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IS IT POSSIBLE I WILL HAVE TO USE THE FEEDING TUBE FOR LIFE?

grateful1
Posts: 81
Joined: Jun 2010

MY TUMOR WAS INOPERABLE. THEN RAdiation iodine treatment failed. now they are going to try to shrink the tumor which is near my windpipe and aorta with radiation and a low dose of chemo. but my esophagus is shot too and i may need a feeding tube as i have two strictures.

did you ever hear of anyone never being able to swallow again and have to live on a feeding tube. I don't know what todo. Thanks for any help.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I have read about some folks who are unable to eat by mouth after treatment. It seems to be very uncommon. There are a couple of people on another website I visit who will have a feeding tube for life. Your esophagus is shot? Can't be repaired? Several people here and on another website have had strictures treated. I had a dilation done almost a month ago - that seems to be needed for lots of folks. Hoping that if you do need a feeding tube, it's temporary (like it is for the vast majority of us).

grateful1
Posts: 81
Joined: Jun 2010

THANK YOU ALL SO MUCH. ABOUT TWENTY YRS AGO, MY ESOPHAGITIS WAS MISDIAGNOSED AND I THREW UP BLOOD CONSTANTLY. MY BLOOD COUNT GOT SO LOW--I WAS DOWN TO TEN MINUTES TO MY HEART STOPPING. EVERYBODY HAD GIVEN UP ON ME--BECAUSE I COULDN'T EVEN SWALLOW MY OWN SALIVA--AND ONE DOCTOR IN NYC TOOK A CHANCE ON ME. SINCE THEN I HAVE BEEEN SCOPED AND STRETCHED NUMEROUS TIMES. THE DOCTOR ALWAYS SAID MY ESOPHAGUS WAS IN SUCH BAD SHAPE THE ESOPHAGUS WOULD PROBABLY BREAK IN MY CASE. I HAD TRANSFUSIONS GALORE--SOMETIME FOR DAYS AFTER THE STRETCHING.

THEN BECAUSE I WAS IRRADIATED AS AN INFANT FOR AN ENLARGED THYMUS I DEVELOPED A NODULE ON MY THYROID. IT CAME BACK BENIGN BUT THE DR SAID MOST PEOPLE IN MY GROUP WIND UP WITH CANCER. I DIDN'T GET IT OUT BECAUSE I HAVE A MUSCLE DISEASE AND AM HIGH RISK FOR GENERAL SURGERY.

IN DEC 2009 I BEGAN GETTING PAIN IN MY NECJ, THROAT, EAR ETC. I WENT BACK TO THE THYROID DR AND HE DID A NEEDLE BIOPSY WHICH CAME BACK MALIGNANT. I BEGAN TAKING POLYMVA A SUPPLEMENT MENTIONED IN SUZANNE SOMERS BOOK KNOCK OUT BECAUSE THEY THOUGHT I HAD POORLY DIFFERENTIATED OR ANAPLASTIC THYROID CANCER. THEY OPERATED FOR FIVE HOURS IN APRIL 2010 BUT COULD NOT REMOVE THE TUMOR BECAUSE IT WAS TOO CLOSE TO STRUCTURES LIKE THE AORTA AND WINDPIPE. BUT WHILE I WAS OPEN THEY DID A BIOPSY AND IT CAME BACK TO THEIR SHOCK BENOGN.. THIS WAS A NEW NODULE ON THE LEFT SIDE. I DISCOVERED MY DR. HAD SEEN THAT NODULE IN 2006 BUT JUST NEVER INFORMED ME --OTHERWISE I WOULD HAVE GOTTEN IT REMOVED OR HAD IT SCANNED EVERY YEAR. BUT NOW IT WAS TOO LATE TO REMOVE IT.

I JUST HAD RAI--AND IT SHRUNK THE THYROID WHICH APPEARED BENIGN BUT THE IODINE WOULD NOT GO TO THE LARGE TUMOR.

IT IS PAINFULL AND POKES OUT MY NECK AND ALL IN THAT AREA.

NOW THEY WANT TO TRY OUTWARD IRRADIATION AND LOW DOSE CHEMO FIVE TIMES A WEEK FOR SIX WEEKS. BUT THEY SAID IT WILL BE ROUGH ON MY ESOPHAGUS.

THEY ARE BAFFLED BY MY CASE. I ALSO HAD FIFTY TO A HUNDRED DENTAL XRAYS WHEN SOMEONE HIT OUR PARKED CAR AND MY TEETH LOOSE. I HAD EVERY TOOTH ROOT CANALED AND THEN THE GUM OPERATED ON AND THEN I STILL LOST THE TOOTH. SO I HAVE HAD A LOT OF IRRADIATION TO THIS AREA.

THEY ARE HOLDING A MEETING OF ALL THE DOCTORS TO DECIDE IF THEY SHOULD GO AHEAD WITH THIS IRRADIATION AND CHEMO OR JUST WAIT AND WATCH AND SEE IF IT SPREADS.

I DON'T WANT A FEEDING TUBE FOR LIFE AND I AM AFRAID OF NOT BEING ABLE TO SWALLOW AGAIN. BUT I AM AFRAID OF IT SPREADING TO MY LUNGS AND HEAD ALSO IF I DO NOTHING. THIS IS SUCH A BIG DECISION. I HAVE TWO TEENAGE GIRLS AND A GREAT HUSBAND. I THANK YOU FOR YOUR ADVICE.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Grateful, like Pam said, many of us on this board have had feeding tubes. I've had mine about five months. The fact that you have a feeding tube, doesn't mean you'll always need a feeding tube. I hope your esophagus can heal be repaired, and the strictures lessen in size. They are more key to swallowing in the future--as I'm sure you know. Though there are some who will use the tube long-term, there are certainly cases where esophogeal degradation and strictures have been treated and improved. I hope you will fall into the latter group.

best, Hal

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I have actually met someone that had a choice based upon his surgery. The choice was between being able to talk or being able to swallow. He chose to be able to speak, so he is on the feeding tube for life. He can swallow very little by mouth just based upon his new anatomy.

There are specialists who can help with swallowing.

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I have actually met someone that had a choice based upon his surgery. The choice was between being able to talk or being able to swallow. He chose to be able to speak, so he is on the feeding tube for life. He can swallow very little by mouth just based upon his new anatomy.

There are specialists who can help with swallowing.

Sorry - Double Post

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