Tumor found post-surgery

Deathorglory said:

Post surgery tumor

Hello Josh,

 

I can't offer conclusive answers to you, but I can offer what I've experienced and learned from my own research.  

 

Not offering surgery as an option could be a result of a number of reasons.  They may be unable to do surgery on an area that has already had surgery.  They may not think surgery is wise b/c the cancer is considered metastatic or "on the loose".   If that's the case they don't like to do surgery in one spot when the cancer is likely to set up shop somewhere else.  They like to do chemo at that point because it's system wide (like the cancer), not localised.  They may not be expert enough to perform surgery in your case.  If you're going to Johns Hopkins or somewhere comparable, trust that there's not a surgical option.  If you're at your local, neighborhood hospital, please do consider a second opinion from a top notch hospital that specializes in this.

 

How effective the chemo might be is a very individual thing.  It sounds like you are running into what is unfortunately the standard treatment.  Recurrent and metastatic EC is considered incurable.  Doctors will recommend clinical trials and pallative treatment, not offer cures.  There are folks who manage to do well in these situations, but they are not the norm.  Please never think that you are the norm; believe that you are the exception.

 

It is very possible that chemo will not be effective and the cancer will grow aggressively.  Unfortunately, that is what EC does.  It keeps coming back bigger & badder than before.  I am currently experiencing my second "complete response" to treatment, but both my doctor and I fully expect another recurrence at some point.  It's just what happens.  That there hasn't been metastasis yet is encouraging.  Even a localized recurrence is undesirable, but it's a whole lot better than brain & liver mets.

 

Best wishes and best of luck,

 

Ed

Ed, thank you brother. I'm happy for you that you've been the exception, and it's a heartfelt moment to hear directly from someone in this fight.

He's going to a hospital in Chattanooga. It's supposed to be a reputable place, I'll have to find out where he's going and see if a second opinion would be worth it. I know it's his fight, I'm just involved in so much as I want him to be as healthy as possible for as long as possible for the sake of being with his grandkids.

You are certainly an exception to what I've seen, and I hope you stay that way. His first appointment for the chemo port is tomorrow, I don't know if he starts then or not. I'm going to try to find out when the follow-up appointment is to see if the chemo is working. That's when I'll need to make the decision to come back early...

I set it in my mind that it's incurable at this point, and I'm pinning my expectation that he'll get a good 6-8 months out of chemo, but acknowledging the possibility that he may not respond to chemo or he may be able to go another 1-2 years.

You've got my support man. Thank you for sharing.

Heeran said:

My mom had recurrence at surgical site

my mother was diagnosed 2 years ago and eventually what ended up happening is continuous chemo to keep it from spreading b/c more radiation was not an option anymore. We were told at that time is was to prevent a spread.  Her tumor around the surgical site stayed steady for several months and then all of the sudden got aggressive.  I wish now that after the surgery but before the pet scan lighting up again, we would have utilized nutriional therapy.  Would she have followed it considering it cuts out so many of the food she loves.  Probably not.  

 

I'm a ssuming a second surgery is not an option but I'm no doctor. I also have not seen another post on this board where someone had 2 esophagectomies.  At the beginning when she was disagonsed, I'm assuming different patients have different outcomes and responds to treatments in all sorts of ways.  What I shared is only 1 story.  Good luck to you.

 

Heeran

Thanks Heeran. It doesn't look like it is standard treatment anywhere to have two esophagectomies. I wouldn't mind knowing the medical reason why.

You're right, I think the surgery can cause a false sense of security. Once you've been diagnosed with any cancer it seems vital to change your environment immediately. Remove all chemicals, and keep any and all processed food out of ones body. Hell, it helps to do that anyway. I've made a lot of success with that. It's my goal to live off of a full paleo diet. I have cut out processed food, most dairy, and all bread. I have to move on to sugar, then finally salt and butter.

Thanks Heeran, I read one of your other posts the other day, you have a very heartfelt story.