Depression after esophagectomy??

Dear “Fightingon”

Several years ago, a daughter wrote us on this same site and for the same reason.  She sent us a private letter and said, “Can you visit my dad?”  She knew that we lived in Virginia Beach, VA and her dad lived about 45 miles away in Yorktown, VA.  She said, “He is depressed.”

He had already been to the University of Pittsburgh and had a successful Ivor Lewis Minimally Invasive Esophagectomy performed by Dr. James D. Luketich.  But we really didn’t know that until we actually met him in person.  His daughter met us there at her father’s home.  When we went through the door, her father looked at my husband and said, “YOU WERE MY FIRST RAY OF HOPE!  He had made the trip on his own and had the same surgery that my husband had.  My husband and he were both diagnosed as Stage III EC.

So why was he depressed?  He was losing weight.  Little did he realize that there is a natural progression in the recovery process and losing weight is natural.  The new gastric conduit will hold very little at one sitting.  So for him, it was a matter of not knowing really what to expect after the surgery, and how long it would take him to return to normal.  We were happy to meet with him and we became good friends.  What we would come to know after a short chat was that he and my elder brother were in a similar business at a local shipyard.  They had actually contracted to do business with one another.  So from that day forward, we bonded.  Once he realized that it would be at least 3 months to regain full energy and become accustomed to a new way of eating, he was no longer depressed.

So I believe that all EC patients benefit by having someone to “lean on” and that they need to be fully informed as to what adjusting to a “new normal” consists of.  Feeling alone and wondering “what next?” is normal.  That’s why it is good to talk to “veterans” who have already been where you are now.

Now I read your other post here, https://csn.cancer.org/node/316959

May I make a suggestion?  Please be careful whom you listen to and take advice from.  Sometimes people speak out of turn as to what they will do and they haven’t even had the surgery—just a diagnosis.  It’s best to consider the experiences of those who have “been there—done that!”  That said, I would say that I see that your husband had one positive node found during his surgery.  You wrote this on the 15^th of July and said that you would know next Friday whether or not your husband’s doctors would recommend post-op chemo.  So that means that by July 20^th, you would know about post-op chemo.

Currently, I am corresponding with a wife who has written extensively here in the last few months.  Her husband had Stage III EC.  First of all, her husband refused a SECOND opinion.  He chose to stay with a surgeon who performed the most invasive Esophagectomy, the Transthoracic (TTE) aka OPEN surgery.  Then after the surgery, there was a positive node, but the doctors advised that they would NOT recommend “adjuvant” (post-op) chemo.  And sad to say, they took the doctor’s advice and did not treat the positive node, even though I had said, “If this were my husband, I would NEVER settle for not treating any nodes that tested positive for residual cancer.  (I was speaking as a caregiver to my husband and a Stage IV cancer patient myself.) But being “newbies” they just went with the doctor’s advice.  Now “we’re talking 4 mets since March of this year”.  He is now Stage IV.   It is a heartbreak.

May I say that this is not the first person that chose to not treat the residual cancerous node or nodes.  Cancer does not die on its own.  It spreads through the lymph nodes, the tissue and the blood.  If I could talk to you personally, I would implore you to insist on post-op chemo for your husband.  You’ve come too far to make a misstep now.

Now being a Stage IV Ovarian cancer patient myself, I know that the thoughts of having more chemo after surgery, when you’ve already had neoadjuvant (pre-op) chemo can be depressing in itself.  And with cancer, there are no guarantees as we all know.  But the safest bet is to do whatever it takes to ensure the best outcome.  And to be truthful, recurrence is always a possibility, but there are stories of EC success without recurrence.  Paul61 is a good example of success.  He knows how difficult it was to have post-op chemo soon after his OPEN Esophagectomy.  But he will tell you it was worth it.

And on another note, we know that Dr. Luketich always recommends post-op chemo if there is residual cancer found in any lymph nodes that are removed for pathology.  That is the best option!  Without it, the cancer will continue to spread of that one can be certain, why else would it be recommended?

So all in all, I would say it is quite natural for your husband to feel depressed after what he has endured.  And if indeed the doctors have recommended more chemo, your husband is naturally feeling quite low.  Having post-op chemo and recovering and adjusting to a new way of life is a tall order.  He may think it isn’t worth it, but it is.  Like I say, “you’ve come too far to turn back now!” 

