Really needing some hope and guidance right now

Thank you.

A word of caution: early on I too was limited to soft foods--Jello, puddings, a little ice cream--or liquids like broths. However, on the evening the home care nurse came to hook up my nutrition pump my blood sats measured in the low-80s%, ending in an ambulance trip and 5 days hospitalization for aspiration pneumonia. Since that day in Feb. I have not taken anything orally except an occasional sip of ice water, which doesn't stay down long. Best wishes on your outcomes.

I am a retired clinician and biopharmaceutical executive. I am a 6+ year survivor of stage IV squamous cell esophageal carcinoma.

During my professional career, I had many dealings and research collaborations with physicians and clinical investigators in various departments at the University of Alabama School of Medicine in Birmingham (UAB) including gastroenterology and oncology
Most of my collaborative activities were, with few exceptions, were quite productive. I found the faculty and staff at UAB's highly regarded medical school are all excellent researchers and clinicians.

UAB's O'Neal Comprehensive Cancer Center is the only National Cancer Institute-designated comprehensive cancer center in Alabama. It's known for its multi-disciplinary approach to personalized care, availability of cutting-edge therapies, possible clinical trial opportunities, and patient support through diagnosis, treatment & recovery.

Iĥ've also had excellent collaborative activities with faculty members in the GI division
and the Winship Cancer Center at Emory University's School of Medicine in Atlanta. It is also a NCI center of excellence in cancer research and treatment. Emory also has an excellent proton beam therapy center if that is a viable treatment option for your case.

You are fortunate to live in close proximity to these two excellent Cancer Centers. If you have not already done so, I would strongly suggest that reach out to them to schedule a consult and second opinion on your recent diagnosis as soon as you can.

They can help you make informed decisions regarding the most effective treatment of your disease.

I've attached the links to the O'Neal & Winship cancer centers' web sites to help get you started on scheduling consults/second opinions
https://www.onealcanceruab.org/
https://winshipcancer.emory.edu/
I wish you the best of luck.

Dr.Dave

Hi Lulu3780
I have stage III adenocarcinoma, Her2 negative, diagnosed in July 2023. I had chemo and radiation completed in December 2023. I am now on a wait and see protocol. Surgery was not suggested right away because I too had a gastric sleeve (in 2011) and had horrible GERD as a result of the surgery. If you'd like, please message me and we can exchange phone numbers and chat a bit. I live in Delaware.

Best to you
Lisa

I've been where you are, a tough spot but one you can work with. I have. My cell phone is in my profile write up; if you want to call I'm happy to talk.

Gary

Hey Lulu,
I was diagnosed with stage 3 adenocarcinoma in January of 2024 at age 37, so I have a bit of perspective on being younger with this diagnosis. Try not to spend too much time dwelling on percentages as the outlook on this cancer has improved over the past few years coupled with the fact that you're younger really improves the prognosis. My 2024 was wild with 6 weeks of chemo/radiation, followed by an esophagectomy in June. My swallowing trouble progressed pretty rapidly, I was really grateful that I decided to put a feeding tube in prior to beginning treatment event though it can be a major pain at times. I'm still undergoing monthly OPDIVO infusions just to ensure that any small cancer cells that could have been floating around get cleaned up. The road to recovery is super tough, but there is a road to recovery, so just focus on that! Let me know if you have any specific questions, I could probably write a book on all the craziness of the last year.
Nate

I hope you’re doing well now. From just the couple of weeks that I’ve known have been a little scary. So can’t imagine what you went thru and what I’m about to. I was formally staged yesterday at Stage 3 adenocarcinoma. I asked my dr about a feeding tube and he said as long as I can tolerate shakes and soft foods (VERY FEW OF THEM I CAN TOLERATE) that I should try to avoid it as long as I’m getting nutrients and not losing anymore weight. I had gastric sleeve in 2021 so if I get a feeding tube it most likely won’t go there. Hopefully i should start chemo in the next week or two to get this cancer to shrink. May 5 I will get my PET scan

Lulu, hang in there. I saw someone else say this, but it’s great advice, control the controllable and let the rest go. You have hope, attitude is everything. I was diagnosed stage 3 with 3cm tumor near gastric junction. Nov/Dec of 2023 went through radiation and chemo. February 5, 2024 had esophagectomy. Maintenance scan in May showed it metastasized to liver. 6 weeks of radiation in 3 days destroyed the two tiny lesions. Chemo again starting in July. End of September I was 129 lbs (started my journey at 240, I’m 5’9”), had my 6th of 12 treatments, and got a clear scan. Stopped chemo and continued immunotherapy. Jan 3 and April 3 scans were clear, NED. Still on immunotherapy once a month. Keep your head up. Give the best effort to your ability with your faith, attitude, nutrition, treatments, etc. and regardless of what happens you won’t have any regrets. Out of your control, let the rest go.

As a side note, you mentioned Atlanta, I am in Roswell and have had everything I’ve done at Wellstar Cancer Center at Kennestone Hospital in Marietta. The surgical team is phenomenal, radiologist is a rock star, and have had no complaints with oncologist and staff. Praying for you!

Thank you so much!!!!

Having gone through this 2 years ago exactly, I empathize so much with what you're going through. What I hope for you right now is that you have a care team you trust. What you shouldn't need to be doing is worrying about what to do next with treatment etc-- you should find, if possible, a care team that communicates with each other and with you about options and next steps. I love what @stever1 said about the write-on wipe-off board. It freaked me out when I was first diagnosed and my team was determining next steps, and it seemed like things changed constantly. I realized later that that was a GOOD thing, because as they learned and discussed more, they determined better courses of action. If they had just chosen a course and stuck with it, it might have indicated that they weren't adjusting and adapting the plan based on new information. So my hope for you is that you do have a team you can trust and that can handle the logistics, with your consultation of course, so that you can focus on keeping your body and mind strong for whatever is to come. You can do this!!