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Found out My Dad Has Esophageal Cancer

Colbs
Posts: 4
Joined: Apr 2014

We just found out today my Dad has esophageal cancer, it is squamous cell type.   They did a CT scan and looks like it has not spread.  Not sure if a CT scan can tell if it has spread to the Lymph Nodes?  They have not staged it yet.  We are thinking about checking out MD Anderson, but not sure.  I would be lying if I said I wasn't scared to death, but I am trying to stay positive.  Any advice or what we can expect looking forward?

JKGulliver
Posts: 82
Joined: Apr 2013

I remember, very well, how we felt when we got our first EC diagnosis.  I believe I speak for others on this site.  We wish  you and your family the best.  We have all been on the same journey you are now starting.  Let us help you, if we can, by sharing our experiences. 

It is the PET scan that will tell you more about the extent of the spread.  The PET uses radioactive tracers that are absorbed by your organs and tissues.  The higher the metabolism of the cells in  your organs and tissues, the more uptake of the tracers.  Cancer cells are constantly dividing, so they metabolize more than regular cells.  Cancer cells will "light up", so you can distinguish them from normal cells quite easily.  This is when your Dad will be staged. The treatment for EC depends on the stage.  It will also determine which clinical trials, if any, he is eligible to participate in.  A clinical trial is a study.  Most of these studies are nation-wide.  Within one center, not all doctors participate in the same clinical trials.  So, ask around.  The oncologist you are seeing may not be a part of a clinical trial that is of interest to you.  But someone else at the clinic may be.  You are within your rights to ask.  

MD Anderson is one of the premier cancer centers in the U.S.  It is almost always in the top 5, no matter who does the rating.  EC is very aggressive and is still relatively unusual.  You want a specialist, not a generalist.  Don't hesitate to get more than one opinion.  Stay positive and support both your Dad and your Mom.  Take it step by step, one day at a time.

All the best.

Colbs
Posts: 4
Joined: Apr 2014

Thank you.  I'm am happy that the CT scan showed it hasn't spread but still nervous  the PET scan might show more.  I am surprised it is squarmous cell because my dad hasn't smoked in probably 15 years and really never drank at least as long as I can remember.  I have read strawberries and broccoli may help.  Not sure if it will help but can't hurt.  Has anyone had any luck with fruits or other natural remedies?

I wish there was more esophageal Cancer awareness.  My dad has had trouble his whole life with acid reflux even had surgery 30 years ago, we never knew he was at risk.  Hopefully in the future there will be.  I have a heital hernia so I suffer from acid reflux, after the research about this cancer I plan to start getting checked annually.  

I am glad I found this site, reading about others that have went through this and survived gives me hope.  

glowy44
Posts: 10
Joined: Apr 2014

Colbs, I am in exactly the same boat right now with my dad.  He just had his PET scan yesterday and an abdominal ultrasound today (and will have an EUS next week).  This is definitely from a hiatal hernia/acid reflux.  We are stunned by all of this.  I had no idea until two and a half weeks ago that something that seemed like an inconvenience could be so devastating.  We are terrified.  I can't really think about anything else, to be honest.  I'll be on this site a lot, I'm sure, and hope to support you as well as we both go through this with our families. 

Colbs
Posts: 4
Joined: Apr 2014

Sorry to hear about your Dad.  I will keep you in my thoughts and prayers.  Same for me,  I really don't think about much else.  Pretty much all I do when I have free time is do research on EC.  

 I wish we could go a head just dive into treatment but know it is a process and might be a little bit.  The best thing is probably to get a couple opinions before we have anyone start on treatment. 

Colbs
Posts: 4
Joined: Apr 2014

My Dad and Mom met with a oncologist last week and he will get a PET scan this week.  Hoping and praying for good news.  The oncologist did say if local it was curable but if it was regional is wasn't and they would be prolonging his life.  That comment kind of bothered me because I have read about people who had stage 3 or 4 and are now cancer free. 

dfd24
Posts: 80
Joined: Mar 2011

hello,

when you have the operation it is in the hope of a cure. 

my husband had the operation but then a recurrence. rather than prolonging his life they term it here as a chronic disease , which changes the way you look at things even if means the same thing, that it is not a "cure". he is still getting treatment but feels good.

