Just starting on this unknown journey

Deathorglory

Best Wishes

Hello,

 

Sorry to see your family wind up where the folks here have been.  Here's a couple of thoughts about some of your concerns.  Please do not mistake my thoughts for advice from a medical professional.  My understanding is that PET scans can see wider areas, but that biopsies are much more definite in their conclusions.  So, if there is only one area of concern, a biopsy will give the surest answers.  HER2 testing can be done later, but I'd suggest getting an immediate determination.  If your father is positive, the treatment can be set up to be as effective as possible from the beginning.  The staging will make an enormous difference in the prescribed treatment plan as well as in expected outcomes.  Stage I or II are vastly different animals from stage IV.  Things will fall into place once you find out exactly what you're dealing with.

 

I strongly recommend seeking out the best care you can reasonably get.  This is a serious illness that requires serious care.  Your local/regional hospital may not be equipped to deal with your situation.  Find folks who specifically deal with this disease for a living.  This is not the time to be providing on-the-job training to people.

 

I wish you the best possible results from the tests and with treatment.

 

Ed

Grateful4Forum

Deathorglory said:

Best Wishes

Hello,

 

Sorry to see your family wind up where the folks here have been.  Here's a couple of thoughts about some of your concerns.  Please do not mistake my thoughts for advice from a medical professional.  My understanding is that PET scans can see wider areas, but that biopsies are much more definite in their conclusions.  So, if there is only one area of concern, a biopsy will give the surest answers.  HER2 testing can be done later, but I'd suggest getting an immediate determination.  If your father is positive, the treatment can be set up to be as effective as possible from the beginning.  The staging will make an enormous difference in the prescribed treatment plan as well as in expected outcomes.  Stage I or II are vastly different animals from stage IV.  Things will fall into place once you find out exactly what you're dealing with.

 

I strongly recommend seeking out the best care you can reasonably get.  This is a serious illness that requires serious care.  Your local/regional hospital may not be equipped to deal with your situation.  Find folks who specifically deal with this disease for a living.  This is not the time to be providing on-the-job training to people.

 

I wish you the best possible results from the tests and with treatment.

 

Ed

Thank you Deathorglory

Hi Ed,

 

Thanks so much for the post and your kind wishes.  Hearing about everyone's experiences and what you've all learned along the way is such a huge help at this time.  I keep going from shock over how our lives have instantly changed, feeling absolutely heartbroken,  to getting ready for the battle and searching for hope, which I've found on this board.

 

Thanks again.

dfd24

Grateful4Forum said:

Thank you dfd24

Hi Danièle,

Thanks for the advice, I really appreciate it!  I will definitely look into the HER2 testing ASAP.  May I ask where your husband's trial is taking place?  We're trying to determine the best place to go for treatment and where the best chances to participate in a trial may be.  Does the trial have to take place at the facility you are being treated at?  

 

Thanks again, this is so new and overwhelming, I really appreciate hearing about everyone's experiences.  Take care.

her2 testing

hello,

we are in fact in Paris France. My husband in person is  not in t the trial, it  is just being conducted on a sample of what was removed

during the operation and is conducted by roche, the maker of herceptin, the targeted treatment 

used to treat her2 positive breast cancer and now gastric and esophageal junction cancer. they want to find out how best to test for it.

right now herceptin is being given only in the case of metastatic or recurrent cancer, but it is now routine

here in FRance to test EC patients for HEr2.( at least on what is removed during the operation, i don't know about initial biopsies)  if you are able to get it tested it can't hurt to have the knowledge . if you are 

positive it is especially useful to know it  in case you ever need the herceptin.

wish you all the best,

danièle

Grateful4Forum

dfd24 said:

her2 testing

hello,

we are in fact in Paris France. My husband in person is  not in t the trial, it  is just being conducted on a sample of what was removed

during the operation and is conducted by roche, the maker of herceptin, the targeted treatment 

used to treat her2 positive breast cancer and now gastric and esophageal junction cancer. they want to find out how best to test for it.

right now herceptin is being given only in the case of metastatic or recurrent cancer, but it is now routine

here in FRance to test EC patients for HEr2.( at least on what is removed during the operation, i don't know about initial biopsies)  if you are able to get it tested it can't hurt to have the knowledge . if you are 

positive it is especially useful to know it  in case you ever need the herceptin.

wish you all the best,

danièle

Best wishes to your husband

Thansk so much for the info, it's very helpful.  

