Surgery or no Surgery

staceycorry

My father is about to turn 85 and has stage III EC.  We took him to MD Anderson and after 6 weeks of chemo and radiation the only thing that showed on the pet scan was inflammation behind the area of his stint.   The surgeon at MD Anderson said the cancer will return in 3 to 12 months if we do not get surgery and would kill him.  We are really struggling with this surgery.  It is so invasive and risky.  Does anyone know does this surgery really improve his odds of living longer and what impact does it have on quality of life?  Mr. Google not very positive.  Really hard decision for us.  Any help would be really appreciated.

 

Deathorglory

Hello Stacey

Hello Stacey,

When I had the surgery, I was 41.  I was very much concerned with quantity of life.  I wanted a solution that would work for decades, not months or a few years.  I actually told my doctor, "you worry about killing the cancer and I'll worry about dealing with whatever else happens."  I wanted to be as aggressive as possible to give myself the best chance of winning the fight.  Your father is in a different spot than that and I really don't know what I would do if I was 85.  This surgery isn't impossible for someone his age.  If he's otherwise strong & healthy there's a good chance it could extend his life considerably.  You guys are dealing with a quality hospital, so I'd seriously consider their recommendations.  I wish I had more to offer you, but I just don't.

Best wishes,

Ed

paul61

Personal health profile is more important than age

Hello Stacey,

I had this surgery when I was 61 and in otherwise generally good health. This is a very difficult surgery and recovery, at best, takes from six months to a year, with most people being closer to a year than six months. It sounds like your Dad may have some general health issues in addition to his age that he may need to consider.

Of course, the surgeon will have a battery of tests run prior to surgery to check heart and lung function but there needs to be a general assessment of your Dad’s overall health profile and stamina before proceeding with a surgery of this complexity.

I know of people in their 80’s who have had this surgery and done well. But if it were me, at 85 I would think about this carefully. I would definitely want more than one opinion before I proceeded, not only from a surgeon, but from an oncologist. And if I proceeded I would find a nationally known surgeon who has done MANY of these surgeries using the minimally invasive procedure.

This is a difficult decision, I wish you and your Dad the best

Best Regards,

Paul Adams

McCormick, South Carolina

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

Life may not be the party we hoped for, but while we are here we might as well dance!

 

  

GeriR

I agree with Paul that you

I agree with Paul that you should think about this carefully. My 57 year old husband had this surgery this past August.  The surgery is very extensive and life changing.  He was told after surgery that there was no evidence of disease and no lymph node involvement. However, it had already spread to the right hip and now there's a new area on the left adrenal gland. If he had known this he would not have had the surgery. This cancer is very tricky and unpredictable.  As far as the surgery, there are many risks and potential complications. At your fathers age I would consider quality of life versus potential quantity.  You asked about impact on quality. My husband spent 12 days in the hospital with chest tubes, epidural, catheter and ended up with a wound vac on abdominal incision. Tube feedings for weeks, and still has issues with eating, dumping syndrome and pain. His quality of life is diminished as a result of the surgery.  The doctors are going to push for the surgery most likely but you need to remember your dad is in control of his choice. He's the boss.  Period. I know you're in a tough spot and I'm so sorry. I will keep you, your dad and family in my prayers. 

staceycorry

GeriR said:

I agree with Paul that you

I agree with Paul that you should think about this carefully. My 57 year old husband had this surgery this past August.  The surgery is very extensive and life changing.  He was told after surgery that there was no evidence of disease and no lymph node involvement. However, it had already spread to the right hip and now there's a new area on the left adrenal gland. If he had known this he would not have had the surgery. This cancer is very tricky and unpredictable.  As far as the surgery, there are many risks and potential complications. At your fathers age I would consider quality of life versus potential quantity.  You asked about impact on quality. My husband spent 12 days in the hospital with chest tubes, epidural, catheter and ended up with a wound vac on abdominal incision. Tube feedings for weeks, and still has issues with eating, dumping syndrome and pain. His quality of life is diminished as a result of the surgery.  The doctors are going to push for the surgery most likely but you need to remember your dad is in control of his choice. He's the boss.  Period. I know you're in a tough spot and I'm so sorry. I will keep you, your dad and family in my prayers. 

