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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • ruthbru
    ruthbru Member Posts: 47,140
    edited October 2013
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    I had a fast growing, aggressive tumor which came out of nowhere; so even though I was node negative, without doing chemo AND 5 years of an anti-hormonal both my odds were 50/50. With them both, my odds went up to a 76% chance of being OK. On hearing this, I said to my oncologist, "What? WHAT? If I'm doing all that crap, I want better odds than that!!!" To which he said, "We will do all that we can, the rest we have to leave to God." (insert fate or a higher power, if you wish). I did the treatments and do all the healthy lifestyle things I can to tilt things in my favor, and that is all I can do...except really enjoy life RIGHT NOW (which is what everyone in the world should be doing anyway). Hugs to all!

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
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    It would be helpful if they would CLARIFY the stats/stages/info. regarding the subject of recurrence. If websites / Cancer Organizations are going to post these %'s, then they should CLEARLY explain EXACTLY what THEY are saying/claiming...which specific groups they are including, break it down as clearly as possible...cite the original sources, etc. 

    Perhaps we should write them/ question them and convey the importance of clarity on the issue. Demand it, even. It seems insane that this is not the case.

     What they know, what they *don't *know, ( Hell, what they only THINK THEY KNOW, etc...a la Dr. BRAWLEY. ..;)

    Susan, thanks for keeping this conversation going...;)

    Violet

     

  • ballet12
    ballet12 Member Posts: 66
    edited October 2013
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    Hi all, this is from Susan Love's blog on her website. This is her take on micrometastasis (and sorry for my posting since I'm only DCIS, but I thought you might want to read it).

    All Cancer is Metastatic!



    By DSLRF On Sunday, October 13, 2013 · 3 Comments





    Today is National Metastatic Breast Cancer Awareness Day. Last Friday, a new collaboration amongst breast cancer organizations—the Metastatic Breast Cancer Alliance—was announced, and the Dr. Susan Love Research Foundation is one of the fifteen founding members. Why?


    I have written about my difficulties with the concept of calling people who have completed cancer treatment “survivors.” This implies that the “enemy” has been vanquished, never to return. I wish it were that simple. The development of technology that can detect isolated microscopic cancer cells in the blood of people with early breast cancer has made us acutely aware that breast cancer cells “get out” before diagnosis in the majority of people. Some of the cells that leave the breast probably die in transit, while others find new niches where they hide out, dormant, until you either die of something else or they wake up. In fact, that is the exact argument for giving people with “early” disease adjuvant treatments with chemotherapy, hormones, Herceptin or some combination of the above. We are treating the micrometastases that we suspect are there even if our tests and scans cannot show them or even show that they are gone. Knowing that they are there is just a matter of how hard we look for them. It wasn’t that long ago that we considered someone to have metastatic disease when a physical exam demonstrated palpable disease in a mastectomy scar or obvious disease in a bone on an x-ray. Now with more sophisticated methods of detection, we consider someone to have metastatic disease when a sensitive PET scan or blood marker test shows evidence of disease. It is likely that we will soon lower the bar further to include people with circulating tumor cells in their blood but normal scans and markers. Does that mean that we all have metastatic disease? Probably! The question becomes not whether it is there, but rather, whether it is causing problems that need treatment.


    I think it is important to realize that the goal for all of us is to live as long as possible with the best quality of life that is possible, whether we have cancer, have cancer but don’t know it, or just haven’t developed it yet! The cure must not be the measure of success! And women with known metastatic disease must not be thought of as different than those whose disease may just be dormant. Think of AIDS. While we do not have the cure, we have enabled many people who thought they were facing an early death to live reasonable lives with a chronic disease for longer and longer periods of time. While our goal is often expressed as the cure, control may not be a bad temporary compromise.


    So in honor of all our sisters and brothers living with known metastatic disease, let us honor their experience while recognizing that theirs is a much bigger club than we have previously acknowledged. It’s a club that many of us may be members of but just don’t know it yet. We need to go beyond the artificial separation of stages and recognize that all invasive breast cancer is metastatic from the beginning. The issue is whether the cells are under control or causing problems!


    We need to join together to call for research into the cause of the disease while fighting for better treatments. And we need to all contribute to research whenever possible to move things forward, not for one subgroup or another, but for all people whose lives have been touched with the disease! Together, we are stronger than the disease.


  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited October 2013
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    Pbrain.....one of the things I learned early on was the difference between the general population and those who finished the prescribed therapy. Astonishing. As I am constantly reading up on new therapies for some of the work I do, I have to say that Perjeta is just amazing.


    Anyway, I also learned early on that I needed to plan for a long life. I expect to be here for the long haul.


    I also realize that heart disease is more likely to get me than cancer.


