Recently diagnosed at 30 year old!!!!

Hello All:

My name is Michele and I have recently been diagnosed with stage 3 esophageal cancer and am completely in shock to say the least.  Where do I start...... Well, I'm 30 years old.  I have smoke for 18 years of my life but I'm not a heavy smoker (work 10 hour days and mostly smoke 8-10 cigarettes a day).  I drink occasionally and am very very athletic and active (I'm 5'3 and weight 128 lbs).  I am to start chemo/radiation for 5 weeks hopefully to be followed up with surgery.

My CT scans, endoscopy biopies and Pet scans show squamous cell cancer in the esophagus and two gastrohepatic lymph nodes as being positive (they can't necessarily say whether those nodes are malignant but are erring on the side of caution)  but all other organs are labled as remarkable with no sign of disease. 

I can't eat a thing.  Usually whatever I do eat I vomit up.  I have lost already 9 lbs (used to be 138 lbs).  I can't even keep liquids down at time.  I throw up every blessed thing I eat. 

I am the mother of a 13 year old.  I am a law student and currently work as a law clerk for a prestigious law firm in Center City Philadelphia. 

I am tremendously scared of the unknown.  The doctor's say that because I am remarkably healthly all around that I should bounce back quickly and that I have a 70% chance of beating this but after reading about it every where I am not 100% convinced.  In fact I think my spirits have been bruised a little more when I read more about it on discussion forums.  Can anyone help me by giving me their stories and prepare me for what I am up against. 

Dear Michele,

I just read your letter and I wanted to let you know I am so sorry to hear about this with you my husband is in the Gwinett Medical Hosptil in Duluth,Ga he had the Escphaus cancer but he had no symptons of it the tumor was 2 cm and hes 70 years old he had a set back after the surgery his heart rate dropped and his oxygen did to cause he was a smoker the Dr that did his surgery was Name Dr.Robert Fritz and he is one good Dr my husbands progress is slow cause of the set back he had we have did alot of praying for him hes talking now but still has to take meds for the pain so hang in there they have come along way now days with all the treatments and all they took out 2-3rds of his escophaus so please hang in there you have alot to live for........

I was 32 when diagnosed so a tiny bit older than you but not much!  I married 2 weeks after chemo and over two years after diagnosis went on to have my son who is 23 months and my daughter who is 9 months old.

Yes, it has not been easy but I have a good life (am a 5 and a bit year survivor now) - I appreciate life.

Best wishes

Dear Michele,

I was diagnosed at age 51 with stage 3 esophageal cancer.  I underwent 5 weeks of chemo, 2 rounds of chemo (5FU and Cisplatin) and then had an esophagectomy.  Don't believe everything you read on the internet about statistics.  It will only depress you.  My doctor told me that I "was a statistic of one" and that's all I should worry about.  Yesterday I received news that my 4 1/2 year CT scan is all clear and I don't need to go back till next year.  My best advice is to find a doctor that really understands the disease and has treated many patients. 

Donna

i was diagnosed last year at 33.

I stongly suggest u get a feeding tube asap as u will lose alot of weight very fast.

keep positive as well

Hi Michele,  I am so sorry to learn of your EC.  I am an 8 year survivor.  I was Stage 2A-T3 which means the cancer had not broken through the wall of the esophagus, but it was in my esophagus and upper stomach.  I was 58 at the time.  There were many early things the surgeon talked about that meant it could have spread beyond the esophagus.  Yes, I was scared too, but when the surgeon opened me up, the confirmation was that it had not gone anywhere else even though some of my ct scans and x rays showed some suspicious things.  The doctors decided it was all inflamation and most early ct scans and x-rays are what my doctors called "muddy".  So, be positive.  Worry will not solve anything.  Aoife is a wonderful testimony to how well you can recover.  There were a couple of other women who used to post that were young and had young families and they did very well also.  They are now off living their lives and don't post.  Several folks had the micro-surgery which is rather non-invasive and the healing time is faster.  Those people made remarkable recoveries and went back to work.

I would caution you, that in the beginning you will need some extra care.  See if you can line up a family member or good friend to keep tabs on you.  You will be sick, but remember you will be in treatment to KILL the EC and they will do what is necessary.  Reassure your 13 year old that you will fight hard and do well, but you will be sick for several months.  Yes, get the feeding tube.  I feel this is one of the most important tools to keep your strength up.  The feeding tube and a port for your chemo. 

