Good news and confusion about my esthesio removal and f/o tx

ValerieMo
ValerieMo Member Posts: 27
in Head and Neck Cancer #1
I went for my follow-up appointment with ENT and Rad Onc yesterday. The good news is the path results came back saying that the tumor was as we expected an esthesioneuroblastoma, but all the margins were clear.

The ENT was mentally patting herself on the back...I'm happy she did a good job too. But she was not sure that radiation would be necessary. "We got it out." Then she said something to the affect of this cancer being like a chronic disease, it is slow growing, so should I have a recurrence, they would just go in and surgically remove it again. Almost as if I should just wait to recur?

This is a little different than what I THOUGHT the TEAM of doctors from ENT, Rad Onc, Hem/Onc, and Neurosurg had agreed upon. Rad Onc highly suggested 6-7 weeks radiation. The problem is there is no real scientific evidence which says what should be done with this cancer.

When I told her what Rad Onc had suggested (before the surgery), she said she was just the one who cuts it out, and that she didn't really know the rest. WHAT????

I'm pretty disappointed by the seeming LACK of continued coordination of care. Shouldn't have she and the rest of the folks regrouped to discuss the plan again???

So, she looked in my sinuses, all is healing well, just a little swelling. I will f/u with her again in a month.

Then went on to Rad Onc. He still believes radiation is the way to go, though stated that I could choose not to do it at this time, and be followed monthly for the first year. Heck - it took the system FIVE years to diagnosis this...I'm not sure I have that much confidence in the system to keep me from recurring. Having talked with others on CSN with my same/similar dx...radiation was the way to go.

I keep thinking of the 1 who did not and he recurred at 2yrs and 5 yrs. I want whatever will keep me cancer free the longest.

Sorry to rant...I'm just so disappointed in the lack of coordinated care. Even the Rad Onc asked me what the Hem/Onc folks told me when I saw them...REALLY? Did you all not talk? They told me there was no need for chemo at this time...but should I recur, then there would be. And I had that Octreotide scan, and got a prelim report from the nurse in the Neurosurg clinic, but no follow up from the doctor. How will that be used in the future??

Is this really the reality of healthcare in America? Is it really up to the patient to pull the pieces together for the doctors? As a nurse...I'm so embarrassed and angry. Dang man....who has MY back???

My decision with Rad Onc was to go forth with the radiation tx. I go Thursday for the simulator/mask. Will begin tx on 12 March. Can anyone help to validate my decision?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    I will validate the choice you just made
    I dont disagree with a word you just spoke. I've done a bunch of reading on your disease, and I have adequate background to judge what I've read. There is literature support for what you are doing. As I see it, your only other valid choice would be to seek out whatever the leading center is for this disease, get your records and get a consultation. If it helps you at all, in your place I'd chose exactly what you are doing. And I'd be pissed too.

    Pat
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    So Much
    So Much is Unknown

    sorry to say but they continue to have new and better ways for treatment to reduce side effects but they still have to list to follow when the question to follow that gives the answers we all look for. this is the way it is for most of those who had to decide. i was in your shoes and just went with my sense of confidence i felt after visiting with all my team of doctors.

    when it comes down to it, what we need to look at is it worth the risk? it is really all about risk reward..... i listened and felt it was not worth the risk of cancer showing it's ugly head again. while they felt they got it all i felt we needed to do all things to help make sure the ugly head of cancer was cut off. so i decided to do everything and reduce the risk.

    for me it was not worth the risk, i can not validate your choice as it's your choice of risk reward.

    that said it sounds like your headed in the direction i would go

    Prayers for wisdom as you make your final choice.

    john

    Pat... sometimes we need to be direct, we are all here to get many thoughts and yours is very valued as is everyone here on CSN (our second family and unconditional support)
  • ValerieMo
    ValerieMo Member Posts: 27
    #4
    You all give me confidence!
    So I wrote the original post early yesterday of my first day back to work. So, I had a little anxiety over that as well.

    Thank you everyone, because you are all correct! I believe my Rad Onc, who still highly suggests the radiation tx, and so that is the way I will go.

    I did have an opportunity to speak to the ENT about my feelings and observations. I really need them to be a team, and not think they work independently.

    I am a person...not a tumor that was resected on the 8th of Feb. I am real flesh and bones with feelings and anxieties and a desire to kick cancer's butt and live cancer free for as long as God will allow. I do not have time for wishy-washy answers like...well, if it comes back we'll just go in and cut it out. That may sound really cool to a surgeon, but as a patient...BACK OFF! I do not want one more inch of my person cut out unless it is absolutely necessary. I would just rather you all came up with the best plan that will keep me cancer free the longest. Sheesh...nursing school 101.

    So, I am feeling better about the choice, and will proceed forward.

    First day back to work was a little hard...it's always weird when someone else's stuff is at your desk. They have a different work mode. But I had great friends who came to the rescue and welcomed me back! Thank you again all! so glad I have a group to vent to and who have been there, done that...and can give some real scoop (not just what someone read about or witnessed occur to someone else).

    Hugs!
    Valerie
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    ValerieMo said:

    You all give me confidence!
    So I wrote the original post early yesterday of my first day back to work. So, I had a little anxiety over that as well.

    Thank you everyone, because you are all correct! I believe my Rad Onc, who still highly suggests the radiation tx, and so that is the way I will go.

    I did have an opportunity to speak to the ENT about my feelings and observations. I really need them to be a team, and not think they work independently.

    I am a person...not a tumor that was resected on the 8th of Feb. I am real flesh and bones with feelings and anxieties and a desire to kick cancer's butt and live cancer free for as long as God will allow. I do not have time for wishy-washy answers like...well, if it comes back we'll just go in and cut it out. That may sound really cool to a surgeon, but as a patient...BACK OFF! I do not want one more inch of my person cut out unless it is absolutely necessary. I would just rather you all came up with the best plan that will keep me cancer free the longest. Sheesh...nursing school 101.

    So, I am feeling better about the choice, and will proceed forward.

    First day back to work was a little hard...it's always weird when someone else's stuff is at your desk. They have a different work mode. But I had great friends who came to the rescue and welcomed me back! Thank you again all! so glad I have a group to vent to and who have been there, done that...and can give some real scoop (not just what someone read about or witnessed occur to someone else).

    Hugs!
    Valerie

    this interaction
    was about whatever professional animosity exists between two of your team members. Your response to this was spot-on. You seem to have things in healthy perspective. It is wierd to see these things change for awhile. But you'll find ways around the changes, because you are a survivor. Don't second guess yourself, this is your life, and you are acting in your best interst with the best information available to you.

    Best to you.

    Pat

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