We all know the anxieties that we cancer families go through.  Being a caregiver to my husband when he was diagnosed back in 2002 changed our lives but we are so happy to still have my husband still cancer free here in July of 2018.  Having been diagnosed with Stage IV Peritoneal Cancer/Ovarian Cancer Stage IV in November of 2012 now lets me know what it’s like to have a terminal cancer.  So believe me, I speak from experience. 

Now you mentioned that next Friday, that being the 20^th by my calculation, you would learn if your husband’s doctors will recommend post-op chemo treatment.  I am surely hoping that the doctors have said “YES” you need to have this node treated.  Now we all know that this is a bit of “depressing” news in itself, in addition to having to acclimate to a new way of eating and sleeping.  After all, I remember my husband saying he felt like he had been run over by a MACK truck right after his surgery.  But by Day 5, he was feeling so much better and Dr. Luketich discharged him.  Believe it or not, my husband and I rode the bus to downtown Pittsburgh on Day 8 to go shopping.  Now you know whose idea that was—mine of course.  We needed to celebrate.  But he went through the normal adjustment period that all EC patients must go through after their surgery.

Now on another note, you say that your husband is coughing a lot.  I will say that after Week 2 out from my husband’s discharge, he began to clear his throat a lot and had a cough as though something was in his throat.  So on our follow-up visit, Dr. Luketich explained that this was a common occurrence.  He said that the “anastomosis” (place where two organs are rejoined) that a small ridge of scar tissue often forms.  He used a “cup and saucer” for an example.  The saucer would be the tiny ridge that had formed around the sutured area.  He went on to say that a tiny speck of food could lodge there, and that saliva might lie around the edge as well.  He said, “You need a dilatation.”  This was a mild stretching of that area.  It was done on an outpatient basis.  My husband only had two of these dilatations (sometimes aka dilations) in the first 6 months and has not needed anything since.  So this may be what your husband has to eliminate the cough you speak of.  I would mention it to the surgeon.

I’ve often used the analogy of the childhood game I used to play.  Those of us who are older will remember “PIN THE TAIL ON THE DONKEY!”  First you’re blindfolded, and given a paper tail with a thumbtack in the end of it.  A big piece of paper with a donkey’s picture on it is tacked on the wall.  You’re “spun around” for several turns and then told to “pin the tail on the donkey!”  Most of the time everyone in the room is laughing as you are groping trying to find the wall, then even better, you’re supposed to “pin the tail on the donkey.”  When your blindfold is removed, you can see most of the time, you were nowhere near the tail.  (Only one exception—none of us laughed when we heard the words, “You have cancer” or “Your husband has cancer.”—quite the opposite! 

Now in reality, my husband and I have 20/20 hindsight, but going forward, we had to put a lot of faith in our physicians because we had no idea of what was going to happen.  And yes, let’s be truthful, after we heard the word cancer, the word DEATH with a big question mark ? flashed across our mind.  Who hasn’t been there?  But in time we were able to learn more about Esophageal Cancer.  One thing we vowed was that “if we lived through this, we would certainly try to help others find their way.  That is why we say, “We’re just two beggars trying to tell another beggar where to find a piece of bread.

So we will pray that your husband’s depression will lessen as he becomes more familiar with “what’s next?”  But for the time being, most often a lack of understanding and wondering about the future is certainly a cause for anxiety.  We believe this will improve and that in time you will be able to breathe a sigh of relief.  If there is an Esophageal Cancer Support group where you live, that would be a good place to make friends and learn from others.  Your writings show that you have a good attitude, and though there are times when you wonder just how long will this go on, keep fighting on! 

Sincere best wishes,

Loretta (William’s wife)

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DON’T  QUIT

When things go wrong, as they sometimes will,

When the road you’re trudging seems all uphill,

When the funds are low and the debts are high,

And you want to smile, but you have to sigh,

When care is pressing you down a bit,

Rest, if you must—but don’t you quit.

Life is erratic with its twists and turns,

As everyone of us sometimes learns,

And many a failure turns about

When he might have won had he stuck it out;

Don’t give up, though the pace seems slow—

You might succeed with another blow.

Often the goal is nearer than

It seems to a faint and faltering man,

Often the struggler has given up

When he learned too late, when the night slipped down,

How close he was to the golden crown.

Success is failure turned inside out—

The silver tint of the clouds of doubt—

And you never can tell how close you are,

It may be near when it seems afar;

So stick to the fight when you’re hardest hit—

It’s when things seem worst that you mustn’t quit.”

Anonymous