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1st Discussion Post

MRL706
Posts: 9
Joined: Feb 2010

Although I have been ‘lurking’ on this discussion site for a couple of weeks now just getting the feel of things, this will be my first post to the site.
My name is Michael and I was diagnosed with adenocarcinoma of the esophagus on Jan. 18th, 2010.
I have been a member of another listserve site for several weeks now since my diagnosis and that site has been extremely helpful for me. I’m sure that there are many members of this site that are members of the other site also so I hope you’ll forgive me if I repeat some things for my introduction to this site.
In Oct. or Nov. of 2009 I began to notice an “irritation” in my throat when I swallowed food. It really wasn’t painful or difficult to swallow, just something different and mildly noticeable. My father suffered with an untreated constriction of the esophagus for years because he was too stubborn to get it fixed and I thought that that’s what I probably had also. The short version of my story is that I went to my family doctor for another minor situation on Dec. 22nd 2009 and just mentioned the swallowing irritation and he referred me to a gastro-doc for a colonoscopy and endoscopy. Thank God he did. The gastro-doc said that he found a “small ulceration” in the very bottom of my esophagus and took a biopsy. He said it looked very mild and prescribed Omeprezole. I took the medication and after just 2 days the “irritation” disappeared and I still have no discomfort what-so-ever to this day. On Jan. 18th 2010 I received a call from the gastro-doc and he said that the biopsy came back as cancer. As was probably the case with all of you, I could have been knocked over with a feather and I don’t really recall much more of the conversation with him after he said the “C” word.
I’ve been through all the poking and testing - blood tests, barium swallows, CT scans, endoscopies, endoscopic ultrasounds, regular ultrasounds, stress tests, pulmonary function tests......yada....yada....yada, and it comes out as T2,N0,M0 - Stage IB or IIA.
This may sound strange, but I’ve think I’ve been truly blessed so far in this journey. The “beast” was discovered relatively early and I think that so far, I’ve had great physicians guiding my case.
Now for the future. I’m scheduled to undergo a Minimally Invasive Esophagectomy at UPMC Presbyterian Hospital in Pittsburgh with Dr. James Luketich doing the surgery. (I would love to hear from Mr. Marshall about his experience with Dr. Luketich)
I realize from my research and correspondence with other EC patients, survivors and caregivers that my journey has just begun and there are bound to many curves, bumps and wrong turns in the road ahead, I am prepared for the miles to be traveled and I’m optimistic that I’ll be posting messages on this site for a long time to come.
I have made up my mind to adapt, persevere and survive and I am quite confident that everyone on this list will help me as much as possible. I look forward to a long relationship with each of you. Thanks in advance for your help. Just by being able to write this is helping me deal with this situation.

Regards,
Michael R. Leahy -mrl706

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Hi Micheal,

My name is Lori i am known as MOE on this site. I want to congradulate you for coming to this site. You will meet many wonderful people on this site and we are all family on this site, we laugh we cry, we vent and we try to give advice. please know we have lost a few in the last six months with this horrible disease, you are so right you will have bumps, turns, and everything else while fighting this beast. I was like you when my Jeff was diagnosed on April Fools day of last year, you could have picked me up off the floor when we heard the "C" word, and of all days to be told APRIL FOOLS, unfortunately that was a terrible joke on that day. It sounds like you are stage 2 which is excellent as that is what he was, except he had to have the IVOR LEWIS surgery, be ready for Bill Marshall to answer you and he will along with links, suggestions, and everything else he is an awesome person, with awesome advice, if it wasn't for him I wouldn't have been able to get through our surgery, we just lost a very dear person on this site her husband passed this past weekend with this disease he also was operated on by the same doctor, her name is Kathy -Mumphy on this site, when she is able she will reply she just buried her husband yesterday. You will also be warned of our BIG GIRL/BIG BOY UNDERWEAR, you will soon learn you will need them often while fighting this disease. you will need them for tests, surgery and everything else William will explain it all for you. You have alot to do, and your diet will change, and the Mr. JOHN in the bathroom will be your best friend. You will learn what you should and shouldn't eat, and realize you won't want the milk. Keep lots of puddings, jello, cream of wheat, eggs, applesauce, things like that around you will need them, you will learn to eat smaller portion of food. Unfortunately I live in Oklahoma and had an awesome doctor but I understand you have the best too.

if I can help further please let me know, I will try to help you with anything, we have a motto here on this site, "life isn't about waiting for a storm to pass,its about learning how to dance in the rain" this is from our other cancer friend that passed away at the age of 24 on this site in November.

