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Newly diagnosed esophageal cancer. I have a lot of questions.
My husband is 62 and in good health. A month ago he was short of breath. They checked his heart and it was good. His bloodwork showed anemia. We have seen gastroenterologist who found the tumor (6cm) arising from 10cm of Barrett's. CT scan showed nothing. No nodes, lesion or Mets. We went to get EUS at Mayo feeling somewhat confident. That didn't last long. The gastroenterologist at Mayo found what appeared to be 5 nodes involved. He goes back tomorrow for PET scan and I am terrified. We have had nothing but bad news. Has anyone experienced this crazy Rollercoaster of good news bad news and how did you do?
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Than you. May i ask where you had surgery.?
Sounds like my sons.
I had my surgery at IU Med center in Indianapolis and my life saving revision at Mayo Clinic with Dr Blackmon.
I invite you to read my profile but My story can be intimidating to someone that is just starting this journey so please see it thru a lens of hope, perseverance and understanding what God can get you thru.
I would also encourage you to join our EC support group zoom calls that are on every Sunday morning @ 9am EST and Wednesday evenings @6pm EST. at the link below
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Hello,
I echo your feelings.
I am a 64 year old male, diagnosed with T2B EC 3 weeks ago. This is a very surreal time, I personally am in dismay. I have searched the internet to educate my self and it all seems hopeless and everything bad. Be careful with the statistics. I am learning that every ones experience is different. Personally, I have zero support no one to talk to, hug and express emotions. I had thought about foregoing treatment and make Death with Dignity plans. With in this blog, I have found a very good online connection / councilor / support group. I have come to the realization and decision, I will have to go through with it and do this for myself.
I am scheduled to begin the physical journey on March 12 when my chemo port will be put in, followed by 10 weeks of chemo then EC surgery. I too am scared, numb I feel hopeless and want to give up. I am going with the flow, I need to trust my Mayo staff - they are the best and I have only praise for every person I have met at the Mayo. We can get second opinions but I choose to trust them.
By Thoughts and prayers.
Rick
Please review the EC connection info.
Mayo Clinic Connect mrgvw@(mrgvw)
His name is Gary, contact Gary he will give you his personal phone number and freely talk and supply you with a wealth of information and experience. Gary is extremely knowledgeable and positive, providing
zoom calls Sunday 8:00 am central and Wednesday 5:00pm central time. Gary can provide you with the zoom link and a link to the latest information on the FLOK treatment of choice for T2 EC.
I was on the zoom call with you today, it was nice to meet you and hear your story. I too had to go pretty much alone and understand where you are coming from, I had to make the 11hr trip back and forth to Mayo by myself and also had to go thru the surgery by myself. I sent you a message during the call today with my contact info but Im not sure you saw it.
Scott, Thank you all so much! Your number is now in my phone contacts.
I enjoyed the zoom meeting this morning and meeting you all! I want to clarify my comments about not having support. They were directed towards my family. We all have needs and wants. I thought I needed my family to care and support me but it finally occurred to me that I really don't. I want them to care and support me but its their choice. My recent contact with Gary and your all's support group and friends with well wishes of concern, has given me a connection the will, strength and insight to begin and see this journey through!
Rick 🙂
If you don’t mind me asking, what do they do after they remove that much? Do they construct something ? How does that work? My husband has Barrett’s and the idea of that much being removed is frightening.
They typically will remove part of the stomach also and then pull the rest up and connect it to the remaining esophagus. It is an intimidating surgery but after you get thru the first year things get better and continue to normalize. There are adjustments that he will make to how he eats, when he eats, how he sleeps...etc but is all doable and there is an opportunity to have a good quality of life.
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1 ReactionHi @roadiemax, I'm sorry that you've been diagnosed with esophageal cancer, but glad that it was discovered at an early stage. What symptom led to your seeking a diagnosis? Has surgery been scheduled? How are you doing?
His stage right now is cT2N2M0. I was shocked when they staged him a 4, but said he was eligible for surgery.
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2 ReactionsThat is a bit unusual, to have the solid esophageal tumor not more than at a T2 depth thru the esophageal layers, yet have 3 to 6 positive lymph nodes. But the key, for now, is that it appears that only lymph nodes local to the solid esophageal tumor are lighting up some. If there were distant lymph nodes lighting up (shoulder, hip, etc), then he would have an M1 designation.... and surgery might become far less likely. Treatments... and his response to his first-line treatments, is what matters now. The lymph nodes mostly disappear on future scans, combined with a shrinking esophageal tumor... and surgery is most likely. So time to get going! His next scan will be compared to his diagnostic scans. But post-op treatments (known as adjuvant treatments) will also most likely be coming. But first things first. No need to look too far ahead. There are steps to go thru in trying to get to NED status. Don't put too much emphasis on his clinical staging. If he gets to surgery, his post-op pathology will be more definitive... and his staging will be revised.
Gary