2 years of remission, now plueral effusion- anyone been here

Mrs.Mack

Update

So dad has been NED since his surgery 2014 i say NED but it's been based on physical exams nothing else. We have had a great time since then we've added two (the first and only two)new grand babies. One mine, a year old almost and the other my brothers, 16 months old. Dad went back to work asap, and encountered two hernias (2014& last month). He's been otherwise healthy. Learning to eat and staying hydrated has been his challenge along with sleep. He has some forgetfulness and anxiety. But over all doing well. His cough that he's had since is esophagectomy has increased. Since his surgery e has not had any scans. We pushed and pushed and 3 months ago got a CT scan. (Dad was anxious and angry at why he hadn't gotten one at his one year like they told us at the beginning of all this). This scan showed a "soft tissue density or neoplasm" at the junction where he was anastamosed. so we followed up this week with another CT that shows no change in the density and the tumor board says they don't believe it's cancerous! I addressed dads increasing cough and they re reviewed the CT to find his left lung has a pulmonary effusion- the entire lung- and there's a nodule. Dad denies pain or sort Ness of breath!  So now we sit while he's having a thoracentisis where were told they will send the fluid to cytology to test for cancerous cells they call it malignant pleural effusion. Which means it's back and it's mets to most likely lungs. Hopefully, it's a random odd medical occurance, that we can drain and move on. 

So here we sit.... waiting again....

I pass along- this is beatable! if you get short breather or permanent one enjoy it. Don't work it away, don't plan it away. Make changes and enjoy it now and always.

Waiting to see where we go from here... 

LorettaMarshall

Mrs. Mack-Have U given thought to seeking a SECOND opinion?

 

Dear Daughter

          First off, let me say I Just thought I would check this site before going to bed, and I see your letter.  Let’s be honest, when we know enough to know “something’s not right”, but not enough to know what’s really going on, we sit on a powder keg.  A quiet panic sets in and emotions can be uncontrollable.  You have every right to be concerned because of the “volatile nature of Esophageal Cancer.”  Some will have long periods of remission, while others can have recurrence within the first year.  So there’s no “safe space” once you’ve been diagnosed with Esophageal Cancer.  Those who discover this cancer when it’s in the very early stages do normally have the best prognosis, but so far there is no absolute “cure”.  My husband William once asked his oncologist, “Should I be saying I am cured?”  The doctor replied, “I’d prefer you say you are in remission!”  So we know that remission can be sort of like an “intermission”, can it not?  There could always be more to follow, and EC survivors always have to live with that uncertainty, while at the same time happy to be alive.

          Now if your dad only had a persistent cough that he had been dealing with since surgery, it might be something quite simple that could be remedied by a dilatation.  Just two weeks after surgery, my husband began to cough and clear his throat quite often during the day.  So when we went in for his checkup he told the surgeon about it.  Dr. Luketich said that it was quite common to have a cough or persistent clearing of the throat soon after an Esophagectomy.  He explained that a slight “ridge of scar tissue” tends to build up around the anastomosis (place where the organs are rejoined).  Saliva that would normally go straight down the Esophagus sometimes lies around that little ridge.  Food could get stuck there as well.  So he performed a dilatation (or dilation) of the new gastric conduit and it cleared up the cough.  Then my husband had one more during the first 6 months post surgery.  After that no more were needed.  My husband hasn’t had the problems your dad is experiencing, so we can’t speak to that.  Perhaps someone here will be able to shed more light on that.  But we do know that EC patients need a lot of close monitoring especially in the first years after surgery. 

          Your dad has every right to be upset over the long interval between checkups.  You will learn from this experience that you have to be your own “advocate” and persist when you think something should be done.   When my husband had his surgery, he was followed up at first weekly for a time, then bi-weekly, then monthly, then every 3 months, then every 6 months. After year 2, he went to “yearly visits.   He had his first PET/CT scan at 6 months, and then again at the end of Year One.  After that he had a repeat PET/CT Scan every year.  He still goes to the Oncologist every 6 months, and has a yearly PET/CT scan.  We are now entering his 14^th year of surviving Stage III, T3N1M0.  We really mean it when we say, we thank God for letting us have these additional years together. 

          Your dad should have been monitored much more closely.  It’s true of so many things, that “efficiency” is not what it used to be.  The doctor-patient relationship is not always what it should be.  You were wise to ask them to recheck the CT scan.  Why wasn’t this pulmonary effusion and nodule noted on the scan report?  It just might be that a well-trained eye saw things that a novice missed.  That’s why second opinions are important.  If this were me, I would want to seek a SECOND opinion as to what exactly could be done.  I’m less than pleased with what you’ve told us about Dad’s follow up since surgery.  If they have been this nonchalant up till now, perhaps you could find another medical team with a better relationship.

          Now about those little ones that have just arrived on Planet Earth—I can tell you that I bet your Dad loves them as much as he loves you.  When he gazes into their eyes and holds them close, he is no doubt praying he will live to see them grow up.  Just like there is a special kind of love parents have for their own children, there’s a special place in our hearts “reserved” for our grandchildren.  That’s a special kind of love—something that you won’t experience until you have grandchildren.  We get to “grow up all over again” as we watch them grow.  And I know you want your dad to be around to watch them grow up and he certainly wants that as well.  You need each other.

           Family is so important.  Life is precious but oh so uncertain.  Most of us will admit to not appreciating life to its fullest until we’ve faced the possibility of having it cut short.  How many of us really stop to smell the roses?  And in a sense, our life is like a rose.  We begin as a beautiful rosebud with dew dripping from its petals.  In time the rose begins to open up, and as we go through life, one by one, the petals begin to fall, and the years pass all too quickly.  When tragedy strikes as it often does, in retrospect we find ourselves reassessing our lives, and wishing we had stopped to smell more roses.  And I know it is your prayer that God would let your Dad live to enjoy those two new rosebuds that have just blossomed in your family.  That’s our prayer for you.

Sincerely,

Loretta

Wife of William, EC T3N1M0, Minimally Invasive Esophagectomy, May 17, 2003 by Dr. James D. Luketich @ University of Pittsburgh Medical Center