Surgery not an option... watch and wait?

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Surgery not an option... watch and wait?

by LynneM on Wed Aug 31, 2016 04:59 PM

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I am new here, but glad to be finding a community and disscussions that are helpful.

My 75-yo father was diagnosed with E cancer in early December. He had a previous unrelated cancer in his throat, so has had a trach tube for a couple of years, and on-and-off issues swallowing. In late December, he started on a feeding tube since swallowing is problematic. He has undergone chemo and radiation, and the good news is that the tumor shrunk to being not detectable by PET scan... but biopsy of the esophageal scar tissue during a scope shows microscopic cancer cells remain.

Due to scarring from the feeding tube, general strength, and other issues, surgery has been ruled out as an option. One of his doctors (the radiologist) believes that the remaining cancer cells are unable to replicate and grow. Other doctors say that's a possibility, but it's also likely that the tumor can and will return. 

Current recommendation is to watch and wait, do another PET scan when possible (about 6 weeks from now) and see whether it grows or not. It's not clear, if it does grow, what options remain for treatment. I gather that treatments like photon therapty, targeted immunotherapy, and cryogenic therapy haven't had a lot of use with E cancer, so may or may not be on the table.

Has anyone else been in a situation like this? If so, can you provide any information on what other options, if any, might exist? In the case where it does grow back, assuming it grows as quickly as it did the first time, what can he/we expect to face?

Thanks!

RE: Surgery not an option... watch and wait?

by Ns347 on Wed Aug 31, 2016 11:49 PM

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I'm sorry to hear this and wish you all the best. Where is your dad being treated? Certain major cancer centers may be more willing to do surgery than others. it's a very demanding surgery with very high chances of complications, so I could see a smaller hospital/less experienced doc advising against it. Though...if your dad is 75 and has previously undergone cancer treatment, it does seem risky to do the esophagectomy in general...but worth exploring

RE: Surgery not an option... watch and wait?

by Gram526 on Thu Sep 01, 2016 12:19 AM

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I recently was given some info by my doctor about a supplement called IP6. Please look it up and consider giving it to your dad. It has been shown to shrink tumors and has the capacity to prevent cancer cells from dividing. People without cancer can take it also, as our bodies are fighting off cancer cells every day. I have been taking it for a month and a half. I hope you will look into IP6.

RE: Surgery not an option... watch and wait?

by LynneM on Thu Sep 01, 2016 12:21 AM

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His surgical team is at Ohio State Cancer Center, which seems experienced and respected.  The scar tissue on his stomach increases the chances of complications and leaks from the stomach into the chest cavity, from my understanding. 

Thanks for you response!

RE: Surgery not an option... watch and wait?

by LynneM on Thu Sep 01, 2016 12:22 AM

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Thanks, Gram 526! I'll look into it!

RE: Surgery not an option... watch and wait?

by Gram526 on Thu Sep 01, 2016 12:30 AM

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Lynne, You are welcome. I'm so excited about this stuff.I can send you the article the doctor gave me. His wife rescues older dogs and they had one with a malignant tumor. The vet gave the dog a couple months. She started giving the dog IP6 and it had now been 18 months and their dog is doing very well. It had been shown to reduce tumors in humans also. Good luck to you and your dad, and get him on IP6 soon. I bought mine on Amazon. Get the one called IP6 Gold.

RE: Surgery not an option... watch and wait?

by LynneM on Thu Sep 01, 2016 12:47 AM

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My only concern is that it's not recommended for people on blood thinners, which her us on. I will have him talk to his doctor next week and see what they think. Worth exploring! I would love to see the article, if you could send it.

RE: Surgery not an option... watch and wait?

by LynneM on Thu Sep 01, 2016 12:48 AM

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... Which he is on.... 

Autocorrect! :P

RE: Surgery not an option... watch and wait?

by Gram526 on Thu Sep 01, 2016 12:57 AM

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I will try to post it here. Can't promise anything.

RE: Surgery not an option... watch and wait?

by siutis12 on Fri Jul 20, 2018 08:50 PM

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I'm on a wait and watch approach after I refused to undergo the brutal life changing surgery to remove my esophagus and reconstruct my digestive system.  I'm a quality of life guy,  not quantity.  I was a competitive powerlifter and bodybuilder, a complete picture of health when this disease hit me at age 56. I had the energy levels of a teenager and the body of a 30 year old.  I never drank alcohol,  smoked or ingested illegal substances.  I consumed approximately diet from Wholefoods.  No less than four (4) doctors from various disciplines misdiagnosed me. I had lost approximately 36 pounds of my precious muscle mass and was unable to eat solid food when I was finally diagnosed properly. Professionally,  I was  a Healthcare Fraud Investigator. I was acutely aware of the lethality of esophageal cancer.  There are no good outcomes for a non-Christian. 

I initially wanted to check in to a hospice and get this over quickly.  At the behest of my two adult daughters,  I agreed to give chemotherapy and radiation and chance due to my faith in my Savior's ability to heal and my physical conditioning.  I underwent surgery two days after meeting with the oncologist.  A feeding tube was installed along with a mediport.  Exploratory surgery was performed on my abdomen and an endoscopy was attempted. After a four day hospital stay I went through all of the testing.  My body rejected the feeding tube and it malfunctioned as my strong stomach muscles kept pushing the tube out involuntarily.  The tube was replaced with a much larger one. 

The disease did not spread and lymph nodes involvement was a Medical unknown due to the size of the tumor preventing and endoscopy.  I received five chemotherapy sessions and 23 radiation treatments.  My Dodge weight dropped to 139 from a high of 190. I barely had enough energy to walk from my vehicle into the clinic. Approximately three weeks into treatment the esophagus shrunk and I begin to eat solid food with zero restrictions. 

My PET scan went from a 10.9 to a 4.1. To the dismay of my doctor's I refused surgery and had the feeding tube removed .  That was a glorious day. On Tuesday  (July 17, 2018) my medical oncologist opined I had approximately 6 months to live without the surgery .  He explained that there is nothing more he can do for me.

On Thursday I had my first true Endoscopy.  There was no defined tumor. My esophagus is thickened where the tumor once was. A biopsy was taken. I went across the street and consulted with my radiation oncologist  (hands down my best doctor during this ordeal). He suggested a wait and watch approach ,  performing an Endoscopy every three months. He opined that I have as much as three years of life remaining ,  and eternity to me without the life long side effects of surgery which may or may not extend those three years. 

Don't despair that you are on the wait and watch protocol. 

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