My Husband:( Adenocarcinoma of the Esophagus Stage IIb

Cherbear15

Greetings all,

I've been reading for several days and have finally gotten throught the techy difficulties (Have no clue what I was doing wrong!)

We have our surgeon chosen at the University of Chicago and now after seeing their oncologist we are attempting to plan the chemo/radiation therapy.

We have been asked to do this trial : CALGB 80803 Randomized Phase II Trial of PET Scan-Directed Combined Modality Therapy in Esophogeal Cancer

I'm thinking one is a targeted therapy on one is not?

Anyhow, we will probably be staring chemo next week and Ivor Lewis surgery some weeks after chemo is complete and they feel he is ready.

I'd love to hear the things they don't tell you sort of feedback and look forward to sharing and contributing....

They reallly should create a new emotion altogether and call it cancer becuase there is no way to describe all them at once!

Warm Regards,Cherie

paul61

Some things they did not tell me

Cherie,

I was diagnosed in October of 2009 with adenocarcinoma at the gastro esophageal junction. I had Ivor Lewis surgery in December of 2009 and almost four years later, I am doing well, with clear scans since my chemotherapy and surgery. My journey was a bit different than your husband’s in that I was originally staged as T2N0M0 or Stage 1 and went directly to surgery. The pathology from my surgery showed that 1 of the 22 lymph nodes they removed in surgery contained active cancer cells; so I was restaged as T2N1M0 or Stage IIB.

Things they did not tell me that I learned as things went along:

 

Chemotherapy: (Of course your experiences may be different than mine depending on the chemo regimen)

•  Chemo takes time. On infusion days you will be there around six hours or more. Bring a good book to read.
• They will give your husband medicine for nausea. Don’t wait for the nausea to start before taking them once nausea gets started it is hard to stop
• Many chemo drugs cause mouth sores, often keeping ice in your mouth during chemo infusions reduces the amount of the drug that collects in the cells of your mouth and reduces mouth discomfort
• Most chemotherapy drugs cause dehydration. It is almost impossible to drink enough water to stay appropriately hydrated. Ask for IV hydration two to four days after infusion days.

 

Surgery:

 

• Ivor Lewis esophagectory is MAJOR surgery find a surgeon and a care facility that does MANY of these surgeries each year. Don’t be embarrassed to ask your surgeon how many esophagectomies he/she performs each year and what the outcome statistics have been.
• Your husband will be in the hospital for approximately 8 to 10 days. He will be very weak when he comes home. Recovery from this surgery takes time.
• My surgeon recommended a home care nurse that came to our house every other day to help change surgical dressings and take vitals. It was very comforting to have regular checks by a medical professional.
• They will probably install a feeding tube called a “j-tube” to supplement your husband’s nutrition while he gets used to his new digestive system. It sounds a bit frightening but is actually easy to deal with and provides great support after surgery
• The better physical condition your husband is in prior to surgery the less chance of major complications. I tried to walk as much as possible each day prior to surgery and I practiced deep breathing sessions each day to improve my lung capacity.

 

Recovery:

 

• It will take your husband several months to recover his strength and flexibility after surgery. It can’t be rushed it just takes time.
• A common side effect of gastric surgery is “dumping syndrome”. Dumping syndrome is caused by food passing through your system too quickly. Following a pre-defined diet and avoiding certain types of food help but time is also required. At first it seems like you will never get over it, but don’t panic it does get better.
• It is good to talk to people who have had this surgery as you go through recovery. It is comforting to compare new sensations and issues and find it is “typical” rather than something wrong.
• Your husband will feel gradually better over the first year, the second year will be better, the third year will be much better.

 

Support:

 

• There is a CSN Esophageal Cancer Facebook Page with lots of caretakers and survivors here to support you and your husband. If you send me a friend request on Facebook at Paul D. Adams and I will add you to the group.
• If your husband would like to speak to someone who has been through the surgery and recovery process I would be happy to speak with him. If you send me a private message here or on Facebook I will send along my telephone number.

 

I wish you and your husband the best. I know this is frightening but there are many survivors out here.

 

Best Regards,

Paul Adams

Grand Blanc, Michigan
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

 

Cherbear15

paul61 said:

Some things they did not tell me

Cherie,

I was diagnosed in October of 2009 with adenocarcinoma at the gastro esophageal junction. I had Ivor Lewis surgery in December of 2009 and almost four years later, I am doing well, with clear scans since my chemotherapy and surgery. My journey was a bit different than your husband’s in that I was originally staged as T2N0M0 or Stage 1 and went directly to surgery. The pathology from my surgery showed that 1 of the 22 lymph nodes they removed in surgery contained active cancer cells; so I was restaged as T2N1M0 or Stage IIB.

