complementary vs. alternative?

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kks_rd
kks_rd Member Posts: 363

Hi all,

I am still very new and confused, so please forgive me.  I have studied nutrition all my adult life (5+ years college, registered dietitian) and lost over 70 lbs - now at a healthy weight - through diet and exercise.  I don't take any prescription meds and eat meat sparingly.  I do yoga and meditation regularly and try to keep a positive outlook. What I am trying to say is that even before my dx, I have embraced what one might call a healthy and well-balanced way of life.

Since my dx I have had several people tell me I should postpone any traditional medicine approaches until I have exhausted all alternative therapies first.  I am not sure I agree with this... as you can see in my sig, my grade is not the greatest and I just found out today that I am BRCA-1 positive... there is part of me that feels like I have no time to "waste" on unproven treatments (one lady suggested I should just eat a lot of kelp and visualize my cancer away). 

So I'm wondering what alternative therapies DO work?  Is it possible to embrace a totally alternative approach and actually RID myself of the cancer and also achieve the goal of having thiis hell never visit my life again?  (Tall order I know, but I would LOVE it if someone could give me that guarantee ;) )

I totally embrace nutrition, physical activity, peaceful living, meditation, avoiding toxins and plastics, massage etc. etc. and will include them into my life more than ever now (for example - I am embracing every meal is an opportunity to kick cancer's ass!)... but can this alone take the place of surgery? Can this take the place of rads or chemo? Or does it just work along with the more traditional approaches?

I know this was a ramble, but I am really interested in hearing people's opinions and experiences since I am deeply entrenched in the research everything/making decisions phase of things.

Many thanks,

Kat 

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Comments

  • ebann
    ebann Member Posts: 3,026
    edited May 2011

    Hi Kat,

    I do both. My oncologist actually recommended a naturopath to me. They work very well together. So yes I have done chemo and radiations along with lots of supplements, high dose infustion of vitamin C and a meditteraen diet, drink lots of water, exercise 5 times a week. Cannot workout bottom half cause of the pain and cancer I have in my hip/leg. I am having surgery on it to stop the pain. I am on pain meds and doing acupunture as will. I like that I am doing both. Because they question chemo and they question alternatives. Why not conquer them all. I would ask your oncologist if there is someone they work with and if they believe in it. Knowing my Dr. worked with on and referred me made me feel good that she felt good about my care and what approach I can take. Especially on chemo a lot of alternatives help with the SE's.

    Many, blessings, Elizabeth

  • Beeb75
    Beeb75 Member Posts: 325
    edited May 2011

    Hi Kat,

    Welcome, and sorry you have to join us.  

    There was recently a thread on this site that delved deeply into a lot of questions you are asking. You can read it at this link, if you'd like. 

     http://community.breastcancer.org/forum/79/topic/765299?page=56#idx_1670

    If you don't have the time or interest in plowing through all 50-some pages of it, I'll take a stab at some of the conclusions that the thread arrived at:

    1) There are no guarantees that the cancer won't come back, no matter what you do

    2) There is no trustworthy research on alternative or complimentary tactics that can rid you of cancer.

    3) There IS research that shows that 'conventional' methods (chemo, etc.) do cure some percentage of women with early stage breast cancer.

    Since you have led a healthy lifestyle (as did I) and still got a cancer diagnosis, why would you think that a healthy lifestyle would help rid you of cancer?

    It looks like you have a more aggressive type of breast cancer (hormone receptor negative) and it looks like you are young, so I would encourage you to strongly consider chemotherapy, if it is offered to you. It *could* be the cure that you are hoping for! 

    You could also (simultaneously or sequentially) try other methods you feel might help you. 

    Best of luck with your decisions! 

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2011

    Hi, Kat ~  I've always been extremely health conscious -- did all the right stuff -- never ever thought I'd do chemo if faced with that decision -- and also had dear, natural-minded friends begging me not to give into conventional medicine, just as I know I'd suggested to others prior to my own dx. 

