CarrieN~Here's my "personal" reply 2 your 8-19-17 ltr re EC recurrence now U R Stage IV!

Oh my dear Carrie ~ Your letter brings sighs of sorrow to my heart.   We’ve talked in the past.  However, I missed reading your post on June 2, this year, but I see that Ed and Paul both wrote to you.   Although quite a few read that post but I had to go back and find when you had the esophagectomy.  I knew that you wrote in March 2017 that you would be having the surgery.  Frankly this “CSN” search isn’t as “user friendly” as I would wish.    That is why I wish that each person would continue to go back to their original post and put subsequent questions there.  It makes it easier for me.  And most often, people only “sign” in and don’t post anything on their “about me” page that gives me a better understanding of their plight.  I say that for anyone who might write here in the future.  “Would you be so kind as to answer a few questions on the “about me” page that would give us a clue as to how long you’ve been wrestling with this demon, be it Barrett’s Esophagus, Hiatal hernia, acid reflux, persistent Heartburn, Esophageal Cancer or whatever?  

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            So this what you wrote about on June 2^nd, 2017.  https://csn.cancer.org/node/309998

 “Hi, I just had my first follow-up pet-ct scan post my esophagectomy. They found several new and and enlarging pulmonary nodules. All are small right now. My Dr. is presenting it to the board for a decision on whether to do a biopsy or just keep and eye on it. He said it is very possible that it is not metastases and not too loose sleep over it (yeah right). Has anyone ever experienced this and if so, what was your outcome? 

Before commenting on this letter, I will say that am I ever sorry I missed reading your June 2^nd post.  I would have never settled for “just watching it.”  I would have insisted on a “biopsy” especially since there were “several nodules”.  Sometimes something will show up on a scan that is “small”, but “several new and enlarging pulmonary nodules” would have kept me up all night.  Yes, you bet I would have “lost some sleep”! 

I would have said, “Can we do a biopsy?  What if they are cancerous?”  But Carrie, all of us start out as “newbies” and know little about our cancers.  We “rely” on the doctors to “know more than we do.”  But I quickly learned that if I didn’t do my own research, the doctors were not going to “spoon feed” me.  As newbies, we didn’t even know how to spell “Esophageal”, much less know what questions to ask.  But since the day I asked the Gastroenterologist “How do you spell Esophageal?” it has been my desire to know more and to share with others just coming on board, the things that we have learned along the way.  These are “lessons” in a “school of hurt” that I never dreamed I would be enrolled in!

Now Carrie, I’m dismayed that the doctors did NOT act aggressively and try to determine what the presence of these pulmonary nodules could mean.  Obviously, they were just “guessing” but with their experience, they no doubt knew that “metastasis” was a possibility.  Now I must say that this gives more credence to the USNews&World Health report that at MDA in Houston, Gastric cancers were not one of their major specialties.   And now that I read what they told you, I am angry that this is what you were told.  You mustn’t blame yourself, but then we’re often prone to do that.  What do we say, “Hindsight is always 20/20!”  What’s done is done, but now you’ve gotten smart enough to not “just take the word of MDA”.  That brings up to the post you wrote today about the “cancers.” 

(A note here about my own Stage IV diagnosis.  I first went to my GP in November of 2012, thinking I had a hernia.  He examined me by “touch” and said, “I think it probably IS a hernia.  Do you just want to “watch it?”  And before I said a word, he said, “I can tell by the look on your face that you don’t want to watch it.”  (No not after having a husband diagnosed with EC—I’m not in favor of “watching” something!”  And so he set me up an appointment for a 2^nd opinion.  But before my appointment, I had some unusual groin pain and nausea, one weekend.  I had gone to the ER for the “small knot” I could feel right below my waistline.   The ER folks asked, “Why are you here?”  I said, “I think I have a hernia.”  Two hours later a CT scan revealed something quite different.  It said, “Peritoneal Carcinomatosis!” WHAT???  This was a stage IV diagnosis before I went to UPMC for my 2^nd opinion, exploratory surgery, and a PET scan. So within a 3-week span, I had had two opinions, and the second one revealed even more than the first one.  That gives credence to what Mayo Clinic said about only 12% of First opinions were completely correct.

Now I know that Ed who writes here as “DeathorGlory” has had a long run since his recurrence years ago now.  He is faithful to answer and encourage others to not give up when they hear the word “recurrence.” I know we have another EC patient, “JoelC” which has had a recurrence.  As far as I know, Joel is still with us.  He posts occasionally.   Now I know that you did have an Esophagectomy at the end of March of this year.  As a Stage III EC, 38-year old mom, naturally that is what you should do.  By the way, did you have a MIE?  It’s only been 5 months since your surgery, and dealing with adjusting to a “new normal” is difficult in itself.  But now we “fast forward” to an even bigger adjustment.  A Stage IV diagnosis! 

