BunsenBurner

As someone who was almost diagnosed with Barrett's esophagus (I dodged the bullet - the results came back negative), I second the advice of staying off the internet. There is a lot of very grim stuff out there!!! However, remember - it is not all applicable to your H's case! Cancer is not a homogeneous disease, and your H's cancer is as unique as he is. Early diagnosis can and will mean a huge diffence. My thoughts are with your family during this very stressful time full of uncertainties. And yes, do take care of yourself and make sure that the paperwork is in order for you to be able to be involved to the fullest degree. Hugs again.

ellebud

I too am a survivor (breast and thyroid). I echo (although some are very definite in their opposition to this) stay off the internet. I send you my wishes and hugs for a speedy recovery for your husband and strength for you both.

MomLive

I totally agree the internet can be the cause of a lot of anxiety. The people who post are often those with the worst case scenarios and it can be quite frightening to read. On the other hand, my husband has a progressive neurological disease and my son was recently diagnosed with a rare and disabling sleep disorder. If it were not for the internet, there was a lot of information we would have missed out on. Questions we won't have known to ask. I've had physicians be quite surprised at how much I knew about these diseases and because of that, I'm convinced they were more open in giving us information and more willing to explore unique treatment options. It can be difficult to separate the wheat from the chaff but if you can get past all the negative stories you can learn a lot from other people's experiences.

What I have found is some people dealing a difficult and/or life threatening disease gain comfort and a sense of control by having thoroughly researched the situation. Others get overwhelmed and scared and prefer not to know more than their physician will tell them. There's no right or wrong answer. Just remember, every person, every experience is unique.

HaveHope98

MomLive, you are right. Everyone is unique when it comes to researching information. My sister, a breast cancer survivor, is an expert at research and even subscribes to some list serves to keep up with the latest information. I, on the other hand, fell apart when I read some of the statistics associated with ovarian cancer.

This brings me to another piece of advice, swimcatsmom. If you are comfortable with it, bring someone else along to the appt. with you and your husband. My sister came along with us, took notes, and asked good questions. I think my husband and I were still shell-shocked at the beginning. We appreciated having the notes afterward because sometimes it was too much to take in at once. Things are better now and I can focus on what the doctor is saying, but the beginning is especially rough.

Hugs to you, your husband, and your family.

Puzzled88

I'm sorry you are going through this and my thoughts are with you. I have a good friend who is undergoing treatment for gastric cancer and has responded to chemo much better than expected - his prognosis is improving all the time which is wonderful to hear especially after early indications were not good. As others above have suggested, one thing he and his wife do is to take a friend along to help remember what the doctor says at critical appointments. His wife also uses her Iphone to tape the conversations so they can listen again later when not so overwhelmed. It is really easy to do using the Voice Memo button in Utilities. She doesn't even bother to ask the doctor, she just does it.

geezermom

swimcatsmom, I just sent you a PM but forgot to include this: What You Need To Know About™ Cancer of the Esophagus - National Cancer Institute. It includes questions to ask your doctor.

swimcatsmom

Thanks everyone for the thoughts and advice. We just got a call and have an appointment with the oncologist tomorrow. It will be a relief to find out the actual facts - I seem to have become a bit of a worst case scenario type of person as I get older so getting the real facts, good or bad, at least slows my whirling thoughts down a bit.

I love the idea of taking a friend along. Unfortunately my closest friends both moved and live hundreds of miles away. No family close by either (other than my daughter and that would not work). That is the other thing that makes it hard really.

Puzzled88

That's tough if you don't feel like you have someone you can take along. It may be that during this process, someone or several people who you don't know as well will step up and help. Please remember that people really, really want to help and that you will essentially be doing them a favor if you give them a way to do that. The man I know who is battling cancer is not a super close friend but he has allowed me to cook for him and I have been so very happy to do it. As I told him, it is so frustrating to feel like there is nothing you can do to be supportive. I truly appreciate having a way to help.

aliceinw

Sending more positive thoughts your way, swimcatsmom. I also wanted to share that I know someone who is a long term survivor of esophageal cancer. And as a cancer surivivor myself, I agree with the one day at a time philosophy.

somemom

CureToday.com: Subscription Forms

Cure magazine has a free subscription offer for people with a cancer Dx, it is very interesting and has a lot of research info, not always about ones precise cancer, but reading it can be helpful in terms of just getting into the mode of understanding research in general, how it all works, questions to ask, etc.

dmd77

You've gotten a lot of excellent advice about finding information and dealing with treatment. I went through dealing with DH's cancer 11 years ago (he's in remission now, thank you). My advice to you: make sure you make enough time for yourself that you can stay strong and be the person your family needs you to be. That may mean that when someone says "what can I do?" you answer:

*provide dinner on Tuesdays
*help me straighten out this billing problem
*take me to lunch at a nice restaurant
*read to DH while I take a long walk
*pick up these prescriptions for me

and a million other possibilities.

I wish you well.

SportsMama

Sending prayers and positive thoughts your way. So sorry for what you all are going through. Please try to take it one day at a time.

mspearl

I have had 2 cousins with it...well one is not blood related.

Let me tell you, they both survived! The first one was about 50 and had to go through chemotherapy and radiation. The worst was the radiation, his mouth was so sore. He had a positive lymph node also. The cancer was up high in his esophagus...more like lower throat.

My 2nd cousin was only 44 and he had symptoms of terrible heartburn. His wasn't metastasized. It was lower in his esophagus than other cousin. He also had chemotherapy but not sure if he had radiation. He is doing fantastic!

You are in my prayers.

swimcatsmom

My husband's is low in the esophagus as well. I am almost more concerned about the radiation than the chemo, though I know both have their risks. Something we will learn more about tomorrow.

Thanks everyone. CC is so great. It really does help me a lot to get all this feedback. You feel so alone when something like this happens. Several years ago my best friend's baby had cancer and I spent many hours at the hospital with her. I remember thinking how weird it was that everyone else's life was just going on as normal. I thought the same today when i went to my tax class. The support here is priceless and I really do appreciate it.

One thing strikes me - this is supposed to be quite rare in the US, but a lot of people seem to know people who have had it,

wis75

You get heightened perceptions for things that concern you. Good luck- always feel free to ask medical people questions. My own brush with cancer was stage 2 melanoma on an arm- a cut and cure case (H and I, physicians, did some internet research and were happy our local peers were up to date). Almost feel I haven't paid the dues to be a "cancer survivor". Keep up your prediagnosis lifestyle as much as you can- remember the world outside the one of cancer. Right now you face a lot to be learned, don't let it overwhelm you. Be sure to let us be there for you.