 

so wish you of course all the best and hope the pet scan shows it is local.

danièle

JKGulliver
Posts: 82
Joined: Apr 2013

When my husband was diagnosed with EC, alot of people gave us books and advice on diet.  Just as many people told us there was no proven science behind any of this.  We talked and thought about it alot.  Everyone has to make up their own mind, but this is what we decided.  Once you get a diagnosis of cancer and have sought out treatment, there is very little else you can do.  Although we both have careers in math and science, we found it impossible to determine the odds of survival given the miserable data available.  So, we decided that if diet could increase the odds even marginally, there was no reason why not to change it.  The change was small, it was healthy, and both our moms had told us, "you are what you eat".  We started following the anit-angiogenisis diet because it seemed consistent with what we understood to be the behavior of cancer cells.  Strawberries and broccoli are on the list.  

http://www.eattobeat.org/

We are still following this diet.  I hope this helps you.  

Jess_B
Posts: 5
Joined: May 2014

Hi Colbs,

We found out my dad has Esphogas Cancer on April 1st as well. We just got the PET scan results today and he has Stage 2 cancer. The treatment he will be getting is radition 5 days a week and chemotherapy once a week for 5 weeks. Then they will give him 6 weeks off before they perform a surgery to remove a part of his esophogas where the cancer is sitting (it's in the lower part of espohogas). We have been told the cancer has not spread. The appointment we had today was with the Radition oncologist and he gave us alot of information about the chemo and he's going to be alot sicker then I thought. My wedding is happening the "peak time" of his side effects from chemo... but it'ls okay... I just want him to get better forever. What scared us was even after all the radiation and chemo and then the surgery (2-6 months recovery time) we were told the survival rate is 50%. I am terrified! He said it has not spread, it is in an early stage and they are performing chemo and surgery ... so I don't understand why its only 50%.

I want to know what chemo is like and what my dad will be going through. Has your dad started the treatment yet? What is his treatment? Is he getting chemo? Any advice or what I can expect looking forward? What stage is our dad?

If it's too hard to talk about it I understand. I sat in my car for an hour and cried and I'm in tears writing this. I just want him to be okay.

JKGulliver
Posts: 82
Joined: Apr 2013

I don't know if this will help you, but I can say what we came to understand.  We spend a lot of time looking at data and statistics.  Cancer survival data is collected in the following manner:  from the date of diagnosis, a probability is given for surviving five years.  The first year would include the treatment period.  As far as we can tell, averages are used, not conditional probabilities.  Moreover, after five years, cancer researchers reset the clock.  Even though a return of cancer 10 years later may be, in fact, related to the original cancer event, the data is managed as though it was completely new and different.

If EC metastisizes or reoccures, after an esophajectomy, say, in the lungs or the liver, the patient does not have lung cancer or liver cancer.  Rather, the person has cancer of the esophagus, in the lung or liver.  Cancer does not spread, so much as it colonizes.  It is known to send out proteins and enzymes in advance of colonization to "prepare" an area for the future.  These preparations occure at the sub-cellular level.  In other words, it cannot be detected.  So, even if there is no evidence of spread at the time of original diagnosis, the esophagael cancer may already have colonized other locations or prepared other locations, but at a level that cannot be detected by PET or CT.  Or, it may not have.  In each individual person, there is no way to know.  

Radiation is targeted at the EC site, but chemo is systemic.  That is, it affects the whole body.  The medical assumption is that if the chemo successfully kills off X% of the cells at the cancer site, it is also killing off X% at the colonies.  In truth, this is heroic assumption.  Our current level of science does not know how to detect early colonies and does not know how chemo affects these cells.  In fact, all you need for a new tumor to grow is one cancer cell that survives treatment.  Because cancer cells, unlike normal cells, divide forever, that one cell can establish itself  opportunistically, after surgery.  That is why, even after chemo, radiation and surgery, the survival rate is 50%, at Stage 2.  (By the way, I think this is a guess, not a statistic, on the part of your Doc.)

I will throw in one more thing.  Trillions of dollars have been thrown at cancer over the past 80 years.  However, philosophically, we approach cancer reactively.  There is no preventative treatment, no medical therapies for the prevention of metastisis.  Nothing pro-active, even though the probability of reoccurance for EC is very high.  As a profession, medicine today simply waits until the cancer comes back.  If it reoccures, there is not much that can be done.  This is a pittiful approach, very high cost and a stain on the profession.  But, it is what we have.

