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KARLY
@karly

Posts: 6
Joined: Aug 12, 2017

Esophageal cancer reoccurring

Posted by @karly, Tue, Sep 5 6:15pm

My husband was diagnosed with esophagus cancer Aug 2016. He had 4 rounds of chemo and surgery in January to remove and reconstruct his esophagus. Has had many problems since, many dilations and even a stint. The latest with the removal of the stint his vocal folds paralyzed and he had to have an emergency tracheotomy, July 2017 but cancer free. Now in one month we find the cancer is back and in a few lymph. He has been referred to Stanford GI Tumor Board. Can anyone help me with questions I can bring before the board? This has been so upsetting and unbelievable! He can’t talk, eat/swallow and is having a hard time breathing!

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oldkarl
@oldkarl

Posts: 287
Joined: May 25, 2016
Posted by @oldkarl, Tue, Sep 5 7:02pm

Hi, Karly. Gosh, that name sounds familiar, somehow. Anyway, I am not sure that I can answer your queries, but I have some Ideas. I have several cancers, blood disorders, etc., including a pre-cancerous Barrett’s and a stomach cancer in the early stages, and a bunch of stuff. Anyway, seems to me that my questions would settle around my relationship with my wife, if she were the patient. Sure, these doctors will have seen the strong and the poor as folks try to make the best of what they have been given. How do you show love when sex and future and so many things are no longer a reality or even a hope? But don’t give up. Finding new ways to express love and commitment can be fun and rewarding. First, I think you have to commit yourself to appreciating every moment you have with each other. Well, I think that is enough for now. Old Karl

Posted by @colleenyoung, Tue, Sep 5 8:18pm

Hi @karly, welcome to Connect.
I’d like to introduce you to @trudivo @angelag @ssimons who are caregivers to partners living with esophageal cancer, as well as @adriennef and @alpaca who know first-hand about recurrences. I’m confident that they will have thoughts to add to oldKarl’s on how to prepare for your upcoming meeting with the GI tumor board and questions to ask.

I also encourage you to read this discussions on Connect
– Esophageal cancer….transitioning to food https://connect.mayoclinic.org/discussion/esophageal-cancer-transitioning-to-food/
– Diagnosis and discussions: HPV 16 Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/

Karly, what questions would you like to have answered by the board?

KARLY
@karly

Posts: 6
Joined: Aug 12, 2017
Posted by @karly, Tue, Sep 5 10:22pm

I am not sure what questions to ask. Several treatments have been mentioned; immunotherapy, chemo, radiation. I would love for my husband to be able to swallow and eat by mouth. When you are hit with all of this you don’t realize how much we live our lives around food! Even a simple cup of coffee or tea. I am hoping some could help me out with questions I should be asking however I may have to wait until we see what is prescribed.

AngelaG
@angelag

Posts: 5
Joined: Jul 12, 2017
Posted by @angelag, Wed, Sep 6 9:38am

Hi Karly,

I think what you have to do is listen to the doctors. Questions will come once you gather the facts from them. The questions may not be immediate but eventually they will pop into your mind and hopefully your doctor(s) are available to you to answer them.

My husband’s story is a bit different. He had a 12 cm tumor in his esophagus, the cancer had spread to 4 lymph nodes as well. He was considered stage 4. His doctor did not opt for surgery in my husband’s case because the recovery period was long and his doctor wanted to start chemo to try to eliminate the cancer not only in his esophagus but his nodes as well. It was a tough go because the chemo was so strong but my husband did well and was declared in complete remission. What we didn’t know however was the cancer had formed a tumor in the brain (cerebellum) which affected his balance. Apparently chemo does not make it to the brain easily and PET scans don’t show brain tumors well. We found this out about this brain tumor more than a year after his diagnosis. He’s fine because he’s a strong man and actually went to work today commuting 1.5 hours to NYC, but he did have brain surgery 10 days ago and will be undergoing gamma knife surgery (a radiation treatment) Friday to eliminate any microscopic cancer cells the surgeon may not have seen. The tumor “popped out like a cork” according to his surgeon so no “digging” was required to remove it. Through his most recent PET scan they saw a thickening in his stomach, 2 spots in his liver and another suspicious looking node. Because the brain tumor was a “mets” of the esophageal cancer, these new PET scan discoveries are also considered malignant. It has been suggested that he undergo immunotherapy rather than the conventional chemo treatment. He has yet to make up his mind which route he wants to take. He will be talking further with his doctors (as will I).

