Just diagnosed with esophageal cancer

Posted by kathykrenz @kathykrenz, Mar 16 7:49am

I am new to this group and I need some help because I have a lack of knowledge. My husband was diagnosed with Esophageal cancer approx. 2 weeks ago. His primary doctor got him within the Mayo Clinic in Rochester team of doctors. His appointments (tests) do not begin until March 28,2024 for 2 days of numerous tests. He seems to be daily getting worse. At first he could eat soft foods, now that is to difficult. He is still eating popsicles (1-2 a day), hates Ensure. I bought those mini cans of regular soda (he loves soda), it is very difficult to put anything in his system. I bought baby food (thought that would help to go down), he hasn't really tried it (I think it is physiological). I thought he was dehydrated because of seeming so lethargic. He went to clinic and they said he was not dehydrated (great), I would be happy to be wrong. I am just really afraid of the time (today is March 16th), to the beginning of the tests, waiting to see what can be done. Mayo Clinic advised this is the soonest they can get him in. I believe them but have fear of the time it takes. Is there something I can do in the interim? Should I be afraid? Please help me. I don't know who to ask, who can help me. I don't want to discuss this with people that come into our office or my shop because I don't want to have them writing him off without giving him a chance. He has also lost 22 lbs. in the past 2 weeks. thank you to anyone who can help me, I really appreciate your help, your advice, your comments. "thank you".

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@gdj

Hi Kathy -

Your husband’s condition sounds similar to mine last year.

I was diagnosed locally and it took a little longer for me to get accepted at Mayo and for my testing to start.

My weight loss was similar.

My downhill slide for swallowing was also fast and dramatic. I did the best I could before getting to Mayo which wasn’t very good. I don’t know what else you can do now before Mayo.

When I got to Mayo, they put in a feeding tube. That helped save my life. I continued to rely on it for months long after I could swallow again - because food tasted awful.

I really liked and respected my doctors at Mayo. They are so well educated, skilled, and experienced. I’m confident you and your husband will feel the same.

I had two months of Flot chemo - four drug cocktail every two weeks followed by 25 radiation sessions (essentially every work day in June) plus three more chemo infusions.

Esophagectomy on August 3. No cancer found upon surgery.

So I’m a little more than six months out from treatment now. Doing well - eating and digesting is improving. Feeding tube out since October. Taste buds rebounded back to normal, which I’m also very thankful for.

My port is still in too.

I go back to Mayo this week for my second three month follow up surveillance scan,

I’m happy to talk with you and your husband if you want to do that. My cell is in my profile.

I’m about to get on a plane, but can talk this afternoon or after.

Of course I will never forget one year ago when I was in the position you’re in now. It’s far beyond awful.

But - there’s hope. I’m a visual aid for that hope. It gets easier once you have a plan and treatment starts. Really it does - did for me.

Best to you and your husband. Please call if you want. I’m serious about helping as much as I can.

Gary

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Thank you so much. I know you are about to get on a plane and I am good with whenever you can respond. With the feeding tube put in at Mayo was that right away when the couple of days were tests to begin with or at the first consultation? He has tests for 2 days and then we don't go back until the next Thursday. Thanks for your response.

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@kathykrenz

Thank you so much. I know you are about to get on a plane and I am good with whenever you can respond. With the feeding tube put in at Mayo was that right away when the couple of days were tests to begin with or at the first consultation? He has tests for 2 days and then we don't go back until the next Thursday. Thanks for your response.

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My feeding tube was put in week two at Mayo.

Week one was this order of things - pet scan, initial consultation with oncologist, and upper endoscopy. Ct scan (I think).

Week two started with radiation oncologist. Then consult with surgeon, followed by surgery next day to put in tube and look around abdomen for trouble.

Port put in and chemo shortly after that.

Here goes the plane.

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@kathykrenz

Thanks. I just put both on my shopping list.

