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Scared and sad...

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

I just found this site today and I wanted to post on here just to find others who may be going through what I am.

The week before Christmas, my dad was diagnosed with esophogial cancer. You have to forgive me because I am not quite practiced on the lingo and abbreviations and medical speak yet. What I know is that he had problems a few years ago because he diaphragm was paralyzed on oneside. He had a procedure done that helped him, but I'm not sure that things were ever fixed and I do not know if the two are related completely. I don't like to ask many questions just now so I can't piece this together with the current situation.

At any rate, my dad is a heavy equipment mechanic for Caterpillar and he has been having a lot of problems swallowing and eating and chest pains when he was at work. So they ordered an upper GI done before Christmas. This showed a mass at the top of his stomach and pollups that had moved further up into his esophagus. He was then sent to a Dr. Schilly in Johnstown, PA, who confirmed what they found on the upper GI was cancer. He was then sent to see a UPMC doctor at Presby in Pittsburgh named Dr. Luketich. He had all the scans done and they did a laproscopic scope on him the Friday before Christmas. They did the scope because on one of the scans, they were spots that showed on his liver. They went in and ablated (sp.) the spots on his liver, removing them. Unfortunately, one of the other scans showed that his lymphnodes were swollen and that they too also proved positive for cancer. I've heard whisperings from my relatives who know that it is stage 3, but my stepmom has not told us this directly and I suspect it's just overdramatics from my aunts who have also said they give him two months max. It's very overwhelming.

Right now as it stands he is to have chemo and raditation for 3 months and then surgery. I just want to know what to expect. My dad is a very strong force to be reckoned with. It's just hard to wrap my head around the fact that he is this sick. I just want more information. I don't like questioning he or my stepmother about it all the time because I feel like it hurts them to keep rehashing, but I need just some facts for myself so I can prepare on how to help and be supportive and not fall apart. I know it's just a word and not a sentence, but it's a very scary word.

Also, I am 35 and I have heartburn and reflux all the time, but only advice or help from my doctors has been prescriptions. With this happening now to my dad, would they be more likely to give me a further checkup?

I am really new to this, please be patient with me. Thank you for any response at all.

wagnhc's picture
wagnhc
Posts: 11
Joined: Sep 2011

You are in a great place for information. If I were you I would read and re-read as much as you can on this discussion board. I found it too late in my case but trust me these people know what they are talking about. I don't post much but our stories are quite similiar, I too am 35 and it was my dad that had this horrible cancer (my story is in the About Me page of my profile). I wish you luck on your journey. I am sending my thoughts and prayers to you and your family!

*Heather

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

Thank you for the welcome and kind words.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

You have come to the right place for your questions and answers! I can't answer your questions, but there are oh so many here who can. I found this forum to be warm and inviting and I always received answers to my bazillion questions. My mom was diagnosed in early Sept.

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

Thanks for the welcome

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

I actually appreciate the bluntness and that is why I came here. I just can't believe this is really happening. Glad to meet you.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

The doctor that your dad went to is one of the best. Several people on here use him and he is highly recommended. It sounds like he caught the cancer in time since it is operable. I was stage three in 2007 and had treatment and surgery. I'm now testing cancer free.
I know this is a scary time for you and your family. We all understand where you're at. Don't read all the scary things that are on the internet,We are the real world.
You need to insist with your doctor to be tested. There has to be a reason for the acid reflux and it's best to find out what is causing it. Doctors ignore our symtoms until we have developed cancer.
You'll be hearing from a lot of others. We all care and are here for you,
sandra

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

We did hear that Luketich is one of the best and his partner, Leachy I believe is the one that did the scope. Thanks for the kind words.

JaneO's picture
JaneO
Posts: 42
Joined: Dec 2011

Sorry you are here, but glad you have found us. We have been here just over a month and have learned so much...My Jack was diagnosed in July at Stage IV. One thing I have learned is that it is definately a rollercoaster ride. Sherri is right, have yourself checked out! Insist on an endoscopy.
Don't be afaid to ask anything here...there are no dumb questions!
Jane

BMGky
Posts: 666
Joined: May 2010

Your Dad is definitely being treated by what I would say is the premier program in the country for EC. A little confused as to the zapping of the liver spots. Maybe they weren't cancerous???? As I understand the nodes can have cancer, but the key is whether there is any metathesis to other organs.

His plan of care you set out suggests that maybe he is a Stage III. Yet, as Bailey so accurately related, he could be a Stage IV. So, were the liver spots cancerous or no? I know so little about these things.

As soon as you find out specifically about the staging and just what were those liver spots that were zapped, let us know. Fellow posters who know more will be able to tell you what it means.

