Tumor found post-surgery

jwf78

Hi all,

I want to say thanks to everyone participating on this board. I read a lot of posts last year when my father was first diagnosed as a Stage III. There was so much good information, and I passed much of it on to my parents.

I think he's at the 6 month mark past surgery, and they found a malignant tumor that was on the outside of the esophagus. The doctor has said sugery is not an option, I think because it is a post-op tumor or something of that nature. They have offered him chemo and a clinical trial. I'm not sure what the trial is, I haven't found that out yet.

So, I have a few questions. I'm sorry you are all in this fight in the first place, and I admire your willpower to fight the fight as well as participate in this board and share information:

Is surgery after an initial removal really out of the question? Should he get a second opinion?

How effective is chemo, typically, at preventing the spread of the original tumor and preventing mets? How long does it work?

I hope he's able to fight it for at least 6 - 8 months, maybe more.  I'm dreading the worst case... Is it possible for the chemo to not work and the cancer to start aggressively growing and metastisizing? Maybe it will not metastisize at all?

I ask a lot of questions about times and estimates because I'm deployed and trying to figure out what I need to do. I want to get my kids back to see their granddad before he gets seriously ill.

 

Thank you,

Josh

dfd24

Hi Josh,

My husband had a recurrence to the pleural membrane, thus metastasis,  and because of the position of the nodule the surgeons thought it was not good to operate. the recurrence was in march 2012 . the operation was july 2010. last year he had six rounds of cisplatin 5 fu and got almost complete response. he was then on xeloda but had progression march 2013. last year they forgot to test him for her2. they tested him this April 2013 and he was found to be her2 positive. he was given herceptin and folfox. he had a very good response to treatment that showed on the pet scan last week, aug 16 2013. his oncologist took away the oxaliplatin part of the treatment to avoit neuropathy and he is continuing treatment LV5FU2 and herceptin. he feels very good.

as far as a second opinion , I would be in favor. Even though my husband had a multidisciplinary team 

decide what to do for his recurrence they still made a mistake by not testing for HER2. none of them thought to do it.

i would also ask more details about the trial. 

all the best to all of you,

danièle

 

 

goty2001

Trials

Not to overstate it, but, grab any chance of being on a trial with both hands and at least keep an active interest unless you have a definite reason to opt out. There are no guarantees, but trials are generally the best way of getting to the very latest cutting edge treatments, and they're not keen to trial stuff that has little chance of improving upon what's already out there.

Deathorglory

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

goty2001

Trials

Some day there will be another major breakthrough like herceptin was .. of even (whisper it) a cure, and it will start out as a trial ... so I'd be sure to follow any such offers up ...

jwf78

goty2001 said:

Trials

Not to overstate it, but, grab any chance of being on a trial with both hands and at least keep an active interest unless you have a definite reason to opt out. There are no guarantees, but trials are generally the best way of getting to the very latest cutting edge treatments, and they're not keen to trial stuff that has little chance of improving upon what's already out there.

Thanks, I think  he's

Thanks, I think  he's definitely pursuing the trial. I haven't heard back from him but I'll save what you said for encouragement.

jwf78

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

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.

jwf78

dfd24 said:

Hi Josh,

My husband had a recurrence to the pleural membrane, thus metastasis,  and because of the position of the nodule the surgeons thought it was not good to operate. the recurrence was in march 2012 . the operation was july 2010. last year he had six rounds of cisplatin 5 fu and got almost complete response. he was then on xeloda but had progression march 2013. last year they forgot to test him for her2. they tested him this April 2013 and he was found to be her2 positive. he was given herceptin and folfox. he had a very good response to treatment that showed on the pet scan last week, aug 16 2013. his oncologist took away the oxaliplatin part of the treatment to avoit neuropathy and he is continuing treatment LV5FU2 and herceptin. he feels very good.

as far as a second opinion , I would be in favor. Even though my husband had a multidisciplinary team 

decide what to do for his recurrence they still made a mistake by not testing for HER2. none of them thought to do it.

i would also ask more details about the trial. 

all the best to all of you,

danièle

 

 

her2

Daniele, thank you for the response, and thank you for the information on HER2. I've asked my parents to find out if they were tested for HER2. 

Based on what you and Ed said I'm going to find out what hospital it is and see if there's value in a second opinion. I think it's worth it to at least have the records reviewed by a second set of eyes at another treatment facility.

When it comes to medical, I'm all for second opinions. Due to some nursing mistakes he almost died during the initial treatment.

Thanks again for the responses, you guys really help give me some confidence in my thought process going into this.

Deathorglory

jwf78 said:

Ed, thank you brother. I'm

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.

Expectations

Josh.

 

Unfortunately, there's no clear timeline/set of expectations that you can use to base your decisionmaking on.  There's a thousand and one variables that all play into your own personal reality (age, medical history, physical fitness, luck, support network, quality of doctors, random blah blah, etc...).  There's no chart that lets you know where you are compared to the "average".  You have to extrapolate that stuff for yourself and decide what that means for you.  

 

The chemo could start very soon after the port is installed.  It was only a couple of days for me.

 

Has he been tested for HER2?  It's a really big deal.  Unfortunately, a lot of docs are not up to speed on this.

 

Thanks for your service,

 

Ed

 

 

 

 

Heeran

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

jwf78

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

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.

jwf78

Update

My dad is at the hospital getting a chemo port now. I'm not sure what chemo he's receiving. He has an appointment with the Trial doctors next week. I stressed with both him and my mom to find out about HER2 testing, and if there was any pushback to get a second opinion and to have that test done....

It looks like the first follow-up PET scan is in 8 weeks, so that's when we will know the outcome, unless it gets aggressive before that point...

Thank you all 

aandcsidoti

jwf78 said:

Update

My dad is at the hospital getting a chemo port now. I'm not sure what chemo he's receiving. He has an appointment with the Trial doctors next week. I stressed with both him and my mom to find out about HER2 testing, and if there was any pushback to get a second opinion and to have that test done....

It looks like the first follow-up PET scan is in 8 weeks, so that's when we will know the outcome, unless it gets aggressive before that point...

Thank you all 

Chattanooga hospital

Hi! 

My husband had his chemo port put in and his Ivor-Lewis procedure done at Memorial Hospital in Chattanooga, TN.  Dr. Charles Portera Jr was his surgical oncologist and Dr. Headricks was his thoracic surgeon.  All of the staff we have met at Memorial were very kind and patient care was good.  I do not know if my husband has been tested for HER2 but I plan to ask tomorrow.  

The chemo port will make his arm and shoulder pretty sore for a few days (at least it did my husband).  It also needs to be flushed at least once a month.  I hope everything goes well.