Grateful4Forum

Update on liver biopsy

Well, my dad had his liver biopsy yesterday and today the doctor's office called to schedule an appointment for Monday to discuss surgery.  I'm hoping this means the liver biopsy didn't show anything.  

I still have a lot of questions (paul61's question list is so helpful) and we'll still request that the esophageal tumor biopsy be tested for HER2 (thanks everyone for that great advice!).  

So far my dad has had a CT scan with contrast of his chest, another of his abdomen, an MRI, blood work and the liver biopsy.  It seems they would still need to do an endoscopic ultrasound to properly determine the T stage?  At our last appointment they said none of the lymph nodes were showing anything in the scans but I now realize there still could be lymph node involvement that doesn't show on the scans.  

Anyway, that's one of the questions I'll be asking on Monday.  I'm also going to see if a PET scan or laparoscoy would be recommended?  We're meeting with a thoratic surgeon who is a faculty member at University of Nebraska Medical Center and was recruited to our area a couple years ago.

We're considering a second opinion (something that doesn't require too much travel) and also looking at NCCN facilities in CA or WA.  

I'm very grateful to have found this discussion board.  Have a nice weekend, everyone.

Grateful4Forum

Grateful4Forum said:

Update on liver biopsy

Well, my dad had his liver biopsy yesterday and today the doctor's office called to schedule an appointment for Monday to discuss surgery.  I'm hoping this means the liver biopsy didn't show anything.  

I still have a lot of questions (paul61's question list is so helpful) and we'll still request that the esophageal tumor biopsy be tested for HER2 (thanks everyone for that great advice!).  

So far my dad has had a CT scan with contrast of his chest, another of his abdomen, an MRI, blood work and the liver biopsy.  It seems they would still need to do an endoscopic ultrasound to properly determine the T stage?  At our last appointment they said none of the lymph nodes were showing anything in the scans but I now realize there still could be lymph node involvement that doesn't show on the scans.  

Anyway, that's one of the questions I'll be asking on Monday.  I'm also going to see if a PET scan or laparoscoy would be recommended?  We're meeting with a thoratic surgeon who is a faculty member at University of Nebraska Medical Center and was recruited to our area a couple years ago.

We're considering a second opinion (something that doesn't require too much travel) and also looking at NCCN facilities in CA or WA.  

I'm very grateful to have found this discussion board.  Have a nice weekend, everyone.

More Updates

So after my dad's liver biopsy, we were scheduled with an appt with a thorasic surgeon to plan for surgery, which we thought was a good sign. However at the appt we were informed the liver biospy did confirm two liver mets and surgery is not a option.  I have no idea what caused this confusion but it's been a hard week.  The surgeon is referring us to UCSF for treatment, hopefully soon, as I am panicking.  

Trying to stay hopeful and just want to get treatment going rather than all this waiting.  Trying to eat as healthy as possible in the meantime so we don't feel absolutely helpless.  We are also still waiting to hear back about the HER status.  I don't know how I'd cope without these discussion boards.  Thanks to everyone out there who understands.

trentster

UPDATE SINCE I POSTED!

Update from my husband....