How long is recovery

Geri, how long ago did your husband have the surgery?  I totally agree it is his choice.  I am just trying to gather the facts for him so he can make an educated decision.  Today we had an endoscopy and the doctor told us there is a suspicious area around the esophageal stint.  We are getting a CT scan next week to see if this has spread.  After that he will have to make a decision.  I fear the worst at this point, but pray that this will turn out alright.

 

staceycorry

paul61 said:

Personal health profile is more important than age

Hello Stacey,

I had this surgery when I was 61 and in otherwise generally good health. This is a very difficult surgery and recovery, at best, takes from six months to a year, with most people being closer to a year than six months. It sounds like your Dad may have some general health issues in addition to his age that he may need to consider.

Of course, the surgeon will have a battery of tests run prior to surgery to check heart and lung function but there needs to be a general assessment of your Dad’s overall health profile and stamina before proceeding with a surgery of this complexity.

I know of people in their 80’s who have had this surgery and done well. But if it were me, at 85 I would think about this carefully. I would definitely want more than one opinion before I proceeded, not only from a surgeon, but from an oncologist. And if I proceeded I would find a nationally known surgeon who has done MANY of these surgeries using the minimally invasive procedure.

This is a difficult decision, I wish you and your Dad the best

Best Regards,

Paul Adams

McCormick, South Carolina

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

Life may not be the party we hoped for, but while we are here we might as well dance!

 

  

Thank you.

Thank you, Paul.  I told my father about this and we are now going to talk to our surgeon.  He did a residency at Mass General and may be able to provide some advice if that is a better place to go.

 

kbdarnall

Thank you for posting details regarding "choice"

Did the surgeon really say your father's cancer would return in 3-12 months if no surgery?

My husband's radiation oncologist suggested no-surgery-option might be reasonable in his case. I am trying to gather information ASAP. He is 71 years old, Stage IIb, T3N0M0. 5 cm mass is at the GEJ. Husband is half done with chemoradiation therapy, He gets Carbo/Taxol weekly and (probably) 28 radiation treatments. Radiation doctor said he might "boost" dosage near the end and possibly add a few more treatments. This depends on Husband's ability to tolerate treatment and whether he really wants to decline surgery. 

Yesterday, we had an extra consultation with GI doctor who performed the endoscopic ultrasound. Because the mass was so large, he was "very lucky" there were no enlarged lymph nodes. CT-PET was also negative for metastatic cancer. GI doctor suggested: Radiologists tend to overestimate value of their speciality. Surgeons do the same. A surgeon is not likely to recommend no-surgery-option if the patient is clearly a candidate for "curative" resection. We should place highest value on infusion oncologist's opinion. However, a 2nd opinion from a surgeon (not doing the surgery) would be wise.

GI doctor would not perform another endoscopy BEFORE neoadjuvant therapy is done because it probably wouldn't help. The surface of the esophageal junction will have scar tissue from radiation treatment. Cancer cells could be buried deep within the scar tissue. A thoracic surgeon ordinarily performs endoscopy (immediately before surgery) to evaluate the esophagus from the inside.

Right now, we are focused on finishing treatment, maintaining good diet and exercise. The next few weeks will go quickly. We live near Los Angeles. There's more than a few good hospitals and surgeons within driving distance. I may try UCLA. Current surgeon is at Cedars Sinai.  

A few days ago, I asked the infusion oncologist to estimate Husband's chance of 5-year survival. He answered roughly 60% without surgery and 75% if he gets surgery. Perhaps this is wild speculation. But the doctor did his best to respond truthfully. Certainly he will have a better chance for long-term survival with surgery. But there is COST in terms of quality of life. The question: How much advantage? This is an unanswerable question. 

I will post more, as I learn more. 

LorettaMarshall

kbdarnall said:

Thank you for posting details regarding "choice"

Did the surgeon really say your father's cancer would return in 3-12 months if no surgery?

