Dad diagnosed Dec.1, with Stage 2 EC. Surgery didn't get it all. Doc says 1 year. HELP!

Hello, Proactive....
I'm so sorry to hear of your father's diagnosis! I'm personally not familiar with surgery BEFORE chemo & rads, so have little to offer you there. I know others here have had surgery before receiving chemo & rads though, so I'm sure others will chime in.

Where is your father located? What hospital did his surgery? Who was his surgeon? Was he seen by anyone familiar with EC - surgeon, oncology, gastro?

Your name would be most helpful. We're a friendly bunch and it's easier to speak with you if we know what to call you.

Keep faith! We will help you make sure that your father has the best care available to him post surgery.

Terry
wife to Nick, age 48
dx Stage 3, T3N1M0
28 rads, 2 weeks Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

Time for a second opinion or a more complete explanation
Hello,

Welcome to our group. I would say that it is time to get a second opinion on the real stage of your Dad’s cancer. Being Stage II and the cancer being outside the esophagus does not track. I have included a reference below for the National Cancer Institute staging guidelines for esophageal cancer:

Esophageal Staging Guidelines </p

It sounds like either the staging was not done correctly prior to surgery, or the post surgical staging is not correct. I would get your Dad to a leading cancer center specializing in esophageal cancer and get another review of his current situation.

Plus, to say that your Dad has “at most 1 year”, is not the kind of feedback you would get from an oncologist that is willing to be aggressive in helping your Dad fight his cancer. We have people here who are Stage IV and are well beyond a year.

If you can give us more information about your geographic location and what your Dad’s insurance options look like, we can help with recommendations about where to go in your geographic area.


Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Proactive Daughter said:

Wow, thanks so much for your
Wow, thanks so much for your quick replies! My name is Jennifer. My family and I, including my father who is the cancer patient (still doesn't roll off the tongue easy)live in Sudbury, Ontario, Canada. My dad has yet to see an Oncologist. He has only seen a Cardiothoracic Surgeon. My dad has had lots of testing done in the last 2 weeks including CT Scans, Pet Scan, GI scopes, MRI...and it was determined that he was stage 2 prior to his surgery, so like you said Paul, his stage might have changed once they were in there and saw what was really going on.

It's all just SO scary. Not even a month ago my father was going to the gym, splitting wood, just settling into his dream of retirement, and then out of now where he has a hard time swallowing, and here we are.

I am very hopeful that the chemo and radiation will be able to get a handle on his cancer, but his Cardiothoracic Surgeon (Dr. Ewing-Bui) says it's a very aggressive cancer, and it is likely to return.

All of you sound so knowledgeable, so helpful. I can't wait to dig in to more of your stories to inspire us and give us some hope. Like I said, this is so very new to us. Still fresh, we're all so scared...

thanks again,

Jennifer Collins
Sudbury, Ontario

P.S I might ad, he is now in the ICU as they had to open him up again as he had internal leakage.

Daisylin is in your area
Chantal (Daisylin) lives in London, Ontario. She and her husband, Lee, have already traveled the EC path. Lee, unfortunately, lost his Stage IV EC battle a bit over one month back. Chantal might be able to point you to some doctors in the area though that she and Lee found especially knowledgable or helpful. It is so very important that your father be seen by a doctor very experienced with Esophageal cancer. EC IS very aggressive and is not a terribly common (yet) cancer. You may find that you learn things from us that your doctor isn't yet aware of in the fight against EC.

Our prayers are with your family as you begin your journey. I hope things improve for your dad.

Love & Hugs,

Terry

Year to live
In my experience with 3 different hospitals and 15 or more doctors is that they NEVER give you a time frame. The reason being, they have no idea. This is a very aggressive cancer. However if he is in Stage 2 his chances of living longer than a year are much higher. My advice to you and your family is to speak to others in your area who can recommend another oncologist you can trust to give you a second opinion.

Proactive Daughter said:

Thank you for your kind words
Thank you all,

I spoke with my mom just a few moments ago and I asked when my dad would see an Oncologist. She said that the surgeon would make a referral in the next few days. My dad is still in the ICU at Health Sciences North here in Sudbury, ON. He will be in the Hospital over Christmas recovering from the two surgeries he just had.

I am very afraid that his diagnosis will change from Stage 2 to Stage 3. Not knowing all that you all know, I can only assume that as you advance to another stage, your chances become less. I don't want to sound doubtful, because I really am hopeful we will fight this, but I am scared for him.

I am so inspired by all of you, I am so happy I found this site. Up until a few hours ago, I was feeling as though this was the end of the road for my dad. That his life from now until the cancer would take him would consist of chemo,radiation and lying in a hospital bed. I know my dad is a fighter, and he is a very optimistic man. He will explore all avenues and seek many medical opinions, it's just so great to hear such positive testamonials from all of you.