Now I know we can be honest with one another Carrie.  I like your attitude.  You will deal with it because you have too much to lose if you drown yourself in self-pity.  I see that you’re determined to find the best answer possible to this dilemma.  Even though these lung nodules have tested positive, there is the possibility that further spread might be “warded off –knocked back for quite a long time” with some strong adjuvant (post-op) chemo treatments. We all groan when even thinking of the possibility of “more chemo!” Uuuggghhhh!  There are worse things “waiting in the wings for me as well, but I’m putting them off presently.  Anything I agree to do in the future will not be as effective as my past treatments.  Right now my quality of life is too good to interrupt it and start down another route with no “road signs” along the way.

My oncologist sometimes uses only a CT scan, but sometimes he orders a PET/CT scan.  A combination scan was performed back in June of this year for my husband who was diagnosed with EC, Stage III (T3N1M0) back in 2002.  He had a successful MIE surgery.  Since then he has had numerous follow-ups and scans.  So far the results have been “no evidence of disease (NED).”

So let’s keep hope alive from that standpoint.  Look at how long Ed has lived even after his recurrence, even though it has not been trouble free.   Perhaps some aggressive chemo or clinical trial could provide a longer period of “progression-free survival” (PFS).  That is the name of the game for Stage IVs short of a miraculous healing.  Now our omnipotent God could direct all of us down a path to being cancer free, but that is known only to Him.  A “roller-coaster” ride as a child was thrilling, but as an adult the EC roller coaster isn’t a “thrill a minute!”  There really aren’t any guarantees in a cancer treatment that I can think of.  However we Stage IVs hope to experience a long period of “Progression Free Survival (PFS). 

As evidenced by MDA’s reputation for accuracy in your case thus far, they would not be MY first choice for a clinical trial.  Numerous hospitals are conducting clinical trials.  The purpose of a clinical trial is to see if there are less toxic chemo combos that will have as good, or better, results than the traditional treatments that have already been approved by the FDA. 

By now most people that read what I have to say know that I speak from the heart, but also very plainly.  We have to face life in the moment, even when things seem dark, dreary and hopeless.  At the same time, we have to explore all possibilities and “keep our heads about us at the same time.”  As for me, I’m not counting on a “cure”.  My oncologist told me only a couple of weeks ago, we NEVER use the word “cure” for our EC patients.   I remember my husband asking years ago now, “Should I be saying I’m cured?”  He said, “I’d prefer you say that you are in REMISSION.”  We say that because there is always a possibility of recurrence.  Meanwhile, we aren’t letting that possibility crowd out enjoying the quality of life we enjoy today.  It may recur, but then again my husband may die of some other cause, and never have a recurrence.  

 Yes, in all honesty, many do have a recurrence.  But I sincerely believe that if a person has been properly diagnosed as a Stage III, or a lower stage, the best chance for longevity is to have the surgery.  Clinical trials have proven that the tri-modal approach that includes chemo/radiation/surgery offers the best outcome.  The least invasive of all esophagectomies is the “Ivor Lewis Minimally Invasive Esophagectomy” (MIE).  I would only want to go for a 2^nd opinion to one of the major medical facilities that are known for their successes in this particular type of surgery.  Houston Methodist performs MIEs.  Even then some hospitals are better than others, so a larger hospital will have more patients, and more experience in dealing with difficult cases.

In that regard in past conversations, I remember talking with Dr. Luketich and discussing some of the cases we had read about here on line.  We asked why one might have so many dilations, and have difficulty swallowing even after the surgery.  You mention you are having a problem.

In one case, a person was having difficulty in swallowing and was having “repeated-repeated-repeated” dilitations.  I remember Dr. Luketich saying that it is critical that when performing an esophagectomy, that the “new gastric conduit” NOT BE TWISTED” at the point of anastomosis.  (The point at which the two organs are rejoined.)  That is sometimes a problem.  He said that he often has patients come to him for “repairs” because of this problem.)

Now a “twisted conduit” isn’t the same as a tiny ridge of scar tissue that sometimes builds up around the anastomosis.  A dilatation (aka dilation) helps with that.  The two conditions are entirely separate entities.  My husband had two dilations, the first one about 3 weeks after his surgery, and then one more during the first 6 months.  Since then there has never been a problem.  He didn’t have trouble swallowing, he just kept clearing his throat and had a cough.  As soon as he explained that to Dr. Luketich, we were told that this is not uncommon soon after surgery because of the scar tissue factor. 

