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Do you think MBC will be truly chronic in the next 5 years??



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950


    Besides the many incredible woman I have known on bco who have passed (check out the In Memorium thread), my grandmother died of bc but my younger sister, the baby of the family, died of a uterine sarcoma. Diagnosis until death ? Four months, so please don’t assume that stage IV cancer hasn’t touched my life. However, I still am completely comfortable with the medical profession. They did the best they could with what they knew at the time. Your remark was quite presumptuous.

    And why do you presume that I am unaware of statistics regarding stage IV? After 8 years with mbc, I’m more than well acquainted with the subject. I am also very aware of how unusual an exceptional responder like me is and I know, with a heavy heart, that most are not. Again lots of presumptions.

    I am not say that conventional medicine and the industry surrounding it are perfect. There are bad actors in every walk of life, but I’m a science based research kind of person, and again, while not perfect, it is ever evolving and improving. I have used some complementary tx, my HMO is big on that, but I credit conventional medicine with my longevity

    You seem like a nice person but I shouldn’t have had to defend my cancer cred to you.

  • Frisky
    Frisky Member Posts: 1,686

    exbrnxgrl, we obviously share the same disease but have reached different conclusions and have different expectations, and that's fine with me...

    Sorry, but I was not being presumptuous, I thought I was using common sense in describing what would likely be a huge disappointment if I were to die after 22 months and I was only 32 years old, for example. But again, we can agree to disagree on this one too....It's obvious from the long list of family members you've lost to cancer that your trust and faith in doctors is profound. Good for you! It's as it should be!

    Since my oncologist has nothing reassuring to offer me, these boards are a constant reminder of how quickly diagnosis can change overnight, and my core beliefs being what they are, I will follow in Jane McLelland steps and continue to do what I deem right for me. So when I go, I'll haveno regrets about what could have and should have.

    To you my dear friend, I wish only the best! May you continue to enjoy the benefits from your treatment and faith in your doctor.

    You must admit, our little debate is a bit silly...when in reality, not you, nor I, or our doctors will be able to do a damn thing when those cancerous stem cells decide to expand and do what they love todo unabated....but please let's agree to disagree...okay?Heart

  • olma61
    olma61 Member Posts: 1,025

    Please, anyone who is newly diagnosed read what the American Cancer Society says about the survival statistics under the table where they post them:

    "Understanding the numbers

    • Women now being diagnosed with breast cancer may have a better outlook than these numbers show. Treatments improve over time, and these numbers are based on women who were diagnosed and treated at least five years earlier.
    • These numbers apply only to the stage of the cancer when it is first diagnosed. They do not apply later on if the cancer grows, spreads, or comes back after treatment.
    • These numbers don't take everything into account. Survival rates are grouped based on how far the cancer has spread, but your age, overall health, how well the cancer responds to treatment, tumor grade, the presence of hormone receptors on the cancer cells, Her2 status, and other factors can also affect your outlook." [endquote]

    You aren't a statistic and you don't have an expiration date. Neither do I. We are individuals, not statistics.

    Yes, this is a serious disease and will probably shorten your life. It is not "chronic" like my high blood pressure is, right now, but that does not mean it will never be or that it won't be in the near future. Chronic MBC within the next five years may be overly optimistic, but some of us *may* well live to see great strides being made. Some have already been made, and we are benefiting from them.

    And, speaking of high blood pressure - just because it is "no big deal" for me and well controlled with one pill, it is NOT that way for everyone. Some people are on three meds and still have uncontrolled hypertension. Some will have strokes or kidney failure because of it. Even I guarantees, just because I am able to control it with one pill now, does not mean it will always be that way. But hypertension is still considered a chronic disease.

    Same for diabetes. Not to be morbid again, wink wink, but I'm sure we have all heard of people who in the end stages of diabetes do not fare so well. But it is still a chronic disease.

    I will repeat what 42young said which I think is a good mindset - Prepare for the worst, hope for the best.

    Oh and woohoo, I have already outlived the "22 months average life span" thing. I am so glad I didn't spend the past 24 months thinking about how soon I was going to die. Now I have three more years to go to outlive the next gloomy statistic. I think I can do it.

  • Frisky
    Frisky Member Posts: 1,686

    yes, Olga, lets keep faith alive....we’re going to need it

  • anotherone
    anotherone Member Posts: 547

    Jane ( woman to which frisky refers) had an operable lone lung metastasis which was surgically removed. I do not want to discredit her book and I myself am on her protocol. Still saying it so that people have clear information as otherwise someone may think she had widespread metastasis which just disappeared with only her protocol. Mind , I am looking forward to the results of a PET test I had after about 6 weeks of fenben etc compared to the original diagnosis CT and hoping it is improving but I reckon it may be too short a time and too different scan techniques to compare properly - will let you know.

