Just when we thought we had a plan…

Oy. ok.  So as Tate mentioned in the last post, last week we were at Hartford Hospital getting a second opinion. We saw a wonderful medical oncologist who read the pathology report and agreed with both the diagnosis and the course of treatment.  However, were also in the process of getting other opinions. The people that Ashley works with recommended that she send all of Tate’s records to a world renowned retired specialist in this field.  This unbelievably kind doctor read the 330 pages that lead up to the pathology report.  He was very unsatisfied. In a conference call yesterday, he spoke to all us from Miami.  Karen, Tate and I were here in Hartford, Dezi was is Chicago and Ashley was in DC.  Modern technology.

He feels that there were too many unanswered questions (such as what the lump on his clavicle actually was, why it popped up so quickly and why it went away) and that the biopsy was unable to determine for sure that it was stage 3 Adnocarcenoma. He says the report uses terms like “consistent with adnocarcinoma.”  He explained that cancer treatment is so dependent on the exact type and stage of the tumor, that he does not feel comfortable going with “all signs point to” types of diagnosis.  He said that he did not think we wwere talking about malpractice or anything but just in his words, “the junior varsity team.”  He recommended that we have the actual slides (ie the actual tissue sample) to Sloan Kettering Cancer center where they specialize in diagnosing difficult cases like these.

So what does this mean?  We are not totally sure. This doctor did not offer another diagnosis. He was as stumped by all the varying symptoms as anyone else.  But he  says that should mean at least further testing.

This morning Tate arranged for the slides to be sent to Sloan.  We hope to hear something by the end of the week.  In the meantime, he is continuing with the radiation.

The doctor said, “look you want to look back on this and know that you did everything you could and used all of the resources available to you.” Tate is extremely fortunate to have exceptional resources available to him. So that is what we will do.

Peace,

Julia

 

 

 

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  1. #1 by JoAnne Bauer on March 5, 2012 - 8:19 pm

    …keep asking questions!

  2. #2 by kerri on March 5, 2012 - 8:35 pm

    I am amazed and heartened by how the community has come together. I do not know any people in this area of the medical field, so I can’t help in this way, but I will keep Tate (and everyone helping out) in my thoughts.

  3. #3 by Anonymous on March 5, 2012 - 8:53 pm

    Thank you so much for keeping everyone updated. It helps us know where to put our mental energy. Greg, I haven’t seen you in many years, but it doesn’t lessen the number of good thoughts my family and I are sending your way every day!
    Andrea (Eggers) Scharff

  4. #4 by Anonymous on March 5, 2012 - 8:55 pm

    “Tate is extremely fortunate to have exceptional resources available to him.” Amen! Amen to that!

  5. #5 by Anonymous on March 5, 2012 - 8:56 pm

    BTW — The Amen! Comment came from me. Tate.

  6. #6 by Nina on March 5, 2012 - 11:10 pm

    Tate, you are the least “anonymous” man I know! You are indeed fortunate to have all these resources and such a great home team. As frustrating as this new uncertainty may be, I hope it will lead to better news. Information is power, and the more precise the diagnosis, the better your aim will be when you kick that scoundrel.

    I look forward to coming to Hartford to join you and Karen on one of those walks, and an “I’ve Got My Tate Back” ice cream cone. Soon, I hope!

    love, Nina

  7. #7 by Ellen on March 6, 2012 - 8:04 am

    So I just read Julia’s blog. Who did u see at Htfd? And did the pathologist there review anything? I appreciate what you heard from the “retired” specialist and I certainly have some of the same qualms, but I felt that thing on your neck and it was cancer. Why someone didn’t just surgically bx it I don’t know. But if it is gone it is because it responded to the treatments and even more likely was cancer.  I’m glad that you are continuing with your treatments. It may have been brave or bravado on the part of the oncologist to move forward without more definitive answers but I can relate to the sense of urgency. This fight MUST be won.  How’s your voice this week? See you Wednesday.

  8. #8 by Amy Clifton on March 6, 2012 - 10:13 am

    Oh boy…I know this dilemma well. When I was having mystery fevers and no one could be sure why, at one point I was seeing an opthalmologist, a hepatologist, a neurologist, an infectious diseases specialist, a pulmonologist and a rheumatologist. Strangely enough, the first thing they thought I might have was either lymphoma or leukemia but I never saw an oncologist. Thankfully, all of these doctors met as a team at one point or another and shared all available data, but each had a slightly different view of how to proceed, what tests to run and what conclusions could be drawn. You can imagine how that felt as the patient..frustration, despair, impatience, but mostly confusion. I’m still not sure how one decides, as a patient, which doctor and which opinion to trust. But at some point one has to decide and have faith. Wishing you the best of luck with all this!
    Amy

  9. #9 by Elvy Stepinoff on March 6, 2012 - 1:40 pm

    It is so difficult to process conflicting dr. theories, but I know that Sloan Kettering is the specialist of specialists in this field.

  10. #10 by Anonymous on March 7, 2012 - 2:15 pm

    Use those resources! Slap that rascal! We are ALL extremely fortunate here because we are so blessed to have Tate in our lives!

    Marino & I are looking in to coming out in early April to walk with T in the Hartford spring air…whaddaya think, Warren St.? Got a corner we can crash in for a coupla three days, or somebody else’s corner nearby?

  11. #11 by Anonymous on March 7, 2012 - 2:15 pm

    Ooops, I don’t know how this works! I’m not anonymous, I’m Bonnie!

  12. #12 by Melanie on March 8, 2012 - 7:39 am

    I am obviously no oncologist, but I am a nursing student. The sudden onset of the tumor linked to the bronchitis makes me wonder if it wasn’t an oncogenic virus that set this into motion. I’ll be interested in finding out! Anyway, as always keeping all of you in our thoughts.

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