Feeling down

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Viewing 15 posts - 16 through 30 (of 37 total)
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  • #85819
    gavin
    Moderator

    Great news Porter! Thanks for sharing that with us all. And yes, your surgeon sounds ace, no wonder you love her! Hope that you have a great Christmas with your family.

    Hugs,

    Gavin

    #85818
    anrena18
    Participant

    Dear Porter,

    I’m so happy for you. Happy holidays to you and your family.

    Serena

    #85817
    darla
    Participant

    Porter,

    So glad to hear all of this. Now relax and enjoy the holidays and birthdays with your kids.

    Hugs,
    Darla

    #85816
    marions
    Moderator

    Porter……excellent news – wonderful timing. Thrilling to know that your Holiday is that of a wonderful occasion exactly as it should be.
    Hugs and love,
    Marion

    #85814
    iowagirl
    Member

    Porter….Hooray!!!! Wow…I love your surgeon…..she’s got your back big time. Enjoy, Enjoy, Enjoy this time with your family/kids. I couldn’t be happier for you. Big hugs!

    Julie T.

    #85813
    lainy
    Participant

    YIPPEE, Porter, YIPPEE! Your ONC sounds amazing and hurrah for her! It will now be a great Christmas with 2 Birthdays added in. Wonderful celebrations for a great comeback! Only wish you were coming here to see your brother. Enjoy, enjoy!

    #85815
    pfox2100
    Member

    Thanks all for your support. I am in a better frame of mind now that things have “settled” a little. MY surgeon came back to work and was quite upset when she found out my case was brought to the board while she was gone. So she re introduced my case when she was back and brought it back to the board so she could be a part of the large discussion. (I love her)…her his is response to me that was written “here’s the verdict: one lesion completely disappeared. One grew by possibly 1mm which is the size of a tiny pin head, and could also be a variable error. She agrees there is nothing to worry about right now and should get a scan in 2 months instead of 3. From the surgeons mouth as well “please tell Porter I am on her side and by her side every step of the way. Do not worry”
    So this made me feel more at ease. i trust my surgeon with my life and take her words very seriously. So I am trying to put all this cancer stuff on the back burner for now and trying to just relax and enjoy my holidays and time with by 2 wonderful little kids (who also have birthdays within weeks of each other and Christmas this month) and savor all these moments while i can. Again, thanks everyone for the support. Happy Holidays to all.
    Love and blessings,
    Porter

    #85833
    wallsm1
    Participant

    Porter,

    I’m so sorry to hear of the uncertainty. That can be so frustrating.
    I don’t really know what should be done but I think it sounds like your Dr’s have a reasonable plan. Please keep us posted .

    Take care,

    Susie

    #85832
    kvolland
    Participant

    I am with Duke.
    Although having been down a similar road with Mark this year it’s easier said than done. His Ca-19-9 went up drastically in September which scared both of us…..maybe even me more. Our Onc had us come back in two months to redo the scan and lab work. In November it was not normal but was half of what it had been so no worries.
    I wound try really hard to just put the information and worry in a drawer then lock it up and throw away the key. Dig into holiday prep and try to forget it.

    Hang in there,
    KrisV

    #85831
    iowagirl
    Member

    Ditto what Duke said.

    #85830
    dukenukem
    Member

    There are two things I like about having a plan:
    1. I know where we are going and what’s going to happen next – like having a map instead of just driving aimlessly and hoping you get where you want to go.
    2. I can follow our progress and know what’s going to happen next. I’m all for spontaniety, but it has it’s place. This is not one of them.

    Duke

    #85829
    lisacraine
    Participant

    Porter,
    Please call me if you want to talk. I think Duke has outlined a great plan. I know when I had new tumors after liver resections we used SBRT successfully, maybe ask about this type of radiation.
    Hugs
    Lisa

    #85828
    pfox2100
    Member

    Duke, thank you so much for you input and words. You are really helping me through this more than you know. I have brought up the other ideas of PET, you know ONC said it’s so small that she thinks activity would even show negative on a PET scan. I have had MRI’s all along and the team feels this is best to continue and compare. I had such an awful experience the first time around being misdiagnosed and my mind trickles back and I start feeling those emotions of being so angry and scared. I am trusting in the fact that I am in much better hands and as my surgeons assistant sent me via text the other day “the team is watching you under a microscope every step of the way, I’ve been through so much and to keep fighting, and never stop. We are all fighting with you more than you know.” After hearing that I felt more at ease and realized I need to trust and let go and regardless things will be okay. I am trying to trust in what they say and they do know best. I do realize others have it off worse and I just hate that any one of us has to deal with this disease, or any cancer of any kind. But again, thank you so much for your support. I am going to do my darn best to enjoy this Christmas ( I really thought last year was going to be my last) and my 2 wonderful little kids, and try to put this on the back burner for now. Hugs and blessings to everyone. Lots of love.
    Porter

    #85827
    dukenukem
    Member

    There is debate about which is better – CT or PET or MRI. Would they consider doing the other type of scan? Maybe a sonogram/ultrasound?

    How often are they planning the blood work? If you decide to go that way, get them to commit to a definite set of action numbers – if this parameter reaches xx, then we will do xxxxxxxxx. The doing could be a scan, more frequent blood work, or something else. Or maybe a couple parameters need to reach an action level, not just one. Being an engineer, I always wanted action numbers in advance rather than making it up as we went along. Takes away all the “discussion” in the heat of the moment – everyone has agreed what to do and when.

    Porter – I read your first posts. You have come so far and are so much stronger than you were a year and a half ago, it’s incredible.

    Read your “signature” – “Hope, love, strength…2013 and for the years to come, Porter.” This looks to me like a little speed bump, certainly not what you had last year. Your standards and expectations are so much higher now than they were because you have been to the top of the mountain and know what that feels like. You are by no means back in the valley. The team has a plan, I’d say follow the plan. They are not closing their eyes to your condition. As for the holidays, I was overjoyed last December when my scan showed that my main liver tumor had shrunk to 10 cm – it’s a matter of perspective.

    Action Plan:
    1. Let your surgeon review the scans and hear what she has to say.
    2. Ask whether other scan types may help define any conditions.
    3. If she has no issues, set up a schedule for blood work and what to do if certain levels are reached.
    4. Enjoy your family and the holidays.
    5. Get your next scan in February and act accordingly.

    Duke

    #85826
    pfox2100
    Member

    Hi guys. Need advice. SO the multi team met. They still aren’t sure what we are looking at. All blood work and ca 19-9 looks gorgeous. Like I said the spot is 9mm. However what they are telling me to do is wait. I am supposed to sit and wait and we will re scan in 2 months instead of 3. Should I accept this? I asked about surgery and my onc said that well, it’s in a bad spot. I think she meant or clarified this was due to my previous resection. She said the surgery would again be extensive. I am guessing they are saying no to surgery as of now because this could still be nothing and they are not wanting to open me up for such a surgery if there is no need.? She also said as far as the imaging, this spot has no washout and is only showing up on one set of images (angles) rather than all angles including aerial and whatnot. And that is showing to be a positive aspect. CC is not time friendly with us. My surgeon who always looks at my scans has not had a chance to look at it yet but will as soon as she can and is back at the office (out of town). But does this seem like a reasonable plan? Continue blood work, and wait for 2 months? Ideas? Thoughts?

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