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Hi Kathy,
I'm new to this journey like yourself my Husband is currently going thru chemoradiation for squamous esophageal cancer he was having difficulty swallowing when diagnosed had lost 40 lbs. he has one more chemo to go and 14 radiation treatments. his oncologist said in 50% of patients as the tumor shrinks, they are able to eat I thought for sure he would need a feeding tube he still has to avoid certain foods his doctor also prescribed a steroid to stimulate his appetite he's eating all the time his favorite is Carnation instant breakfast he had 3 yesterday gained 5 lbs. last week. Not the case for all patients but I'm so thankful.

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@kathykrenz

Thanks. I just put both on my shopping list.

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Are you in a position to go to the ER at Mayo? If so, that is what I would pursue.
Best Wishes

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@jmp1514

Are you in a position to go to the ER at Mayo? If so, that is what I would pursue.
Best Wishes

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It would only take me a couple of hours but I don't know why I would be there. He is losing weight like crazy but does have saliva on his tongue so he is not dehydrated yet. I don't know how much weight is safe. We have been married over 50 years (I was 10) just kidding..and I have never seen him this thin. He is 5'9 and now weighs 170 that was a week ago so probably less now. I think they would think I am totally crazy for bringing him in because we know why he is losing the weight.

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@tbkomparda

Hi Kathy,
I'm new to this journey like yourself my Husband is currently going thru chemoradiation for squamous esophageal cancer he was having difficulty swallowing when diagnosed had lost 40 lbs. he has one more chemo to go and 14 radiation treatments. his oncologist said in 50% of patients as the tumor shrinks, they are able to eat I thought for sure he would need a feeding tube he still has to avoid certain foods his doctor also prescribed a steroid to stimulate his appetite he's eating all the time his favorite is Carnation instant breakfast he had 3 yesterday gained 5 lbs. last week. Not the case for all patients but I'm so thankful.

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Thank you for your message. I just read it to Larry to give him a positive message. I am just looking forward to getting the entire process started. I know the 28th isn't far but that is 2 full days of tests and then we go back to the mayo the next Thursday. So that puts the lack of food and drink for actually another 3 weeks. He does try bites but bites Is to me like nothing. Thank you again for your message.

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yes, they do know why he is losing weight, however, what are his electrolytes doing, his protein stores and calcium. I would think they would consult GI from the ED which may speed up the process and perhaps get him a feeding tube right away as an outpatient. No oncoligist wants their patient malnourished at the start of treatment. Just my thoughts.

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He doesn't have an actual medical team yet because he doesn't start testing until the 28th.

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@kathykrenz

Thank you for your message. I just read it to Larry to give him a positive message. I am just looking forward to getting the entire process started. I know the 28th isn't far but that is 2 full days of tests and then we go back to the mayo the next Thursday. So that puts the lack of food and drink for actually another 3 weeks. He does try bites but bites Is to me like nothing. Thank you again for your message.

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Hi Kathy,
I can so sympathize with you all the tests although necessary seemed to never end for us from when he had his endoscopy/colonoscopy when it was found to the first treatment was close to 3 weeks. I took my Husband to the ER at one point he was admitted for 3 days due to low electrolytes, Magnesium, potassium and low blood counts he also ended up getting a blood transfusion which helped a lot I assume that was from the chemo.

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His PCP needs to get him a ref to a GI specialist to have an endoscopy done ASAP. My husband had the same issues. Dating back to Thanksgiving 2023 he could not hold anything solid down, it would come back up. 11/28/23 he say his PCP, 12/13/23 referral sent to GI, 1/26/24 endoscopy done as well as biopsy, 1/31/24 3 CT scans of abdomen, pelvic, and chest and an ambulance ride to dallas and a 10 day stay in the hospital due to malnutrition. He lost 40 lbs. He has been diagnosed with stage 4 esophageal cancer. Don't let anyone write him off, push to get him a referral. The sooner the better.

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