Recently Diagnosed with adenocarcinoma esophageal cancer

marydee2021

My Adenocarcinoma Esophageal Cancer Journey. In Feb 2021 I had a mild case of Covid. After about a week or 2 in my Dr sent me to ER on Feb 25th for heart monitoring, chest xrays etc just because of strange burning and pressure in chest. A common effect from Covid-19. My ekg was fine but a CT scan showed 2 to 3 nodules on lungs. I knew about them as they had been there since 2017 when I had Disseminated Histoplasmosis. I'd been watching them with my pulmonary Dr since 2017 and there has been no changes in size etc.

Hospital recommended follow-up with Onocologist and Pulmonary Dr. On March 9th was finally able to get appt with Onocologist. He ordered a PetScan to check for cancer. March 16th another appt with Onocologist where we discussed PetScan. It was clear for cancer but the area in my upper stomach lit up. Esophagus area at GE junction. Dr ordered upper GI which was done on April 20. Had to have consult appt before they would do procedure appt. Gastro Dr did a biopsy on a suspicious looking area but he didn't see any tumors. 2 days later he called and said biopsy did show cancer but he felt it was very early as again he didn't see a tumor just a suspicious area. He in turn ordered an ultrasound of esophagus which was done on May 4, 2021. After procedure that Dr also said looks pretty early stage and chemo, radiation and surgery should take care of it. He said tumor was about 2cm and there was a suspicious nodule very close to it. He said it wasadenocarcinoma esophageal cancer.
On May 7th met with Onocologist again. He claasified it as Stage IIIA. recommended 6 weeks radiation along with chemo then surgery. Chemo 1 day a week and radiation 5 days a week.

I have my 1st meeting with Radiation Onocologist and Thorasic Surgeon next week to discuss everything and then main Onocologist in 2 weeks to finalize plans.

Stage 3A caught me off guard but here we are waiting on all facts and recommendations so I can make decision on what I'm going to do. My daughter gets married in a few months abd and I feel terrible for her that this cancer is happening now.
All in God's hands and plans just ready for answers. Such a long process it seems. I have no literature etc other than what I find on google. Kind of frustrating but hopefully Drs next week will explain everything in detail

paul61

There is lots of information on the internet some good/some not

Hello Mary,

I am so sorry you find yourself here, seeking information for a disease that we would all like to avoid. There is lots of information on the internet; some very good like the link below:

https://www.nccn.org/patients/guidelines/content/PDF/esophageal-patient.pdf

There is some information that is best avoided; for example the survival statistics for esophageal cancer that are published on many web sites on the internet. You should remember that these statistics tend to be 5 years or more old, and they do not consider your personal health profile or support system. Esophageal cancer is a relatively rare cancer, and therefore not well understood by the medical community at large. In addition, cancer treatment protocols are rapidly evolving and the advent of new treatment protocols and surgical methods have significantly changed the patient experience from when I had my chemotherapy and surgery to eliminate my esophageal cancer 11 years ago.

 

Some recommendations:

1.     Spend some time with the patient guidelines referenced above prior to your next oncologist visit. It will help you to understand the questions you wish to ask and the vocabulary your doctor will use.

2.     Take notes or have someone with you, if possible, to help remember the discussion later.

3.     Consider getting a second opinion from a high-volume cancer treatment center if your oncologist is not currently associated with one. If in the US, I would recommend one of the NCCN member institutions: https://www.nccn.org/home/member-institutions

4.     Ignore statistics currently on the internet related to survival statistics.

5.     Join an online forum where you can discuss your treatment and experiences with other esophageal cancer patients currently under treatment and those who have recovered and are continuing with their lives. I recommend SmartPatients: https://www.smartpatients.com/

6.     Ensure your oncologists checks your tumor biopsy for HER2 and PDL1 associations. This could point to new immunotherapy treatment options.

 

Best Regards,

Paul

Esophageal Cancer survivor, Stage IIB

servman86

23 year survivor

So sorry to hear of your diagnosis.  I was diagnosed at age 36 with stage III EC.  I went through radiation, gastroesophogectomy, (removal of 60% of my esophagus and 1/3 of my stomach) and chemo,(Cisplatin and 5FU)   The procedure is known as the "Ivor Lewis pull up". Through out the course of my treatment I did suffer substantial weight loss, some 85 pounds.  I  watched myself go from 240lbs. down to 155 lbs...dramatic, although certainly some of that weight was in fact unneeded.  Today 23 years later at age 59 I can happily report that I am a healthy 215lbs, very active and able to do virtually anything that I choose.  The journey was difficult of course, and I certainly recognize how fortunate and blessed I have been.  My health requires no daily medicine, and I take no supplements.  I work 55 hours a week as a fixed operations director at a car dealership, and enjoy my livestock (horses, donkeys, chickens, etc) and all the work that goes along with them. 

Each of our outcomes are as unique as we are.  Each of our journeys follow a different path.  But the thought that kept me going in that dark time was "think how good I am going to feel when I beat this thing!!"  I pray that your journey is as easy as it can be, and your out come is as positive as mine.  Please know that there are untold names and faces pulling and praying for you at this time. 

May God bless you and those around you. 

Todd