It’s not an easy road this esophageal cancer. I wish you and your husband much luck. Stay strong; I know you will make the right decision for you both. May God bless us all.

Angela

KARLY
@karly

Posts: 6
Joined: Aug 12, 2017
Posted by @karly, Sun, Oct 1 10:08pm

Hi Angela!
I just did read your post. I am so sorry you guys are going through this and so much! I just hate this cancer!!! We have listened to the doctors but I am thinking they are only human and we are all so unique. What might work for one doesn’t always work for the next. Thank you for sharing all you have both gone through. I will keep my ears and eyes open and ask questions . When this first started the surgeon told us that if we had cancer this was the best one to have . From the sounds of it, I don’t think you and I know we don’t believe that one. Yes, God Bless us all
Karly

Posted by @adriennef, Wed, Sep 6 1:13pm

Hi Karly!

I’m so glad you have reached out here. Everyone’s journey is different, but I really believe we can all learn from each other. This is a great place to do that.

I’m sorry that you have gotten hard news so quickly after thinking the cancer was gone. When that happened to me, I was devastated. I began to meet with different doctors, getting many different opinions. It sounds like your goal is for your husband to have improved swallowing function. This is one of the first questions I would ask doctors: if it is possible, and how do we make it happen. I don’t know enough about esophageal cancer to know the answer, but getting opinions from several doctors should provide some clarity.

Regarding treating the cancer, you may want to ask if surgery is an option. If so, how will that affect your husband’s quality of life? If surgery is not an option, you will want to pursue meeting with a medical oncologist and radiation oncologist (this may be something you could potentially do at the tumor board meeting since all pertinent doctors should be present- I never was invited to mine, so I’m not sure how it works!). I really love my medical oncologist at Mayo because she is well-educated on immunotherapy options/clinical trials that are available. Again, seek out several opinions from well-respected doctors.

When is the tumor board meeting? Please keep us updated and continue to ask questions. There is a wealth of knowledge within Connect!

KARLY
@karly

Posts: 6
Joined: Aug 12, 2017
Posted by @karly, Sun, Oct 1 9:53pm

We met with the tumor board mid September. They have referred my husband to 5 weeks of radiation , 5 days a week and chemo once a week for the 5 weeks. He starts tomorrow. After this is complete they will do a scan to see of the tumor has shrunk. Because the doctors at Stanford biopsied the tumor his tumor has HER2 and responds to herceptin he will have 3-6 months of infusions of this drug along with chemo. One will be done every two weeks and the other every third week. Then another scan will be done. The cancer was found in the scar tissue and some of the lymphs. It is larger than it was originally which totally amazes me! How did this happen and in a months time? It has been very difficult, I can’t even express how difficult. In January he had the removal of the esophagus and it was recreated by using his stomach. The scar tissue was growing afterwards so they would do dilations then a stint was placed in his throat. Then it was getting hard to swallow so the stint was removed in July and that is when his vocal cords became paralyzed. Then the tracheotomy so he could breath. We are hoping that once he starts his treatments that he will be able to eat and swallow. Pretty bad he can’t even swallow water!
So if anyone has experienced any of this I would sure welcome all the support and hope you can share.

Gaybinator
@gaybinator

Posts: 26
Joined: May 13, 2017
Posted by @gaybinator, Sun, Oct 1 11:01pm

Does he have a PEG tube? My husband refused a PEG until he reached 116 pounds. Weight is an ally in this fight.

KARLY
@karly

Posts: 6
Joined: Aug 12, 2017
Posted by @karly, Tue, Oct 3 11:07pm

Oh yes he has a J tube because he can’t even swallow water! It is in his intestine not the stomach

Gaybinator
@gaybinator

Posts: 26
Joined: May 13, 2017
Posted by @gaybinator, Wed, Sep 6 1:21pm

Tumor boards are for doctors from different specialties to have a frank discussion on where the disease stands, what are the options, order of options, etc. Not for the layman.

Posted by @colleenyoung, Wed, Nov 1 1:39pm

Hi @karly I wonder how you and your husband are doing? How did the tumor board meeting go? What are the next steps for your husband?

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