    So I focus more on my general health at this point. Plus on living my life. Count me among the "half full" crowd......but ever so great to be here and highly unlikely that this would be the case without the treatments we have today.


    Each day is amazing. - Claire

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
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    BALLET,


    Thank you for posting this! I posted to my FB page. The LAST THING an "Early Stage" BC patient wants to hear is: "Oh, you're so lucky that they caught it early--you're going to be fine."


    HERE is my FB Post...:)

    "Wish more people would get this. Honesty/Frank Truth is much better than Delusion...So many women with Early Stage Breast Cancer go on to discover that it has indeed metastisized. I know of many Stage 1/Grade 1/Node Neg. BC Women that have jumped to Stage 2, 3, & Stage 4 w/ mets.. The LAST THING women with Early Stage IDC (invasive ductal carcinoma) BC want to hear is: "Oh, you're so lucky

    that they caught it early & you're ONLY Stage 1..."

    Most people ARE well-meaning, but the Public simply isn't very well informed on the Reality of Breast Cancer (also a problem of confusion in the BC World). Basically, it's a Crap Shoot. The very real possibility of Recurrence/Mets is ALWAYS there. That's not Fatalistic Thinking, it's simply the Truth. One might be thought to be NED (No Evidence of Disease) at the moment, but that does NOT mean one is "cured"...We just cannot know. BC is so NOT a Pretty Pink Ribboned Disease in which "Early Detection" saves millions of lives... AWARENESS alone often lulls the General Public into thinking All is Well & Good. There IS NO CURE for Metastatic BC yet. Perhaps a thwarting... a time of NED, maybe even an extended time. But, we cannot know if/when it will come back, spread, etc. We can be Hopeful & pray & live our lives, help others, & maybe we will be one of the lucky/blessed ones who go on without further KNOWN recurrence.

    But please don't tell BC patients that they should just be happy that they are "Early Stagers" & they're going to be just fine. No one can know that...& it's NOT comforting. Just love them & walk with them through the journey...it's a LIFE LONG JOURNEY. We never will be able to say for certainty we are "CURED"...not YET anyway. Not until they truly find a real CURE."


    Violet

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
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    P.S. You can read ALL of the Reader's Comments on her post...but here is a clarification from Dr. Love:


    Dr Susan Love says:

    Tuesday, October 15, 2013 at 9:43 am

    Anita Blanchette Thanks for your comments! I think you misunderstood my post and my situation. First of all I am not a breast cancer survivor, I live with the diagnosis of AML or leukemia which actually has a higher recurrence and death rate than breast cancer …80% in 2-3 years!

    The point of my blog, however, was not to marginalize metastatic disease by suggesting that everyone has it but rather to show that there is no difference in fact between those diagnosed with Stage I-III and those with Stage IV. These are arbitrary distinctions because the vast majority of people with invasive breast cancer have microscopic metastatic disease that can reemerge at anytime. The difference between someone who is designated STage I-III and one who is designated Stage IV, is a test that can confirm the microscopic cells that we know are there. As the tests become more sensitive the number of people with the label of metastatic disease increases.

    The goal of my blog was to demonstrate that everyone is in fact in the same boat with a disease that can be controlled for a time but that can also come back at anytime and take your life. If we all work together on finding treatment that will work for everyone then everyone wins. This is the science!

    The problem is not the labels, it is a our culture and media which insists on designating some as winners/survivors/courageous etc and other as ????? By thinking about breast cancer patients as belonging to one of two groups we perpetuate this inaccurate way of categorizing people and their disease.

    It is your feelings of exclusion that prompted me to write the blog in the first place. It is not about us versus them but about a disease which no one asks for, we don’t fully understand can control! That is the enemy and I think we should all work together to vanquish it!7 minutes ago


    Violet


  • fredntan
    fredntan Member Posts: 237
    edited October 2013
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    reminder:in 2012

    komen put 171million to education,

    69 million to research, 25 to salaries ,25 to treatment.

    we need research not awareness campaigns

  • mdg
    mdg Member Posts: 1,468
    edited October 2013
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    I think the other thing that is confusing is that when they talk about oncotype and recurrence rates they are usually talking about within the next 10 years. Well that doesn't mean much when you have a 4 year old child when you are diagnosed. I would like to understand my own personal odds over a longer time period. Also some stage 1 patients don't end up having chemo and some do....wouldn't that make a difference? Some have LVI and some don't - wouldn't that make a difference? Some do BMX and some don't....that also could make a difference. There are so many "generalizations" used here but we can't rely on those percentages because all people don't do the same treatment or have the exact same diagnosis even though they are all stage 1. I too am sick of the awareness campaign crap.....someone said to me the other day "well you are lucky it was only stage 1". My response "I still had all of the painful surgeries and chemo so it didn't seem any easier".


