Possible Change In Plans

JimboC
JimboC Member Posts: 264
in Esophageal Cancer #1
I have almost talked myself into returning to Pittsburgh and going ahead and having the questionable lymph node removed. Acting now and removing the node if it isn't cancerous has no downside. Waiting until January, scanning and finding out it is cancerous gives this beast two months to grow inside me and possibly spread. Maybe even making me a stage IV. I am considering this for two reasons. First, I am impatient. Second and most importantly, I'm afraid. We have such dismal odds I feel I have to be as aggressive as it is.

When I was up there last week, we briefly discussed this as a possibility. I've got an email in to to see what it would entail. As much as I want to go back to work, I need to get rid of this cloud over my head.
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Comments

  • Wife of patient 50378
    Wife of patient 50378 Member Posts: 124
    #2
    A proactive approach!
    Jimbo, with this beast, I think your proactive approach is wise. Especially, if there is no downside and will alleviate some of the anxiety.
    Sal
  • NikiMo
    NikiMo Member Posts: 342
    #3
    How about a third option?
    Hey Jimbo,

    I haven't shared this, and I should have sooner. My husband had a similar experience with the PET scan prior to surgery. The PET was done 3 weeks after chemo so a little sooner than the oncologist would have liked but the surgeon wanted it. The scan showed two paratrachea nodes lighting up (small SVU uptake), the oncologist said we took the scan too soon it was nothing to worry about, chemo and rads can cause inflamation. The surgeon wasn't as sure but since they were in the field of surgery he was going to take them out anyway. So, I got very upset and could barely sleep from the time those nodes were seen until we got the pathology report. The patholgy report was clean, no nodes had cancer. Would the doctor's consider doing another PET now that more time has passed, but not wait the full 3 months? You are right to be concerned, the lymphatic system is just that a system that travels throughout our bodies, I would not want any EC cells in there either. Just wanted to share a similar story and hopefully help give you some info as you make this decision.

    Niki
  • JimboC
    JimboC Member Posts: 264
    #4
    NikiMo said:

    How about a third option?
    Hey Jimbo,

    I haven't shared this, and I should have sooner. My husband had a similar experience with the PET scan prior to surgery. The PET was done 3 weeks after chemo so a little sooner than the oncologist would have liked but the surgeon wanted it. The scan showed two paratrachea nodes lighting up (small SVU uptake), the oncologist said we took the scan too soon it was nothing to worry about, chemo and rads can cause inflamation. The surgeon wasn't as sure but since they were in the field of surgery he was going to take them out anyway. So, I got very upset and could barely sleep from the time those nodes were seen until we got the pathology report. The patholgy report was clean, no nodes had cancer. Would the doctor's consider doing another PET now that more time has passed, but not wait the full 3 months? You are right to be concerned, the lymphatic system is just that a system that travels throughout our bodies, I would not want any EC cells in there either. Just wanted to share a similar story and hopefully help give you some info as you make this decision.

    Niki

    That would be a great option
    That would be a great option but right now, the big concern is that the node has grown some from the scan 6 weeks prior. This Thursday will only be two weeks since the PET so I don't know if enough time will have elapsed to gauge the node growth and to be honest, I really just want it out at this point. It scares me. Everything I read about recurrant EC is bad. Nothing would tickle me more than to cut the node out and path be clean. Hearing about your experience does help me relax a little more that it might not be cancerous.
  • Unknown
    Unknown
    #5
    JimboC said:

    That would be a great option
    That would be a great option but right now, the big concern is that the node has grown some from the scan 6 weeks prior. This Thursday will only be two weeks since the PET so I don't know if enough time will have elapsed to gauge the node growth and to be honest, I really just want it out at this point. It scares me. Everything I read about recurrant EC is bad. Nothing would tickle me more than to cut the node out and path be clean. Hearing about your experience does help me relax a little more that it might not be cancerous.

    This comment has been removed by the Moderator
  • JimboC
    JimboC Member Posts: 264
    #6
    unknown said:

    This comment has been removed by the Moderator

    That's exactly what I was
    That's exactly what I was thinking. If it isn't cancerous, I'll be fine without the node anyway.
  • NikiMo
    NikiMo Member Posts: 342
    #7
    JimboC said:

    That would be a great option
    That would be a great option but right now, the big concern is that the node has grown some from the scan 6 weeks prior. This Thursday will only be two weeks since the PET so I don't know if enough time will have elapsed to gauge the node growth and to be honest, I really just want it out at this point. It scares me. Everything I read about recurrant EC is bad. Nothing would tickle me more than to cut the node out and path be clean. Hearing about your experience does help me relax a little more that it might not be cancerous.

    Better safe than sorry
    If the surgeon is willing to remove the node and this was my husband in the same post op situation, I would encourage him to have it taken out. If the scan would have to wait for another three months. I am sorry you are dealing with this uncertainty, I am praying for you today. Let us know what your final decision is and when the surgery may be so we can make sure our thoughts are focused that day!

    Niki
  • jojoshort
    jojoshort Member Posts: 230 Member
    #8
    You'll never miss the little devil. I like your proactive approach, Jim.
    Jo-Ann
  • jss2011
    jss2011 Member Posts: 132
    #9
    jojoshort said:

    You'll never miss the little devil. I like your proactive approach, Jim.
    Jo-Ann

    better safe
    than sorry right. Didn't know having it removed was an option. Get it out asap, you sure don't need added stress worrying about it.

    Julie
  • unclaw2002
    unclaw2002 Member Posts: 599
    #10
    Jim,
    Just my two cents but I
    Jim,

    Just my two cents but I agree with you - get it out of your body now. Work can wait --- your life can't. Remember we Americans often live to work, instead of working so that we may live :)

    Good luck with your inquiries. I know you are in great hands at UPMC.