    But in addition to the excellent key points Beep made, one thing that quickly stood out to me is that all of the long-term survivors who came forward to encourage me, including some who were also into natural healing, had all gone with conventional tx for their bc, including chemo.  And they were doing great 10 & 12 years later.  By contrast, the only people I knew who had gone only the natural route (for cancer, although not breast cancer), hadn't made it -- although both had been dx'd @ Stage IV, when conventional medicine had nothing to offer their particular types of cancer.  And, just as Beep said, I kept thinking -- "Wait a minute!  All this healthy living didn't prevent me from getting bc.  Perhaps what my body really needs is some shaking up -- like with something it's never experienced -- conventional drugs."

    Then I heard the term, "integrative medicine," @ UCLA, and it all clicked for me:  I could do the conventional medicine doctors I really trusted were recommending, along with the scientifically proven CAM therapies they also believe in that would hopefully complement and help me get through the conventional stuff, as well as heal and rebuild faster.  So that's what I did, and it was absolutely the right choice for me.

    So my best advice is, talk to as many people as you can, continue to ask questions, and eventually you'll find the right path for you.   (((Hugs)))   Deanna  

  • StaceyLynn
    StaceyLynn Member Posts: 84
    edited May 2011

    Kat,



    Sometimes people mean well, but don't realize the how much pressure and stress their advice can be during a time of decision-making. Here is what I've learned: 1) Do what YOU think is best for you and no one else. 3) Everyone does not need to know the details of what you are doing. Learn who is supportive and who is pushing their views on you. 3) You have to BELIEVE in whatever treatment plan and your treatment team.



    I am doing both. I could not tolerate chemo (AC) and only had 2 cycles. I then had vitamin c infusions. I'm recovering from bilateral mastectomy and hysterectomy. I've been informed that I should try chemo again and I will despite strong objections by close family members. They don't have cancer so I told them to keep their opinions to themselves.



    My suggestion is to talk to those who can help you and not stress you even more than you may be now. Sorry you have joined us, but welcome with open arms.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    I was doomed from a very early age having undergone parotidectomy at 21 with chances of bc within 20 years. My ORL very wisely told me back then that i was "cured" and i believed him. he never told me of those odds, i just recently learned 30 + years later. i firmly believe that my healthy lifestyle, good nutrition and supplements beat the "stats" plus my tumour was grade 1. the area where i did not do so well was stress management being a single mom and working in the legal field made my life much harder.



    So i will continue on the same path of beating the odds, but much much wiser this time around.

  • Valgirl
    Valgirl Member Posts: 187
    edited May 2011

    I too thought I was healthy.  Do Yoga, rarely eat meat, exercise etc.   I am now reading reading the Anti-Cancer book by David Schreiber.  He believes in all the healthy options but definately believes in the western approach first.   

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2011

    Hi Kat,

    You've gotten some great advice!  One thing to keep in mind is the alternative-conventional thing is a spectrum.  Very few (if any?) of us are completely on one end or the other.  Thankfully, most of us are somewhere along the spectrum (what I consider to be complementary or integrative), but where you end up is highly personal.  It sounds like you're off to a great start to treatment, with your overall good health and fitness!   That's awesome.

    Here's a good place to lots of reading about critical thinking with regard to "alternative medicine" - 

    "A Close Look at Alternative Medicine"

    Best of luck to you!  Stick around here.  Ask lots of questions and consider all your options, weigh the risks and benefits for your particular situation, talk with your doctors, family, friends, and then make your decisions.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Valgirl:  Since my own BS told me I am healthy (he's the expert), I don't believe that BC makes me unhealthy.  On the contrary, maybe I'm too healthy for my own good.  At 54, those ovaries of mine were still in overdrive (never missed a period).  Been told oftentimes I looked 15 years younger.  Unfortunatelty, due to chemo and Tamox, that is no longer the case.  My body has aged 50 years if not more and I look like I've been through hell and back many many times.  Chemo and Tamox are poisonning my body.  Maybe, I still had many many good years yet to come, had it not been for the mammograms.  Here, in Canada, doctors are not all that crazy about mammograms, as these in themselves can damage breast tissue enough to cause BC.

    "Using Autopsy Series To Estimate the Disease "Reservoir" for Ductal Carcinoma in Situ of the Breast: How Much More Breast Cancer Can We Find?  

