I'm Terrified

I was diagnosed with esophagus cancer three days ago.  I had a PET scan, and I have an appointment with an oncologist Monday.  I have a friend who got a copy of the PET results and told me that I have 16 cells that have metastized to my liver, she said they are lesions, and are in both nodes.  I don't know what that means, but it doesn't sound good.

The report also says that the cancer originated in the esophagus.  Can anyone tell me anything at all?  I'm so scared.

 

On 3/21/2008 MarkInMaryland wrote:

I was diagnosed with esophagus cancer three days ago.  I had a PET scan, and I have an appointment with an oncologist Monday.  I have a friend who got a copy of the PET results and told me that I have 16 cells that have metastized to my liver, she said they are lesions, and are in both nodes.  I don't know what that means, but it doesn't sound good.

The report also says that the cancer originated in the esophagus.  Can anyone tell me anything at all?  I'm so scared.

Mark,

I am so sorry to hear of your diagnosis. Time can be your enemy when you are waiting for answers. The first question that comes to mind is-Is your friend certified to read a PET scan? If so, she should be able to tell you what it means. How does the dr. know that the cancer originated in the esophagus? The very first thing I would do is to listen to what the dr. has to say on Monday and then seek out a 2nd opinion at a larger cancer center. Even if you end up staying with the first dr. it's always good to get a 2nd opinion.

I wish I had more advice for you. You have come to a great place for information and support. Please keep us posted on how you are doing and I will keep you in my prayers.

 

Thank you for your kind words.  No, she is a tech, and was reading the radiologist's report.  So, maybe there are nuances to the report that she missed or doesn't understand.

I'm still so worried about the appointment Monday.  I just can't imagine how I could go from perfectly healthy one week to terrified for my life the next.

I know, I'm whining.  I'm sorry.  Mark.

Hi Mark - I lost my Dad in June to the first round of chemo for Espophageal cancer stage IV.  He was otherwise healthy, but, was 77 and was first mis diagnosed with having curable papillary thyroid cancer.  Anyway, his reaction to the chemo was unusual.  With that said, I am assuming you are in Maryland?  Where are you going ?  We were at Hopkins and honestly, had a hideous experience!  I have heard more and more people saying their Hopkins experience was awful.  They are ranked 3rd in the country, but, personally, the level of disconnect and time waiting and waiting for appts. was unexcusable to me and I have heard a lot of people say the same, that they felt they fell through the cracks.  At any rate, if you are there, they are 3rd in the country, just push and advocate for yourself obnoxiously!   Second, I have hear VERY excellent things about Lombardi Cancer Center in D.C. (which is where I wish we had taken my Dad).  What stage are you Mark?  How old are you?  It sounds like you are in good health and will probably do very well!   I know it is terrifying, but, don't get too ahead of yourself.  This is a great web site to have found.  There are a lot of wonderful people and inspiring stories.  I'm sure you'll hear from "Cyclist" (Steve) at some point.  He is amazing!  there are others too.  Also, a really good site that is mostly patients is Cathy's EC Cafe.  There are SO many long term survivors that were at Stage III and IV!  You'll learn so much from there stories and they are very inspiring!  Keep us posted and we will all pray for you!  Hang in there!!  karen

Dear Karen,

I'm sorry to hear about the loss of your Dad.  Yes, I'm in Maryland, and I have my first appointment with Dr. Waterfield, an oncologist, at Franklin Square on Monday.

I'm 48, and in otherwise good health.  I called the Cancer Treatment Centers of America but they don't accept my insurance, an HMO.

Thanks for replying.

Mark

Mark,

I forgot to ask-Do you know if you have adenocarcinoma or sqaumous cell esophageal cancer? They are both treated the same way. I was just wondering!

Hi Mark,

 I'm in Maryland,too...My cancer is NOT the same as yours; but I just completed 6 chemo treatments @ Alvin & Lois Lapidus Cancer Center @ Sinai Hospital..Dr. Stephen Noga was my oncologist.

Once you have gone to yout first appointment @ Franklin, you can still ask for a second opinion.

I was impressed and very satisfied w/ the care I received there.

Just a helpful hint, IF there are any studies offered consider particpating  When you are in a study, they monitor you like a hawk; this provides a bit of "extra" attention..I volunteered for 2 studies and I believe it served me well..

I'm waiting for the "test of cure" CT results as I type..

Channel your fear into researching all you can on line from the American Cancer Assoc. and NIH..be knowlegable about your disease as best you can.

 Find a friend or family member as an advocate for you, preferably someone who is not shy and will support, question and argue for your best care and outcome.

God bless you on this difficult journey..cancer does not have to be a death sentence..I know of someone who had esopogeal CA 6 years ago; treated and doing well!!

 Take each day as it comes and KEEP THE FAITH!

Lyn 

 

I do know that it's adenocarcinoma.

Mark

Thank you, Lyn.

That's what I need to hear, success stories!  That, or "Hey Mark!  Guess what?  There was a bug on the machine, and you don't have cancer!"

I'm guessing that's not real likely though.

Mark

Mark

 I am so sorry to hear what you are going through. There is a really good Esophagus Cancer site and group that has a lot of survivor stories and patients on it called Cathy's EC Cafe, just click the link for the ec group.

you'll be in my thoughts and prayers