Small cell esophageal cancer

yasminvarg
yasminvarg Member Posts: 3
edited September 2017 in Esophageal Cancer #1

Hello friends, this post is on the behalf of my father.

He was recently diagnosed with small cell esophageal cancer(apparently a very aggressive form). We are still in the early stages where we're trying to figure out what the hell is going on. He is very young at 45 years old and has had reflux issues for a very long time. For the last month or so he has been complaining of pain in the general esophageal area. He is otherwise very very healthy. His blood tests came back negative for anemia and he has lost very little weight (which could be due to the fact that he and my mother have been dieting). He feels strong and the pain is mostly centralized. I'm not entirely sure what I'm looking for here other than general advice and reassurance. The "small cell" bit of it has given me very scary internet results and a bleak point of view. It also makes me believe it has spread despite my dad feeling otherwise 100% (we don't have information on how far it has spread yet). Our current care provider is Kaiser Permanente in Southern California. All the information I have just listed is all the information we have thus far. The surgeon apparently, in front of my parents, pulled out his phone to search up information on small cell esophageal cancer due to the rarity of it -- which I find to be anything but reassuring and makes me feel like my dad isn't in very good hands. I'm researching alternative centers and doctors to get that second opinion and the best course of treatment.

As of right now, more scans are scheduled (specifically to see if it had spread anywhere else) to determine when surgery should happen. The game plan currently is surgery first, then chemo/radation.

Does anyone have any insight? I'm doing everything I can to keep my dad around, he is so young. I am set to graduate college (the first in my family) May 2018 and at the very least I need him to be there. Anything helps. Thank you.

Comments

  • yasminvarg
    yasminvarg Member Posts: 3
    #2
    *insight not incite

    *insight not incite

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #3
    Hello

    Hello yasminvarg,

    I'm not familiar with small cell EC, so I googled it.  You're right, it's quite rare.  Sorry if I can't offer much in the way of specifics, but I can offer some generalities.  Getting your father to a good hospital with good doctors is the most important thing you can do that is in your control.  If you feel like you're not in good hands, by all means seek out a top flight cancer center that may have some experience dealing with scec.  You may have a hard time finding folks who are experts, due to the rarity, but you can hopefully find somewhere that is more than one google search ahead of you in knowledge.  Also, especially due to the rarity, I would seek out a second opinion, even if you love Kaiser Permanente.  A large number of initial diagnoses are either wholly or partially changed with a second opinion.  Also, a second opinion may offer different options for treatment that you may prefer.

    45 is very young for this stuff, but youth is a strong ally in this fight.  That your father is young, strong and otherwise healthy will help him greatly in his fight.  Unfortunately, EC has a bad habit of hitting  relatively young people more than other cancers do. I don't know the standard teatment for scec, but for adenocarcinoma and squamous cell carcinoma (the 2 most common forms of EC) the desired standard treatment (if the person is healthy enough and the cancer is caught early enough) is chemo/radiation, then surgery.  I don't know what the benefit of reversing that order is, but I don't know anything about scec, either.

    Sorry I have so little to offer.

    Wishing you guys the best,

    Ed

  • yasminvarg
    yasminvarg Member Posts: 3
    #4
    Thank you so much

    Thanks a million for the well thought out response. I live away from home but I have called my mom and relayed this information to her. She will be collecting all of his medical records and scans and pushing for a special referral for a second opinion. I’m glad you mentioned UCI as that was one of our initial alternatives to Kaiser. Again, thank you very much.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #5

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