Got diagnosed 2 weeks ago. Age 30, otherwise perfect health

LorettaMarshall

dwhite0002 said:

Hello,

Hello,

I was diagnosed when I was 32. VERY similar story. I a,m now a 10-year survivior at age 42! Message me if you would like to talk.

 

David White

Hillsboro, OH

David~Good to hear all your good news "old pal!"

Hey there David,

Good to hear from you again. 

William (Bill) had another checkup here locally with his oncologist and everything is still "A-OK".  Couldn't ask for better than that.  It's been a long time since we heard from you and still remember you when this forum was far more active.  However, we just "don't do FACEBOOK" although we have IDs to post there.  Bill is now in his 14th year of survival with no recurrences.  That's a pure miracle, and so are you.  We hope "mister_eko" will keep in touch and touch base with you, since you were young like he when first diagnosed."  He might think he is the only fella that young to be diagnosed.  If he keeps in touch, he will be able to sort out what is normal for his diagnosis and what isn't.  We all have to "face our fears", lean hard on our faith, dig in, and keep on gettin' up!  That's what both you and we have done.  Our stories should be an encouragement for all "our newbies."  May all your future scans be "negative!" 

Loretta (William's wife) - His MIE @ UPMC for EC Stage III (T3N1M0) on May 17, 2003 by Dr. James D. Luketich 

P.S.  I'm doing "double duty" now since my own Stage IV diagnosis of Peritoneal Carcinomatosis & Ovarian Cancer in 2012.    Like we say, we're just a couple of beggars telling another beggar where to find a piece of bread! 

Nick98338

Going On Nine Months

EGD found the esophagus tumor last November. Already stage IV. No surgery possible. Radiation and Taxol Carboplatin eliminated the esophagus tumor. Now just dealing with the mets in the liver. Recently started folfiri. Hanging in there. 

paul61

It sounds like you are getting a good response to chemo

Nick,

Sometimes all we can do is “hang in there” and take things one day at a time. But if you have significant tumor reduction that is a wonderful thing. It sounds like you are what they call a “good responder” to chemotherapy. You will find a couple of folks here who are NED (no evidence of disease), who were originally diagnosed as Stage IV EC.

The medical profession is finding new progress in immunotherapy based treatments every day, so every day we can continue with success with traditional chemotherapy gives us that much more time toward the day when they find an effective immunotherapy targeted treatment.

May there be many more days of success.

Best Regards,
Paul Adams
McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Six Year Survivor

 

LorettaMarshall

Nick98338 said:

Going On Nine Months

EGD found the esophagus tumor last November. Already stage IV. No surgery possible. Radiation and Taxol Carboplatin eliminated the esophagus tumor. Now just dealing with the mets in the liver. Recently started folfiri. Hanging in there. 

Nick~Sent U reply on new topic-Radioembolization for Liver mets

 Hello & Welcome Nick:

 None of us are happy when another visitor drops in, but we’re often able to help them along the way.  There are other Stage IV patients here who will say hello and be willing to share their stories as well. 

 As for my husband, William, he was diagnosed with Adenocarcinoma @ the GE junction.  And he was able to have pre-op chemo/radiation of 5-FU and Carboplatin which also eradicated the tumor in his Esophagus which had already penetrated all 4 walls and two local lymph nodes.  He was then able to have an Ivor Lewis Minimally Invasive Esophagectomy which was pioneered by Dr. James D. Luketich at the University of Pittsburgh Medical Center.  My husband’s surgery was entirely laparoscopic and only included small band-aid size cuts.  There are other Esophagectomies that are far more invasive, so I always want patients to know about the MIE which has now been around since the mid 1990’s.  It’s just that all surgeons have not updated their skills to perform it.

 Now I just share that as I write to you, but I know there was no surgery available for you as a Stage IV.  But we’re pleased to know that you had great success with the treatments and radiation.  But one thought came to mind, and I wanted to share it with you.  I don’t know if “radioembolization” was mentioned to you as a possibility for treatment in the Liver or not, but I chose to expound on it by way of several instructive videos.  And since the letter was so long, I chose to put it in a separate topic forum.  Perhaps there are others who may have metastasis to the Liver and want to inquire about it as well as a possibility for them.  So please see my additional comments here. 

 http://csn.cancer.org/node/305088

 And may God continue to bless you with continued success in your efforts to have a good quality of life even with your Stage IV diagnosis.

 Loretta

 

Williamj

LorettaMarshall said:

mister_eko~U need 2 come back if U want 2 talk 2 EC survivors!

 Dear mister_eko

 How about if you heard from an Esophageal Cancer patient, diagnosed back in 2002, and received the very least invasive Esophagectomy, known as the Ivor Lewis Minimally Invasive Esophagectomy.  “mister” you are indeed “blessed” to be diagnosed at a stage which falls within the “operable” stage.  Others here would love to be in your place, believe me.

 My husband didn’t drink, smoke, (or even run around with women  ) he only had a hiccup.  He didn’t even have heartburn!   You are not alone, and you can be a survivor as are many here.

 So don’t linger long in your “frightened” state.  You need to be a quick learner.  So if you want to learn more about Esophageal Cancer patients who have been “through it all” and are survivors check back in.   “mister_eko you need to get smart” real quickly, so you can make the very best decisions. This is as informative a link as you will find.  Anything we say here should be checked out with your doctor.  “I dare you to read more here!”  We who have been through this cancer and come out on the other side aren’t here for “our health”, we’re here for “newbies” like you.  So I’m glad you came on one time, and I hope you will soon get your emotions under control.  You can’t make decisions based on “emotions”, you’ve got to make decisions based on “facts”. 

 So if you want to talk to my husband, or others here, and learn more about his successful surgery, and is celebrating his 14^th year of Survival with “no evidence of disease”, send me a message, or write more here.

 Good grief, life isn’t all roses, and you’re big enough and old enough to face this and take control of this diagnosis.  There are many Stage IV EC patients here who would love to trade places with you.  After all, none of us “ordered” this, and at one time they were healthy too. Nobody would get in line to have this cancer on an “elective” basis, but we all would like to come in under the “Stage 3” wire! if we have to be a member of this group!

Most sincerely,

 Loretta Marshall (Wife of William) William diagnosed with Adenocarcinoma at the Gastroesophageal junction (T3N1M0).  Successful laparoscopic Ivor Lewis Esophagectomy performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003! 

  P.S.  We could be of more help if you would tell us more than your age.  We know you're frightened, but no more so than any of the rest of us when we were told "you have cancer!"  So can you fill us in as to who your doctors are, what medical facility you've been treated and with what, what have the doctors said as far as a treatment protocol, and have you had a second opinion?  What kind of tests have you had to date? 

 You will be much less frightened the more you know, believe me.  Armed with the most knowledge will get you the very best treatments.  But we can't help if you don't want to talk to us.  Surely you've not lived 30 years and never had a disappointment in life prior to this. 

How do we contact you?

I would love to connect how can we contact you directly?