What to do...

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What to do...

by Pmilner on Fri Jul 13, 2018 01:09 AM

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My 75-year-old husband was diagnosed with stage 3 adinocarcinoma (esophageal cancer) in April of this year. We went through five weeks of chemo/radiation. He is now ready for surgery (esophagectomy). After reading all of the literature provided us by the thoracic surgeon, researching the statistics on the possibility of this cancer returning after going through this surgery, along with reading some of the posts on this site, we’re not sure whether to have this surgery, or live the next couple of years to the fullest until the cancer gets the best of him, basically. My question to all of you is: If you had to do it over, would you still have the surgery, OR do you wish you’d never gone through with it? Please, no criticism or harsh words. I’m so stressed right now, that it wouldn’t take much to completely tip me over the edge. I just want some more input to help us decide what to do. I don’t want him to have this surgery if he’s going to be so miserable that he has no quality of life. I hope that many of you respond to this. Thankyou so much!

RE: What to do...

by Fnixon on Sat Jul 14, 2018 01:33 AM

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On Jul 13, 2018 1:09 AM Pmilner wrote:

My 75-year-old husband was diagnosed with stage 3 adinocarcinoma (esophageal cancer) in April of this year. We went through five weeks of chemo/radiation. He is now ready for surgery (esophagectomy). After reading all of the literature provided us by the thoracic surgeon, researching the statistics on the possibility of this cancer returning after going through this surgery, along with reading some of the posts on this site, we’re not sure whether to have this surgery, or live the next couple of years to the fullest until the cancer gets the best of him, basically. My question to all of you is: If you had to do it over, would you still have the surgery, OR do you wish you’d never gone through with it? Please, no criticism or harsh words. I’m so stressed right now, that it wouldn’t take much to completely tip me over the edge. I just want some more input to help us decide what to do. I don’t want him to have this surgery if he’s going to be so miserable that he has no quality of life. I hope that many of you respond to this. Thankyou so much!

Normally they don't offer surgery unless they believe that the patient has a good chance of a total success. I was 65 when I had the surgery and I enjoy a normal life with no complications or problems. I get the impression that I am more fortunate than most. I am four years out now and so far things are clear. In my operation the bottom 2/3 of my esophagus was removed along with 1/3 of my stomach. I would not turn down the opportunity to have the surgery.

RE: What to do...

by Pmilner on Sat Jul 14, 2018 02:10 AM

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Thank you so much for giving me feedback. I can’t tell you how much I appreciate your opinions on this surgery.

RE: What to do...

by akb1972 on Sun Jul 15, 2018 08:12 PM

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On Jul 13, 2018 1:09 AM Pmilner wrote:

My 75-year-old husband was diagnosed with stage 3 adinocarcinoma (esophageal cancer) in April of this year. We went through five weeks of chemo/radiation. He is now ready for surgery (esophagectomy). After reading all of the literature provided us by the thoracic surgeon, researching the statistics on the possibility of this cancer returning after going through this surgery, along with reading some of the posts on this site, we’re not sure whether to have this surgery, or live the next couple of years to the fullest until the cancer gets the best of him, basically. My question to all of you is: If you had to do it over, would you still have the surgery, OR do you wish you’d never gone through with it? Please, no criticism or harsh words. I’m so stressed right now, that it wouldn’t take much to completely tip me over the edge. I just want some more input to help us decide what to do. I don’t want him to have this surgery if he’s going to be so miserable that he has no quality of life. I hope that many of you respond to this. Thankyou so much!

There are so many factors to consider as you're faced with this very, very difficult decision.  I discussed your post with my 47yr old husband (who underwent esophagectomy in May 2015).  Perhaps the most important of these factors to consider are your husband's emotional and physical health heading into the esophagectomy, which will influence your ability to deal with the recovery and its life-altering effects.  You are asking the right questions now because whatever decision you make, it must be with a clear conscience to guard against second-guessing your decision afterward.   None of us know whether the cancer would progress without surgery.  What is known is that surgery improves the probability of survival.  The question is what that survival is worth to you and your husband not knowing enough about his post-op quality of life.  Your husband's pre-cancer quality of life should be a factor in your decision. Was he very active and hopes to be in the future ? Are his family genetics favorable for a long life ?  Do his immediate family members live well into their late-80's or 90's ? If so, he may wish to proceed. If they live till early 80's, it may not be worth the pain and suffering of the surgery, being that it would likely only buy him an extra few years compared to not doing it.

Reasons to proceed with esophagectomy :  strong physical and emotional health with no pre-existing respiratory or other conditions;  active 75 year old with good longevity genes (ie family members have lived long livespans;  emotionally resilient (him and you !) to deal with setbacks/complications/after-effects on quality of life;  full knowledge that surgery is no panacea, and the cancer may well recur (though if pre-surgical PET/CT scan shows residual tumor after chemo/radiation, you probably have little choice but to proceed with the surgery now).  