My husband's radiation oncologist suggested no-surgery-option might be reasonable in his case. I am trying to gather information ASAP. He is 71 years old, Stage IIb, T3N0M0. 5 cm mass is at the GEJ. Husband is half done with chemoradiation therapy, He gets Carbo/Taxol weekly and (probably) 28 radiation treatments. Radiation doctor said he might "boost" dosage near the end and possibly add a few more treatments. This depends on Husband's ability to tolerate treatment and whether he really wants to decline surgery. 

Yesterday, we had an extra consultation with GI doctor who performed the endoscopic ultrasound. Because the mass was so large, he was "very lucky" there were no enlarged lymph nodes. CT-PET was also negative for metastatic cancer. GI doctor suggested: Radiologists tend to overestimate value of their speciality. Surgeons do the same. A surgeon is not likely to recommend no-surgery-option if the patient is clearly a candidate for "curative" resection. We should place highest value on infusion oncologist's opinion. However, a 2nd opinion from a surgeon (not doing the surgery) would be wise.

GI doctor would not perform another endoscopy BEFORE neoadjuvant therapy is done because it probably wouldn't help. The surface of the esophageal junction will have scar tissue from radiation treatment. Cancer cells could be buried deep within the scar tissue. A thoracic surgeon ordinarily performs endoscopy (immediately before surgery) to evaluate the esophagus from the inside.

Right now, we are focused on finishing treatment, maintaining good diet and exercise. The next few weeks will go quickly. We live near Los Angeles. There's more than a few good hospitals and surgeons within driving distance. I may try UCLA. Current surgeon is at Cedars Sinai.  

A few days ago, I asked the infusion oncologist to estimate Husband's chance of 5-year survival. He answered roughly 60% without surgery and 75% if he gets surgery. Perhaps this is wild speculation. But the doctor did his best to respond truthfully. Certainly he will have a better chance for long-term survival with surgery. But there is COST in terms of quality of life. The question: How much advantage? This is an unanswerable question. 

I will post more, as I learn more. 

"KB"~See my answer 2 your last remarks on separate topic forum

 

Dear “Kb”

 

I’ve chosen to answer you here on a separate topic since others on the West Coast may need to know where to find an excellent Thoracic Surgeon.  There is none finer.  I have given you his credentials plus a video to see how the Ivor Lewis Minimally Esophagectomy (a totally laparoscopic procedure) is performed. There are others who will be interested in what he has to say as he performs the surgery.

 

Loretta

 

So here is my reply on a separate topic forum:  https://csn.cancer.org/node/314678

 

GeriR

Stacey, I'm sorry for the

Stacey, I'm sorry for the delay in answering your question.  My husband had surgery this past August.   We saw the Dr yesterday and my husband will start Folfox in 2 weeks for metastasis.  We're making the best of each day and each moment and being thankful for our blessings.  I hope and pray your father's scans are clean next week.  I will continue to keep you in my prayers.

Geri

kbdarnall

Lots of info to digest

My husband, 71 years old, is Stage 2b, T3N0M0, 5 cm adenocarcinoma at GE junction, diagnosed 12/6/17. Now getting 6 weekly infusions of Carbo/Taxil and 28 radiation sessions. At the initial visit, Radiation Oncologist was extremely encouraging and optimistic. He said it was possible to erradicate all of the cancer with neoadjuvant therapy alone. This got my husband hoping he might avoid surgery.  

Last week, we had an extra consultation with the GI specialist who performed Husband's endoscopic ultrasound. He said there was "no point" in doing another endoscopy to evaluate whether neoadjuvant was indeed successful. He would not be able to (visually) distinguish between cancer and scar tissue (inflammatory cells and fibrosis). He suggested we should get a 2nd surgical consultation because most of our concerns were surgical. 

Yesterday, a physician-friend called this morning to answer questions had I emailed to him over the weekend. My friend is a board certified pathologist but he also treats patients at a community clinic. Dr. P explained pros & cons of various hospitals in L.A. area. He seemed to think choice of hospital was even more important than choice of surgeon. Cedars Sinai is a private hospital and we could expect excellent continuity of care. In a university-style hospital, you can get stuck between departments. C-S would offer more “hand holding” he said. If there are complications after surgery, then we would need a strong network between local and “big city” providers. We should not be driving 1-2 hours to Los Angeles unnecessarily. He suggested, we should prepare for a marathon of treatments, not a surgical sprint. He also suggested 2^nd opinion (surgeon) referral should come from the oncologist, not me. It’s a better way to collect information. Husband's next oncology appointment is not for 10 days. But this will be soon enough. 

