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Update

jazzgirl
jazzgirl CSN Member Posts: 254 Member

Well. I reported all clear in June but things change in the blink of an eye. On a completely unrelated scan, an enlarged lymph node was discovered. Not the results we were hoping for from my biopsy: Kidney cancer cells (diagnosis and surgery 9 years ago) have resurfaced. I had a CT scan of pelvis/abdomen tomorrow and a brain MRI yesterday and will see an oncologist on Tuesday the 12th (the day my wife and I were supposed to return home to Ireland.) I'm really hoping no further involvement shows up in those scans.

So. We still don’t know what my treatment will be until we see the oncologist, or where I would do treatment (Iowa or Ireland). We're taking a break this weekend to see our son and daughter-in-law, then back to clinical reality.

As always, I so appreciate all your messages, prayers, light, energy, support in all kinds of ways. And as with my first surgery, I ask that there be no militaristic, battle, fight, etc. language about it. I will live into and through this, loving my body as it is. Take care ~

Comments

  • stub1969
    stub1969 CSN Member Posts: 995 Member

    Tough news, Jazz

    I think I can speak for the group; we're hoping, praying, sending positive thoughts, and energy your way as you embark on this new journey.

    Keep us posted on the outcome of your meeting on Tuesday

    Wishing you only the best!

    Stub

  • Allochka
    Allochka CSN Member Posts: 1,091 Member

    This is tough…

    Dear Jazz, hold on! Fingers crossed that only lymphnode is affected, and the rest is clear.

    And treatments work wonders these days!
    Hugs,

    Alla

  • jazzgirl
    jazzgirl CSN Member Posts: 254 Member

    Thanks Everyone - we met with the oncologist and the preferred treatment seemed to be surgery to remove the lymph node, then a followup CT scan every three months, which would let me go home to Ireland. But they thought they saw a couple more places they want to investigate through an MRI today. So more information after that. I have a consultation with cardiothoracic surgeon on August 26th, then who knows how long until surgery. I'm in waiting mode for a while. Take care All ~

  • stub1969
    stub1969 CSN Member Posts: 995 Member

    That "waiting mode" is so tough, as you know, Jazz. We're here for you!

    Stub

  • donna_lee
    donna_lee CSN Member Posts: 1,063 Member

    A year after the BIG surgery, an enlarging node was found, biopsied, removed; then back to every 3 months for CT's. Year 3, same routine, then a PET scan of my lower abdomen/pelvis. It was positive- and the third surgery. Those years 2006,7, & 8 made me feel a lot older than I was at that time.

    1 and a half years ago, I got a letter from my Oncologist. He was retiring, and also, I didn't need be followed by oncology, just my regular doctors. I'm 82, refuse to act my age, still have my job, and manage my property by myself. (Husband died on 1/1/24-fell & hit his head on the concrete floor)

    There is hope that a single lymphadenectomy, (or 2) will work. Hopefully, yours will succeed and you'll be smiling.

    Good luck and hang in there.

    Donna

  • Allochka
    Allochka CSN Member Posts: 1,091 Member

    Yes to all Donna said! I was going to retell her story about dealing with it with surgery alone and now out of even oncology surveillance…. But it is sooo much better to hear from Donna herself.

    Let's hope surgeries will keep you NED again.

    And Donna, so sorry to hear about your husband :-(

  • jazzgirl
    jazzgirl CSN Member Posts: 254 Member
    edited August 21 #8

    Thanks to all of you for our comments and personal journeys. They now want to biopsy my liver - not scheduled yet. I have consults Tuesday with a cardiothoracic surgeon (lymph node) and a radiation oncologist (I presume for the unbiopsied liver). We'll see where we go from there. Also will take advantage of a counseling program offered by the University. More later! Take care ~

  • donna_lee
    donna_lee CSN Member Posts: 1,063 Member

    Hey, that was part of the original surgery, as the cancer was stage 4 and had already spread to the left lobe of my liver. That was removed and numerous "just cysts" in the right lobe were biopsied. And the set of nodes behind the R. Kidney (2 of 11 were positive.) I was in OR for 11.5 hours. That's my excuse for Memory problems at times. :)

    Hang in there.

    More good news. My granddaughter is on the Oregon State VB team. She played a lot this past Saturday and they beat UO 3 sets to 1. Except my sitting muscles are tired. 3+ hours up, sit in no AC gym, 3+ hours back. It was worth the trip. Of course, my husband and I both graduated from Oregon State. !!

  • jazzgirl
    jazzgirl CSN Member Posts: 254 Member

    It's been a long wait to get the liver biopsy - finally done late this week and unfortunately renal cell cancer showing up in the little (1.5 cm) spot there. So - sounds like no surgery on the lymph node, since it is now multi-site. Waiting for a plan after the various docs gather. And an aside to donna_lee - I looked up the OSU volleyball team and they are having a good year! Thanks eveyrone for hanging in here with me. Take care ~

  • stub1969
    stub1969 CSN Member Posts: 995 Member

    I've been waiting for news about the biopsy—-tough news to hear for sure. As you know, you've got some excellent doctors working with you. I'm hopeful you'll be able to return to Ireland and still receive this excellent care. Reach out if you need anything.

    Prayers and blessings.

    Stub

  • Allochka
    Allochka CSN Member Posts: 1,091 Member

    Very sorry to hear… I remember that Smart Patients portal was recommended here for more challenging situations, perhaps you could check it as well.

    Thinking of you,

    Alla

  • Deanie0916
    Deanie0916 CSN Member Posts: 641 Member

    Jazzgirl hope you are getting direction and hope. Prayers for you as you move forward.