PET/CT scan: Update and plan

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lesvanb
lesvanb Member Posts: 905
edited March 2014 in Colorectal Cancer #1
Hello all

Off to SLC and the Huntsman for my follow up PET/CT to take a look at the 2 suspect lung nodules and one lung lymph node at 11:30AM tomorrow. This is a difficult one because in one quick look I can go from NED status 2 years out to incurable. I recognize that I'm not alone in this category, though I really, really wish none of us were in this category. On the one hand I feel calm knowing that I am doing all that I can to make my body an inhospitable host for cancer, and on the other, much is out of my control with this cancer beast. This is what it must feel to walk the razor's edge. The Razor’s Edge is a book by W. Somerset Maugham published in 1944. Its epigraph reads, "The sharp edge of a razor is difficult to pass over; thus the wise say the path to Salvation is hard." taken from verse in the Katha-Upanishad. Mostly I have taken comfort in this excerpt from Letters to a Young Poet by Ranier Maria Rilke Letter 8 "So you mustn't be frightened, dear Mr. Kappus, if a sadness rises in front of you, larger than any you have ever seen; if an anxiety, like light and cloud-shadows, moves over your hands and over everything you do. You must realize that something is happening to you, that life has not forgotten you, that it holds you in its hand and will not let you fall."

We leave early in the morning for the 5 hr drive and it should be a nice day traveling across the SW part of Wyoming before dropping down into NE Utah. Yesterday my husband and I and our 3 horses and border collie returned from a 3 day pack trip into the Winds right here. The weather has turned and fall is very present up high though we never got rained or snowed on while we were riding. Our highest pass was 10,400' which gave us a great view of Wind River Peak, the highest peak in the Southern Wind rivers (second highest in WY), and the surround. We found good camps with good feed for the horses. Yesterday morning a cow moose was in camp licking on a salt block and I got to watch her from the tent wrapped in the sleeping bag while sipping coffee. Hanging out in the woods was a great way to take my mind off scans.

My love to all,
Leslie

*UPDATE*

Well it's a bad news/good news things. As we were all hoping for the nodules to disappear, they didn't but only one grew to 8.8 (2mm growth) and now there is a 6+ uptake in the one that 2.8 uptake before and another has a 4+ uptake. The radiologists says 80% chance they are cancerous. So I guess if they're going to be there, it could've been worse and I'm grateful for the slow growth. However I likely now have progressive disease in the lungs and am not a surgical candidate. I will go ahead with the VATS lung biopsy, probably Sept 29 at the Huntsman although both mets (one upper left, one lower right) are under 1 cm and may or may not be big enough yet and they are not in a good position for needle biopsy.

Of course this is deflating and depressing for me. The one shining light is that my CA doc sent off my records to the docs at the University of Kansas Medical Center, Integrative medicine who have been doing IV Vitamin C therapy and also have a clinical trial going. The doc there thinks I am the ideal candidate for this therapy because IV C specifically addresses metabolic changes and my mets are small. I am not going to Kansas City to participate in the clinical but would like to follow the protocol here in WY (though it will be a challenge to find the willing docs). I can always got to CA to start the therapy with my doc there. The therapy does not interfere with chemo if I have to got that route (likely) but can enhance it. Perhaps down the road surgical procedure of some sort would become available if mets shrink or disappear.

Here is the link to info for University of Kansas IV C therapy

http://integrativemed.kumc.edu/ivvitaminc.htm.

Love to all, and much gratefulness for all those who have shared or are sharing info on CRC lung mets and therapies.

Leslie
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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Leslie hope just a false alarm!
    Incurable Why? who say that after chemo surgery or anything you can't be NED again?
    Many interesting testimonials here of net after 2 recurrences!
    hope to be one of them!
    best vibes!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Leslie
    I want to wish you great success with the scan + good travelling conditions on your way there + back. It sounds like a beautiful trip; I have never been in that neck of the woods.
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
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    AnneCan said:

    Leslie
    I want to wish you great success with the scan + good travelling conditions on your way there + back. It sounds like a beautiful trip; I have never been in that neck of the woods.

    Leslie
    SENDING GOOD VIBES FOR TOMORROW.


    michelle
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Precioso viaje Leslie!
    Tres dias a caballo ,3500 metros?
    Leslie estas muy sana es evidente no te preocupes !
    Un beso y buena suerte!
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    beautiful Wyoming
    Hi Leslie,

    I am picturing beautiful Wyoming now after reading what you wrote. Part of the the Winds river (I think that's it) runs through my husband's aunt's property in Dubois. We spent some time there and on another uncle ranch there two summers ago. It is so beautiful!

    I hope and pray all goes well with your scan- definitely a big deal to get done when you have to drive 5 hrs one way to get there! You take care and I'll be looking for your post after you get your results.

    Lisa
  • ktlcs
    ktlcs Member Posts: 358
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    lisa42 said:

    beautiful Wyoming
    Hi Leslie,

    I am picturing beautiful Wyoming now after reading what you wrote. Part of the the Winds river (I think that's it) runs through my husband's aunt's property in Dubois. We spent some time there and on another uncle ranch there two summers ago. It is so beautiful!

