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And so the journey begins...

Bermudagirl
Posts: 120
Joined: Jun 2012

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

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

You are much better off than we were starting our journey. It is devastating to be diagnosed with EC. We live one day at a time. We cherish the time we have be it 2 days or 2 years or 10 years! Don't lose hope! Try your best to get Dave to be open to the possibilites. This doesn't mean his life is over. It's just another bump in the road. I will be praying for God to lift your spirits and keep Dave's mind clear and free of the negative thoughts that come with EC.

God Bless,

Jayme

Dad Stage IV EC since 2010

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

sandy, There is so much information to absorb so quickly it is very easy to be overwhelmed. There are life altering choices to be made that, at least I know I didn't feel like I had the time to do the research and investigation I'd like to before making. If I could give you one piece of advice for Dave it would be this, start exercising. It is a physical outlet for stress. It gives something to focus on that is within his control. and it helps his body get ready to be better able to deal with all the trauma it will be facing. I know that since my diagnosis exercise has become very important to me and therapeutic. I try to do what ever exercise my physical condition will allow.

If Dave wants to email or even call me please private message me and I'll give you my contact info.

Dave

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