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Really needing some hope and guidance right now

Posted by lulu3780 @lulu3780, Apr 14, 2025

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

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shaneeliz | @shaneeliz | May 5, 2025
In reply to @lulu3780 "I hope you’re doing well now. From just the couple of weeks that I’ve known have..." + (show)
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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

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@lulu3780 I was also diagnosed stage 3 (in 2023) and am currently cancer free and just have to continue having scans the next 3-4 years. Good things can happen. Never forget that. There's no reason why you can't be part of the positive statistics, even if you have to travel a rough road. I have learned so much about appreciating the here and now and filtering out what just doesn't matter, and I hope you gain the same focus about what truly does matter in life as you go through this ordeal.
I see your PET scan is today-- hoping it gives your team the information they need to tackle your cancer as effectively and quickly as possible!

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lulu3780 | @lulu3780 | May 5, 2025
In reply to @shaneeliz "Having gone through this 2 years ago exactly, I empathize so much with what you're going..." + (show)
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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!!

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So far my team has been great. I have not met my oncologist as of yet, but I will in a couple of days. I am hoping to start treatment next week. I don’t know how optimistic that is, but I just feel the longer that I’m without treatment the faster this parasite is growing inside of me, I’ve had a rough week the last two days especially but today I’ve been pretty good so far I haven’t ate since Friday so I ended up having to go to the ER last night hydration IV but so far today I’ve at least been able to drink a little bit of Pedialyte and a whole boost shake, which is something I haven’t done in days.

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manuelo | @manuelo | May 5, 2025

Cheer up, you are young and strong. You might have to get surgery which in some cases if not most is the best option. I avoided surgery as much as I could but now that I had it I am doing very well.

Once you get diagnosed, if they tell you that you will need surgery focus on getting the best possible surgeon you can. Stay Strong and Positive!

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manuelo | @manuelo | May 7, 2025

Lulu, the gurgling in your throat may be from the type of food you eat and the fact that you have a stricture in your throat from the cancer which makes it narrower. Once you get treatment you should feel better and eat better. Try not to eat acidic stuff which doesn't help the gurgling sensation. I get that from acidic foods.

You need to see your gastro and a nutrionist for advice on what to eat. You might need surgery which sounds ominous but it is not, and it will help you get better. Stay positive.

Cheers!

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Colleen Young, Connect Director | @colleenyoung | May 8, 2025
In reply to @rocketman521 "Hey Lulu, I was diagnosed with stage 3 adenocarcinoma in January of 2024 at age 37,..." + (show)
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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

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@rocketman521, I add my welcome. How are you doing on Opdivo?

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goldenshadow | @goldenshadow | May 9, 2025

Hi, My name is Scott I’ve had the same cancer. I’m 62 Stage three. I understand that you’re scared. So I’ll tell you my treatments and surgery I’ve had. I live in Colorado with my wife and sons. So they started me with chemotherapy called flot. 4 rounds 3 different chemo drugs every other week 2 at infusion center and 1 I took home on a pump for 24 hrs. After those rounds of chemotherapy I waited 5 weeks before my surgery. Surgery was long almost 9 hours long. I had two surgery teams. They were great doctors I had total faith in them. One thing I can say is you have to have trust in the doctors and nurses you go through this with. Also hopefully you have support system family and friends. After my surgery stayed in hospital 9 days. Nurses and doctors were great. It was great to be able to eat again it was 7 months I was on feeding tube for 7 months. Waited four more weeks then 4 more rounds of chemotherapy to make sure cancer is gone. Waiting to get pet scan in June. Any questions you may have please let me know. This is a tough time I know. Try and stay positive. Need to talk I’ll be here ok.

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