To those newbies who find themselves here...

Bermudagirl
Bermudagirl Member Posts: 114
in Esophageal Cancer #1
I just want to offer you a word of encouragement. I was in your exact same shoes in mid-June of this year. My boyfriend of 6 years was diagnosed with Stage III EC, a result of long term acid reflux that was not treated properly. (i.e. watched over time for Barrett's and endoscopies ordered to track). Of course that is all water under the bridge, we can't go back and change the past. We were overwhelmed when we got the diagnosis, and I found this site early on. It was a godsend. Alot of the people who initially helped me have left, but there are still some great people here that are ready, willing and able to help you navigate through this really tough time.

As Dave was stage III, he had 5 weeks of chemo and radiation, and surgery is set for Monday morning, October 8th, at Johns Hopkins, to remove what is left of the tumor. It was an arduous process, but he got through it. Right now we are enjoying the calm before the storm, as the operation is complex, and recovery rigorous. But don't despair, it can be managed. My best suggestion to you is to find a hospital that deals with Esopahageal cancer. Your local oncologist is not equipped to deal with this particular cancer. They may mean well, but you need the "big boys" in dealing with this. You'll want to look for places like Johns Hopkins in Baltimore, Univ of Pittsburgh in PA, Duke, Mayo Clinic, Univ of Michigan, those types of big, teaching hopsitals. Your community surgeon may be great for taking out a gall bladder, but doing an esophagectomy? Not so much...

Dave just had a PET scan on Monday to determine if the chemo and radiation did its job this summer, and I'm happy to report it did! We are going into surgery feeling good.

If I or any of us others here can be of help to you, please don't hesitate to send us an email through the CSN site. We care, and we've been through it. We'll be glad to help!

Sandy

Comments

  • NLMCEM
    NLMCEM Member Posts: 50
    #2
    not sure who your post was for
    Nino my husband also went to John Hopkins his surgeon is no longer there or his oncologist that we started with in 2010 but we are still very happy with our new team. Our new oncologist is great and we still have Dr. Hales who is the best doctor we ever met. And you are correct in telling others to go to a hospital who specializes in ec ... Please tell Dave and for sure self...after surgery do what he can but DON"T over do. We helped another man after surgery who got so down and depressed but after talking to Nino he realized what he went through is normal and it will get better. Nino had a set back because he pushed himself too much and it was scary but, he learned his limits. Some can eat and do great after but I will say watch the diet. Listened to the nutritionist and if you don't have one ask for one. Also banana Popsicle s were and still are Ninos best fluid intake. His taste changed so much and he did not like many other drinks. I hope Dave can handle ensure or boost, Nino can not even after all this time from dec. 2010 but others have no problem. Weight gain is up and down but staying steady for now. Now we found out he has small less then 1 cm nodes in his lung. Just got a call from our oncologist and he is sending us to the Pulmonoligist to do a bronchial tube test and hopefully biopsy to find out if these nodes are cancer from his EC or perhaps an infection that he says is still a possibility. I am just so happy they are doing more test as and that his oncologist who is looking more for that 2% chance it is NOT the cancer returning but he is not waiting till November on another scan only. We have so much HOPE because of those we read have been cancer free and going on over 8 years. My goal is to help with the EC research that if you ask your doctors at john Hopkins can hook you up with a wonderful group doing work for EC. Best to you and Dave.
    Carolyn the wife to Nino now stage IV

Discussion Boards