Yesterday afternoon, we also had a Radiation Oncologist office visit. This also helped sort things out. Doctor said the only way to determine if there is a "complete response" to neoadjuvant therapy is by taking biopsies from specimens removed by surgery. Prior to surgery, one can only guess whether the region is completely sterilized. 5 cm size (being rather large) puts my husband in a category of patients that would benefit most from surgery. 

I think the best way to measure progress is by my husband's comfort. After 3 weeks treatment, he can eat soft casseroles. He has no trouble eating crumbly things like crackers. He can swallow small pieces of soft bread but has trouble with crusts. He cannot eat large meals and gets reflux easily. Sometimes he grabs a smoothie because he is hungry and wants to get something down quickly.

Generally, the eating is much better. He is more relaxed. Today was infusion # 4. His WBCs increased slightly from last week and his energy level is better.   

Esophageal cancer requires a lot of learning. Consent to surgery is a big deal. Some doctors approach the explanation from the wrong direction. They worry about patients who go through aggressive surgery and get Stage 4 cancer regardless. Of course, we understand "curative intent" might not be curative in the long run. No one can guarantee surgery will improve my husband's long-term survival. But it makes perfect sense to remove tissue that we know (100%) was previously cancerous. Husband's clinical oncologist is providing good information. But we don't always ask the best questions.

I appreciate everybody who takes the time to write comments. Every bit of information helps. 

GeriR

kbdarnall said:

Lots of info to digest

My husband, 71 years old, is Stage 2b, T3N0M0, 5 cm adenocarcinoma at GE junction, diagnosed 12/6/17. Now getting 6 weekly infusions of Carbo/Taxil and 28 radiation sessions. At the initial visit, Radiation Oncologist was extremely encouraging and optimistic. He said it was possible to erradicate all of the cancer with neoadjuvant therapy alone. This got my husband hoping he might avoid surgery.  

Last week, we had an extra consultation with the GI specialist who performed Husband's endoscopic ultrasound. He said there was "no point" in doing another endoscopy to evaluate whether neoadjuvant was indeed successful. He would not be able to (visually) distinguish between cancer and scar tissue (inflammatory cells and fibrosis). He suggested we should get a 2nd surgical consultation because most of our concerns were surgical. 

Yesterday, a physician-friend called this morning to answer questions had I emailed to him over the weekend. My friend is a board certified pathologist but he also treats patients at a community clinic. Dr. P explained pros & cons of various hospitals in L.A. area. He seemed to think choice of hospital was even more important than choice of surgeon. Cedars Sinai is a private hospital and we could expect excellent continuity of care. In a university-style hospital, you can get stuck between departments. C-S would offer more “hand holding” he said. If there are complications after surgery, then we would need a strong network between local and “big city” providers. We should not be driving 1-2 hours to Los Angeles unnecessarily. He suggested, we should prepare for a marathon of treatments, not a surgical sprint. He also suggested 2^nd opinion (surgeon) referral should come from the oncologist, not me. It’s a better way to collect information. Husband's next oncology appointment is not for 10 days. But this will be soon enough. 

Yesterday afternoon, we also had a Radiation Oncologist office visit. This also helped sort things out. Doctor said the only way to determine if there is a "complete response" to neoadjuvant therapy is by taking biopsies from specimens removed by surgery. Prior to surgery, one can only guess whether the region is completely sterilized. 5 cm size (being rather large) puts my husband in a category of patients that would benefit most from surgery. 

I think the best way to measure progress is by my husband's comfort. After 3 weeks treatment, he can eat soft casseroles. He has no trouble eating crumbly things like crackers. He can swallow small pieces of soft bread but has trouble with crusts. He cannot eat large meals and gets reflux easily. Sometimes he grabs a smoothie because he is hungry and wants to get something down quickly.

