Squamous Cell Recurrence

clyons54

Hello -

I am new to this board.  My husband, 38, was diagnosed with Stage III EC (squamaous cell) in January 2013.  No family history, no risk factors, non-smoker and physially fit. He had a large tumor in his upper esophagus and a smaller tumor at his GI junction.  He went through 6 weeks of chemo and radiation and had his esophagectomy at Duke by Dr. D'Amico in April 2013.  He handled treatments very well and had NED at the time of surgery.  Recovery from surgery was tough but manageable.  Follow up scans were all clear until this last one in December.  Biopsy, CT scan and PET all confirm that the same cancer has returned at the anamastosis site and right supraclavicular lymph node.  He is a candidate for more radiation and will begin that treatment along with Xeloda for the next 3-5 weeks.  We are optimistic of the outcome as he has previously had good response to treatments and the cancer is localized.

I'm wondering if there are others out there who have had a similiar experience and what they can share about it?

 

Thank you.

 

Colleen

Deathorglory

Sorry to Hear

Hello Colleen,

 

Sorry to hear of your husband's recurrence.  I had a recurrence after a few NED years, but that's about it for similarities.  Mine was adenocarcinoma, not squamous cell.  Mine was also metastatic (to a lung) so I wasn't offered radiation as an option.  Initially, pallative treatment and a clinical trial was it, though they eventually put together an effective course of action.  Sounds like your husband's cancer is localized, so that radiation is a feasible plan.  Unfortunately EC has a high rate of recurrence but your husband is young and hopefully still strong.  Hopefully, his radiation and chemo will be effective.  My treatment the 2nd time was much different than the 1st time.  Surgery and radiation were off the table and the chemo was different and much more intense.  My knowledge is mostly confined to what happened with my case, so I'm not able to give you many specifics relevant to you, but I still want to offer support and well wishes.

 

Hope everything goes well this time around,

 

Ed

oriontj

Deathorglory said:

Sorry to Hear

Hello Colleen,

 

Sorry to hear of your husband's recurrence.  I had a recurrence after a few NED years, but that's about it for similarities.  Mine was adenocarcinoma, not squamous cell.  Mine was also metastatic (to a lung) so I wasn't offered radiation as an option.  Initially, pallative treatment and a clinical trial was it, though they eventually put together an effective course of action.  Sounds like your husband's cancer is localized, so that radiation is a feasible plan.  Unfortunately EC has a high rate of recurrence but your husband is young and hopefully still strong.  Hopefully, his radiation and chemo will be effective.  My treatment the 2nd time was much different than the 1st time.  Surgery and radiation were off the table and the chemo was different and much more intense.  My knowledge is mostly confined to what happened with my case, so I'm not able to give you many specifics relevant to you, but I still want to offer support and well wishes.

 

Hope everything goes well this time around,

 

Ed

My husband's  squamous came

My husband's  squamous came back.  He never had surgery. He had more chemo and the extra Chemo killed him in the end. 

bswarers

Larynx cancer

My son had his voice box removed in Nov.of 2015 ..It has been a rough road for him and his family .He had 30 rounds of radiation .He cannot speak and has lost his will to live .The cancer was stage 4 squamous cell carsnoma.. He is also an alcholic  and uses drugs  to fight his depression .I have no idea how he feels but I know how I feel and it is killing me slowly watching him kill his self .He is not married ,is 50 years old and has no where to live so I took him in  to care for him .He will not listen and I have had him committed 3 times for phsy.evalution .They keep him 24 hours and turn hime loose .He is volilent at times and thats when the law has to come get him .They wont lock him up they just take him to the hospital .I am in the process of taking him to court to get gaurdianship over him so I can put in a 30 day hospital to get him detoxed . He never stopped drinking or smoking  after his surgery .I am sure the cancer has spread to other parts of his body .I am sorry for the misspelled words .I am asking for prayers for my son .Cancer affects all of us  not just the one who has it ..  .As he has never tried to fight the cancer he feeds the cancer .

LorettaMarshall

Mom~Praying & weeping for both you and your son!