As I say, there’s no way to tell whether or not the cancer will return, but no one should forego an esophagectomy if they qualify for one, just because there is a possibility that it might come back.  I’ll take the gamble any day!

And in my own case, having presented with a Stage IV diagnosis (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) right out of the gate back in November of 2012, had I not been aggressive and taken a chance on life, I would not be writing here today. So even though the Stage IV road is a treacherous one, if there are measures that can be taken that hold a good possibility of having some quality of life afterward, then I will take that chance.  And it is a “CHANCE”.  There are no guarantees.  And I will tell you that I almost died with my very first chemo treatment because I had a severe reaction two minutes after the first infusion began.  But it was not my time to leave this earth.  And during the first week after my Cytoreductive surgery (CRS) I said to myself, “Am I going to live or die?”  I knew this surgery to remove all “non-essential” organs was my best chance at longevity, yet I wondered if I were going to “make it” out of the hospital.  In fact I was there for 42 days because of an infection and my incision from between my breast to the pubic area breaking open!  What a nightmare?   

Speaking of a nightmare, at the first I was only allowed ice cubes till my bowels “woke up”.  It was difficult for me to even get out of the bed to go to the bathroom.  But what to my wondering eyes should appear, but a middle-aged man walking into my room in only his underwear!  He was sleepwalking.  He came through the door and started putting his hands on the wall as he walked further and further into my room.  He didn’t make it all the way around to my bed before the nurses rushed into the room and grabbed him.  Fortunately, the nurses’ station was right outside my room!  But I lay there helpless and in shock thinking, “What am I going to do?  Yes, pushing my “help button” should have been my first thought, but I was so distracted by his entry that I sorta’ froze for a moment.  Now I do have a loud voice, and I’m sure I would have “screamed” had he actually came farther, but there was a table, and a TV that he would have to pass by before he could get to my bed.  So far he was using the “hands-on-the wall navigational system.”  He was also “feeling along the wall and looking at the wall. Just thought I would throw that in here for a bit of humor. 

There were some pleasurable experiences along the way.  For one, there was a caring respiratory nurse, who came in on her day off, and visited rooms and sang to the patients.  She asked what I would like to hear.  I told her, “A Bridge Over Troubled Waters.”  She didn’t have that piece of music with her but came back on a different day and sang it just for me.  Reliance on the Lord coupled with some good doctors, and caring and praying family and friends have been a dependable “bridge” for me.  Now I must admit I have memories of a “swinging bridge” in a little town of Bassett, VA where I used to live as a child.  So along the way, for me and my husband as well, there have been times when we felt like we were on a “swinging bridge” that spanned a rushing river below.  Yes, I had to hold onto both sides to get across to go to the school that was on the other side.  So no matter where you are on the bridge, grasp tightly to both sides as your weave your way across!

One of those times I found myself on the bridge, and wasn’t sure I could make it across.  I remember calling a nurse into my room at 2:00 A.M. in the morning, and asking her to look in my bedside table, and read some Bible verses to me that I had brought with me.  I won’t put them all here but they were special verses that spoke to me deep in my soul.  I had read them often at home during my chemotherapy treatment.  They were promises that I clung to, and still do, knowing that actually I wasn’t in control of this situation, but my Lord was.  The nurse spent at least half an hour with me.  We discussed my condition and she shared some times in her life when she put her trust in the Lord when things seemed hopeless.  Thank God that she was a caring and understanding nurse.  I needed to renew my faith and trust that God had not “forgotten” me.  And I say, even to this day, that God expects me to avail myself of all the things he has “gifted” doctors with down here on earth.  He doesn’t expect me to try to figure out the future.  He’s the only one that knows what “tomorrow” holds.   (I had only one that was not.  I asked that she no longer come into my room!  And when writing evaluations of the service there, I wrote quite a write-up that I hope went into her record.)

And Carrie—one other thought—yes do keep in your feeding tube (J-tube) obviously.  I trust you still have your port in, if not you certainly should.  Repeated “sticks” looking for a good vein can be a problem.

“Mayo Clinic says get a second opinion – first ones are frequently wrong

by Melissa Turtinen ---April 4, 2017 12:17 pm

 If you’re diagnosed with an illness, you might want to get a second opinion.

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

• Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
• In 21 percent of cases, the diagnosis was changed completely.
• In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

How to ask for a second opinion

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

Here are some tips about seeking a second opinion:

– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.

– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

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