Generally, the eating is much better. He is more relaxed. Today was infusion # 4. His WBCs increased slightly from last week and his energy level is better.   

Esophageal cancer requires a lot of learning. Consent to surgery is a big deal. Some doctors approach the explanation from the wrong direction. They worry about patients who go through aggressive surgery and get Stage 4 cancer regardless. Of course, we understand "curative intent" might not be curative in the long run. No one can guarantee surgery will improve my husband's long-term survival. But it makes perfect sense to remove tissue that we know (100%) was previously cancerous. Husband's clinical oncologist is providing good information. But we don't always ask the best questions.

I appreciate everybody who takes the time to write comments. Every bit of information helps. 

The PA at Duke did tell my

The PA at Duke did tell my husband that there are some patients who, after chemo/radiation choose to have endoscopy with biopsy every 3 months instead of having surgery.   My husband wishes he had chosen this route. We were told he had a complete response and that no lymph nodes were involved.  The surgery is a guarantee to remove cancer from the body from the specific tissue involved but not a guarantee it hasn't already spread, as we have unfortunately found out.  The physicians are focused on "cure," as this is their profession.  They don't always consider the effect on quality of life in trying to provide a cure.  I'm not trying to be negative, as I know with God all things are possible.  I'm just sharing our experience in the hopes of helping others make hard choices.  Esaphagogastrectomy is a huge deal and is life changing.   There is also recovery and finding a new normal for your life.  I pray for all who are in the decision making process to make the right choice for them and their loved ones.

staceycorry

GeriR said:

The PA at Duke did tell my

The PA at Duke did tell my husband that there are some patients who, after chemo/radiation choose to have endoscopy with biopsy every 3 months instead of having surgery.   My husband wishes he had chosen this route. We were told he had a complete response and that no lymph nodes were involved.  The surgery is a guarantee to remove cancer from the body from the specific tissue involved but not a guarantee it hasn't already spread, as we have unfortunately found out.  The physicians are focused on "cure," as this is their profession.  They don't always consider the effect on quality of life in trying to provide a cure.  I'm not trying to be negative, as I know with God all things are possible.  I'm just sharing our experience in the hopes of helping others make hard choices.  Esaphagogastrectomy is a huge deal and is life changing.   There is also recovery and finding a new normal for your life.  I pray for all who are in the decision making process to make the right choice for them and their loved ones.

Good news at least for now

My father just had the stent removed and the doctor ran all the tests.  He has no cancer at the moment, his quality of life is a lot better and he is starting to eat again.  I do not know if this is forever, but will take it for now.  I read your post GeriR and it really impacted me.  I am so sorry that you and your husband are going through this.  That was one of my biggest fears.  My father and I have been over the surgery option and after reading the posts I shared your experience with him.  He said he would rather live a short period of time then have the surgery.  Just too hard on him.  We know the odds are not great.  Thank you so much for sharing your experience and I am so sorry that the cancer came back.  I pray that your husband gets better. 

Mtngirl7533

Surgery

My husband is diagnosed with Esophageal camcer, Adenocarcinoma, T3N1M0! He completed chemo and radiation 1st week of January! He is 51 yrs old! He is scheduled for esophagogastrectomy March 5th! I was praying he would get a second opinion and we could find a doc that does MIE! The surgeon we have does perform these but states that his tumor is too large to do this type of surgery! I hold reservations about this but my husband insists on going with this surgeon and having it done! It will be a difficult road ahead to say the least as he is having Ivor Lewis, open thoracic! My suggestion for anyone with this type of cancer would be to get a second opinion and find a good hospital/ center! My husband thinks he’s Superman! He is a hard working power lineman and strong but he forgets he’s still only human! Sending my prayers to all affected by this cancer or any cancer! 

GeriR

Stacey thank you for your

Stacey thank you for your well wishes. My husband will have his second round of Folfox Monday. He tolerated the first treatment pretty well. Had some diarrhea and nausea but overall did ok. He has commented more than once how he wishes he hadn't had the surgery. It's been a tough time. If you'd like to private message me I'd be glad to keep in touch and offer support. I hope your dad is feeling ok and doing well. I will keep you both in my prayers  

Geri