Esophagectomy surgery: Want to know what to expect

I just received a message on MyChart through Henry Ford Health, that someone is supposed to contact me and if they don't within 2 days, they gave me number to call. I just don't understand these doctors: This is MY LIFE we are talking about and they seem so aloof about it!!!!

Hello @loribroda

From what I understand, you sent your letter a week ago asking for a discussion about your CT scan results. Is that correct?

If it were me, I would send another message, through the patient portal, asking again and give the doctor an option to either talk to you or to refer you to someone who will discuss this with you. You should, of course, follow up in a way that is comfortable for you .

Always remember, it is a patient's right to seek a second opinion, even if it is from another medical center. With electroic records and copies of CT scans that you can pick up, it is relatively easy for one medical center to evaluate results.

Well, I had my 3 month CAT scan and the nodule has increased in size-only 1 millimeter-but still. And it says something about a nodule on my bronchial and lymph node. I have sent a letter to my dr requesting he explain the results to me, cuz there are other things going on also. He has not gotten back with me and it's been almost a week. I'm starting to get really agitated with this dude.

What problems are you having now? We all have to eat smaller portions, still sleep elevated, but thankful the cancer is gone by removing the esophagus. I just wanted that cancer out of there (in 2007) & so grateful to my doctors at Mayo. When I lived in Arkansas I thought I had the best doctors, but they just kept putting me on the next new pill that came out. Then I moved to Florida & right away the doctors told me I had cancer cells in my esophagus.

I was on the 5th floor, April 15 - 29th. I remember only 2 of my nurses names: Jordan ( male ) & Anita. You & I probably traveled those hallways at the same time ( Joseph & Francis, then to rehab with Scott ). When I was having a good day I conversed with everyone. 😉

It's just funny that before the tumor was taken out, I had no problems. I am sorry, but I think the dr. did something wrong, and doesn't want to admit it, and so he sent me to a different gastroenterologist, Who did a EDG, and scraped some things off my esophagus, but they were negative for cancer. I am going to U of M for a second opinion, and going to have them review my files, and possible contact a lawyer.

I too Lori-had my esophagectomy @ Mayo In Rochester April of 2019 with Dr. Robert Shen. Previously, I had 5 days a week of proton radiation for 5 weeks and once a week for 5 weeks of chemo. I was staged @ 2, but Dr. Shen said when one lymph node was involved, it is stage 3.
I lost about 30lbs and have maintained a consistent weight of around 118. I eat most anything I want and frequently but simple carbs only my friend in small amounts after a protein and a vegetable. I feel good, walk daily, do online yoga and Silver Sneakers now this winter and golf in season.

Lori,
Ask a lot of questions of the surgeons and I highly recommend getting at least two opinions from doctors that perform multiple esophagectomies monthly.
I had my esophogectomy in 2019 at Mayo with Dr. Shanda Blackmon. She performed the surgery as minimally invasive that the surgeon at a large medical center in my region could not perform.
I am happy to say my life is fantastic now. Yes it’s not exactly as I was before but my only nuisance is having to eat small quantities frequently to keep calories up.
Join an esophageal cancer support group even though your tumor has been diagnosed as benign. You may still experience the same symptoms we have gone through.
Dietitians are a great help as well as speech pathologists.
Stay positive and seek out all the reliable information you can find from medical experts.
Best wishes.

Lori, to share my story and not to scare you but my December EGD showed no cancer but symptoms similar to yours continued and worsened. Doctors did several swallow tests and prescribed medications with no improvement or answers. Finally in April, at my insistence an EGD with ultrasound showed Stage 3 esophageal cancer. In May chemo and radiation began. The chemo & radiation were hard but allowed me to eat again. August esophagectomy at Mayo Rochester. Now 6 months later with some restrictions living a near to normal life. Cancer free. Hoping this will help you and others.

Hello @loribroda

I agree with Colleen, @colleenyoung, that it is wonderful that the tumor was not cancerous. I can certainly understand your frustration with having a swallowing problem. That is such a difficult problem to deal with. Do you have choking spells or do you just feel like things get stuck? I have had vocal cord surgery for a a paralyzed vocal cord and also have problems swallowing (both before the surgery and again several years after the surgery).

I do agree that seeing a speech pathologist is a great next step. Speech therapists do more than speech therapy, they can also assist with swallowing problems. Have you had a referral to one of these specialists? If not, please ask for a referral. You will be pleased that you did.

I'm also wondering that when you had the various EGDs did they find a way to help with the swallowing problems?

Please know that it is your right to get a second opinion. Find a university medical center or a health care facility like Mayo Clinic with a good multi-disciplinary health care approach. These types of medical centers are also research-oriented and are great at helping with difficult to solve health problems.

Will you post again and let me know who you are doing?