Waiting for results

Dear Mountain Girl:

If you were born in the mountains, even if you move to the bright lights of the city, memories of those hills remain with you forever.  I say, it's having the best of both worlds to have been born in the mountains before coming to the big city!  So not sure if you really are a mountain girl, or if you just love to visit the mountains, but I like your name. 

You’ve come to a good link for information about Esophageal Cancer, if that is indeed the diagnosis indicated by the Endoscopy.   And I must say that what you say about the Endoscopy is alarming.  And as for you, I would definitely ask the gastroenterologist to conduct an Endoscopy for you also.  GERD can ultimately turn into something much worse, as I’m sure you are well aware.  So for now, we will just wait to hear further from you. 

Increasing the dosage of some type of omeprazole is not always a “fix-it” solution.  But we will wait for further word from you.  In any event, you will certainly want to have a SECOND opinion, if the endoscopy results show cancer.  Truly, this is a scary time for both of you.  However, there are plenty of us here who know about anxiety and bad times. We never want to say “welcome” to another cancer patient, but if such is your husband’s case, many of us here will help if we can.

Prayerfully,

Loretta

Hello again -

Thank you so much for letting us know.  I cannot begin to share with you what I have learned from our own experience with Esophageal Cancer tonight.  I'm usually writing in "booklet form" with lots of references.  So I will just tell you that you absolutely need to have a SECOND OPINION at a major cancer hospital where the Minimally Invasive Esophagectomy is performed on a "routine" basis.  As Ed has said, this is not a cancer that you will run down to the hospital in your town and expect all will be well.  (That is unless you live near a major medical center where Esophageal Cancer is one of their “specialties!”  My own husband went to the University of Pittsburgh Medical Center.  Not that there is only one place to go, but the MIE is the laparoscopic surgery of choice.  Dr. James D. Luketich pioneered this procedure back in the mid-90s. 

Lastly, I will tell you there can be "life" after an EC diagnosis.  My husband had Stage III (T3N1M0).  His was Adenocarcinoma @ the GE junction.  It is more prevalent than the Squamous Cell type.  All 4 walls of his Esophagus had been infiltrated with the cancer and also 2 of his lymph nodes (next to the Esophagus.)  So while the stats are not good overall, if it is not Stage IV where the cancer has already spread to another major organ, there are survivors.  Even with Stage IV, there are still long-term survivors although the road is much more rocky!

And so we will talk for sure.  My husband is a miracle and is in his 15th year of survival with no recurrence.  So miracles do happen.  So I've been where you are today.  It's like you're at a critical turn in life and aren't sure which road to take.  I am not one to sugarcoat cancer and say "all will be well" because sometimes it isn't.  But just for tonight, know that I am really praying for you to make good decisions and get the best of doctors. 

I will tell you that if your husband has good insurance, you won't have to worry about the bills being paid.  So first of course, wherever you go for other treatments, be sure the insurance is going to approve whatever it is you need.   My husband and I have Anthem of Virginia as a Part D supplemental in addition to Medicare, Parts A & B.  We chose to pay more for a premium so we wouldn't have co-pays every time we turned around.  If we had to pay for all we’ve had done to the both of us, we would be absolutely “bankrupt!”  and then some.  As a kid, I used to hear my parents talk about the “poor house” as though it were a place you could go when you had nothing left to your name.  As a grown-up, I realize there is no such place as a “poor house” that will take care of you financially when you come up on hard times. 

So as understandably devastated as you are tonight, go to the mountains this weekend.  That’s exactly where we went right after my husband was diagnosed.  It was like “going back home” one more time, to see all our relatives and to reminisce about all the good memories we had together.  We never imagined that we would be here 15 years later.  So try not to “run ahead” of the doctors.  You obviously have an aggressive one that is moving quickly.  The only advice I will give you is to look to the Lord for guidance and wisdom to know what to do first. 

The mountain leaves are beautiful this year and in the western part of Virginia there are “umpteen” produce stands filled with bushels of apples, pumpkins, cabbage, etc.  at this time of the year.  There is a season for everything under the sun, and that is true of life as well.  But my husband and I have been blessed to still be together this far along in life.  I’m 78 and he is now 80.  We still have lots to be thankful for because there are still others that we meet that are “worse off than we are”.  For instance, one poor man at the oncology clinic today was being “wheeled right next to the scales” to get his weight.  It took two people to hold him up because he was so feeble.  But when he went by, I smiled at him—he returned the smile and gave me a wave.  I told my husband, “We still have so much to be thankful for.”  We got here today on our own power and no one had to hold us up!

So try to get some sleep.  That will be hard to do, but know that cancer doesn’t automatically mean “death” although that is the prevailing mindset as soon as we hear the word.  In my own case, my own diagnosis came with an automatic death sentence (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV).  BUT by the grace of God I’m still here.  And so, my prayer for you and your husband will be that you will have every test you need and have the very best doctors there are to treat Esophageal Cancer.  Lord willing, I will send you a much longer letter, outlining the usual “travel route” that Esophageal Cancer patients will most likely take.  (Depending on their stage)

Try as best you can, not to “live through the next year” when you’re at your favorite hideaway this weekend.  Oh, and one more thing, as soon as we knew for certain what my husband’s diagnosis was, we told our family and friends.  We thought it was easier for them to not be afraid to “talk about cancer” because we weren’t afraid to talk about it openly.  And one more thing, try to dismiss those who think they are doing you a favor when they tell you about someone they knew that “died”.  We had those “well-wishers” too.  They mean well, but do your homework on this particular cancer, and you will be confident that you are doing all you can do.  God has blessed our country with many good doctors and we pray you will find the very best.

Love & prayers,

Loretta (& William)

P.S.  Be sure to ask for copies of all the scans & tests as you go along. That way you won’t have to “backtrack” to find all the records when you have that 2^nd opinion.  Without going into an explanation here, just ask the doctor to be certain your husband has a HER2 test.  Some EC patients have an over-active oncogene that causes the cancer to spread more rapidly.  All cancer patients will not test positive for this, but all should have the test.  If so, there is a medication (not a chemo) that can be given (in addition to any prescribed chemo) called HERCEPTIN which helps greatly to curtail the spread of that over-expressive gene.