Really needing some hope and guidance right now

Posted by lulu3780 @lulu3780, Apr 14 12:11am

I’m a 45 year old healthy female other than what I’m about to say. I have been exhausted and had trouble swallowing food and drinks for maybe about 3-4 weeks and had an endoscopy this past Wednesday. I was diagnosed with invasive esophageal adenocarcinoma, moderately differentiated Friday and still waiting for HER2 results. I do not know what stage I’m in. I have mild gastritis and it started with food and drinks getting “stuck” and I would regurgitate lots of foam, food, and mucus with bubbles. No bitter tasting acid reflux this whole time. I had gastric sleeve in 2021 and have had silent reflux and gastritis ever since, for which I was taking panteprozole. I am scared to death because the outlook on this type of cancer sounds grim. I’ve heard once symptoms start, it’s already advanced. I live in Birmingham, AL and can’t afford to travel or live in another state for treatment unless it’s Atlanta. I just need reassurance and recommendations. Also since the endoscopy I have been able to eat soft foods (which was not possible last week) and drink with no issue. no mucus, no regurgitation. I’m still burping foam and feel a gurgling in my throat. Dr said he was not able to dilate because of the inflammation. It’s all so weird and hard to take in right now

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

lulu3780 | @lulu3780 | 6 days ago

In reply to @diannesmcneill "I am so very sorry." + (show)

Thank you.

pliddle | @pliddle | 6 days ago

In reply to @lulu3780 "Mentally I’m as good as can be expected. I was only able to eat soft foods..." + (show)

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.

davidwrenn | @davidwrenn | 5 days ago

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

SaffronCat | @lsheehy333 | 4 days ago

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

gdj | @gdj | 4 days ago

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

rocketman521 | @rocketman521 | 3 days ago

In reply to @gdj "I've been where you are, a tough spot but one you can work with. I have...." + (show)

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

lulu3780 | @lulu3780 | 3 days ago

In reply to @rocketman521 "Hey Lulu, I was diagnosed with stage 3 adenocarcinoma in January of 2024 at age 37,..." + (show)

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

dorothy314 | @dorothy314 | 1 day ago

In reply to @rlrlavender "Lulu, welcome to a club where nobody wants to be a member. I was diagnosed with..." + (show)

Can you please tell us what Smart Patients is and where to find it? Thank you! Cheering for you Lulu!

dannymac23 | @dannymac23 | 19 hours ago

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!

mrgvw | @mrgvw | 19 hours ago

In reply to @dorothy314 "Can you please tell us what Smart Patients is and where to find it? Thank you!..." + (show)

SmartPatients.com was my first contact with my fellow EC patients. The EC group is crazy active over there. We started a very popular free Zoom call that we do twice-weekly (Sundays and Wednesdays). We run it a bit differently than other cancer type Zoom calls. There's probably every disease in the world inside SmartPatients... but obviously I just hang out with the EC folks.

Gary