I will return with updates, thanks everyone.

Sense of urgency
Dont let anyone keep you waiting for answers. Demand answers promptly. You and your family are the voice for your father. Dont waste any time waiting for doctors to give you answers bug them until they give them to you. It is very hard but can be done. Best wishes to you all.

jss2011 said:

also in Ontario
You need to find a cancer centre and get treatment ( chemo/radiation) started as soon as your dad is feeling stronger.
Do you have other info, "didn't get it all" as in the tumor, nodes? Or just not clean margins?
I am the total opposite side from where you are medically, my hubby was dx in jun and surgery is still a month away. Don't we have any consistency in canada?

Julie

Hi Jennifer
Hi Jennifer, and I'm glad you found us here. This is the last place any of us want to be, but it is also the best, most informed caring and compassionate place for help with EC.

I am from London On, and My husband Lee was stage ivb, diagnosed in January 2011, passed away Nov 8 2011. When I first started posting here, I was so proud (and ignorant) to be a Canadian, and receive "free health care". I think I even posted something on my profile page about it!! Now, I'm singing a different tune...... If I could turn back the clock, and had to do it all over again, we would have had sought treatment elsewhere. I know Lee was inoperable, but the treatment we received was inadequate at best. I had to fight for everything, and in all honesty, I knew more about ec than our oc did. (thanks to the great people here on this site) We got what we 'paid for', and in retrospect, I would have sold my house, car and all my worldly goods to have had the chance to have an experienced doctor and proper treatment. And this is London, with the famous quote "if you are going to get sick, you are so lucky to be in London, best medical centres in Canada" what a joke.

It is very unusual for surgery to happen before chemo/radiation. For you to have not even met an oncologist yet is outrageous. However, what's done is done, and hopefully they can blast what's left with the chemo. I would highly suggest that you do get a second opinion, even if you have to drive to Toronto (or better yet, somewhere in the US) to get it. From what I've read here, you can get the prescribed treatments done in Sudbury, even if the ordering doctor is in Toronto (or wherever)

I certainly hope that my experience was just an isolated case, and that my perception of Canadian health care is inaccurate. In any case, be prepared to be one step ahead of the doctors, and don't be afraid to push and push hard for what you think is best. This site was invaluable to me during Lee's battle, and I can honestly say that he lived months longer than he would have if it was not for this group. What I do know for a fact is that we are not 'allowed' to get all the tests and treatments that our American friends get. Maybe it was because Lee was stage ivb, but we were denied so many things that seem standard for our US neighbours. I hope you choose to stay on this site, you will find so much helpful advice here. There is a wealth of knowledge and experience that you won't find anywhere else.

I'm sorry that this post is so negative, I think I'm channelling my anger towards the medical system...... I do wish you and your dad well, as you navigate these bumpy roads. I hope your dad recovers well from the surgery, and gains strength quickly and can sail through his next rounds of treatment.

All the best,
Chantal

Proactive Daughter said:

You all are so supportive and helpful
I can't even begin to tell you how glad I am to have found this site. I have been researching like crazy! It sounds as though many of you are suprized to hear that my dad had his surgery first, and it doing his chemo and radiation to follow. I am wondering why my dad hasn't seen an Oncologist yet. I mean, my dad followed all the steps that he was instructed to, and given the time line, everyone acted very fast. His Cardiothoracic surgeon rushed the surgery, even bumped someone out of their spot because he said my dad was yound and healthy, and the cancer hadn't spread so he was a perfect candidate for the surgery. Turns out once the surgeon was in there, he said that he had a tough time, and couldn't get it all.

My brother in law actually recorded everything the surgeon said. I will have to listen again and come back. Again, not sure where the cancer was that he couldn't get to, I thought he said the bronchial wall, but I will have to double check. He also said that there were some lymph nodes that he removed, and some that again he couldn't get but was sure the chemo and radiation would take care of that.

Sounds like a 2nd, even 3rd opinion is the best plan. He really is a fighter.

I will dig up some more information, and return. Thanks again everyone, you all are so helpful!

I was Stage 2 at dx.......
I can feel the fear in your posts. My family was exactly the same way in Feb 2010 when I was diagnosed. I had surgery (Ivor Lewis) one month after diagnosis. Not usually the conventional way but surgeon at Mayo Clinic, Rochester, MN said he could get all the cancer without the need of chemo/rad first. One node was found with cancer cells so I received chemo after the surgery. I,agree, get a proper dx and staging first. Search out the best plan for your father. I have 4 children and 6 grandchildren that were my motivating factor. My wife stayed so positive, "We're gonna beat this". Stay positive, be informed and be there as much as you can for your father. God Bless and keep praying.

Gerry