Reasons to decline esophagectomy :  preference to live out his remaining life (however long it may be) with a relatively good quality, normal eating habits and energy level (once restored when chemo/radiation effects wear off over the next few weeks);  knowledge that while surgery will improve his survival prospects, it won't guarantee a cure.  You don't mention if the T3 staging was node-positive or not, but that factor will impact the probability of post-surgical recurrence.  If it helps inform your decision, ask the team point blank what your husband's survival prospects are if you do or if you don't proceed with the esophagectomy.  We were told 50/50 after surgery with clean margins, but everyone's case is different (even amongst T3 cases).     It may be helpful to know how much you're husband's incremental chances of survival are with or without the surgery.  If your husband's family members' life expectancies are around 80-85 years,  we would probably hesitate before undergoing esophagectomy as a 75 year old.   We're thinking about how many extra years that surgery would buy him, compared to what he would otherwise live even if he was disease-free.   It IS life-altering, even if everything goes fine.  He will never eat the same again, and he may not enjoy eating if it causes him discomfort with nausea or vomiting. He will need to sleep at a 45 degree angle and should avoid laying flat to prevent aspiration. His stamina may be impaired for years after surgery, if not forever.  Every day will be a challenge to coordinate getting enough calories from food intake, and getting enough fluids to avoid dehydration.   Your husband will not be able to eat and drink at the same time.  His thoracic stomach will be too small to accommodate both.   You may already know all of this.  I'm telling you honestly, because this is perhaps one of the most complex surgical procedures performed, and even if everything goes fine in the OR, the post-op complications can still be very serious.   If he's blessed to have no post-op complications, the permanent changes in his quality of life should not be underestimated.   It upsets my husband to know that he gets winded while walking, and he may never be able to run again. Yet, he's alive to see his children grow up, and that knowledge gives him the will to persist.  He has no regrets. 

During our treatment, we met people near 70 years of age who had an uncomplicated recovery and were travelling internationally 6 weeks post-op.   2 years later, their small meals and fatigue remain challenging, yet that 70 yr old has so much more living to do, and years to enjoy with his children and grandchildren.  He is grateful to have done it, and be alive today even if he needs to rest often and manages small amount of food intake very carefully.  We met a younger man with pulmonary complications who suffered a leak post-op, and remains reliant on a feeding tube for the past 2 years and breathing with ventilator assistance.  He would've never done the surgery had he could have foreseen what his life looks like now.   His quality of life is awful.  My husband was a marathon-running 45 yr old, and suffered terrible post-op complications. However, at his young age, he had no choice but to proceed to surgery.   To be quite frank, I'm not sure he would have done the surgery at your husband's age.  There was a lot of pain and suffering involved, multiple hospitalizations, inability to eat or drink by mouth for a long, long time post-op.   My point is that the surgery and its complications do not discriminate at different age brackets, so your husband could have a straightforward recovery.  But, if his life expectancy without cancer was say another 5-10 years, and the surgery buys him a few extra years that he might not otherwise have had without it,  then it may be worthwhile for you and him to proceed.     Or not.  That's such a personal decision.  

I wish you only the best, and full knowledge that whatever you and your husband decide to do is a deeply personal decision.  There is no right answer, and no judgement involved.  The doctors can't tell you what to do because they won't be living in your husband's post-esophagectomy 75 yr old body. 

RE: What to do...

by Fnixon on Sun Jul 15, 2018 11:25 PM

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I must say that the range of outcomes after surgery is huge. As outlined above I have been living a normal life post surgery. I sleep on a horizontal bed using a six inch wedge pillow. I take one acid pill a day and otherwise I am not impacted. I also didn't experience pain, only some discomfort while my muscles healed from the abdominal incision. I don't think long term survival is realistic without surgery and the quality of life would go down hill pretty quickly. The surgery is difficult and takes great skill. They wouldn't offer it if there was not a real advantage to having it.

RE: What to do...

by Pmilner on Mon Jul 16, 2018 10:31 PM

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Your information was exactly what I was looking for. And I appreciate you being candid with me. I don’t want anyone to sugarcoat this for me. I need straight answers here. I so appreciate the responses I have received ( especially your response). Thankyou so much for taking the time to help me.

RE: What to do...

by Melodiecare on Thu Jul 19, 2018 06:43 PM

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My husband had this surgery in March of this year. He was a very active, very healthy 65 year old when diagnosed. His response to chemo and radiation was excellent but wanted the best possible chance for a cure so he had the surgery with a very skilled surgeon. If we had known then what we know now, we never would have had the surgery. He had complications afterward that required two more surgeries and his quality of life is nowhere near what it “should” be and probably never will be. The decision is a hard one to make but I think it really depends on your specific circumstances. In our case, I am ten years younger than my husband and we have a son that was graduating college in May. There is so much of our son’s future that he would like to be a part of that he decided it was worth the risk. If you and your husband have enjoyed a long and happy life together, your children are grown and given you grandchildren to enjoy and spend time with, then you want that time to be the best it can be. If he is feeling relatively well at present, you are correct to question whether putting him (and you) through this grueling surgery and the long, long road to recovery is the right thing to do. I can’t tell you what to do but I can tell you this: it will be a very long time before he feels as good as he does today, even if the surgery goes well. I wish you both the best.

RE: What to do...

by stevenph on Fri Jul 20, 2018 01:32 AM

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I had the surgery 2 1/2 years ago at age 61. I also am fortunate that all went well. Recovery was not easy but not terrible. Probably the worst was a cough that developed the first couple of months esp. at bed time. 

Today I bicycle, play golf, sand volleyball and travel.

I am on zero medications and can eat pretty much anything I want. The one change is sleeping on a wedge pillow with about a 6 inch rise.

God Bless, good luck with your recovery!

RE: What to do...

by Pmilner on Fri Jul 20, 2018 04:54 PM

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Thankyou so much for your input. My husband opted to NOT have the surgery, and he truly seems at peace with this decision.im actually relieved he made this decision.
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