Newly diagnosed esophageal squamous cell carcinoma (ESSC)

Posted by yinouye @yinouye, Jun 3 8:00pm

Last month my husband was admitted to the ICU after an endoscopy. The GI doctor said she found a large mass on his esophagus and biopsied it. For some reason he came out of the procedure bleeding profusely, could not swallow anything because of the bleeding. Clots had completely blocked his esophagus. They infused 4 units of blood and he stayed in ICU for 5 days losing 10lbs because he could not eat and they were not giving him any nutrition. The biopsy came back “inconclusive” but when I read the notes it said “negative”. The GI doctor said she must have missed the mass. Now how does that happen if it’s so big? We started radiation (10) to shrink the mass and stop the bleeding. A CT scan the first day in The hospital showed nodules in the lungs, so they said it had metastasized and was stage 4. This was all before any pathology reports came back (takes a week). A FNA of a lump on his cheek that was suspected parotitis showed squamous cell cancer. A biopsy of the lung was scheduled and a CT scan showed the nodules had shrunk by 50%. Seemed promising that it wasn’t cancer, but the pathology came back squamous cell carcinoma as well.
We started FolfOx6 chemo today. Does anyone have any similar experience? The day before the endoscopy we were skiing top to bottom at mammoth mountain, so this is quite shocking. He has always been an athlete & was quite healthy before this.

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

Hello @yinouye and welcome to Mayo Clinic Connect. It sounds as if you and your husband have had some real challenges following his endoscopy. From your post, it appears that the radiation reduced the lung nodules. Is this correct?

Given the extensive nature of your husband's problems following the endoscopy and the testing that has been done, have you considered getting a second opinion from a leading cancer center? If you do get a second opinion, I would suggest a multi-disciplined center such as a university medical school or a facility like Mayo Clinic.

If you don't live near a Mayo facility (there are three) you might find it helpful to get a video consult in order to make sure that your husband's current treatment plan is the best for his situation. Here is information on scheduling an appointment at Mayo Clinic http://mayocl.in/1mtmR63.

I hope that you post again with an update about your husband's condition. How often will he be getting the FolfOx6 chemo?

REPLY
@hopeful33250

Hello @yinouye and welcome to Mayo Clinic Connect. It sounds as if you and your husband have had some real challenges following his endoscopy. From your post, it appears that the radiation reduced the lung nodules. Is this correct?

Given the extensive nature of your husband's problems following the endoscopy and the testing that has been done, have you considered getting a second opinion from a leading cancer center? If you do get a second opinion, I would suggest a multi-disciplined center such as a university medical school or a facility like Mayo Clinic.

If you don't live near a Mayo facility (there are three) you might find it helpful to get a video consult in order to make sure that your husband's current treatment plan is the best for his situation. Here is information on scheduling an appointment at Mayo Clinic http://mayocl.in/1mtmR63.

I hope that you post again with an update about your husband's condition. How often will he be getting the FolfOx6 chemo?

Jump to this post

Thank you for your reply. We did get a second opinion at Cedars Sinai. They agreed with the chemo and recommended the addition of nivolumab, which will happen next cycle. There is a little discrepancy with the timing of the follow up PET-ct scan though. I would love to get an opinion from the oncologists at Mayo Clinic. Thank you for the info.

REPLY

I said a prayer for you all. Was the diagnosis at the beginning changed to Barretts Esophagus? Then the issues started happening….?

REPLY
@yinouye

Thank you for your reply. We did get a second opinion at Cedars Sinai. They agreed with the chemo and recommended the addition of nivolumab, which will happen next cycle. There is a little discrepancy with the timing of the follow up PET-ct scan though. I would love to get an opinion from the oncologists at Mayo Clinic. Thank you for the info.

Jump to this post

@yinouye, I'd like to add my welcome. You and your husband have a unusually rough start to a difficult cancer. I'm glad that you sought a second opinion at Cedars Sinai. Let me know if you are still interested in contacting Mayo Clinic.

Has the pathology given you more information? Has your husband started chemo now?

REPLY
@colleenyoung

@yinouye, I'd like to add my welcome. You and your husband have a unusually rough start to a difficult cancer. I'm glad that you sought a second opinion at Cedars Sinai. Let me know if you are still interested in contacting Mayo Clinic.

Has the pathology given you more information? Has your husband started chemo now?

Jump to this post

I did request an appt. We received a phone call to schedule but they are calling back after contacting insurance.
We really just want to make sure we are doing the correct things.
1st cycle of chemo was last Friday, he was pretty miserable (nausea, vomiting & tired) but really just the day after. Any suggestions on how to combat that would be greatly appreciated!

REPLY
@rexsan20

I said a prayer for you all. Was the diagnosis at the beginning changed to Barretts Esophagus? Then the issues started happening….?

Jump to this post

Barrett’s esophagus was not mentioned by the oncologist, I have only heard of it in researching online.
Thank you for your prayers.

REPLY
@yinouye

I did request an appt. We received a phone call to schedule but they are calling back after contacting insurance.
We really just want to make sure we are doing the correct things.
1st cycle of chemo was last Friday, he was pretty miserable (nausea, vomiting & tired) but really just the day after. Any suggestions on how to combat that would be greatly appreciated!

Jump to this post

This month is the 10-year anniversary of my esophagectomy. The bottom 40% of my stomach is in my chest and 90% of my esophagus is gone. Every patient is unique and their body needs to be in the hands of the medical team. I had a rough time with chemo, radiation, surgery, blood clots, and just about all treatment phases from diagnosis to the end of recovery. I had to learn how to modify my food intake habits along with finding ways to everyday physical living adjustments. For nine years I have maintained my body weight at 160 pounds which certainly helps to live a more healthy and comfortable life. Except for typical aging issues like arthritis and just getting older, I feel very well considering my insides are very different from most people. I'm open to talking by phone and have done so with several patients who were referred to me from Mayo Clinic Phoenix.

REPLY

My 79 year old father was diagnosed with stage IV esophageal cancer (adenocarcinoma) in Montana two weeks ago. We are waiting to get into the Mayo by referral from the clinic in Montana. Because he was given 3-4 months without treatment we have another appointment with the AZ Cancer of America. This was the only place that could get us in quickly. Time is of the essence but we are hoping to hear from Mayo soon. How long after meeting with an oncologist at Mayo can treatment start…on average? Thank you, Jennifer.

REPLY
@jeli5585

My 79 year old father was diagnosed with stage IV esophageal cancer (adenocarcinoma) in Montana two weeks ago. We are waiting to get into the Mayo by referral from the clinic in Montana. Because he was given 3-4 months without treatment we have another appointment with the AZ Cancer of America. This was the only place that could get us in quickly. Time is of the essence but we are hoping to hear from Mayo soon. How long after meeting with an oncologist at Mayo can treatment start…on average? Thank you, Jennifer.

Jump to this post

So sorry to hear about your father. Have you registered your father as a patient at Mayo? If not that's the first step. All hospitals want to know about a patient's ability to pay for services. If he has been accepted then you might get some direction from the surgery department at 480-342-2270 and the oncology department at 480-342-4800. Mayo providers work in teams so it doesn't hurt to have information access numbers to departments. The following are additional numbers that can be helpful to have: Gen. Info. 480-301-8000, Scheduling 480-301-7722, Appt. Office 480-301-8434, Financial Counseling 480-301-8434, Patient Financial Services 1-844-217-9591

REPLY

I don’t have anything to add but prayers for everyone.

REPLY
Please sign in or register to post a reply.
  Request Appointment