Like your father, my husband was Stage 2 N0 M0, meaning no involvement of the lymphnodes and no sign of metastisis.  However, by the time he was half way through chemo, we understood the score.  My husband passed the one year mark about a month ago.  Honestly, we are scared every day.

dfd24
Posts: 80
Joined: Mar 2011

hello,

i really thought your explanation clear and easy to understand. 

where did you get the info that cancer colonizes rather than spreads . I always thought cancer spread through blood vessels and lymph nodes. did you read a particular book or scientific article. if so , would you be able to give references?

 

thanks a lot,

danièle

JKGulliver
Posts: 82
Joined: Apr 2013

Here are some suggestions from us, but we've come to learn that each of us has a individual research journey as well as a physical one. 

1.  The Biology Of Cancer, by Robert Weinberg, is a textbook.  It is very accessible, however.  We do not have backgrounds in molecular biology and we were able to plow through it, brute force. 

2.  We found two books to be very helpful.  The Emperor of Maladies, by Siddhartha Mukherjee and The Cancer Chronicles by George Johnson.  These are not advise books.  These books are science, non-fiction.  They are very accessible and we learned alot from them.

3.  There are two books that have nothing to do with EC, but are very enlightening to understand how the cancer industry operates:  The Immortal Life of Henrietta Lacks by Rebecca Sklott.  The other book is The Philadephia Chromosome by Jessice Wapner.  You come to realize, through these books, that cancer is a business.

4.  Getting started on statistics, I'd go to www.cancer.org.  Lots of charts and graphs there, many of survivability, as well. 

5.  www.lonza.com is a cancer research site.

6.  It is amazing how much there is on YouTube.  Just type in esophagael cancer.  We watched the whole robot assisted esophajectomy prior to my husband's surgery.  There are now videos uploaded every day on treatments, presentations, etc.

7.  The National Cancer Institute has a website:  www.cancer.gov/statistics.  This is a very deep but frustrating database.

8.  The top journals in the U.S. for cancer research are:

     a.  A Cancer Journal For Clinicians

     b.  Cancer Cell

     c.  Journal of Clinical Oncology

     d.  Cancer Research

We had no previous background in this field.  We came to understand whatever we could through brute force.

dfd24
Posts: 80
Joined: Mar 2011

hello,

thank you for all the references. 

another web site I find useful is smartpatients.com . It is also a member website like this one but has other info like clinical trials.

 

a conversation thread i started on smart patients is  a list of "must questions" to ask doctors at diagnosis but also throughout 

treatment. people might want to look at that thread as people have responded with good questions to ask.

 

thanks again,

yours,

 

danièle

 

JKGulliver
Posts: 82
Joined: Apr 2013

I forgot to add a couple of things:

1.  Once you start looking, you realize how comparatively little EC research there is.  It is not common, usually around 1% of new cancer diagnoses annually.  But, that is still a lot of people annually, 14,000-15,000.

2.  You will see conflicting information, most of it not useful.  That is because nearly all statistics are averages.  Very seldom are there distributions or conditional probabilities given.  So, don't let the numbers shock you.  You have to figure out how they were calculated.

 

Epwaq
Posts: 1
Joined: Jun 2014

 

The most important aspect to understand about survival statistics is that they are highly deceptive and of inconsequential scientific relevance (discussed in A Mammogram Letter The British Medical Journal Censored ). These statistics provide an exaggerated perception on the benefits of screening interventions, however, because cancer is big business the cancer industry keeps using these misleading numbers to raise the public's compliance and trust in their products and services.

 

John Char
Posts: 18
Joined: Jun 2014

my husband has stage 3 esophagus cancer, it is in the lymp nodes and stomach and made it to his back. Doctor gave him 2 to 4 months. he started on Radiation 3 days ago. are the doctors close on how long you have to live?   

JKGulliver
Posts: 82
Joined: Apr 2013

I agree.  First, the survivorship statistics cannot be applied to an individual.  They are averages, computed over large numbers of people.  Second, they often are averages over all stages.  They don't destinguish between chemo responders and non-responders.  Because of the way they are calculated, they cannot be used together with each other. 

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