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PET scan shows lit up chest lymph nodes after 4 years NED

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barbaraa
barbaraa Member Posts: 3,548

I would be 4 years out on 4/28 but rising tumor marker tests made the onc order a PET. So there was one barely lit clavicular node and they decided to biopsy it yesterday since it was very easy to get to. They couldn't find it. So the next step is knock me out and get a lung doctor to go down my airway to biopsy them. This is so frustrating. Anyone have recurrence to lymph nodes in the chest? The hilar and medastinal ones are lit up strongly with SUV 9.2.

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  • Mausie
    Mausie Member Posts: 12
    edited March 2014
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    Hello Barbara!

    I just want to say how sorry I am that you are going through this, especially after thinking you were going to be free of disease after four years. I haven't had a recurrence to lymph nodes in the chest, but I did have a regional recurrence with a completely different new tumor, and this was after seven years, so I have experienced the disappointment after thinking I had beat it. So I just want to tell you to take a deep breath, put one foot in front of the other, and keep on going, keep on being positive. Most of all, I wish you the very best of luck. 

    Mausie 

  • bevin
    bevin Member Posts: 519
    edited March 2014
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    Hello Barbara, I am so sorry you are going through this. I dont have any insight but know others will be along soon who have had a similar experience.  Good luck, I hope all goes well.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Thanks all. This is so frustrating because everything takes so long. At least I still have my good insurance. My company is having open enrollment in May and I dread it.

  • BabyRuth
    BabyRuth Member Posts: 107
    edited March 2014
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    Barbara-We all know waiting is the hardest part.  Hoping that you get answers quickly.  My tumor markers went up last year and the PET scan revealed the cancer recurrence in my lymph nodes(not chest).  I went through surgery again, chemo and now another year of herceptin.  Just know that you can fight it again if you have to.  Sending prayers for good results your way!   

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2014
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    Oh, Barbara, I am sick to read that you're going through this.  You will be in my thoughts & prayers.   Big (((HUGS))) to you,  Deanna  

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Thanks everyone. Oh Deanna, thank you so much. I just hate this crap. My stupid doctor STILL hasn't called me since the non-biopsy at 8AM Monday. I even called yesterday and asked him to call me. Nada. Sigh.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    I have faced the fact that it is either breast cancer or lung cancer because of where the nodes are. Sigh. I need to have a plan!!

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hi Barbara,

    You've been on my mind lately.  I was so hoping everything was going well for you.  I am so sorry to hear this news about your lymph nodes.  I hope you hear something from your doctor soon.  Do you know when the biopsy will be?

    This sucks.  I hope so badly it's not cancer.

    I'll keep you in my thoughts and prayers ... and remember the happy time we spent together in Canada.  Give your DH a hug for me as well ... I bet he's pretty anxious about this too.

    love and hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Oh Bren, thanks so much. The onc's office just called and said he had put my case in front of the tumor board and he is calling me this afternoon after his morning patients to tell me what they said. Whew. Anxiety.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    OMG .. Barb ... so glad you're going to hear from the doctor this afternoon.  How about if we wait together.  I know you must be very anxious right about now.  How's Marty holding up?

    Wish we could pass the time together back at that winery in Niagara.  What was that stuff called that was so sweet? Was it ice wine or something like that?  I remember you did a fabulous job of navigating while doing all the driving up there!  Except for going over the bridges .. ha!  You didn't like those at all.

    Hope I've been able to divert your attention a little bit.

    I'll check back later today and see what's going on.

    love and hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    image

    Thanks Bren. That trip I remember very fondly. It was great meeting everyone and the icewine was soooooo good. Yes, I really do hate bridges. And that is hysterical since Marty and I moved last year over the skyway bridge. I am kinda getting used to it.


  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hey Barb .. thinking about you this afternoon.  Can't believe you have to travel that big bridge all the time now!

    I'll check back again in a little bit to see if you've heard anything.

    love and hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Hi Bren, thanks for checking. No call yet. Doubt I will get one today since it is almost 5.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    He called. He spoke w/several other docs and they all are agreed that rather than do the traumatic surgery down my airway (major surgery), he wants to wait 8 weeks then do a CT scan to see of they grew. Then do a CT-guided biopsy. None of them want to treat me until we know for sure what we are dealing with. So I wait. Hoping the nodes are lit due to an infection. Winking

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hey Barb,

    I'm glad to hear the doctors feel they can wait 8 weeks and then do another scan.  I hope so much those damn lymph nodes shrink back down to normal size and that everything will be okay.  Sucks though that you have to wait another 8 weeks.  Waiting is really hard.  Good thing too they didn't want to do that invasive surgery.