  • nbnotes
    nbnotes Member Posts: 338

    exbrnxgrl -- Thank you for your post! I've been following this thread and others, and am also a teacher. Though breast cancer may be one of the most common cancers, it is also one of the most complex, and I think people forget that. . If you have 100 MBC patients in the room, you most likely have 100 different types of cancer between the er/pr rates, her2, ductal, lobular, mucosinous, etc. I was/am er+/pr+, her2-, idc, with one of my 2 tumors in breast being muconous and 1 not. We didn't biopsy every liver met so who knows what else might have been a factor there. even each original tumor was not the same possibly for treatment. Humans are not widgets as is so often said in education. The people and drs who go into this field often do it b/c they were impacted by cancer in their own life. Even the "greedy " big pharma people are affected by cancer, and I think we need to be very careful about making claims that they don't really care about curingit, etc. that often are stated Diet, exercise, genetics, all play a part and it is not a simple problem or solution.necessarily. I;ve been lucky to make it 7 years but from my original diagnosis I didn't think I was making it the 22 months. This won't be a chronic condition until everyone's can be forecast past that 22 month (at least by the definition of chronic being same as diabetes, etc.)

  • Frisky
    Frisky Member Posts: 1,686

    another one, you are wrong and misleading people, it's obvious you have not read the book, but if you did read it, it would do you good to reread it a few more times. I don't understand why anyone would need to diminish what that woman accomplished. So I will leave that alone....

    Look...I am NOT attached in any way, shape, or form, to changing anyone's beliefs about the nature of reality and if and when breast cancer will be a chronic disease. Why take on so much responsibility?

    like everyone else on this board, I only expressed my thoughts about breast cancer treatment as a chronic disease. ....and gave ample explanations about where my dark conclusions stemmed from...and that's all folks! Let it go...and carry on...we all have HUGE and REAL PROBLEMS to deal with.

    I want to add, in case you are not aware, that I am currently being treated with Doxil infusions at a leading breast cancer hospital, by a leading researcher and MO.

    However based on what I have observed on these boards for the past five years, I know deep in my heart—and he is smart enough to NOT mislead me—that he can't save my life.

    Call me crazy, but I'm NOT ready YET lo lay down and accept that reality, so I truly hope that my search for survival doesn't upset your sensitivities too much...that you would approve....just in case you think I'm the type that needs it.....

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950


    Thanks for your comments. The sheer complexity of bc (and other cancer too I imagine) is mind boggling. I remember being gobsmacked when, after dx, I began to learn about all the possible variations.As a teacher I know you understand that our “materials and outcomes" are human beings who come to us with a multitude of variables that we have no control over. Breast cancer comes with a mountain of confounding factors too. Although not where I wish we were in curing cancer, the progress is there.

    I went back to work last week. My clas has charmed me already! Have a great school year 😊

  • heidihill
    heidihill Member Posts: 1,856

    "We're mathematically modeling biological frameworks that will allow us to predict drug sequences," Goldman said. "We're not just putting drugs together -- we're developing combinations that rationally address resistance."

  • 42young
    42young Member Posts: 124

    Thanks all for chiming in. I respect your opinions on both sides. To me, i already accepted the fact that i won't live a normal lifespan since I'm only 42. I know it's not chronic for everyone yet. However, i'm optimistic that survival will continue to improve by using conventional plus complimentary therapies & MBC will be chronic some day. I may not be here to see it happen, but i need hope at this time in order to survive.

  • divinemrsm
    divinemrsm Member Posts: 6,151

    I have a similar philosophy on traditional medicine as exbrnxgrl so I won't repeat her words as she explained her thoughts so well.

    My thoughts on Big Pharma: the arguments against Big Pharma are nothing new! I well remember back in the 70s my best friend in high school had diabetes. Even way back then, she talked about how some people were of the mind that a cure for diabetes could be found or was out there, but the pharmaceutical companies were preventing the public from this knowledge—that the companies stood to lose enormous profits from insulin and needles and other diabetic needs if a cure was found, so they blocked all efforts to get the cure to the public. She didn't refer to it as Big Pharma, I'm not sure when the name was coined, but that is what she was speaking of.

    So whenever I hear or read about people going on about Big Pharma, well, the arguments have been around for decades. There's lots of books written against the industry and I’ve read a couple. Yes I am well aware they can be unscrupulous. Look at the horrible opioid epidemic—the area I live in has been one of the hardest hit by the drug—and that was most definitely created by a pharmaceutical company. But there have been advances in the treatment of many cancers over the years. And other diseases. Big Pharma has pros and cons and I can't denigrate it because I am benefiting from it.