Biology determines everything

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Double Whammy
Double Whammy Member Posts: 2,832 Member
edited September 2011 in Breast Cancer #1
Now, let's see if I can get this right - and I'm going to ramble:

I attended an advanced training course for peer navigators yesterday. A medical oncologist spoke to us about all things breast cancer. The thing that stood out most to me was his statement: "biology determines everything" - getting cancer, response to treatments, whether one has a recurrence, etc. He said that while type, stage, and grade does tell them a lot prognostically - it doesn't determine what your particular outcome will be. And they don't understand why. Ok, knew that - that's why we all have followups, right?

What surprised (maybe that's not the right word) most in the room was his statement that whether a cell or two develops the ability to travel from the original tumor site is not related to clear lymph nodes, clear margins, stage or grade. The ability of a cancer cell to break away and travel is a different mechanism than hanging around in the hood and replicating itself - and they don't know what that is or when or what makes that happen. I didn't know this. I thought there just got to be so many cells, some of them had to go somewhere else. This sort of explains why there is never any guarantee that surgery "got it all". They hope it did and they do know that certain types are more likely to metastasize than others. So years down the road if someone develops metastasis in a distant organ, was it there since the getgo even if nodes and margins were clear and/or how/why did it put on its walking shoes and go traveling and plant itself wherever it did? They figure breast cancer takes about 10 years to develop into a tumor that is palpable or that shows up on a mammogram. How long did that stray cell sit in that distant organ before it replicated enough times to cause havoc? And if someone dies at age 100 of old age who had breast cancer a gazillion years previously, was she actually cured or would it have recurred when she was 101?

He said that passage of time is good in terms of recurrence statistics, but they always say "in remission" because they don't understand how one's individual biology effects the stupid cancer cells. There was a 26-year survivor in the group who commented that she'd always thought of herself as cured. He said "No, you're in remission, but please, continue to enjoy your life!". There was a 3-year IBC survivor whose docs have no idea why she has not had a recurrence. A 6-year survivor who developed leukemia from the chemo. Swell. A 10-year triple negative survivor. And on and on and on.

He didn't think it would happen in his practicing lifetime, but down the road as they learn more, patients won't be diagnosed with breast, lung, colon, etc. cancer but will be diagnosed with cancer qrsxyz or abcdef in a breast, lung, or whatever. Treatments will be targeted specifically to qrsxyz or whatever. He also said that didn't mean there wouldn't be side effects . .

He was an excellent teacher, able to teach at our level.

I thought of Eileen and her 22-year remission and response to treatment for her recent recurrence. I thought of Linda and her all-too-soon recurrence. All the individual types, stages, grades, ages and treatments on this board. All individual journeys in spite of seemingly the same diagnosis and prognosis.

And our friends and loved ones have the audacity to say things like "is this all you talk about"? Most of us are naive at diagnosis, and they have no reason but to remain naive. I'm sure I would have had I not had cancer. I wouldn't know as much or be involved in some of the activities I now am if I hadn't had cancer. I wouldn't know you if I hadn't had cancer. Cancer sucks - and it changes us and it can broaden our horizons as well. This is where I am today and today it's more than ok with me.

Suzanne

Comments

  • mamolady
    mamolady Member Posts: 796 Member
    #2
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    Suzanne,
    Is there a website
    Suzanne,
    Is there a website or class information on this? Or can you give the instructors name? I would love to go to a seminar like this.
    Thanks for the information you already gave.

    Cindy
  • epark
    epark Member Posts: 339
    #3
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    mamolady said:

    Suzanne,
    Is there a website
    Suzanne,
    Is there a website or class information on this? Or can you give the instructors name? I would love to go to a seminar like this.
    Thanks for the information you already gave.

    Cindy

    wow that is something...
    I too would like to get some more info on this..

    Eva
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #4
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    mamolady said:

    Suzanne,
    Is there a website
    Suzanne,
    Is there a website or class information on this? Or can you give the instructors name? I would love to go to a seminar like this.
    Thanks for the information you already gave.

    Cindy

    Alot to comprehend
    Alot to comprehend and understand but makes sense. The one thing about the 6 year survivor getting leuk from chemo.That makes sense to me.One things goes against another.Don't know what to do but she needed the chemo then she gets another type of cancer.How discouraging!!!

    This is the way I feel.I didn't need chemo or radiation but I wonder about that. I feel there might be a cell lurking in the breast or other organ but hasn't popped out yet.I've always heard it takes 10 years for a tumor to be seen but with my dx it was a year after a traumatic situation and also a blow to my breast when my grandson accidentally elbowed.I feel those 2 things triggered it but more likely the trauma.I had lost weight and spent a year in mourning.

