Squamous Cell Esophageal Cancer

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DOITALL
DOITALL Member Posts: 3
in Esophageal Cancer #1

After over 6 weeks of seeing various doctors and doing tests (first to my PCP, then to ENT for throat scope, then swallow test, then back to PCP for UGI, and finally to gastro for endoscopy), I have been diagnosed with squamous cell esophageal cancer, moderately differentiated.  It is at the top of the esophagus. The gastroenterologist who took the biopsy said there was a 2 cm nodule at 20 cm and a stricture at 23 cm, preventing advancement of the scope.  Gastro referred me to medical and radiation oncolgy and scheduled a PET/CT for tomorrow.  It's been almost a week since the referrals and only the radiation oncologist has scheduled me.  The medical oncologist has not.  No referral to a surgeon has been made.  My gastroenterologist said the cancer was probably inoperable because of the location.  Anyway, I am not at all clear as to who is expected to organize my local cancer fighting team.  I get the feeling it's all on me, and I know nothing about how to do this.  All my doctors are with Cleveland Clinic (except ENT) but there seems to be no Cleveland Clinic coordinator.  Any suggestions?  

In addition, because of the time it is taking locally in Port Saint Lucie/Stuart area of FL, and to get another opinion, I have made a 2 day appointment next week at the Moffitt Cancer Center over in Tampa (3-4 hour drive).  I have been making lots of phone calls to gather tests and records for Moffitt and finally pretty much have what they need.  Moffitt will take another look at the pathology, review the PET/CT images, do their own CT and blood work, and I will meet there with an esophageal surgeon, a medical oncologist and radiation oncologist. It appears that they are organized much  better than my local people.  

In any case, at some point soon, I'm going to have to decide whether to do treatment locally or over in Tampa, or try to combine the two.  So I'm looking for advice,  Is there anyone out there who has experience with squamous cell esophageal cancer at the top of the esophagus?  Any chance at all of operating?  Anyone have radiation and chemo?  Was the combination coordinated somehow? Is a 3-4 hour drive each way for chemo and radiation a thing I can do?  Or is it best to stay local? 

Thanks and God bless!

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  • paul61
    paul61 Member Posts: 1,391 Member
    edited December 2020 #2
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    I have heard good feedback about Moffit

    In following posts on thus forum and Smart Patients I have read that people have had good experiences at Moffit. I think your chances of getting a coordinated team to address your treatment would be better there. 

    Best Regards,

    Paul

  • LASNYDER
    LASNYDER Member Posts: 15 Member
    edited December 2020 #3
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    Have been to Moffit for vocal cord surgery

    Hi Doitall. I have fought vocal cord squmous cell cancer on and off since 2013. I have never smoked, dipped etc just bad luck. I had the cancer removed surgically it Moffit back in 2013 and was in remission until 2019. My care there was good but I did not have a "cancer team". My cancer was very small stage one on the surface and was easy to romove. I healed nicely with no lasting side effects until it returned in 2019. First- stick with a cancer center, the quality of care is far superior to a standard hospital. Get a few looks at what you have, from different docs. I am currently in week five of a 6 week radiation/chemo therapy for my throat cancer at UF proton center in Jacksonville. If you have good insurance MD Anderson is another great choice in Jacksonville. Moffit would not accept my BCBS so thats why we switched. 

    That said I had a total of 2 vocal cord surgeries to remove the cancer, it is not supraglottic like you have but just below. The surgeries were outpatient and easy. Recovery was quick with the only real side effect was more of a hoarse throat sound as my new normal. 

    The Pet scan will show you a great detail of the cancer and how big it is. If you have to get radiation/chemo I will not lie it is an ordeal. I cannot talk, swallowing is extremely painful, food began to taste terrible at the 3 week point. I am basically on a liguid diet until I can swallow and food begins to tast acceptable again. Hopefully once I finish my treatments I will regain my tate and eating abilities agin. Best wishes to you- just be your own advocate. 

    Larry

  • DOITALL
    DOITALL Member Posts: 3
    edited December 2020 #4
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    LASNYDER said:

    Have been to Moffit for vocal cord surgery

    Hi Doitall. I have fought vocal cord squmous cell cancer on and off since 2013. I have never smoked, dipped etc just bad luck. I had the cancer removed surgically it Moffit back in 2013 and was in remission until 2019. My care there was good but I did not have a "cancer team". My cancer was very small stage one on the surface and was easy to romove. I healed nicely with no lasting side effects until it returned in 2019. First- stick with a cancer center, the quality of care is far superior to a standard hospital. Get a few looks at what you have, from different docs. I am currently in week five of a 6 week radiation/chemo therapy for my throat cancer at UF proton center in Jacksonville. If you have good insurance MD Anderson is another great choice in Jacksonville. Moffit would not accept my BCBS so thats why we switched. 

    That said I had a total of 2 vocal cord surgeries to remove the cancer, it is not supraglottic like you have but just below. The surgeries were outpatient and easy. Recovery was quick with the only real side effect was more of a hoarse throat sound as my new normal. 

    The Pet scan will show you a great detail of the cancer and how big it is. If you have to get radiation/chemo I will not lie it is an ordeal. I cannot talk, swallowing is extremely painful, food began to taste terrible at the 3 week point. I am basically on a liguid diet until I can swallow and food begins to tast acceptable again. Hopefully once I finish my treatments I will regain my tate and eating abilities agin. Best wishes to you- just be your own advocate. 

    Larry

    Thanks

    Thanks for your reply.  I'm surprised Moffitt didn't accept your BCBS.  Moffitt is listed as a BCBS "Blue Disctinction" center and comes up in a search of their preferred provider directory.  I'll ask them about this when I visit there this week.  

  • DOITALL
    DOITALL Member Posts: 3
    edited December 2020 #5
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    paul61 said:

    I have heard good feedback about Moffit

    In following posts on thus forum and Smart Patients I have read that people have had good experiences at Moffit. I think your chances of getting a coordinated team to address your treatment would be better there. 

    Best Regards,

    Paul

    Thank You

    Thanks for your reply.  I am going to spend a full day at Moffitt this week.  Hoping to get a good feeling about their approach.

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