Don't give up yet but also, listen to Bailey but don't listen to idle chatter by caring individuals that do not have access to what the surgeon and treatment team know. Let the doctors tell you what they are doing, why, and the expected outcome.

When my husband was going through treatment, one of our friends confided in another friend that he saw no way that my husband was going to make it. The diagnosis, the weight loss, the weakened condition (and this was from the treatment--not the EC). Many others nodded their heads in agreement. Yet, here he is, 18 months later, out and about, busying himself as only he can. We pray that this continues.

We pray for your Dad and your family for strength during this challenging time. Mr. William Marshall always does helpful posts. He presently is taking care of needs of other family members. When he gets online, he can help you as well. Bailey, Paul, Donna, and the names go on all post on this board. They have helped me so much and their information is reliable and can be depended on.

Good luck.
BMGky

PMT
Posts: 15
Joined: Jan 2012

I want to welcome you to this site and tell you it is a wealth of information and support. Sorry to hear about your father, but UPMC is an excellent facility very progressive and aggressive with therapy. My sister received chemo and radiation treatments there under Dr. Luketich. I will say a prayer for you and your family for strength at this time.
Paula

Rick0311
Posts: 38
Joined: Jan 2012

Schmidt7
I am so sorry to hear of your Dad. I am glad that you have found all of us here that can offer help, support, prayers and a lot of good listeners.
I was diagnosed with stage IIB EC in April 2011. Some of the folks I work with were having routine colonoscopies due to being over 50 and were giving me a hard time about not having it done. Well, I finally gave in and had a colonoscopy which was clear. The GI Doctor asked how long I had been on Prevacid and antacids and I told him about 7 or 8 years. The Doc wanted to do an Endoscopy immediately but I balked and said he was only looking for money in there. The Doctor didn’t give up though, his office called me once a week for several weeks. I talked with my family Doc and discussed it with my wife and decided to have the Endoscopy done just to be able to say I told you so. Well, 2 days later the biopsies came back as cancer. I was 1 lymph node from being stage III or worse. The cancer was all through the esophagus and into my lymph nodes. I went through 4 months of Chemo, Cisplatin and 5FU and 28 days of radiation at the same time. The Cisplatin was a 4 hour infusion and the 5FU was on a 5 day pump I carried around with me. I know that I reacted to the chemo and radiation worse than most folks do and I don’t mean to be blunt but I was horribly sick the entire time. He is going to have some god days and he is going to have some bad days and then there are the really bad days. I was extremely nauseous and had very little to no appetite during chemo and radiation, I am told this is somewhat normal. Tell your Dad to take advantage of any and all of the nausea medicines the Docs have in their arsenal, there is no need to suffer when the drugs might help. The pain meds are also a godsend, take advantage of them. On August 31 I had a Minimally Invasive Esophagectomy (MIE) at Barnes Hospital in St Louis. The Doctor removed 1/3 of my stomach and 2/3 of my esophagus. I had a J tube (feeding tube) for 8 weeks and hated every minute of it. It did help keep me going until i could eat again though. I am 4 months No Evidence Of Disease (NED). That’s a brief history.
You need to insist, insist, insist that you have the endoscopy! Best case scenario, the Doc’s find nothing, and if they do, hopefully it will be early enough to be treated and beat it.
The biggest help I have had through this fight has been my wonderful wife whom I don’t think I would have gotten this far without. Family and friends are a huge part of the support system for you also. I am so thankful for all my friends and my mother and father in law. If you can keep your chin up and just be there for your Dad I think would be a big help. Talk with him, joke with him, read to him, take him places and just be there for him on the good days and the bad days and whenever he needs you. All of my nurses were absolutely top shelf. They made treatment days so much more bearable. The folks here are right, listen to the Doctors, get the facts and ask questions, they will answer them!

My thoughts and prayers are with you, your Dad and your family.

Richard (Rick) Watson
Neoga, Illinois

DX – 0411
EC – T2N2M0
MIE – 083111
Barnes Hospital, St Louis
Dr Brian Meyer
NED

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

I'm so glad you posted on this site. I see Shari and William have already given you a ton of information to process so I won't deluge you with any more. I will, however, encourage you to post often and ask all the questions you want. The people on this board are simply amazing. They are knowledgeable, caring and always welcoming of newcomers like yourself. I would also urge you to go in for a scope - insist on it! This cancer can be beat....if it's caught early enough.
Hugs to you and prayers for your dad.
Rita

Schmidt7's picture
Schmidt7
Posts: 10
Joined: Jan 2012

I just wanted to say thank you to everyone who has responded. I am not on the PC much on weekends because I look at one all week long, I will be reading and catching up as I can. Thank you so much sincerely!

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