Has anyone survived esophageal Cancer?

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RE: Has anyone survived esophageal Cancer?

by Dlynn1210 on Sat May 06, 2017 08:27 PM

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Jana -

     I will share with you and others what it took me 8 years and 9 1/2 years post treatment to learn. 

     I was diagnosed in IL with tonsil cancer in July 2007 and went through treatment at the Cancer Treatment Center of America in Zion, IL.  I had a tremendous ENT who diagnosed my cancer and surgically removed my tonsils.  She did four esophageal dilations on me - all with total success.  Then she moved her practice to downtown Chicago about the same time that I moved to FL.  I put off finding another ENT (Otolaryngologist) until I could barely eat anything. 
       I made an appointment to see an ENT that my husband had been to for another problem.  At my first and only appointment he informed me that ENTs do not do dilations in the state of FL - GI doctors do them.  Then he went on to tell me how one woman wound up in Intensive Care after a dilation.  He set me up for a swallowing test to see where I was with swallowing (which I propmptly failed) and gave me the name of a GI doctor to see for the dilation. 

    Before I could make an appointment with the GI doctor I was hospitalized with a brain bleed.  A nurse noticed I was aspirating with every bite of food so the hospital called in a GI doctor.  After being told by the ENT that only GI doctors do them in the state of FL I accepted their calling in a GI doctor. 

      The GI doctor scheduled me for a dilation but began to push heavily to put a feeding tube back in me.  It took me a year to get off of one after treatment so I was adament that I did not want one.  I had a little bit of knowledge on this subject as I was a speech pathologist prior to my cancer diagnosis so was familiar with the mouth and throat anatomy.  He proceeded to do the dilation telling my husband just before the surgery that I was going to find out - I would need a feeding tube for the rest of my life.  Hours after doing the dilation I failed another swallowing test - the same as the following day with another test.  On my 5th day in the hospital, a doctor whose only job was to oversee my medications mentioned that I had a flexible dilation.  I had all my records from IL and was certain they had said "rigid" endoscopy.  I asked my husband to bring my records to the hospital and my laptop.  I was correct - it had rigid endoscopies for all the procedures.  I then researched the differences.  Eight years post treatment and I learned that there are two types of dilations.  By Day 6 in the hospital (no food) I was getting weaker by the day.  My husband called my ENT in IL and she told me I needed an otolaryngologist and one experienced in cancer.  I told them one way or the other I was going home.   

     When the GI doctor came into see me I asked him why he had done a different type of dilation when the others had been so successful?  His response - he wasn't trained in rigid endoscopies.  The flexible did not help me at all - and if I had left it there I would be on a feeding tube today.

     Instead I started searching for an otolaryngologist in FL who was experienced in cancer many prayers were answered.  I found Dr. Joseph Steininger who did his fellowship in head and neck oncology at Stanford.  One month after the flexible (aka balloon) I had a rigid endoscopy and was back eating within days.  I went one year and three months before needing another one.  I just had one last Wednesday.  While talking to Dr. Brewer, the anesthesiologist, prior to surgery, she told me that only ENTs are trained in rigid - 9 1/2 years post treatment.  The head nurse for the first procedure in FL told me that this has always been an ENT problem.  Makes sense when it is our esophagus that is closing up due to the radiation. 

    I contacted the hospital and I contacted the first ENT's office to plead with them not to do this to another cancer patient.  Do not send another cancer surivor to a GI doctor when it should be a ENT whose seciality is the throat area.  Dr. Steininger turned out to be in the same group as the first ENT - only at a different location.  Why the first ENT would send me to a GI doctor is beyond me - and almost resulted in my being on a feeding tube for life. 

     Please know the differences in dilations because apparently even some other doctors don't know.  All dilations can be dangerous if your doctor doesn't know what he is doing - but I thank God daily that Dr. Steininger does 'know his stuff' (as one nurse put it).  I would travel to any other state to see him when needed.  As it is, I only have to drive 40 min.   

