Dilation's Again and Again and Again and Again...

Hoping for clean pathology for you. Another brave soldier. The dilations really stink and I wish there was another way, and a cure. I will keep you in my thoughts> In the meantime enjoy the sunshine!

I sincerly hope your biopsies come back with no cancer found. 

I don't want to scare anyone with my next comments. They are said with the hope that they will help someone and give information that is seldoms seen, and we did not know about until it was too late to do anything. If this helps someone to recognize the need to further question what is going on I will be glad.

That being said I feel the need to be an advocate to let people know about excessive stretching needed following surgery.  My husband had surgery Aug 2010, and late 2011 was having trouble swallowing. He was being stretched every few weeks until it no longer helped.  End of December something doesn't look quite right during a stretch.  Tissue is seen where a staple from the original surgery had come out and the area under looked suspicious.  I question why they don't do an ultrasound along with the stretches.  It would be a relatively simple thing to do considering they are already doing the regular scope and stretch.  Did you know most recurrences occur on the outside of the esophagus and most original growths are on the inside of the esophagus?  Scope and visual will NOT show a recurrence of cancer, after surgery, that is located on the outside growing in.  Why are the dr's not doing a better job with this situation and just keep stretching without knowing why? In essence it was the recurrent tumor being stretched.  This really upsets me.  PLEASE, PLEASE if you are requiring regular stretches request the dr to do further testing to be sure there isn't anything lurking that they can't see on visual inspection. 

My husband had chemo and radiation a year ago for stage 4a oropharyngel (esophageal cancer that is high up at the base of the tongue, not the stomach end). He developed a severe stricture almost immediately after radiation was complete. Basically he has been unable to swallow much of anything since except maybe a few thin liquids if he was careful. He went to 3 different doctors here in the atlanta area who tried to do the esophageal dilation (stretching) thing but they were all unable to do so, even tried using a baby sized peiced of equipment (sorry i dont know what it was called). It is becoming harder now for him to swallow even thin liquids. We are looking for a doctor who is very very good at widening these strictures...someone mentioned the possibility of a Doctor in north carolina who is highly recommended but couldnt give us the name or even the town. Im hoping someone here can help us out?   Actually if you know of ANY doctor anywhere who is very good at either stretching (dilating ) the stricture or placing a stent or surgery or anything that would help, please let us know. Husband is really depressed (understandably) about this.

DesperateInAtlanta said:

My husband had chemo and

My husband had chemo and radiation a year ago for stage 4a oropharyngel (esophageal cancer that is high up at the base of the tongue, not the stomach end). He developed a severe stricture almost immediately after radiation was complete. Basically he has been unable to swallow much of anything since except maybe a few thin liquids if he was careful. He went to 3 different doctors here in the atlanta area who tried to do the esophageal dilation (stretching) thing but they were all unable to do so, even tried using a baby sized peiced of equipment (sorry i dont know what it was called). It is becoming harder now for him to swallow even thin liquids. We are looking for a doctor who is very very good at widening these strictures...someone mentioned the possibility of a Doctor in north carolina who is highly recommended but couldnt give us the name or even the town. Im hoping someone here can help us out?   Actually if you know of ANY doctor anywhere who is very good at either stretching (dilating ) the stricture or placing a stent or surgery or anything that would help, please let us know. Husband is really depressed (understandably) about this.

I have had my share or 'non viable', unusable dilations and have had to rely on my feed tube. 

I am a new member here but I am past my 5th year of diagnosis, flights of fearful fancy and medical intervention, which did include the insertion of a PEG tube.  This was done within the 2nd month of my diagnosis.  New to me, I went with the flow.   The one most interesting thing I have not seen concerning head and neck and esophageal cancers are the decisions on the doctor's behalf to have all your teeth removed!  THAT was more traumatic to learn than being told I was Stage VI, SCC and could possible have to have my jaw broken, tumor removed and hte face reconstructed!

But I digress.  The peg tube you get initially, as to my understanding, is the one that is a long tube that sticks out your stomach and has a one way valve on the end.  Through this you supply your liquid needs, because corn sure isn't going through it!

At one point in my different surgical procedures (5 total) my original feed tube was accidently pulled out (with a loud pop!) and the hospital went into a panic because they had never had this happen before.  I think the nurse who did it got her name on a plaque of some sort.

The following day, they replaced it with a different type of PEG tube entrance device.  See the illustration.  This is called a MIC-KEY Low Profile Gastrostomy Feeding Tube, which is a questionably accurate name.  It is the 'port' to which you attach a removable tube, through which you pour your liquids.  At first my wife was Vita mixing everything in the house, not taking into consideration the caloric valure or it.  Although the VItamix can turn a two by four into a liquid, it doesn't necessarily render everything into a passable medium for that 3 mm hole at the end of the tube.  Final outcome has been, Ensure and I have become best friends.  We been going together longer than any girlfriend I ever had. (priorities I guess!)

http://www.mic-key.com/resources/reimbursement-information-page.aspx  is a link to those who are on medicare and need a break in costs of things.  I want you new patients to know this information up front because I was 4 years into my PEG tube journey before we accidently found out MEDICARE would handle it.  You don't have to do that.

if you want to follow my entire trip, look at  gnoled.blotspot.com and find out about the ONLY contagious cancer out there.  I have no connection with these people above other than I love their product!  good luck to you all!