    Purpose: To determine how many cases of breast cancer might be found if women not known to have the disease were thoroughly examined (the disease "reservoir")"

    http://www.annals.org/content/127/11/1023.abstract

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011
    Kat - First, I think your question is one of semantics.  Also, complementary and alternative are one and the same.  Your thread should have been entitled conventional vs. complementary/alternative/integrative medicine

    Let's see, I was administered TAC :

    T = Taxotere (docetaxel) is an extract from the bark of the rare Pacific yew tree Taxus brevifolia and is marketed worldwide by Sanofi-Aventis. ]Annual sales approx $2bn annually

    A = Adriamycin (doxorubicin) - The molecule was originally isolated in the 1950s from bacteria found in soil samples taken from Castel del Monte, an Italian castle.

    C = cyclophosphamide - also known as cytophosphaneis a nitrogen mustard alkylating agent.. The nitrogen mustards are cytotoxic chemotherapy agents similar to mustard gas. Although their common use is medicinal, in principle these compounds can also be deployed as chemical warfare agents

    How much more ARCHAIC can the big pharmacos get !!!

    Bottom line  ??   Price tag at the pump

    http://en.wikipedia.org/wiki/Breast_cancer_chemotherapy

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2011

    Luan, while many people think of complementary and alternative as the same thing, I tend to go with this explanation:

    http://www.clarksnutrition.com/common/adam/CAM_Links.asp?storeID=2691B1FE187D41ACB869A85CA5957A0A

    In case anyone doesn't want to read the entire piece, here's the difference explained:

    The terms "complementary medicine" and "alternative medicine," although often used to mean the same thing, actually have quite different implications. Complementary medicine refers to medical practices used together with conventional medicine while alternative medicine is used in place of conventional medicine. An example of complementary medicine is the use of hypnotherapy together with pain medications to reduce anxiety and enhance relaxation in people recovering from severe burns. Following a special diet rather than taking medications to treat attention deficit/hyperactivity disorder (ADHD) is an example of alternative medicine.

    So, based on this understanding, I believe Kat's topic heading is right on for what she's asking.  Deanna

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Deanna, then "vs" should not be used. She is talking about "traditional" meaning conventional vs. the others.



    That was not my point. My point was that conventional med is using botanicals and other elements that are classified under "natural" products more and more so and that the pharmacos are sweeping the rain forests in search of new drugs. Now, a yew tree is a yew tree whether conventional or alternative medicine uses it...

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2011

    Luann, I think you and I are reading her post a bit differently. I thought she was asking if using alternatives alone are sufficient, or do those of us who believe in them only use them along with traditional approaches. 

    I totally embrace nutrition, physical activity, peaceful living, meditation, avoiding toxins and plastics, massage etc. etc. and will include them into my life more than ever now (for example - I am embracing every meal is an opportunity to kick cancer's ass!)... but can this alone take the place of surgery? Can this take the place of rads or chemo? Or does it just work along with the more traditional approaches?

    And, sorry, but I don't understand your point about the yew tree.  Are you suggesting that pharmaceuticals are somehow natural (or not that far from alternative) because one of their many ingredients might be derived from a natural source?        Deanna 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Deanna, i,m not suggesting, it,s a fact :)
    BTW, ure darn lucky to be followed by an integrative practionner. Integrative has not made its way north yet, although British Columbia is making lots of headway



    Again, it,s the use of "vs" that "confuses"

  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2011

    Hi kks_rd,you've gotten some great information here (and a wonderful compassionate tone everyone).  I'm also doing the "complementary" therapies route. Many sources (like Block) that tout complementary therapies stress these should be considered in conjunction with the traditional onc. FWIW, all the cancer clinics around No. Calif.  offer a suite of free complementary therapies, so it doesn't have to be either-or, and some traditional ROs and MOs are at least somewhat open-minded.

    Sorry to hear you came back positive for the BRCA gene. From my understanding, that changes the risk characteristics, so if that were my situation, I definitely wouldn't ignore the science behind traditional treatment.