Dearest Mom –

Never mind the misspelled words.  You could have easily said, the words sorta’ ran together as the tear drops fell on them.  There is nothing more heartbreaking that to see the son you’ve raised turn to alcohol and drugs.  Now I don’t want to indict your son without knowing his lifestyle, but often alcohol and smoking are mentioned as “contributors” to the diagnosis of Squamous Cell Esophageal Cancer.  Now no one should get mad at me for saying this.  I don’t know anyone personally that has been diagnosed with Squamous Cell Esophageal Cancer. However, from the way you write, it would seem that he was wasting his life with alcohol and drugs even before this diagnosis of cancer. 

But what mom is not heartbroken when she watches a son whom she gave birth to destroy himself with drink and drugs even if he is never diagnosed with cancer?  Believe me “delivery” is not without physical pain, or at least it wasn’t for me.  But we soon get over that excruciating pain.  Would that the pain of childbirth would be all a mom had to endure. 

But we moms have big dreams for our children.  Although we see other parents' kids go astray, somehow we think, “Oh well that won’t happen to my children.”  And so you do all the right things for them.  You care about their school work, you get them involved in sports.  You take them to church, and you teach them that God loves them and wants the best for them. 

When they’re infants, you’re eager to see them take their first steps.  Then after they start to walk, and make lots of messes, you begin to wish they didn’t get around so good.  I often said after I had my first child, “If I knew how much work was involved, I would have carried him another 9 months!”  And as for the toddler years, just put up “real high and out of reach” the special antique vases, etc. that your grandma left you!  Talk about a “bull in a china shop!” 

Then comes the “potty-training” sessions.  You’re so glad when they finally learn to go to the bathroom.  (Now young ladies today have it easy when it comes to that.  All we had when my children were small was cloth diapers, and they had to be washed.  There weren’t any such thing as disposable “anything”.  And we didn’t have clothes dryers.  We hung them out in the coldest of days.  They would often freeze first and then the wind would eventually blow them dry.  But my mama would have said, “Honey at least you didn’t have to build a fire under a galvanized washtub that sat over a pile of wood outback.  And wash your clothes in hot water stirring them with a smooth stick!   White clothes went in first of course, then the colored ones last.  But I do have my mom’s old Maytag wringer washer.  So I thank God for all the modern conveniences we moms have today.) 

But back to the joys and sorrows of motherhood.  When they were infants, in my day, bottles had to be sterilized and formula had to be made.  Anyway, that was all part of childrearing.  Weaning them "off the bottle" and onto a sipper cup, was a milestone.  Then came potty training that was such a relief. 

Soon came the invention of the “wheel”.  First there was the stroller with 4 wheels of course. 

Then there was the tricycle with 3 wheels. 

Then there was the bike with 2 wheels, and everything seemed to be fine till the 4-wheel stage came along.  That’s when they want the keys to the car, and a full tank of gas.  Of course, they think it fills up automatically at the end of the night!   

You pray they will pick good friends, and then one day they bring one home that causes an invisible “red flag” to appear.  Moms usually have a unique instinct to “see and smell” trouble a brewing!  You don’t have to tell us whether your son’s drinking began before or after the cancer diagnosis.  But something leads me to believe it began long before the cancer diagnosis, but I could be wrong.  And when you watch your child for whom life held so much promise, destroy himself, it would be easy to say, “Oh God I wish I had never been born,” or “I wish I had never brought this child into the world.”  My heart breaks as I read your letter.

The alcohol and drugs are only causing him further depression.  And your heart breaks as you watch knowing you have tried everything and are still unable to do anything to help him.  He will not be able to drown his sorrows with drink and drugs, but I know absolutely it is beyond your control to change him. 

It won’t relieve your heartache to know that your story is multiplied many times over.  He is 50 years old, and God only knows how long you’ve watched your son die a “slow death.”  And every day that glimmer of hope you have for him dims a bit more.  And you are wondering how long you can keep your sanity.

Three times for psychiatric evaluations hasn’t yielded any good results.  The only thing it has done is give you maybe a couple of days’ relief.  And then somehow they can put on a good show for the docs.  So the next thing you know, they are releasing him yet again, your heart sinks, and the “daze of your life” starts all over again.  It’s a vicious cycle!  At least you knew he that he couldn’t drink while he was under evaluation.  At least you knew his location.  No doubt you grieve when he’s gone from home.  No doubt you wonder if he will get into trouble or harm himself while he is away from home because you know how distraught he is.  So rest escapes you day and night. 

