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  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    BlueKoala,

    I know just how you feel. When I was first diagnosed, my oncologist told me that with all my factors, size of tumor, grade, HER2 status, etc., I had a 20-25% chance of recurrence.That was one year ago. I've since been through surgery, chemo, rads and only one more Herceptin treatment to go. I still feel like I am in the middle of everything and sometimes think I will for sure be getting this again, whereas really, I have a 75-80% chance of NO recurrence. Just within the last few weeks, I have been getting deep pains in my hip and so naturally am worried about mets to my bones. (waiting for results of X-ray).....When will it end? I am hoping, as some people have said, that with time I will worry about it less. It does make me very annoyed and even angry that most people think breast cancer is "curable" especially if caught early. Well mine was caught "early" and I have to live with this possibility now for the rest of my life. It sucks! As to why some people recur and others don't, there is still so much we don't know. I've been doing some research lately and it is interesting how cancer can recur even if it's all been surgically removed, zapped with chemo, radiation and all the rest. Here's a link to a really fascinating article. https://www.newyorker.com/magazine/2017/09/11/canc...

    The author of this article also wrote the book "The Emperor of all Maladies: a Biography of Cancer," which is also fascinating and discusses breast cancer a fair bit. I highly recommend it.

    Best of luck to all here.

  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    Here are a couple more articles if you are interested:
    https://breast-cancer-research.biomedcentral.com/a...

    http://optimalterrainconsulting.com/can-cancer-met...

    Interestingly, the second article also talks about "terrain," similar to what the New Yorker article talks about.

  • cive
    cive Member Posts: 709
    edited September 2017

    runor, me too.  Hmmm never thought of the beer and yoga thing...

  • Nkb
    Nkb Member Posts: 1,436
    edited September 2017

    Fiddler-Thank you for the fascinating articles

    BlueKoala- As someone with a poor prognosis albeit no lifestyle choices to account for it-I worried a lot-it is natural. Trying to stack up all the good outcome stats and profiles vs the bad outcome profiles is a scary task which does not take you as an individual into account. The article about the host (I'm a permissive host it turns out) vs the tumor makes a lot of sense.

    I have recently progressed to bone mets after about 5 years-far longer time without progression than had been predicted. Why? who knows? If I had known I was going to have 5 years- I would have kept working, but, then I would have missed some wonderful trips.

    No one can tell you not to worry-but, if you can put the worry/grief/fear aside after your daily visit with it, I think you will be happier.

    Yoga, exercise, makes me feel better.

  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    Nkb, Just curious, why do you say you are a permissive host? I just read something that said having osteoporosis makes you more likely to get bone mets. I have osteoporosis, due to a bone marrow condition that I have (which also makes me wonder if I will be a "good host"), so wondering if this will all mean something for me.

  • Nkb
    Nkb Member Posts: 1,436
    edited September 2017

    Fiddler- it was slightly a joke-just thinking that all of us with cancer are permissive hosts or we would have fought it off. After the AIDs epidemic we saw that previously healthy people were getting all sorts of weird cancers that were only seen rarely in the sick elderly. We are exposed to all sorts of things including cancer that we fight off. The article you posted talked about aiming therapy toward us not being such great hosts for the cancer instead of all the therapy being aimed at the cancer cells.

    I don't know anything about osteoporosis and bone mets, I did not have osteoporosis, but, at the time of my chemo it was thought that using Zometa in postmenopausal woman would slightly decrease their chance of bone mets- it didn't work for me, and I think the lastest studies have shown that it doesn't work for that. It seems to be somewhat of a "crap shoot" to use a scientific term.

  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    nkb--thanks for your answer. I am nearing the end of my treatment, I only have one more Herceptin left, and for some reason am imagining all sorts of dire possibilities. I'm realizing that things have changed with how I see the world, and that is a real adjustment! I worry a lot about the HER2 positive thing, despite being on Herceptin, the doctors said my cancer was "aggressive." Hoping soon I can start to forget about all these worries, if it's going to happen, it's going to happen, not much we can do about it

  • Nkb
    Nkb Member Posts: 1,436
    edited September 2017

    Fiddler- You have probably already heard that when you finish active cancer therapy you often go to a dark place for awhile. When you are in active therapy you feel like you are doing something against the cancer-you are around nurses and doctors reassuring you and suddenly you are alone, wondering what you can do to keep the cancer away. You also can't help but worry-you think twice about planning something a year away like a trip or something. It is normal. I don't know if you have access to a support group or a therapist-that can help. I think what is hard sometimes is knowing that your family and friends are even more scared than you sometimes, so you want to keep some of your anxiety to yourself just to spare them. I think I spent too much time worrying about it-not that I could help it.

    What you actively can do to decrease recurrence is exercise, yoga, eating well, being kind to yourself and others. Plan a trip, buy yourself your heart's desire, adore your family. Then when you worry- do it for 15 minutes and then put the worry in a box and visit it tomorrow for 15 minutes.

    I also have several friends who don't know about my cancer- when I get together with them it's not a topic of discussion-no "How ARE you?" I never use the "cancer card" to get anything. I just feel better and more valid that way.

  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    nkb, Thank you for your very wise words!


  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited September 2017

    Hello Fiddler

    You'll see we have similar stats and have had similar treatment. I'm just five years ahead of you!

    All the appointments and treatment can feel a little overwhelming at times but think about how well you have done to get through all that.

    Give yourself a well-deserved pat on the back!

    Alice


  • Fiddler
    Fiddler Member Posts: 128
    edited September 2017

    hi Alice, thank you! Nice to hear a positive story from someone like myself.


  • EDL0516
    EDL0516 Member Posts: 5
    edited September 2017

    Have been feeling the same way, I had extra time on my hands before my echocardiogram and started looking at statistics. My oncologists have been pretty optimistic, but I can't wrap my head around the idea that I don't know if I will have a recurrence or not.

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