    Reading this post gives us all something to think about.Thank You for sharing.I will be reading this again. I am sure all of you had many questions to ask this person. What a good seminar.


    Lynn Smith
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #5
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    Lynn Smith said:

    Alot to comprehend
    Alot to comprehend and understand but makes sense. The one thing about the 6 year survivor getting leuk from chemo.That makes sense to me.One things goes against another.Don't know what to do but she needed the chemo then she gets another type of cancer.How discouraging!!!

    This is the way I feel.I didn't need chemo or radiation but I wonder about that. I feel there might be a cell lurking in the breast or other organ but hasn't popped out yet.I've always heard it takes 10 years for a tumor to be seen but with my dx it was a year after a traumatic situation and also a blow to my breast when my grandson accidentally elbowed.I feel those 2 things triggered it but more likely the trauma.I had lost weight and spent a year in mourning.

    Reading this post gives us all something to think about.Thank You for sharing.I will be reading this again. I am sure all of you had many questions to ask this person. What a good seminar.


    Lynn Smith

    Thanks Suzanne,
    What a great
    Thanks Suzanne,
    What a great seminar. I too would like to learn more. Thanks for sharing your info with us.
    I worry that a stray cell is lurking too even though I had chemo and rads. I guess that's always going to be there but I learned something today and thanks again.
    Hugs,
    Wanda
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
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    Thank you so much for your
    Thank you so much for your posting Suzanne. I was fascinated by it and read every word twice.

    I have always felt instinctively that I had very little do to with my disease and my outcome--other than fighting it with everything that I have. When I was first diagnosed, one sister tried to rationalize why I got cancer by saying something to the effect that I didn't eat healthy. First of all, that is not true. Second, she shut up quickly when 2 other sisters also got premenopausal breast cancer.

    When I read my initial operative report, I am even more shocked that I am here. That beast was all over my breast and in 4 nodes.

    Survivor's guilt is always with me, but I do what I can to bring help and hope to felllow sufferers. Because, I believe, if I can have cancer as a chronic illness, that option will be and is out there for more and more survivors.

    Here is a bit of Nancy Brinker's (founder of Komen) recent interview on NPR:

    "Now that we understand the biology of cancer, we understand that using the word cure means you'd have to prevent it from ever developing or growing, which could be a very long time, but I am absolutely confident that we will reach a time when we feel that we have real control over this disease in my lifetime.

    The word cure is, I believe, broadened today because many people have diseases they're living with for years and years and years and years, then die of something else."
    http://www.npr.org/2011/09/14/140477589/susan-g-komen-founder-discusses-her-book
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
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    CypressCynthia said:

    Thank you so much for your
    Thank you so much for your posting Suzanne. I was fascinated by it and read every word twice.

    I have always felt instinctively that I had very little do to with my disease and my outcome--other than fighting it with everything that I have. When I was first diagnosed, one sister tried to rationalize why I got cancer by saying something to the effect that I didn't eat healthy. First of all, that is not true. Second, she shut up quickly when 2 other sisters also got premenopausal breast cancer.

    When I read my initial operative report, I am even more shocked that I am here. That beast was all over my breast and in 4 nodes.

    Survivor's guilt is always with me, but I do what I can to bring help and hope to felllow sufferers. Because, I believe, if I can have cancer as a chronic illness, that option will be and is out there for more and more survivors.

    Here is a bit of Nancy Brinker's (founder of Komen) recent interview on NPR:

    "Now that we understand the biology of cancer, we understand that using the word cure means you'd have to prevent it from ever developing or growing, which could be a very long time, but I am absolutely confident that we will reach a time when we feel that we have real control over this disease in my lifetime.

    The word cure is, I believe, broadened today because many people have diseases they're living with for years and years and years and years, then die of something else."
    http://www.npr.org/2011/09/14/140477589/susan-g-komen-founder-discusses-her-book

    There was no final exam
    so I don't know if I understood correctly, but I did want to share my understanding because it was one of those AHA moments for me.

    Cindy, here's a newspaper article about program I'm involved in. http://www.sacbee.com/2011/07/30/3804847/peer-counseling-gives-uc-davis.html#ixzz1TdKWo3vn
    It is NOT specific to UCD patients, it's community based and more health care providers are joining and implementing it for their patients. If anyone is in the Sacramento area, it's a wonderful and fulfilling opportunity to volunteer and help. If there's something similar in your neck of the woods, I recommend you check it out.