Again please know we are all here for you and someday you will be giving advice like me.

Take care,

Lori aka MOE

MRL706
Posts: 9
Joined: Feb 2010

Hi Lori/MOE,

Should I address you as Lori or MOE? I'm not quite sure yet how that works. Thanks for the quick response. From reading the posts these past few days I kinda figured that you would be one of the first to respond to my first post. You're right on the ball. I've also read the posts about the passing of Al. I know he's free now but I cried for his wife and family. I look forward to future correspondence with you and the rest of the group and I'll be very happy to help others as I can.

Be well,
Michael-mrl706

MRL706
Posts: 9
Joined: Feb 2010

Hello William,
Thanks for the quick reply. I'm sorry I didn't have a chance to get back to you and all the others who replied to my first post on this list sooner but I wanted to spend the last weekend before my surgery with my family and did't want to have my nose up to the computer screen while they were here.
I was refered to Dr. Luketich by the Gastro-Doc that did my first endosopy. He is associated with UPMC Northwest up here in Venango County, PA. He gave me the choice of going to Pittsburgh or Cleveland and I chose Pittsburgh because I was more familiar with the city. I guess I made the right choice because I was refered to Dr. Luketich and I'm very happy and blessed to have him and the Hillman Cancer Center.
I'm so very glad you are doing so well. You are an inspiration to the others on this list and I'm looking forward to our future correspondence.

All my best. Stay well
Michael R. Leahy
Knox, PA

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

I know YOU :) I cannot believe how blessed you were to be diagnosed at the stage you were. I always hold my breath when people don't have their diagnosis yet, because it doesn't often happen that you catch this monster early!

I am glad you are here, because William can tell you much about your procedure! He knows it "intimately" if you know what I mean :)

Welcome,
Betty (from the ACOR list too)

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi,
I am Kath aka Mumphy. Dr. Luketich and his team played a very important part of my husbands
care. His team is one of the best.

I dont' me to sound weird but you are truley lucky your cancer was found early enough and you
should do fine. If they suggest that you have any pre or post chemo do it.

I say this to you because I just lost my husband to this horrible disease less than a week ago. He unfortunatley had Stage IV and was operated on by Dr. L and was give the best care possible. It just wasn't in Gods plan for him to over come this disease.

I check the site daily. It's just to soon for me to post, but I felt I had to post to you.
If you have any questions. Please post and I will try to answer in a timely manner.

May God Bless You and Your Family.

Kath

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Michael,
Welcome to our family. As the others have stated, you are most lucky to have gotten this at stage I or II. The gastro dr. was right on the ball with this. That is great. My dad did not get dx until it was at a stage IV. He suffered for many years with what the drs said....acid reflux. He was treated for acid reflux for many years, until the summer of 2008, when he could not longer swallow his food without gagging it back up. My dad was not able to have the surgery, but was treated with 6 wks of chemo and radiation. He did very well, and beat his ec. Now in December 2009, found out he had mets to his liver. He is being treated now for that. He almost gave up on it all just yesterday....but is back to taking his chemo today. It is a very hard decision, chemo will make you sick, most times. It makes you sick because it is killing the cancer. You should not have any problems since you caught yours so early.

I hear nothing but excellent things about Dr L and the hospital in Pittsburgh. You will be in the best hands in the best place. Coming here will also be very helpful to you. You can laugh, cry, vent, and rejoice all in the same place. Keep us posted and the best of luck to you!
Tina

Pghmomma
Posts: 161
Joined: Nov 2009

Rest assure you have a PRO doing your surgery!

My name is Tina, I am a caregiver living apart from my father, who has EC. He always had acid reflux and for many years he took OTC meds and then around october of 09 he was having trouble swallowing, he went to the DR and they scanned his gallbladder cause he was bring food up. That looked great... So then they did a scope right before thanksgiving. They never came out and said the "C" word they just said you have to go and meet Dr. Luketich and his team, we will make you an appt and get back to you. At this time it was thanksgiving and with the holiday they had time off, so DR.L wanted CT scans and sallow tests done and made his appt for DEC 3rd. While he was their DR.Luketich came in and said hey you have this tumor in there and we need to get it out. He lost 30lbs already. So my dad asked about chemo and he said that he will go in there and look around and if he cant get the tumor he will put a port in and have him due chemo first. Well they were able to remove the tumor and his surgery was sch for DEC 7th.. A day Ill never forget! Now he is just going into his 3rd chemo session and his having some issues with being sick and they are trying to fix that. He will have one more chemo session then go for radaition and finish with chemo. He is also on exloda. 4pills a day. He is adding new things to his diet seeing what will work with him now. Everything is one day at a time which you will know by now.
If there is anything I can help you with please feel free to email me
Tinabeana00@msn.com and Ill be more then willing to help.