    I am sick of all this awareness crap! People have a false perception that early stage means "cured". If people are so aware, why do women think if they had a clean mammo they have no lumps or BC? Simply not true for so many of us here. I found my 1 cm lump a few months after a clean mammo. If women are so aware - why do most think that a majority of breast cancer patients have family history? That is simply NOT true as most of us here had NO family history. I could list a whole bunch of other facts that people are not "aware" of regarding BC. It's so frustrating. They need to spend money on a cure. They also need to NOT cut screenings/mammos. I just saw on TV yesterday they were telling women with NO family history to start getting mammos at age 50. Are you kidding me? I had no history....most of us don't and many of us are far younger than age 50.


    OK - I am putting my soap box away now! :)

  • fredntan
    fredntan Member Posts: 237
    edited October 2013
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    you are preaching to choir MDG

    now what are we going to do about it

    i personally think all those komen walkers are not aware of where the money goes. i think we should bombard komen on facebook. post n there fb page there financial info.  am going to stir the pot . come join me

  • encyclias
    encyclias Member Posts: 61
    edited October 2013
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    I've made an observation over time that I find interesting in regard to Komen's $171 million for education. Often, especially when I was chemo bald, I would have brief conversations with other women who were curious about my cancer -- be it in elevators, supermarkets, etc. What I found amazing is that so very few of them (maybe one in ten) knew that 80% of women diagnosed with breast cancer had NO family history. They were shocked; they thought they were completely safe and that they would never be BC patients.


    With Komen spending $171 million for education; how is it possible that so many women don't have that information? If they knew that they or their mothers, daughters, sisters could get BC, maybe they would also be demanding more research for a cure. Nine out of ten women I casually spoke with didn't realize that THEY might need the cure also in the future.


    Carol

  • fredntan
    fredntan Member Posts: 237
    edited October 2013
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    i dont really think there education is very effective. have gotten from a lotta women...oh i get my mammos every year. oh yeah so did i.and now its recommended mammos start at age 50? you gotta be kidding me

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
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    MDG:

    AMEN.

    V

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited October 2013
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    I have, actually, had women say to me, "... oh, I get a mammogram every year, I won't get breast cancer..."  Seriously.  And, then, I watch their jaws drop when I tell them that I got a mammogram every year and the mammogram never found the developing cancer; a self-exam did.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
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    Chiming in here about those misconceptions. Almost everyone I talk to thinks they are safe because a) they have no family history b) they get mammos every year. Both a false sense of security. But what can they do? I always advise them to know their breasts! Do self exams regularly so that you can notice when something is off. My lump was not a nice small "round" lump like I thought they were supposed to be. Mine was just an area that felt a little "thicker" than normal. My regular doc wasn't concerned in the least bit, but was smart enough to send me for a diagnostic mammo. I have no family history. I had a mammo about 2 years prior (kept procrastinating). Would it have been caught earlier? I don't know. They tell me I was "lucky" to find it myself since it was relatively small. I was 43. Seven years prior to the "you don't need a regular mammo until you are 50 if you don't have family history"


    As far as the false sense of security of mammos... take a look at this thread I started before---> How Was Your BC found - you or doctor? . I was surprised to find out how many women found the cancer themselves within months of a clean mammo. I try to educate people to know their breasts and find out if they have dense breast tissue (so many women aren't told by the radiologist, though it is listed in the mammo report every year). If you do have dense breast tissue, they need to be extra diligent in looking for any changes and asking for MRI's/ultrasounds if something looks even remotely suspicious on a mammo.

  • mdg
    mdg Member Posts: 1,468
    edited October 2013
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    What movement can us BC gals make to get the story out there? I do as much as I can to educate people about BC but again they don't get it. I had a friend with calcifications that refused a biopsy after she had a three babies in three years.....think of all the hormones that were in her body! She is going to "wait and see"......I told her to get a biopsy ASAP but she didn't want to. It is so frustrating to think that people still feel they are immune to this happening to them. I do want to make more of a difference but sometimes am unsure how I can make that happen. So frustrating!!!!

  • rozem
    rozem Member Posts: 749
    edited October 2013
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    selena -ive had women say that to me to! and I would like to add the perception that if you have a mastectomy "you don't have to worry about it coming back". In their defense I knew so little about this disease before diagnosis but SERIOUSLY with all the awareness campaigns they would get some simple facts out to the general population


    mdg I can see the look on distress when I am asked if I have a family history (NO I DONT) its like I dashed their sense of security that they were holding on to. Yes I can happen to anyone I tell them.


    they don't start mammos here in Canada until 50!!!!!! I am volunteering with the Canadian breast cancer association in advocacy because we are trying to get this changed - it makes ZERO sense

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
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    Ballet, 

    I think it would be helpful for you to post that Susan Love blog post also in a  more general area on this site so others can read about it too...;)

    Viol

  • encyclias
    encyclias Member Posts: 61
    edited October 2013
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    Bringing up the family history issue is what we should want women to be educated about. When their security bubble gets busted, then maybe they will start pushing for a CURE also. A cure puts all the discussion about early detection, mammos, chemo vs rads, MX vs LX, mets, etc., to rest. All we need is a CURE!

