new to site-seeking friends

Hello Beckie,

I am so very sorry to hear of your husband’s recent diagnosis. I was diagnosed with esophageal cancer in October of 2009. I was 61 years old at the time. Most of the folks I know who have been diagnosed with EC are in their 60’s; I am sure your doctor has mentioned how unusual it is for someone your husband’s age to be diagnosed.

Cleveland Clinic has an excellent reputation for medical leadership although I am not sure how deep their experience is with esophageal cancer. One of the leading medical centers for esophageal cancer is in Pittsburg not too far from you if you were considering a second opinion.

I had surgery to remove my esophagus and part of my stomach in December of 2009 and then follow up chemotherapy for six months. The good news is that after treatment I am now about 5 years out and so far I have had good scans. The survival statistics for EC can be frightening but please remember they are averages and don’t take into consideration age, overall health, and medical care resources.

If there are any questions I can answer related to diagnosis, staging, or treatment please let me know and I will do my best based on my experiences.

I should also add that this site does not get as much use as it used to, many of us have moved to a Facebook page called the CSN Esophageal Cancer Group. It is a private group but if you have a Facebook account and would like to join I can add you to the group. That group gets much more use and is more interactive.

I hope things go well for you and your husband as you go through staging and establish a treatment plan.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Four Year Survivor

Deathorglory said:

Wishing You the Best

Hello,

 

As I'm sure you're aware, stage III EC is a very big deal, with a best-case scenario that is quite arduous.  First and foremost, you need top notch medical folks to work with, and you have done that. Cleveland Clinic is very well respected.  I'm sure they've tested for her2/neu overexpression.  But double check with them anyhow.  If your husband tests positive for that, it means he has an extra aggressive version of EC, but there's a powerful weapon available against it.  After a good medical team, the best thing you can have going for you is youth and strength.  Your husband is certainly young and obviously has considerable strength if he's already won a fight against brain cancer.  I was 40 when I was diagnosed the first time (also stage III), and youth certainly aided me in the fight. 

I've also had a second go with cancer, but not a different kind.  Mine was a recurrence of EC in my lung.  I get how demoralizing it is to be told you're starting another battle.  The most common route from where you are is chemo, radiation and an esophejectomy.  Mine was followed by a second round of chemo, but I don't think that's a universal practice; I think that's case by case.  That's one reason why it's so important to have quality docs working with you.  

I wish you the best in your fight and hope to see you here posting how well everything is working for you,

 

Ed

Ed

Are you still on maintenance dose of herceptin every week. Have you experienced side effects of it for being so long? Are they planning to discontinue at some point since you are doing good?

Deathorglory said:

Hello

Hello,

 

I still get herceptin every Tuesday.  It's coming in on 3 1/2 years now (much better than the 7-8 months I was told to expect).  I just got back my latest CT results this week, and I'm still in remission.  The plan is still to continue on indefinitely; we don't want to learn the hard way that herceptin is what was keeping me from another recurrence.  I've been on four different chemo regimens since 2008 and herceptin by itself has been by far the mildest as far as side effects go.   I've had mild fatigue, lots of diarrhea, nosebleeds, and a constant drippy nose, but it beats hell out of dieing in june 2012 as was scheduled.

 

Hope all's well,

 

Ed

HI Ed,

It's wonderful that you have such great results.

All the best,

Danièle

I am glad I found this!! My fiancée (usually refer to him as hubby since we were supposed to marry in Jan. but he was too ill)  was diagnosed with stage IV Esophagael Cancer.  It has spread to his upper stomach, lymph nodes and connective tissue going to his liver.  He is young as well (42) and we have a 10 month old.  I feel I can relate.  We are from ND and weren't able to get any care there. We are currently in MN and started chemo last week.  It took a good month to get him strong enough to start chemo.  I would love to have someone to talk to who understands!!  Our world is upside down, living in a hotel, and trying to make ends meet while trying to save his life.  

I would like to be a part of the group on FB but can't find it either! 

Holly

jdsdanish said:

I am new too!

Hi Beckie, I am new too and my dad was diagnosed in March with stage 3, N1. He is 62 yrs old and otherwise healthy. Dad started chemo 3 weeks ago and now has radiation. He also just got his feeding tube. I am also terrified of the treatment, the process and letting him down. We have had many conversations about our fears and we have just recently decided to really focus one day at a time. Please continue to reach out and I will likewise, we have a long journey ahead of us! Paul, I also cannot find the "CNS esophageal group" you mentioned on FB?

Here is the link to the CSN Esophageal Cancer Facebook group. 

https://www.facebook.com/groups/Csnesophagealcancer/

There is also an Esophageal Cancer Awareness Facebook group here:

https://www.facebook.com/groups/6744305812/