Newly diagonosed and so very scared

WE NEVER EXPECT TO HEAR THE C WORD IN OUR PROFESSION
Melanie,

Welcome, and lets talk, I too had a husband 45 years young diagnosed on APRIL FOOLS DAY IN 2009, i was waiting for someone to say APRIL FOOLS, BUT IT WASN'T A JOKE IT WAS FOR REAL. (we have divorced but remain good friends) he was having stomach problems, we thought it was his gall bladder, he went for test after test, the doctor he went to kept telling us everything was negative, and wanted to put him on some med, thought it was an ulcer, well as you say working in the medical field you never dream of someone in your life being diagnosed with the C word, when everything kept coming back WNL i knew I had to put my foot down, I called the office went over heads, and said LOOK THIS MAN CANT SLEEP, HE HURTS, HE IS HAVING A HARD TIME EATING, AND THIS MAN IS NEVER SICK, NEVER, so when i oiled the wheel they sent him for the EGD, Low and behold when they put him in the room and the doctor came in and told us he had a tumor, YOU COULD HAVE PICKED ME UP OFF THE FLOOR, i would have never dreamed he would have this, had i not been so persisent in getting him in and getting the correct diagnose who knows where he would have ended up, I was beside myself, I thought how can this happen to him, he worked 40-60 hours at work and when he wasn't working at work he worked outside, he weighed 285lbs, from there we went to the oncologist and found the staging which was a II and not in the lymph nodes, he immediately started the highest chemo he could power him with (you being a nurse they said he was gtting some kind of drug they don't use much on anyone with the mycin group) he would go for chemo, and come home with it for 5 days, he had to go on total disability from work, we NEVER GOT A SECOND OPINION, we felt comfortable with his doctor, his oncologist his surgeon and never in a minute wanted a second opinion, you have to go with your heart, and trust, if you are comfortable with the docs then you know you are in good hands, and they will do all they can but GOD has the final answer.

Well Jeff went through Chemo for 3 months, in July 09 he had IVOR LEWIS surgery, he did great on the surgery but he had major problems with his lungs, one collapsed in surgery so he was having a very difficult time breathing so he was put on a ventalator for 10 days, the first 72 hours was touch and go and wasn't sure he was going to pull through.

I had to PULL UP MY BIG GIRL PANTIES ALOT AND DEAL WITH THINGS I NEVER THOUGHT I WOULD HAVE TO DEAL WITH, it was tough seeing him through this ordeal.

I would have not been able to make it through everything without this site, William Marshall lifted my spirits when I thought I could go no more, if I asked for help he was there, he gives awesome advice, but WHEW is he lengthy.

We as medical profession people are always there to help our patients, but never think of one of ours having to go through it, you will have days you cry, scared, we cant fix the problem, like we do on everyone else, I know exactly how you feel, they have days that you just want to leave cause this ugly beast makes this monster come in thir bodies and do things to thir partner that they would never have done before cancer.

Melanie, I am there for you if you need to vent, I have walked the shoes with a young man, like yours, its hard but you can do it.

on another note, Jeff is doing great now weighs about 200lbs, goes in for appts every 3 months with a pet scan an so far so good we are good friends and always will be with the shoes I walked.

Just pull up your BIG GIRL PANTIES, and know we all have the same thing that ugly beast we call CANCER, but we are here to help

take care and keep in touch

Lori/aka moe

ps William when you read this post you know that the BIG GIRL PANTIES is what got me through this along with alot of other viewers. maybe Melanie might need a pair, sounds like me when i first found out huh?

Melanie,
I echo what
Melanie,

I echo what everyone on this board has said. And would urge before your husband is given any chemo you get a second opinion, the tumor is biopsied and tested --- there are new targeted therapies available --- and finally that the cancer is properly staged and a treatment plan is agreed upon. Usually before any chemo is started a team evaluates the patient's condition and then develops a strategy ... chemo, radiation, surgery etc.

Sometimes one type of chemo is better than another depending on the patient, and any underlying physical conditions, and the nature of the tumor. With EC speed is urgent, but it must be done properly. One of my mentors has always said you have a choice to chose two of three when considering quality, accuracy and speed --- and quality and accuracy are the optimal choices, but often people are tempted to focus on speed and end up sacrificing the other two. It sounds that is the way you are headed if the doctors are going to start chemo before really knowing the extent of what they are dealing with.

One last point --- when you said they say it looks bad because it is in the lymph system. That is relative in EC patients because of how the lymph system wraps itself around the esophagous. I know that with a stage III diagnosis an EC patient with lymph involvement still has much hope for a complete remmission so if these doctors aren't up to date with the latest or even with EC they may not be accurate in what they are telling you. I know you are a nurse, but I have to tell you that during this EC journey with my dad I have learned that the doctors don't have all the answers and sometimes they are just wrong. So ask the questions, keep asking and don't just take what they say at face value.

Good luck and welcome to our family. You will want to check in often. And one last comment as William said we may not always say what you want to hear --- but it will always be said with your best interests at heart.

Hugs,
Cindy

my dad went to Duke with stage 3---contact me if you want info
Melanie--
I am sorry I didn't see your post before--I am not on as much as I was before (I went back to work -have 4 children and ("thank God!!"), my dad is is doing very well right now with EC.

He went to Duke and we were VERY HAPPY with our care. I did a ton of research (I am a physical therapist and read more than I should have--it almost made me not a good advocate...so be careful). My dad is older, but was very active & healthy with none of typical risk factors. It came out of the blue also. But bc of where my parents live-that is where they chose to go. It is strange, but they had some different care & recommendations that some of the others on this site (like the actual surgery, the recommended diet after surgery, etc)....I was very worried but it really has worked out well. I do think they can compete with some of the best, but don't have the patient numbers like Pittsburgh and MD Anderson.

Hang in there (sneak in a good cry or two when you can)
private message me here on CSN and I can email or even give you my cell phone if you would like more infor... You just look at top of page and click on "home" and then CSN email... If you have trouble - just post again and I will contact you---if you want Duke info that is....

this is hard---and usually we all know no one personally that has gone through it---that is why this board makes a difference---you are not alone here....
Kim