I am a 56 year old non smoker and Stage 3 survivor of esophogeal cancer. I was diagnosed with Stage 3 on November 6, 2013. I was treated at Memorial Sloan Kettering in NYC.  My treatment began with 6 weeks of chemo therapy with infusion pump. My next 6 weeks consisted of chemo therapy with infusion pump and 27 radiation treatments. I then returned home for 5 weeks of rest and recuperation in preparation for my surgery.  My surgery was Friday, April 4th, 2014. I had the Ivor-Lewis procedure. I am now 12 weeks post esophagectomy surgery, I would like to share my personal experiences. I had been an avid golfer for 40 years, and was anxious to return as quickly as possible. That motivated me to aggressively begin my rehabilitation day 1 post op I was instructed to begin walking. My first day I walked nine laps around the hospital floor. 14 laps was equivalent to one mile. I increased my laps and pace daily, refusing to take a wheelchair to daily Xray tests instead choosing to walk a great distance and back.  Within 3-4 days I was walking 28-32 laps a day and was rewarded for my progress and released on day 9 post op.  I was previously told to expect to remain in the hospital for 14 days.  I continued this walking regimen and included climbing up and down stairs. On my 4 week post op surgeon follow up visit, I was told to begin golfing, exercising which included push ups and 10 pound dumb bell weights. During my 6 months of treatment, surgery and recovery, I had lost 43 pounds and weighed 137 pounds. For the last 3 weeks I have been 9 holes of golf  2-3 times a week with a golf cart. I have also carried my golf bag and walked 7 holes. My exercise regimen now includes 12-13 push ups daily and arm and shoulder dumb bell weights.  My strength has increased considerably and my weight has increased by 7 pounds.

I have had my challenges, but everything has been manageable. 

* First week Post op  - 2 naps a day - purchased an adjustable bed. Sleeping on the wedges was uncomfortable and deprived me of much needed sleep.

* Eating small portions, but not limited to what I could or couldn't eat

* Was Sensitive to milk shakes and protien drinks - caused the dumping syndrome

Today 12 weeks later, I am eating larger meals, still have occasional bouts with dumping syndrome. They are not as severe, however predicting when they will occur is still a mystery.

Overall, my complete experience from when I began treatment,  through surgery and now recovery has been easily tolerated and manageable. I believe a great surgeon, great oncologist, positive attitude, supportive family and my unbounding faith has been the secret to my rapid recovery.

Should anyone have any questions, I would be glad to help in anyway.

bassman1968

Good luck with my wife is 41

Good luck with my wife is 41 we was told she has stage 4 esophageal cancer she has 3 chemo treatment we also have to boys 11 and 13 just wanted to let you know your not alone good luck hope everything works out for you

 

John Char

bassman1968 said:

Good luck with my wife is 41

Good luck with my wife is 41 we was told she has stage 4 esophageal cancer she has 3 chemo treatment we also have to boys 11 and 13 just wanted to let you know your not alone good luck hope everything works out for you

 

I have stage 3 esophagus

I have stage 3 esophagus cancer that has spread to my lymph nodes in my stomach and into my bad. The doctor has given me 2 to 4 months to live. I'm not ready to leave my wife yet. We had so much we wanted to do And now this

dfd24

John Char said:

I have stage 3 esophagus

I have stage 3 esophagus cancer that has spread to my lymph nodes in my stomach and into my bad. The doctor has given me 2 to 4 months to live. I'm not ready to leave my wife yet. We had so much we wanted to do And now this

to john char : hope and her2

I know someone else who was given a few months to live and it's two years later and there is no evidence of cancer, his tumors shrank and nothing is visible any more.

everybody is different and I don't know why doctors want to be so precise. It's a definite trauma hearing something like that.

 discuss things with your wife ,get your affairs in order,and  get the best treatment possible even if it means asking for a second opinion.

do ask if you have been tested for HER2 . if you haven't insist on getting tested as there is targeted therapy called herceptin if you are Her2 positive.

wish you all the best,

danièle

John Char

dfd24 said:

to john char : hope and her2

I know someone else who was given a few months to live and it's two years later and there is no evidence of cancer, his tumors shrank and nothing is visible any more.

everybody is different and I don't know why doctors want to be so precise. It's a definite trauma hearing something like that.

 discuss things with your wife ,get your affairs in order,and  get the best treatment possible even if it means asking for a second opinion.

do ask if you have been tested for HER2 . if you haven't insist on getting tested as there is targeted therapy called herceptin if you are Her2 positive.

wish you all the best,

danièle

dfd24

We go see the doctor tomorrow. I wrote herceptin down to ask the doctor. We would try anything. Thank You

dfd24

John Char said:

dfd24

We go see the doctor tomorrow. I wrote herceptin down to ask the doctor. We would try anything. Thank You

john char

How did the doctor's visit go?

all the best,

danièle