Best of luck to everyone.

Diana 

      

RE: Has anyone survived esophageal Cancer?

by wandaking1 on Thu May 18, 2017 08:10 PM

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please can you share your knowledge and your notes,i need help!

RE: Has anyone survived esophageal Cancer?

by laserkaikohe on Thu May 18, 2017 08:56 PM

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Hi there. My dad was diagnosed with early stages of esophagael/upper stomach cancer 5 years ago.  As he was 73 at the time and was asthmatic, he wasn't an ideal candidate for an operation.  So he had a 5 week stint of a combination of chemo and radiation treatment in August 2012.  He has just had his 5 year check and is still in the clear thank goodness.  Fingers crossed.  There is hope and I think alot depends on the stage the cancer is at, as to the treatment offered.

RE: Has anyone survived esophageal Cancer?

by Georgef on Thu May 18, 2017 09:37 PM

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I was 78 when told I had Esophageal Cancer. Hit me hard, was in critical condition for a month. Lost 90 lbs. Last month i was told after 5 years, i am free and clear of Cancer!

RE: Has anyone survived esophageal Cancer?

by Dlynn1210 on Sat May 20, 2017 08:27 PM

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On May 18, 2017 8:10 PM wandaking1 wrote:

please can you share your knowledge and your notes,i need help!

Do you suspect cancer or have you been diagnosed with a type of cancer?

RE: Has anyone survived esophageal Cancer?

by Dlynn1210 on Sat May 20, 2017 08:30 PM

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On May 18, 2017 8:56 PM laserkaikohe wrote:

Hi there. My dad was diagnosed with early stages of esophagael/upper stomach cancer 5 years ago.  As he was 73 at the time and was asthmatic, he wasn't an ideal candidate for an operation.  So he had a 5 week stint of a combination of chemo and radiation treatment in August 2012.  He has just had his 5 year check and is still in the clear thank goodness.  Fingers crossed.  There is hope and I think alot depends on the stage the cancer is at, as to the treatment offered.

According to my oncologist, it was the invent of Cisplatin Chemo that made a huge impact on the survival rates of head and neck cancer patients.  I also had TOMO radiation therapy. I am 9 1/2 years cancer free after being diagnosed in 2007 with tonsil cancer.   

Diana

RE: Has anyone survived esophageal Cancer?

by mission on Fri May 26, 2017 01:15 PM

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Don't know if you are still active on this Board, but if so, is your husband still alive?  You wrote this in 2002, it is now 2017.  Curious to know how he is doing?  My husband was diagnosed Stage 4 E.C. one year ago.

Hope to hear back.  Thanks.

RE: Has anyone survived esophageal Cancer?

by kingzombi60 on Sat May 27, 2017 07:52 PM

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Not everyone.

RE: Has anyone survived esophageal Cancer?

by Tx72Lady on Thu Jun 22, 2017 11:17 AM

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My husband was diagnosed with Esophageal cancer in 2015. He went through radiation/chemo and then the surgery to remove The esophagus. Finally was able to return to work after six months. He then had to have a hernia surgery, although scans showed he was NED. Six months after hernia surgery (January of this year) he had another scan and was Stage 4. He just finished another 12 weeks of chemo treatment and we are scheduled to have scan on Tuesday with results July 3rd..which happens to also be our 36th Anniversary. If you look st stats...yes..this cancer can be beat. 17,000 are diagnosed yearly, 15,000 don't make it but 2,000 do survive! I am hoping my hubby is in that 2000 count. As we anxiously await scan results. It's a tough battle.. but we must keep on fighting this beast.

RE: Has anyone survived esophageal Cancer?

by Tx72Lady on Thu Jun 22, 2017 11:22 AM

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Congrats!! This does give some of us hope. Cancer treatments have come a long way. Thank you fo some positive news on this beast
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