Mom, when your son is violent, how do you protect yourself?  You know when they are drunk, they have lost all self-control.   When he is drinking, you are not safe.  And all too often that old song is so true, “You always hurt the one you love.”  In the song it is speaking of emotionally hurting the one you love.  But in your case, it is both.  And mom, if no one else is around but you, I would imagine you are the one often blamed for his troubles.  Or would I be wrong about that?  How often must you cry yourself to sleep at night, and when the morning comes, sorrow’s song starts playing the same old refrain yet again? 

Could it be possible that if you gain guardianship, that you could have him committed permanently to a psychiatric/hospital facility?  That would take an “act of Congress” for sure.  

This web link won’t help to ease your sorrow, it will only go to show you no matter what a parent tries to do, it is never enough sometimes.  I’m from Virginia and so I will share this sad story with you.  It happened to one of our state senators. 

https://www.washingtonpost.com/local/crime/virginia-state-senator-injured-in-home-another-person-found-dead-inside/2013/11/19/3e419ac4-512c-11e3-9fe0-fd2ca728e67c_story.html

If a son (or daughter) hasn’t asked for help, most often a parent’s most valiant efforts to help them will fail.  Being diagnosed with Stage IV cancer of any kind, lessens the options available to return to any kind of normalcy for the one involved.  Unless God performs a miracle, the cancer will continue to run its course throughout the body.  As you say, your son could very well already have cancer in another part of his body by now as well.  And I’ll just assume that he probably doesn’t want to continue seeing the doctors to keep up with the cancer’s advances.

You are so right when you say, “Cancer affects all of us--not just the one who has it.”  All of us cancer patients and family members will say “AMEN” to that. 

But most of all, you say, “I have no idea how he feels but I know how I feel and it is killing me slowly watching him kill his self.”

Mom, I’m fearful for your life.  And I’m going to pray for you and your son, but I hope that there will be some safe place that will take him and keep him before he hurts both you and him.  What can I say?  If you’re bothered enough to write here and ask for prayer, I for one will pray that you can get some kind of permanent help for your son.  Although you didn’t ask me, I fear for your own safety. 

Your heartache can’t be put into words and I know you love your son.  But at this time, he doesn’t seem to want any help, and this just becomes a vicious cycle.  God alone can help your son IF your son really wants help.  I pray that God will give you wisdom as to what to do, and may it be successful.  I hope you have some close friends with whom you can share your sorrows.  In this point of time, I would say that “Misery loves company.”  Now you don’t need any Job comforters, but just sharing your heartache and concerns with others who will help you carry your burden can be a release. 

Mom, I KNOW your heart is broken.  I absolutely will call your name in prayer.   As a believer, I find great solace even in times of sorrow, when I put my faith into practice and believe God’s promises.  In this case I feel helpless to do anything but what scripture says in Romans 12:15 (KJV) “Rejoice with them that do rejoice, and weep with them that weep.”  This is surely a “time for weeping.”  All I can say is from one mom to another mom, I’m weeping with you and weeping for your son who finds no purpose in living!

 Loretta (age 77 and ½) –

(Stage IV Peritoneal Carcinomatosis/Ovarian Cancer) and wife of William, who is now in this 14^th year of remission from “Adenocarcinoma @ the GE junction, Stage III (T3N1M0) Esophageal Cancer

P.S.  If only others (sons) would listen to those of us who have wept “along the road”.  If only they would take their mom's advice, how much sorrow they could save themselves.  Having lived 77 years now, I identify with this poem.  God has used life’s struggles to make me stronger, although I don’t recall asking for any “lessons on how to endure!”  Mom, I pray He will give you the strength to endure during this time of real heartache and heartbreak!  Yes indeed, this is "killing you" both emotionally speaking as well as physically.  Emotional distress is taking a toll on your "physical" well being also, I think you would agree.  Daily stress and sleepless nights have worn you down, of that I am certain.  Your son has no capacity to put himself in "your place".  He may think he is hurting no one but himself.  And then again, he may be so angry that he knows he is hurting others and doesn't give a "d_a_m_n".  That's what happens when alcohol takes over and common sense takes flight!

Along the Road

by Robert Browning Hamilton

I walked a mile with Pleasure;
She chattered all the way,
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow ;
And ne'er a word said she.
But oh, the things I learned from her
When Sorrow walked with me!