Keep posting and let the great folks here help you as the time goes by.  You will probably have some side effects and my experience is that people on this board are wonderful in filling you in on what comes next and how to get through some of the bad days.  Trust your doctors.  A 70% survival chance is great and they will be honest with you.  If they didn't think you would make it they would tell you.   You may want to plan for about 4 to 6 months for treatments, surgery and recovery.  It could be shorter, but plan accordingly for your schoolwork and working.  It will all be there waiting for you when you are Cancer Free.  Best wishes.

Barbara

On Mar 28, 2012 2:54 AM melsy814 wrote:

Hello All:

My name is Michele and I have recently been diagnosed with stage 3 esophageal cancer and am completely in shock to say the least.  Where do I start...... Well, I'm 30 years old.  I have smoke for 18 years of my life but I'm not a heavy smoker (work 10 hour days and mostly smoke 8-10 cigarettes a day).  I drink occasionally and am very very athletic and active (I'm 5'3 and weight 128 lbs).  I am to start chemo/radiation for 5 weeks hopefully to be followed up with surgery.

My CT scans, endoscopy biopies and Pet scans show squamous cell cancer in the esophagus and two gastrohepatic lymph nodes as being positive (they can't necessarily say whether those nodes are malignant but are erring on the side of caution)  but all other organs are labled as remarkable with no sign of disease. 

I can't eat a thing.  Usually whatever I do eat I vomit up.  I have lost already 9 lbs (used to be 138 lbs).  I can't even keep liquids down at time.  I throw up every blessed thing I eat. 

I am the mother of a 13 year old.  I am a law student and currently work as a law clerk for a prestigious law firm in Center City Philadelphia. 

I am tremendously scared of the unknown.  The doctor's say that because I am remarkably healthly all around that I should bounce back quickly and that I have a 70% chance of beating this but after reading about it every where I am not 100% convinced.  In fact I think my spirits have been bruised a little more when I read more about it on discussion forums.  Can anyone help me by giving me their stories and prepare me for what I am up against. 

Hi Michele

I would like to recommend a web site www.fightec.org for you to look at and see how they help esophageal cancer patients navigate through this disease. 

You can read various articles in different categories and this will give you more information about this disease.

You should look to be treated at a Cancer Center Hospital as this cancer in unique. You should probably go through chemo and radiation prior to surgery once you determine what the stage of your cancer is that can be done with and Endoscope with Ultra Sound (EUS)

Bart 

hi michele, i was diagnosed T3 N0. did what you are gg through ie 5 weeks of radiation plus 3 rounds of chemo. i wasm.54. today i am feeling preety normal. advise is to get ansurgeon who has opearated on many caes of EC. also keep amvery posirive attitude that u are gg to beat this cancer. don't focus on the general statistcs. you are what is important. good luck.

Michelle

My husband was diagnosed back in October 2011, he's 54 so older than you.  But was in good health when it was found.  He was stage 4, went thru chemo 8 treatments of 5FU and oxyplantin.  He responded greatly, and a month ago had an esophogectyomy.  I did all kinds of research for his diet for after surgry, and he is fortunate as he has not had any of the issues like many of the postings talk about.  He eats frequently, pretty much anything.  Eats small meals and chew food alot.  You need to find your self a good surgeon and one that is adamant about doing the surgery after your chemo.  Get to a university hospital in your area.  We are from Chicago and Rush University Hospital has a great thoracic surgeon.  Don't give up, keep a positive attitude and keep fighting and you will win.

Kymeg

On Apr 01, 2012 3:18 AM Kymeg wrote:

Michelle

My husband was diagnosed back in October 2011, he's 54 so older than you.  But was in good health when it was found.  He was stage 4, went thru chemo 8 treatments of 5FU and oxyplantin.  He responded greatly, and a month ago had an esophogectyomy.  I did all kinds of research for his diet for after surgry, and he is fortunate as he has not had any of the issues like many of the postings talk about.  He eats frequently, pretty much anything.  Eats small meals and chew food alot.  You need to find your self a good surgeon and one that is adamant about doing the surgery after your chemo.  Get to a university hospital in your area.  We are from Chicago and Rush University Hospital has a great thoracic surgeon.  Don't give up, keep a positive attitude and keep fighting and you will win.

Kymeg

Kymeg

Just wanted to let you know that the Esophageal Cancer Education Foundation www.fightec.org has just published a guide calledEsophagectomy Post Surgical Guide Questions & Answers that you can get on their web site. Their Medical Advisory Committee provided the answers and patients provided the questions. Check it out