    I hope and pray all goes well with your scan- definitely a big deal to get done when you have to drive 5 hrs one way to get there! You take care and I'll be looking for your post after you get your results.

    Lisa

    Leslie
    That trip sounds awesome and I am so envious now that I no longer have my horses, I need to get back into it I think. Best of Luck tomorrow, hopefully there is nothing there, this is just a false alarm and you will remain NED.

    Take Care

    Kathy
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Leslie
    Leslie,

    I am praying that you have a safe and uneventful journey tomorrow and that you have great news from your doctors. When will you get the results from your scans? Please post when you are able.

    I am very envious of your pack trip. I have been throwing around the idea of doing an equi-share at the local barn so I can get back into riding. No time like the present...

    Amy
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Wonderful trip you had
    Dear Leslie,

    Good luck with your scans and hope that things are not nearly so bad as you might think.

    As for being incurable, yea cancer is that at the moment, but that doesn't mean that we can't live a long life.

    I think we often take the meaning of NED to mean that we are cured. Unfortunately that is not the case. Some folks have only a single occurance of cancer, some have many. Are any of us ever cured? I don't think we can have a definitive answer to that until we know how to stop cancer from occurring.

    There are many cancer survivors who have lived long lives after diagnosis. Keep it in your mind that you just might be one of those who can do it too.

    Have a safe trip and hoping for best possible results on the scans.

    Marie who loves kitties
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Praying
    I'll be praying for you! Hope it turns out to be PERFECT!

    *hugs*
    Gail
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    PET/CT Tomorrow
    Good luck tomorrow. I hope the suspect areas in your lungs show NO uptake and are just benign issues. I know too well how you feel right now. It isn't fun. Getting results from one test that just mean you need another test, and waiting for the results from that one... But in the end at least we get answers and know how to proceed. I hope your answers mean you proceed by going back to living life just as you have been, and getting your next scheduled CEA or scan in several months.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    Leslie
    I am holding you in my thoughts and prayers. May everything go well for you tomorrow my friend.

    Aloha,
    Kathleen
  • lesvanb
    lesvanb Member Posts: 905
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    Bump
    the only way I could figure out to post it today.....:-)
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Leslie
    Leslie,

    Not quite the news we were praying/hoping for. But, you decide your method of attack on the little buggers and then you will execute your plan. The Vitamin C route sounds very intriguing and hopefully will be a great complement to the chemo treatments you may startup again. My question, however, is why exactly surgery is not an option. I have read of others with multiple lung mets having them removed simultaneously so not sure why you can't have these 2 just zapped with chemo and removed. I, as always, keep you in my thoughts and prayers.

    Amy
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Sorry Leslie
    Sorry Leslie,

    I know this isn't what you were hoping for. I am glad growth is slow + know there will be a plan of attack on those little buggars. Thanks for updating us. Take good care.
  • damama24
    damama24 Member Posts: 174 Member
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    AnneCan said:

    Sorry Leslie
    Sorry Leslie,

    I know this isn't what you were hoping for. I am glad growth is slow + know there will be a plan of attack on those little buggars. Thanks for updating us. Take good care.

    leslie
    Wish the news had been all good. It was intresting to see about the clinical trial at the University of Kansas. I live in Kansas and get treatment at the University of Kansas Cancer center. The drs there are great, I hope you are able to participate in the trial from your treatment center near home. Best of luck to you.
    Deb
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    Not the news
    Not the news we wanted to hear. I'm so sorry. What a shock to be two years NED and then have new growth. Cancer sucks!

    I hope that you become eligible for surgery at some point, or maybe whatever treatment path you choose will just kill them off w/o surgery.

    Stage IV doesn't mean incurable. It just makes the odds a little tougher.

    Hugs and positive vibes sent your way.
  • Kerry S
    Kerry S Member Posts: 606 Member
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    With your attitude
    Hell, with that slow growing crap you can focus your body’s warriors to that area and kick some cancer butt. With your attitude I know you can and will handle this battle well.

    Kerry
  • HollyID
    HollyID Member Posts: 946 Member
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    I haven't read the replies,
    but am curious why you're not a surgical candidate?

    Also, I love plans. The Vitamin C infusion is intriguing.

    Wishing and praying for you always, dear.

    Love and Hugs,

    Holly
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry
    Sorry you received this news. It's not the news that we would be hoping for but you said it was small so hopefully the doctors plan of action will kill those cancer cells all together. Good luck in your upcoming treatment and appointments.

    Kim
  • Paula G.
    Paula G. Member Posts: 596
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    Sorry Les
    Sorry that the news wasn't what you (we) hoped for and sorry that we couldn't have been at the Huntman to see you and Dave. Both John and I wanted to be there good or bad.

    We did here about the IV vitamin C treatment from a doc here in Salt Lake. He had never done it before but gave us a paper on it and I am looking for it now. It seems like it was a Doc in CA but can't really say for sure until I find the paper. The guy we saw here didn't really give John or myself a really good gut feeling. Not about the treatment but about him!

    We will be up to see you when you come for biopsy barring any unseen problem. We ar gratefull to you for sharing and being our friend. Paula