    FWIW, I've had a  few well-meaning people suggest alternative treatments. You might want to learn the facts of what they are recommending.  One neighbor told how he was able to excise a tumor from his back using some alternative salve, but when I told him  a) not all tumors are malignant and b) that his symptoms sounded like a cyst, not even a solid tumor, well, he didn't want to talk about it anymore. People are well intentioned, but I fear that some of their advice is based on hearsay and (don't want to sound mean) wishful thinking, vs. any solid science.   In contrast,  another neighbor said that her mother had eaten healthy (all organic for 30 years) and seemingly had done everything right, but got cancer twice (BC, and the after kicking that, got another cancer many years later). That was unsettling to hear because my first change after Dx was to eat all-organic, all-the-time. Wish that were the magic bullet, but since it's not, I want to consider all the options and make the choices that will improve my odds the most. Good luck! Stressful time for you, I'm sure. And I think you know this, but there are no guarantees in any of this. Dammit.  My inner (and outer) control freak really wishes there were.

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2011

    Luan, to me, what you're proposing as fact would be like saying strawberry jello is a lot like organic strawberries, when, in fact, although the jello may contain flavor derived from natural strawberries, it's also been taken far away from being a natural food because it's mostly refined sugar (which also starts out from a natural source, but is hardly health-giving), lots of red dye (which is carcinogenic), possibly pesticide residue from the strawberries, and who knows what nasty "natural" source (old bones?) for the gelatin.  So, in the end, although it may contain several natural ingredients, it's not even closely related to an organic strawberry and eating it will not give you the same nutritional benefits and can actually be harmful.

    But we're probably getting way OT here, and I'm not trying to change what you believe, just sharing where I'm coming from.    Deanna   

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Patzee, i totally relate, taking care of our bodies, now this, is really unfair. Being afraid is not going to help u though. u really have to work on your confidence in ure decision and listen to your heart and body. must have been an excruating decision to make, one i could not afford, being stage 3. do u have practionners following u ?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    DLB, right on !!!! LUVE ure metaphor



    My point was....:) u,ll never have the pharmacos admitting to using "natural" or "alternative" ingredients, back to the yew tree...

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    Plants can be poisonous don't forget. Now as for taxotere/taxol - I'm really glad someone discovered the Pacific Yew tree and what it could do even if it is a poison. Taxotere is a semi-synthetic derived from the European Yew tree.

  • kks_rd
    kks_rd Member Posts: 363
    edited May 2011

    Goodness everyone, I didn't expect this kind of response!  Although once I read the other thread, I could see that this is a hot topic. 

    And I apologize for any confusion - I guess it is a matter of semantics but I really wasa wondering if there is any solid evidence that one could be cured with solely alternative therapies.  So maybe the subject line should have read alternative only vs. integrative/complementary vs. traditional medical (or something)?? FWIW, I think Deanna "got" what I was trying to ask, however poorly.

    Indeed it is a spectrum and while we often see the traditional side represented, I still haven't heard from someone who made the choice to ONLY embrace non-traditional therapies.  It has been suggested that I should forego surgery (to say nothing of chemo, rads, etc.) because alternative treatments can "cure" me and spare me from getting cut up.  Is this a realistic assertion?  I really am making a HUGE effort to get educated about everything (in a short period of time)!

    Sounds like a lot of people treated their bodies like temples and still find themselves in this situation.  How horrible :(  @patzee you are the only one who can decidewhat is right for you. I hope you never regret your decision... and I love your sig line!  I really appreciate the responses and PMs from everyone and just want to give you all a big hug!!

  • kks_rd
    kks_rd Member Posts: 363
    edited May 2011

    Forgot to add the unfortunate news of the day. MRI shows the tumor is much bigger than originally thought and I am now solidly in stage II territory.

    I'm keeping my chin up though, as much as possible...!  

  • Yazmin
    Yazmin Member Posts: 840
    edited May 2011

    kks_rd:

    Sorry about today's news (that your tumor is bigger thank originally thought). However, many people, including me, are doing WONDERFUL with the very same tumor (IDC, 3 cms, Stage 2, Grade 2) more than 5 years after being diagnosed. 