Things they did not tell me that I learned as things went along:

 

Chemotherapy: (Of course your experiences may be different than mine depending on the chemo regimen)

•  Chemo takes time. On infusion days you will be there around six hours or more. Bring a good book to read.
• They will give your husband medicine for nausea. Don’t wait for the nausea to start before taking them once nausea gets started it is hard to stop
• Many chemo drugs cause mouth sores, often keeping ice in your mouth during chemo infusions reduces the amount of the drug that collects in the cells of your mouth and reduces mouth discomfort
• Most chemotherapy drugs cause dehydration. It is almost impossible to drink enough water to stay appropriately hydrated. Ask for IV hydration two to four days after infusion days.

 

Surgery:

 

• Ivor Lewis esophagectory is MAJOR surgery find a surgeon and a care facility that does MANY of these surgeries each year. Don’t be embarrassed to ask your surgeon how many esophagectomies he/she performs each year and what the outcome statistics have been.
• Your husband will be in the hospital for approximately 8 to 10 days. He will be very weak when he comes home. Recovery from this surgery takes time.
• My surgeon recommended a home care nurse that came to our house every other day to help change surgical dressings and take vitals. It was very comforting to have regular checks by a medical professional.
• They will probably install a feeding tube called a “j-tube” to supplement your husband’s nutrition while he gets used to his new digestive system. It sounds a bit frightening but is actually easy to deal with and provides great support after surgery
• The better physical condition your husband is in prior to surgery the less chance of major complications. I tried to walk as much as possible each day prior to surgery and I practiced deep breathing sessions each day to improve my lung capacity.

 

Recovery:

 

• It will take your husband several months to recover his strength and flexibility after surgery. It can’t be rushed it just takes time.
• A common side effect of gastric surgery is “dumping syndrome”. Dumping syndrome is caused by food passing through your system too quickly. Following a pre-defined diet and avoiding certain types of food help but time is also required. At first it seems like you will never get over it, but don’t panic it does get better.
• It is good to talk to people who have had this surgery as you go through recovery. It is comforting to compare new sensations and issues and find it is “typical” rather than something wrong.
• Your husband will feel gradually better over the first year, the second year will be better, the third year will be much better.

 

Support:

 

• There is a CSN Esophageal Cancer Facebook Page with lots of caretakers and survivors here to support you and your husband. If you send me a friend request on Facebook at Paul D. Adams and I will add you to the group.
• If your husband would like to speak to someone who has been through the surgery and recovery process I would be happy to speak with him. If you send me a private message here or on Facebook I will send along my telephone number.

 

I wish you and your husband the best. I know this is frightening but there are many survivors out here.

 

Best Regards,

Paul Adams

Grand Blanc, Michigan
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

 

Mountains of gratitude

Paul,

I can't thank you enough for your thoughtful and extremely helpful reply! What a kind offer to extend your phone number to help us! I will let him know and when he is ready he may just want to do that We are still having those moments where we say, "I never would have thought" or "it doesn't seem real" Some nights, like last, we wake up crunching numbers like crazy people.

I will look for the facebook page and thanks for the invite! So glad I found this place. I'm overwhelmed.....

 

Cherie

Cherbear15

Cherbear15 said:

Mountains of gratitude

Paul,

I can't thank you enough for your thoughtful and extremely helpful reply! What a kind offer to extend your phone number to help us! I will let him know and when he is ready he may just want to do that We are still having those moments where we say, "I never would have thought" or "it doesn't seem real" Some nights, like last, we wake up crunching numbers like crazy people.

I will look for the facebook page and thanks for the invite! So glad I found this place. I'm overwhelmed.....

 

Cherie

Looks like I'm in the group

Looks like I'm in the group already via Melinda, is the same one? thanks again!

Deathorglory

Some Things to Consider

Hello,

 

My doctors were very upfront & informative wth me about what would be happening and what types of things I could expect.  That was very helpful to me because I'm the type who wants to know everything.  Don't sugarcoat it or "protect" me.  I started out Stage III in 2008 and did chemo/radiation in advance of surgery.  One thing I found out was that the chemo dose WITH radiation is significantly lower than the dose when done by itself.  The dose with radiation is used to "activate the radiation", meaniing that it makes it more lethal to the cancer.  I also received chemo (the same stuff, but full strength) after surgery.  The side effects were quite different each time.  For example, I lost my hair when it was full strength, but nothing when it was with the radiation.  There were other differences, but one thing you should be aware of is that what happened to me will not necessarily be what happens to you.  Everyone has their own individual experience.  Talk extensively with your doctors and find out if your experience is within expectations and if side effects can be managed effectively.  For example, I never experienced any nausea, but I was also on a ton of anti-nausea medications.  I just assume they cut it off at the pass and I was fortunate enough to never have to deal with it.

