Cancer Survivors Network

Dave and I had our first visit with an oncologist today. We went to see a local oncologist just to get a consultation from someone in his community, so that if he can do chemo locally we'll have met the doctor. She was very nice, but her news was sobering. As we all know, EC is not a nice cancer (my Hodgkins was simply mickey mouse compared to this!) and that the statistics support a 50/50 outcome. Something we knew, but quite different when a doctor flat out tells you. She was very supportive of our getting a second or third opinion for that matter, and an appointment has been set up for us to go to Johns Hopkins next Wednesday. We'll be meeting with the whole team, and a plan of action will be drawn up and hopefully we can start treatment within the next 2 weeks.

The nurse practicioner at Hopkins is going to order a PET scan for Dave this week, all of his records and pathology from the past 2 biopsies will be sent, and hopefully this will be staged by next week and we can start attacking it.

The onocologist today said in her experience,given that the cancer is at the gastro-esophogeal junction, that treatment will most likely be *just* chemo and then surgery down the road. Is anyone familiar with this protocol? She also mentioned a couple of specific chemo drugs which of course are escaping me at the moment, but was ex-o or some arcronym and then the something that ended in rubicon or something similar? Forgive me for not having them with me at the moment... The FU-5 was mentioned as well, and the cysplantin (spelling!) has maybe fallen out of favor?

Also, as William has said, she said to look into the HER2 component of all of this.

So for now we are just reeling with information. Dave is depressed, he is focusing on the poor outcome. I have reminded him that there are people here on this forum who are 2, 5, 9 years out, and that we have to just take it one step at a time. He will, just wallowing in his misery right now, as he has every right to. Statistics are just that, statistics, and he is an individual.

So as my thread stated in the beginning, we are just beginning this journey. I think we'll probably end up at Hopkins. It's a world renowned hospital, has a great esophogeal cancer center, and is in our back yard, about 30 minutes away... We'll get some second opinions on who to use for the surgery, but our hope is that chemo can be administered close to home and he won't have to trek to downtown Baltimore for that.

Thanks for letting me share. If anyone has any thing to add at this point please let us know. If anyone would like Dave's email address so you could send him some moral support I'll be glad to send it to you.

Thanks so much everyone!

Sandy