issue.

The other recommendation I would make is to be wary of stent placement. Some surgeons recommend inserting a stent to permanently hold the esophagus open, but in reading posts here over the years, stents have a very bad reputation for causing pain and slipping out of place.

I have read here of people having six or seven dilations before they solved the problem.

 

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

kalieilak

Deathorglory said:

Hello Kalie

Hello Kalie,

My situation was different than your dad's but I'll share anyway, in case it's helpful.  I did my radiation (plus chemo) before my surgery, but I did have my esophagus essentially fried shut.  I was given an obscene amount of morphine ( 1/2 liter bottle) plus"magic mouthwash"(lidocaine based) to help me to be able to eat and drink anythingat all.  Post surgery, I had no real problems with swallowing and never had to get stretched.  I'd definitely suggest getting a second opinion about what is going on with your dad.  You didn't mention what cancer center you're working with, but, by definition, half of all doctors and hospitals are below average.  Your dad deserves to be treated by the better half.

All the best,

Ed

Thank you

Thanks for the reassurance, Ed. These are definitely ideas to look into! I appreciate the response. Being in Maine we really struggle to get above-average care, and of course navigating this apart from my dad's immediate viscinity further complicates! 

 

I hope you are doing well post-surgery,

 

Kalie

kalieilak

paul61 said:

Sometimes it takes several dilations to work

Kalie,

I am so sorry to hear that your Dad is having difficulty swallowing. I have no personal experience with esophageal dilation but from reading posts on this forum over the years, many survivors have several dilations before the scar tissue is stretched enough to provide permanent relief. I agree with Ed, that it may be valuable to seek a second opinion on the best approach to solving your Dad’s issue.

The other recommendation I would make is to be wary of stent placement. Some surgeons recommend inserting a stent to permanently hold the esophagus open, but in reading posts here over the years, stents have a very bad reputation for causing pain and slipping out of place.

I have read here of people having six or seven dilations before they solved the problem.

 

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

Thank you!

Thank you for the response, Paul. I am encouraged to hear this. His doctor didn't recommend a stent so that seems to be on the right path, at least. We are on dilation #4 today, with weekly dilations upcoming so hopefully we will start to see some progress soon.

 

Many thanks for the words of encouragement!

 

Kalie

Judy31

Kalie,

Kalie,

I have had numerous dilations since my surgery in December 2011.  My doctor, doing the dilations, found that he would often have to make some carefully placed cuts to the scar tissue which would make the first day or so after a dilation a little tender but on the occasions where he did the cuts, the "Stretch" seemed to last longer.  He like many other doctors discourage having a stint placed because of slippage and other problems.  This year I have only had one dilation, in 2016  I had 5, 2015 I had 7, 2014 I had 1 and in 2013  and 2012 I had them about every 2 months.  I hope the best for your dad.  It is certainly a situation where everyone has different experiences.

Judy

Boise, ID

jthomas233

Dialations

Kalie-

I agree with Paul in that the dialation process is sometmes progressive and has various degrees of success.  I didn't need any until the fourth year out and I had a series of four over a year where my doc said he stretched slowly and strategically.  I've also read several posts over the years where people say that they do in fact attain permanent relief after a period (sometimes lnegthy) of stretches.  I wouldn't overthnk it at this point.  Good luck!  BTW.. I hope to be able to rotate my picture shortly.  (with no esophagus, I should NOTbe leaning back that far...)

FamilyLove

I agree that it takes time

I agree that it takes time with the dialations and everyone is different.  I have not had any surgery but after radiation I got to the point where I could not swallow anything.  I had dialations every two weeks for several months which opened my esophagus enough to get liquids down.  Then went to three weeks.  Had a setback and did two weeks again.  Eventually got to a month and now every three to four months.  I am now able to eat soft foods and no longer dependant on a feeding tube.  Hope all goes well for your dad.