Surgery with NED?

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Surgery with NED?

by CancerNY on Mon Aug 07, 2017 02:13 PM

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My relative was diagonsed with Stage 3 squamos cell, near the trachea. After the full treatment of radiation and chemo, the PET scan the results were NED!

However, the surgeon is recommending surgery (no surprise) because he claims that the Pet scan is not 100% accurate.

Give the risks of the surgery, and the additional risk (according to my relative) because of the location of the tumor, does it make sense to follow the surgeon's advise?

He also has a "complimentary" physician at his hospital. He is mostly eating a ketogenic diet, and and doing all sorts of other things (tumeric, essaic tea, Budwig, etc.), which at worse, will do nothing, but at best, maybe something.

RE: Surgery with NED?

by Aoife on Tue Aug 08, 2017 06:21 AM

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I had the surgery for stage 3 squamous cell esophageal cancer in the middle of my esophagus - I did have a total response to chemo (no radio) but I did not want to live in fear of it coming back plus I wanted to have children.  I was only 32 at the time though.  I am over 10.5 year survivor at this stage and did have my two children post cancer treatments.

RE: Surgery with NED?

by CancerNY on Tue Aug 08, 2017 04:03 PM

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On Aug 08, 2017 6:21 AM Aoife wrote:

I had the surgery for stage 3 squamous cell esophageal cancer in the middle of my esophagus - I did have a total response to chemo (no radio) but I did not want to live in fear of it coming back plus I wanted to have children.  I was only 32 at the time though.  I am over 10.5 year survivor at this stage and did have my two children post cancer treatments.

Congratulations!

RE: Surgery with NED?

by CancerNY on Tue Aug 08, 2017 04:04 PM

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On Aug 08, 2017 6:21 AM Aoife wrote:

I had the surgery for stage 3 squamous cell esophageal cancer in the middle of my esophagus - I did have a total response to chemo (no radio) but I did not want to live in fear of it coming back plus I wanted to have children.  I was only 32 at the time though.  I am over 10.5 year survivor at this stage and did have my two children post cancer treatments.

It is interesting you had no radiation. I thought the radiation was primay, and the chemo was secondary. His tumor was very large, making it very hard to swallow without chasing food down with water.

RE: Surgery with NED?

by Aoife on Tue Aug 08, 2017 04:12 PM

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My tumor was in the mddle and I could not eat at all and even drinking fluids was difficult.  It does depened case by case - I wanted to have children afterwards so that could have been a factor, I also was on a medical trial for mine.

RE: Surgery with NED?

by Fnixon on Thu Aug 10, 2017 03:28 PM

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You have to remember that all these scan procedures are good but it takes thousands or many more cells to show up on these tests. The surgeon has your best outcome in mind.

RE: Surgery with NED?

by Sdurnell on Fri Aug 11, 2017 05:30 AM

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You don't mention how far post treatment this person is.  That might make a difference.  There is a trend lately to dispense with surgery, which used to be more of a given, in cases where the tumor(s) is HPV positive.  Then there is often a wait-and-see period to determine whether surgery is needed.  

Sometimes doctors don't agree on the next step, or whether there needs to be one.  For example, what do his radiation oncologist and medical oncologist suggest?  There is more than one doctor involved, so maybe gathering the opinions of all will help him decide.

I don't really know what a complimentary doctor is--a free one?

But the alternative treatments are OK as long as he has already done the medical treatments first.  However, I would not count them in the consideration of whether or not to get the surgery.

If he has had only one NED scan, he may have the option of waiting three more months for the next one before he decides.  That would likely not be a bad choice, and his other doctors may recommend it.

Best of luck to this guy.

Susan

RE: Surgery with NED?

by CancerNY on Fri Aug 11, 2017 10:43 AM

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Thanks for your reply.

The complementary doctor is affiliated with the hospital. So he is not some quack selling supplements. He respects the radiation and medical oncologists, and they respect him. 

My relative went from the worst junk food diet, to a mostly ketogenic diet (no refined sugar, fruit juices startches and grains) when he got his diagnosis. His breakfast went from donuts and pastries to four eggs every single day (he could get the eggs down pretty easily with the tumor). As a bonus, his cholesterol plummeted, and he lost 25 pounds of belly fat.

There were other thing hed did (Budwig protocol, essaic tea, and a few other things I can't remember). 

If he has NED, he will credit all the doctors  - the combination of radiation, chemo, and complimentary approaches. The "sugar feeds cancer mantra is spreading like wildfire.

RE: Surgery with NED?

by Ns347 on Tue Aug 15, 2017 04:39 AM

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I think most people would say that surgery offers you the best chance of a cure. Many people are not even offered option of surgery because it has spread.

If I were you, I would get an opinion of a very experienced surgeon at a major academic center. If you need suggestions tracking such a facility down near you, I can help.

Surgery carries major risks, and my dad had a lot of complications after the surgery incudung a 30 day stay in hospital plus 11 days in the ICU. I tell you this because even knowing what he went through, in retrospect, we still would have chosen the surgery.

Obviously it's a personal choice, but you will find that most people on this forum, as well as most surgeons, would strongly recommend the surgery

RE: Surgery with NED?

by CancerNY on Tue Aug 15, 2017 12:34 PM

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Thanks for your reply.

I am on a couple of EC Facebook pages, and it seems for every person who is climbing mountains 10 years after the surgery, there is more than one that suffered for years (or died because of the surgery). And his tumor located near the trachea apparently makes this very risky surgery evern riskier.

Surgeons recommending surgery is not convincing. I would love to see data (which I've tried to find but I can't), the difference in outcomes between those who had the surgery and those who didn't. 

He said something to the effect that he would rather live three years with no surgery than four years with the surgery.

Thanks again.

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