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
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    Hmmmmm. You got me thinking Maria (mdg). I don't publicize my BC on facebook, though most of my friends know...I just have never posted anything publicly.


    I'm seriously thinking about posting something now. But it has to be short or else most people won't read.


    Something like..


    Even though we're awash in Pinkness for BC awareness every October, I've found most of my friends are unaware of a few important facts. 1) 80% of women diagnosed with breast cancer DO NOT have any family history of BC. 2) Mammograms are not a infallible. __% of breast cancer is found within months of a clear mammogram. 3) ___% of women are diagnosed before age 50. What can you do? Know your own breasts well enough so that you can notice any significant changes. Find out at your next mammogram if you have "dense breasts". You may need to be more diligent about self exams and insist on an ultrasound/MRI if anything looks suspicious. I have no family history. I found my own cancer at age 43.


    Anybody have the correct stats and a good link I could send them to? Anything else I could add/change to make it a quick read?

  • mdg
    mdg Member Posts: 1,468
    edited October 2013
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    Susan - I have posted a lot on FB but only in October. I am posting stats every week. I am trying to spread the word among friends and family at least. I was the least likely person that my friends would have thought would get BC. I have been a fitness professional for over 25 years. I exercise daily and help motivate others to be fit and healthy. I am educated with a degree in Health and have no family history. Man the diagnosis knocked me to my butt and shocked the heck out of my friends and family. If I can get it...SO CAN YOU! That is my message.....along with some basic stats. It took me a long time to be public about BC...in fact on my blog I was anonymous for a super long time with no photos or details other than my bc ramblings. Then I got so bothered about the lack of information available to women about cold caps and saving their hair through chemo I finally let it all come out and posted information/photos to help others get the facts on an option to keep their hair and privacy while going through chemo. Now I speak openly about BC. I finally told my aerobics class a few weeks ago that I was a survivor....they were shocked....they had no idea. I moved here to Chicago a few months after completing chemo but I kept my hair so no one knew about the chemo. If my discussions helps just one person, I will feel better.

  • rozem
    rozem Member Posts: 749
    edited October 2013
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    susangardens - I would add the website www.areyoudense.org Dr Nancy Cappello started it after her own misdiagnosis (via mammo) due to dense breasts. She was instrumental in getting a legislative bill passed in CT that radiologists must inform patients of breast density and recommendations for additional screening.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
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    Thank you rozem!!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited October 2013
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    even a breast surgeon found my 4 cm lump hard to find. She called it subtle. Mine was found by mammo. I was 47 at diagnosis stage iv out the door. Her2+ BC is more common in premenopausal women and it is very aggressive.

  • fredntan
    fredntan Member Posts: 237
    edited October 2013
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    image

    i made this card. how do youll like? hve allready posted to fb and pinterest. we need a cure not awareness
  • mfm48
    mfm48 Member Posts: 66
    edited October 2013
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    Just jumped on this site. I have to admit I was one of those women that thought, great, they caught it early, my onco score was low, I had the surgery, escaped chemo and rad, and thought I was done. Here I am 4 years later with a recurrence in the reconstructed breast, just under the skin, did a lumpectomy, am in the middle of chemo and starting radiation shortly. The simple fact is, as Dr Servan Schreiber writes in his book, everyone has cancer cells, its just whether they are fueled or kept at bay. If you haven't read it, I would recommend it. "Anti- Cancer, A New Way of LIfe". The true awareness that needs to be imparted is that the white flour, sugar, hormones, environmental contaminants, cleaning supplies and stress levels fuels these cancer cells. My MO has nothing to say about this which I find distressing. If Komen put more money into educating women on how to decrease their risk now that would be helpful.

  • mdg
    mdg Member Posts: 1,468
    edited October 2013
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    Agreed mfm48! I have read the book.....I wonder how much of that made the cancer cells come alive in me. I am glad I read it so I can help my son learn at a young age to avoid bad foods. We are more organic now and we have fewer chemicals in our home.

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited October 2013
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    MDG and Fran ... looking for the "like" button on your posts from yesterday!


    hugs,


    Bren

  • fredntan
    fredntan Member Posts: 237
    edited October 2013
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    fuck it just fuck it. see my post in the stage 4

  • ruthbru
    ruthbru Member Posts: 47,140
    edited October 2013
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    Oh crap, Fran......

  • odie16
    odie16 Member Posts: 1,415
    edited October 2013
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    Fran, 

    I am so sorry....Sending sincere hugs.....