    Prayers and hugs,
    Cindy
  • annalan
    annalan Member Posts: 138
    #11
    Jimbo, go for it - better
    Jimbo, go for it - better safe than sorry. If it's good news - fantastic, if not it can be dealt with at a very early stage. Plus peace of mind, which you won't have until January if you wait - long way off. Good luck.
    Ann (2)
    wife of Alan
    Dx Sep 2009
    Ivor Lewis 2010
  • chemosmoker
    chemosmoker Member Posts: 501
    #12
    smart thinking 100%
    Jimbo,
    I cannot think of a more intelligent decision you could make, scary as more surgery probably is. I am grateful you are so ahead of the game and you're right, this EC almost without fail recurs. I would RUN not walk to UPMC and cut away and scan again before and after, too, even expecting to find more, too. Win this one Jimbo, you deserve it. I would do exactly what you are considering were I in your position. Also consider post-op chemo again too??


    Don't over-think this, just do it as NIKE says it!
    We are behind your logic it is sound.




    Love you,

    Eric
  • chemosmoker
    chemosmoker Member Posts: 501
    #13
    JimboC said:

    That would be a great option
    That would be a great option but right now, the big concern is that the node has grown some from the scan 6 weeks prior. This Thursday will only be two weeks since the PET so I don't know if enough time will have elapsed to gauge the node growth and to be honest, I really just want it out at this point. It scares me. Everything I read about recurrant EC is bad. Nothing would tickle me more than to cut the node out and path be clean. Hearing about your experience does help me relax a little more that it might not be cancerous.

    go for it...
    Never met a lymph node that I missed when it was removed did anyone else?
  • MissusB
    MissusB Member Posts: 111
    #14
    chemosmoker said:

    smart thinking 100%
    Jimbo,
    I cannot think of a more intelligent decision you could make, scary as more surgery probably is. I am grateful you are so ahead of the game and you're right, this EC almost without fail recurs. I would RUN not walk to UPMC and cut away and scan again before and after, too, even expecting to find more, too. Win this one Jimbo, you deserve it. I would do exactly what you are considering were I in your position. Also consider post-op chemo again too??


    Don't over-think this, just do it as NIKE says it!
    We are behind your logic it is sound.




    Love you,

    Eric

    Trust yourself!
    If there is anything I've learned throughout Bill's liver transplant and EC journies, it's to go with my gut...you've done the research, you know what can and can't be done, so do what you have to do, Jimbo! There will be no one as interested in your case as you are! Keep us posted! Prayers are coming your way, friend!
  • ChaadMN
    ChaadMN Member Posts: 32
    #15
    My only advice to you is to
    My only advice to you is to make an informed and educated decision based on facts and your doctors recommendation. Do not let fear influence your decision. In the end I am sure you will do what is right for YOU.
  • JimboC
    JimboC Member Posts: 264
    #16
    Doing an EUS
    I just heard back from UPMC and they recommend having a GI doc do an EUS and grabbing a biopsy. I'm ok with that, I just want to know. Sooner rather than later. I'm just bummed thinking this might be recurrent EC. I'll let everyone know as soon as I know anything. Thanks!
  • Unknown
    Unknown
    #17
    JimboC said:

    Doing an EUS
    I just heard back from UPMC and they recommend having a GI doc do an EUS and grabbing a biopsy. I'm ok with that, I just want to know. Sooner rather than later. I'm just bummed thinking this might be recurrent EC. I'll let everyone know as soon as I know anything. Thanks!

    This comment has been removed by the Moderator
  • JimboC
    JimboC Member Posts: 264
    #18
    unknown said:

    This comment has been removed by the Moderator

    Two Weeks
    As it stands right now, my procedure will be on 11/23, the Wednesday before Thanksgiving. I asked them to call me sooner if anyone cancels. I really hate to wait that long.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #19
    JimboC said:

    Two Weeks
    As it stands right now, my procedure will be on 11/23, the Wednesday before Thanksgiving. I asked them to call me sooner if anyone cancels. I really hate to wait that long.

    Thanks
    Hey Jimbo
    Thanks for your recent update. Sounds like you have it all figured out, and have a good plan. Better to be safe than sorry. Hoping you hear of a cancellation. Thinking of you. Keep in touch!
    Tina in Va
  • ham6789
    ham6789 Member Posts: 29
    #20
    JimboC said:

    Two Weeks
    As it stands right now, my procedure will be on 11/23, the Wednesday before Thanksgiving. I asked them to call me sooner if anyone cancels. I really hate to wait that long.

    Your option sounds good to,me
    Jim, Iam sorry that you have an issue with a node, but know that I will pray for your selection of a correct option and early NED. You know that I am a good prayer warrior and my prayers have been answered so far. Keep me posted.. Love from your good friend, HAM
  • JimboC
    JimboC Member Posts: 264
    #21
    ham6789 said:

    Your option sounds good to,me
    Jim, Iam sorry that you have an issue with a node, but know that I will pray for your selection of a correct option and early NED. You know that I am a good prayer warrior and my prayers have been answered so far. Keep me posted.. Love from your good friend, HAM

    Thanks my friend. I
    Thanks my friend. I appreciate the prayers. I'm a firm believer in the power of prayer. I've been doing a fair amount of praying lately myself. I feel great other than the cloud hanging over my head. I'm actually returning to work on Monday the 14th. I have been blessed in my recovery. No matter what happens, I'm really a better person for having gone through this. I hope you are doing well. We've really been through it this year haven't we?

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