 

The surgery is a major big deal.  I seriously underestimated how major it was.  Going in in the best possible physical shape is a wise idea.  Anything you can do to improve physical conditioning will be time well spent.  Also, after surgery they will get you up & out of bed long before you think you're ready.  Do it.  Do it twice as much as they suggest, if you can.  The coughing they tell you to do with a "hug pillow" is excruciatingly painful (at least it was for me).  Again, do it.  Do it more than they tell you to.  These things are to help your lungs ward off pneumonia.  You do NOT want pneumonia.  Recovering from the surgery took a good deal longer than I expected.  I started out getting an MIE, but previous surgical scarring made that impossible, so I wound up getting the standard Ivor-Lewis.  It took 9-10 hours, two surgeons and eleven holes I didn't have when I started.  I was unable to lie down for months afterwards.  I was expecting to be out of work for a couple of weeks.  I was out a couple of months and my doctors still thought I was rushing things.

 

I'm trying not to repeat from the excellent list above, so I'll mention an important thing that isn't an expectation, but something that can help guide you through your journey.  This is YOUR journey.  You need to find what works for you guys, not what worked for me or anyone else, not what works for others in your lives; find what works for YOU and do that.  This is life and death stuff and you can't base your treatment around someone on the internet with an anecdotal account of something they believe was important to them; you can't base your life & death decision making around what Aunt Sally would do if it was her.  Don't feel guilty if you opt for a different direction than some guy at work would choose.  Guy at Work doesn't have to live with your choices, you do. Each person going through EC has a different journey.  There isn't a one-size -fits-all approach.  There are constantly new & improved ideas for treatment.  Most of the stuff you can Google is either outdated or anecdotal.  You have to have good doctors and communicate freely with them to get up to the minute information.

 

Now, after telling you that you can't base your treatment around someone on the internet with an anecdotal account of something they believe was important to them, I will also tell you to ask your doctors about HER2-NEU.  Far too many doctors overlook this and it can be an absolute game changer as far as treatment and outcomes go.

 

Wishing you the best,

 

Ed

Cherbear15

Deathorglory said:

Some Things to Consider

Hello,

 

My doctors were very upfront & informative wth me about what would be happening and what types of things I could expect.  That was very helpful to me because I'm the type who wants to know everything.  Don't sugarcoat it or "protect" me.  I started out Stage III in 2008 and did chemo/radiation in advance of surgery.  One thing I found out was that the chemo dose WITH radiation is significantly lower than the dose when done by itself.  The dose with radiation is used to "activate the radiation", meaniing that it makes it more lethal to the cancer.  I also received chemo (the same stuff, but full strength) after surgery.  The side effects were quite different each time.  For example, I lost my hair when it was full strength, but nothing when it was with the radiation.  There were other differences, but one thing you should be aware of is that what happened to me will not necessarily be what happens to you.  Everyone has their own individual experience.  Talk extensively with your doctors and find out if your experience is within expectations and if side effects can be managed effectively.  For example, I never experienced any nausea, but I was also on a ton of anti-nausea medications.  I just assume they cut it off at the pass and I was fortunate enough to never have to deal with it.

 

The surgery is a major big deal.  I seriously underestimated how major it was.  Going in in the best possible physical shape is a wise idea.  Anything you can do to improve physical conditioning will be time well spent.  Also, after surgery they will get you up & out of bed long before you think you're ready.  Do it.  Do it twice as much as they suggest, if you can.  The coughing they tell you to do with a "hug pillow" is excruciatingly painful (at least it was for me).  Again, do it.  Do it more than they tell you to.  These things are to help your lungs ward off pneumonia.  You do NOT want pneumonia.  Recovering from the surgery took a good deal longer than I expected.  I started out getting an MIE, but previous surgical scarring made that impossible, so I wound up getting the standard Ivor-Lewis.  It took 9-10 hours, two surgeons and eleven holes I didn't have when I started.  I was unable to lie down for months afterwards.  I was expecting to be out of work for a couple of weeks.  I was out a couple of months and my doctors still thought I was rushing things.