God bless and we are praying for you!
Tina

MRL706
Posts: 9
Joined: Feb 2010

Thanks for the kind words and advice. Sorry about your Dad. I too had acid reflux for quite some time but I NEVER KNEW it could cause cancer. I wish that there were warnings on the labels of anti-acids that made that point clear.

All my best to your dad. Keep up the support for him. I know it means a lot to the patient.

Regards,
Michael R. Leahy
Knox, PA

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Yes it is too soon to post, but to see you on here makes me smile thanks we will be standing by to hear from you know all your CSN family is here for you.

Love and Hugs
Lori

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

That is my beautiful Grand daughter GOD gave me, and she is precious, her name is Alaina Leigh Nickel, and Her brother is Braeden Bennett Nickel, except he didn't want his picture taken with MOE, so i chose her.

Thanks for asking

Lori

MRL706
Posts: 9
Joined: Feb 2010

Dearest Kath,
I say you're unbelievable because you've just lost your husband and here you are sending ME a note to comfort ME??? I sould be sending you a note to comfort YOU. I can't tell you how much it means to me to have someone like yourself concerned with my well being. I feel better already. You, and many others here are very special people and I'm so blessed to be able to correspond with all of you. Thank you so much for being here.

All my best,
Michael

MRL706
Posts: 9
Joined: Feb 2010

Hi Betty,
I know you too:) I thank my lucky stars every day that I was able to catch this cancer so early. They (the Drs.) are saying I probably won't even have to endure chemo or radiation as long as there are no nodes involved. Of course they won't know for sure 'till after the surgery so keep your fingers (and everything else) crossed that there will be nothing else involved. I'm now in the final week before the March 8th surgery date so things will be pretty hectic these next few days. I have CT scans tomorrow. Blood work and an appointment with my PCP, plus a couple of others on Tuesday plus everything else to do to get ready. It'll get done one way or the other. I plan on relaxing with the wife & kids over the wekend in order to "get my mind right". I AM ready.

Regards,
Michael R. Leahy
Knox, PA

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi Michael,
I am on this site because of my dad---whose story is so similar to many on this site...HE is stage 3, had chemo radiation clinical trial and surgery at Duke---he did very well even though it is a long rough road....He is a small man, never been heavy, so is quite thin still.(pray for weight gain!) In fact when he gains some weight in a few weeks they want to do clean up chemo if he can tolerate it.

But I think a big part of his healing was his attitude and relationships he made with everyone he came into contact.HE talked to everyone who took care of him.(often, my mom would say "Kenny, let the Dr do his work!-shhh!") HE got all the Dr's, residents and nurses to sign the bag Duke had given him. He made a decision that he was going to fight this thing and did what ever he had to--even when it was really hard. There was a time where the doctors and nutritionist said he wouldn't be able to have surgery if he didn't have at least 6 ensures a day (to prevent loosing weight). He was having a real hard time swallowing from radiation scar tissue, and everything tasted bad from chemo. But he decided that the ensure would be his "medicine" and he scheduled his medicine every 2 hours and made himself take it. His birthday was the same day as his oncologist's daughter and he gave her a small gift of smiley face notepads pencils and such.

He was supposed to walk after surgery a few laps around the nursing station at least a couple of times a day. They had a rolling walker for the patients to put all their tubes/drains on and so they could lean on it. As I was helping him those first few laps---he saw a sign that showed that 9 laps was a 1/2 mile, 18 laps was 1 mile. Well he walked 3X that day, 6 laps each--the day after surgery. He did have pain med and epidural--so that made it possible. He smiled and talked to people he passed, patients, cleaning crew, maintenance men, etc. HE said he was just being "friendly".

Anyway Michael, sorry this is so long--but your is caught early--stay positive and bring every else on board with you! You WILL be able to ADAPT< PERSEVERE & SURVIVE as you said! You are going to a great facility and have the expert from what I understand. Take care and ask a lot of questions. We'll be rooting & praying for you---our EC csn "family"
welcome!
Kim

MRL706
Posts: 9
Joined: Feb 2010

So sorry that your dad has EC. I think you are so right about attitude. I think it makes a big difference in recovering. It sounds like your dad & I have the same type of personality. I also like to talk with people and will often greet them as we pass. I sure hopehe can gain some weight and beat this thing. Please give him all my best.

Regards,
Michael R. Leahy

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