    Stay close and we'll all wait with you.

    hugs,

    Bren

  • 208sandy
    208sandy Member Posts: 582
    edited March 2014
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    Hey Barbara - just saw your post(s) - hate that you're going through this - it is entirely possible that your nodes are indeed enlarged because of an infection so I'm going to think positively for you until......I have always heard that PET scans light up everything like a Christmas tree so perhaps that's it - I hope so anyway.  Good to "see" you.  S.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Thanks Bren. Hi Sandy! Thanks. I am hoping eight weeks make them go away!  Good to 'see' you too!

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hi Barb ... hope you're feeling a bit better today.  Eight weeks seems like a long time to wait, but I think the time will go by quickly.  We'll wait with you and hoping the  nodes behave!

    hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Yes, 8 weeks is a long time. Whew. Thanks for waiting with me.

  • bluedahlia
    bluedahlia Member Posts: 302
    edited March 2014
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    I'm waiting too and hoping for infection related nodes!  Fond memories of our Niagara trip here too.

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Hi Blue. Good to 'see' you too. I would love to do a trip there again. Staying at the school was cheap and right in the middle of wine country? What could be more perfect!

  • kad2kar
    kad2kar Member Posts: 45
    edited March 2014
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    Barbara--just a note to send good thoughts and hope for good results.

     kad2kar  (strange)

  • denny123
    denny123 Member Posts: 1,483
    edited March 2014
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    Barbara - sorry to hear this.

    I was Stage 4 from the get-go with liver mets.  But had 6 years of remission while on Herceptin only.

    Had recurrence in supraclavicular node, prevascular and retrosternal 2 years ago.

    I tried Aromasin for a few months, didn't work, then on to Faslodex lovely butt shots (which I am still on), didn't work....on to Gemzar with Herceptin with Faslodex for 8 months. (had 80% reduction after 4 months, but it quit working after that).

    Now on Kadcyla or TDM1 again with Faslodex.

    So you do have a lot of options for tx.

    Good luck!

  • pip57
    pip57 Member Posts: 7,080
    edited March 2014
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    Barb, we were just down in your state and I was thinking about you and wondering  how you were doing.  So sorry to hear that the anxiety button has been pushed again. There will be a lot of us sending healing vibes your way over the next 8 weeks.  

    Bren, yes, it was ice wine.  Good stuff. 

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    THanks for the encouragement Denny. I am hanging on to hope that it is infection. Not likely but it's something.

    Hi PIP yes that ice wine was yummy.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Morning Barb,

    Just wanted to stop by and let you know I was thinking about you.  It's good to have company while the waiting begins.  I hope the next few weeks fly by and the nodes behave themselves.

    love and hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Morning Bren. I plan to keep busy so I don't dwell on this. Today is catch some rays by the pool day. Tomorrow is an antique car show followed by dinner with friends. Then work always keeps me busy.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hey Barb .. glad you've got lots going on.  Is Marty still playing in the band?  Love their music.  I am so jealous that you are laying by the pool today.  Spring hasn't arrived here yet.  And I am so pale!

    I'm glad your job is keeping you busy during the week.  Does it require a lot of travel?

    I'll check back with you soon.

    love and hugs,

    Bren

  • barbaraa
    barbaraa Member Posts: 3,548
    edited March 2014
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    Hi Bren, no not a lot of travel. I mostly work from home which is great. Yes Marty still plays and loves it. I went to see them last week. Spring has sprung here. I planted my garden yesterday with peppers, cantaloupe, basil and rosemary. Rosemary is a perennial here.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited March 2014
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    Hi Barb,

    Sounds wonderful to be able to do a little gardening.  The only thing blooming up here are the daffodils.  Winter has really lingered on here.  The cantaloupe sound really good.  I haven't planted a "food" garden in years.  Just didn't have much luck with anything except the zucchini.

    Glad to hear Marty is still playing and lovin' it.  He's really talented. And it's great to hear you are able to work from home most of the time now.  All that travel in the last job was horrible.  Only good thing about it was all the free miles you amassed.

    It's raining and cold today ... need to get to the store.  Just wanted to check on you this morning.

    love and hugs,

    Bren