 

I'm trying not to repeat from the excellent list above, so I'll mention an important thing that isn't an expectation, but something that can help guide you through your journey.  This is YOUR journey.  You need to find what works for you guys, not what worked for me or anyone else, not what works for others in your lives; find what works for YOU and do that.  This is life and death stuff and you can't base your treatment around someone on the internet with an anecdotal account of something they believe was important to them; you can't base your life & death decision making around what Aunt Sally would do if it was her.  Don't feel guilty if you opt for a different direction than some guy at work would choose.  Guy at Work doesn't have to live with your choices, you do. Each person going through EC has a different journey.  There isn't a one-size -fits-all approach.  There are constantly new & improved ideas for treatment.  Most of the stuff you can Google is either outdated or anecdotal.  You have to have good doctors and communicate freely with them to get up to the minute information.

 

Now, after telling you that you can't base your treatment around someone on the internet with an anecdotal account of something they believe was important to them, I will also tell you to ask your doctors about HER2-NEU.  Far too many doctors overlook this and it can be an absolute game changer as far as treatment and outcomes go.

 

Wishing you the best,

 

Ed

Thank you!

It is so nice to have this input and feedback, i'm trully grateful! I would love for some of the doctors to communicate this way as it is SO VERY HARD for me to absorb it all as the caretaker let alone my husband the patient!

I feel like I should be bringing a pocket recorder to the appts. and when the entire "team" comes in 5-6 at at time it is very intimidating (UofC is a teaching hospital so a few were residents, nurse, etc)

That being said I still have a host of questions about the surgery (to which you've helped tremendously already) especially regarding why the Dr. chose Ivor Lewis. The only thing I can remember out of a few points he made was that it was the one they do the most of.

As far as lying down, did you create a situation where you would be propped up in bed to sleep? That is something I thought about post surgery too, how sore he would be

Regarding the HER2-NEU his pathology report states that he was tested for that but I'm confused as the immunohistochemistry says negative for overexpression +1 and the other says POSTIVE for HER2 gene amplification by FISH

I did not attend the initial oncolgist consultation which was  a HUGE mistake but I'm generating a list of questions for her and you are helping me a great deal!

 

World of Thanks

Cherie

South Side Steve

Surgery

 

Hi Cherie,

 

 

I was diagnosed in November of 2011 with adenocarcinoma at the gastro esophageal junction. I went through chemo and radiation and had the Ivor Lewis surgery in March of 2012. I was T2N1M0 Stage IIB. I recently had my 18 month post-op scan and the results came back NED (No Evidence of Disease). You will learn that NED will be your favorite three letters.

 

 

Paul and Ed did a great job of setting the stage for what you and your husband can expect through treatment and surgery. The only thing I would add is not to be surprised by weight loss as your husband goes through treatment and surgery. I lost over 30 pounds during my treatments. I’m just starting to gain a few pounds back now. 

 

 

It is a major surgery, but with determination and a good attitude, both you and your husband will be able to survive it. I’m back to doing everything I did prior to my surgery. The only real lifestyle change for me has been sleeping in an elevated position. I tried a bed wedge, but I kept sliding down and it hurt my back. I purchased an adjustable bed and have not had any problems sleeping. It was money well spent.

 

 

I would also be open to speaking to you or your husband if you have any further questions. I know it helped me to talk to people that had gone through the surgery. Just send me a message and I will give you my contact information.

 

 

Good luck.

 

Steve

 

Cherbear15

South Side Steve said:

Surgery

 

Hi Cherie,

 

 

I was diagnosed in November of 2011 with adenocarcinoma at the gastro esophageal junction. I went through chemo and radiation and had the Ivor Lewis surgery in March of 2012. I was T2N1M0 Stage IIB. I recently had my 18 month post-op scan and the results came back NED (No Evidence of Disease). You will learn that NED will be your favorite three letters.

 

 

Paul and Ed did a great job of setting the stage for what you and your husband can expect through treatment and surgery. The only thing I would add is not to be surprised by weight loss as your husband goes through treatment and surgery. I lost over 30 pounds during my treatments. I’m just starting to gain a few pounds back now. 

 

 

It is a major surgery, but with determination and a good attitude, both you and your husband will be able to survive it. I’m back to doing everything I did prior to my surgery. The only real lifestyle change for me has been sleeping in an elevated position. I tried a bed wedge, but I kept sliding down and it hurt my back. I purchased an adjustable bed and have not had any problems sleeping. It was money well spent.

 

 

I would also be open to speaking to you or your husband if you have any further questions. I know it helped me to talk to people that had gone through the surgery. Just send me a message and I will give you my contact information.

 

 

Good luck.

 

Steve

 

Many thanks Ed! Maybe as it gets closer he or I will speak to the kind people who have offered!

So very helpful!

Does the propping up at bedtime because of reflux?