    Suzanne
  • rainbow4
    rainbow4 Member Posts: 137
    #8
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    Thanks, Suzanne
    for the instruction! Some of this I've heard, some is brand-new, all is important.
    BTW - our team for Making Strides locally in October is named Team Cancer Sucks! we're handing out lollipops :-)
    -rainbow4
  • mollieb
    mollieb Member Posts: 148
    #9
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    This is really fascinating.
    Did he suggest any outside reading? I would like to learn more about this. Thanks for posting.
  • mollieb
    mollieb Member Posts: 148
    #10
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    Lynn Smith said:

    Alot to comprehend
    Alot to comprehend and understand but makes sense. The one thing about the 6 year survivor getting leuk from chemo.That makes sense to me.One things goes against another.Don't know what to do but she needed the chemo then she gets another type of cancer.How discouraging!!!

    This is the way I feel.I didn't need chemo or radiation but I wonder about that. I feel there might be a cell lurking in the breast or other organ but hasn't popped out yet.I've always heard it takes 10 years for a tumor to be seen but with my dx it was a year after a traumatic situation and also a blow to my breast when my grandson accidentally elbowed.I feel those 2 things triggered it but more likely the trauma.I had lost weight and spent a year in mourning.

    Reading this post gives us all something to think about.Thank You for sharing.I will be reading this again. I am sure all of you had many questions to ask this person. What a good seminar.


    Lynn Smith

    Trigger for Growth?
    I have had ER+ breast cancer twice. Both times it was diagnosed shortly after I lost a lot of weight, which releases estrogen stored in fat cells (ever wonder why dieters are so grumpy?). I brought this up to my first oncologist, who pretty much laughed at me. But my current doctor kind of nodded and agreed it makes sense. I am not saying weight loss caused cancer, but if it was already there and not doing much, a rush of estrogen might have given it the means to grow. I am also not saying we shouldn't lose weight -- there are so many known benefits to weight loss, and this is just speculation. But it does kind of make sense, doesn't it?
  • debi.18
    debi.18 Member Posts: 850 Member
    #11
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    mollieb said:

    This is really fascinating.
    Did he suggest any outside reading? I would like to learn more about this. Thanks for posting.

    Thanks!
    Very interesting - makes sense. Going to research more and see what else I can find.

    Thanks som much!
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #12
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    debi.18 said:

    Thanks!
    Very interesting - makes sense. Going to research more and see what else I can find.

    Thanks som much!

    Excellent post .. Excellent read ..
    Suzanne -- Thank you for providing such valuable and insightful research/information.


    Vicki Sam
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #13
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    So this whole biology thing
    So this whole biology thing is why I have a hard time with advice about diet/exercise/stress management as a way to control, or even impact, cancer. When I read Anti-Cancer, or Crazy Sexy Cancer, or took a class...whatever...I always thought in the back of my mind "but my body is different". Or I thought "but will that work for the kind of cancer I have?"

    Even with those doubts, I've recommended those books or those classes. Because on the other hand, I know that eating better, getting regular exercise, and managing stress are all good for a body. I know that if I take care of my body I have a better chance of living longer. And I know that there are some generalizations about diet/exercise/stress and their impact on cancer that apply to most people and most cancers.

    So...what's a girl to do? Does one start juicing? go to a plant based diet? acupuncture or massage? annual colon cleansing? become a marathon runner or just walk regularly? How much is too much, and what is the right approach when it comes to dealing with this beast that lives perpetually inside all of us?

    ...that is the question I would like all this research to answer. I don't want 'them' to just find new/different/better treatments for cancer (although I want that too!)...I want 'them' to find the connections between individual biology and cancer. Wouldn't it be amazing if an oncologist could discuss treatment options based on ones biology AND the pathology of the cancer?

    In the meantime, I do the best I can with the information I have. I make choices that feel right in the moment, and choices that feel right for the long term. Because after all, isn't all of life about choices?

    philosophical hugs,

    Linda
  • lynn1950
    lynn1950 Member Posts: 2,570
    #14
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    Well written and
    Well written and informative. Thank you! xoxoxo Lynn
  • mariam_11_09
    mariam_11_09 Member Posts: 691
    #15
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    Suzanne, this is brilliant.

    Suzanne, this is brilliant. Thank-you for posting it. I grew up believing once you had cancer you always had it and if you had no symptoms it was in remisssion. I also thought there was NO cure for cancer and once you had it, because it got there in the first place, it could reoccurr anytime, the mechanism for cancer creation could not be turned off permanently. It is not good news but confirms what I was lead to believe growing up.

    Cancer is such a mysterious thing. And as you said, 'Most of us are naive at diagnosis' I have to admit I was very naive before cancer, not just naive but very opinionated. I cringed at the thought of the things I fortunately thought but never said to cancer patients. I really hang my head in shame! However I have grown up and lost my innocence to cancer. It is bitter sweet really.

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