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!
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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.