    Unfortunately, I am one of the many women that were put through chemo (only to be told after 5 out of 6 infusions that it is now known that chemo does not benefit our type of tumor (ER+/PR+/HER-), meaning that it does practically nothing in terms of preventing a recurrence from this tumor type. 

    As you are finding out, the "conventional" versus "alternatives" topic is hot. 

    While there is no guarantee when it comes to cancer treatments, you have also discovered by now, that many are choosing to use both conventional and "alternative" therapies. This is like politics ): right, center, left, with most people leaning more towards the right or more towards the left, without being unconditionally "rightist" or "leftist".

    Case in point: Beeb 75 says above: 

    1) There are no guarantees that the cancer won't come back, no matter what you do

    This is, in my opinion, a very sensible statement.

    And then:

    2) There is no trustworthy research on alternative or complimentary tactics that can rid you of cancer.

    That's for you to decide for yourself, after asking, searching, asking more, and then searching more. I, for one, have come to the conclusion that research has not made enough progress in cancer treatment due to a general unwillingness to take chances with more exciting (and perhaps a little risker) approaches, for fear of compromising financial gains.

    Anyway, I can assure you that you have every reason to keep your chin up. Hang on!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Yasmin, we speak same language :) u say er/pr pos Her neg dont benefit from chemo...pleasssse elaborate



    deanna, i guess what.i was trying gto get across is :



    "Science-based" research, conventional med and pharmacos sleep in same bed and alternative, integrative and complementary in their own and in between there are those researchers with an open mind trying to get published



    suepen, yew tree was most likely discovered eons and eons ago by indegenous tribes

    kk, sorry about the bad news :(

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited May 2011

    kk - I doubt you will find anyone who has survived triple negative bc using alternative treatments only. Listen to your doctors. Surgery and chemo are essential for you.



    (((((((HUGS)))))))



    Sue

  • Yazmin
    Yazmin Member Posts: 840
    edited May 2011

    After indiscriminately putting millions of women through chemo over the past decades, chemotherapy for ER+/PR+ started to be challenged in 2006: this issue started to be vastly publicized at that time:

    Studies Challenge Traditional Breast Cancer Treatments (April 12, 2006)

    clip_image001.pngBy GINA KOLATA

    Published: May 12, 2006

     Multimedia

    0clip_image002.png

    Video: New Ideas on Chemotherapy

    If the new ideas, supported by a recent report, are validated by large studies like two that are just beginning, the treatment of breast cancer will markedly change.

    Today, national guidelines call for giving chemotherapy to almost all of the nearly 200,000 women a year whose illness is diagnosed as breast cancer. In the new approach, chemotherapy would be mostly for the 30 percent of women whose breast cancer is not fueled by estrogen.

    So far the data are tantalizing, but the evidence is very new and still in flux. And even if some women with hormone-dependent tumors can skip chemotherapy, no one can yet say for sure which women they might be. Some doctors have already cut back on chemotherapy, but the advice a woman gets often depends on which doctor she sees.

    It could be a decade before the new studies — one American, one European — provide any answers.

    "It's a slightly uncomfortable time," said Dr. Eric P. Winer, who directs the breast oncology center at the Dana-Farber Cancer Institute in Boston. "Some of us feel like we have enough information to start backing off on chemotherapy in selected patients, and others are less convinced."

    Among the less convinced is Dr. John H. Glick, director of the Abramson Cancer Center of the University of Pennsylvania. Dr. Glick tells his patients about the new data but does not suggest they skip chemotherapy. After all, he notes, the national guidelines were based on results from large randomized clinical trials. And the recent data indicating that some women can skip chemotherapy are based on an after-the-fact analysis of selected clinical trials.

    "We're in an era where evidence-based medicine should govern practice," Dr. Glick said.

    For women with breast cancer, of course, the uncertainty is excruciating. Faced with a disease that already causes indecision and anxiety, they are now confronted with incomplete data, differing opinions from different doctors and a choice that can seem almost impossible: Should they give up a taxing treatment when all the answers are not in and they have what may be a fatal disease?

    "If the medical profession is not even close to being of one mind, how is the woman to know?" said Donald A. Berry, a statistician at the University of Texas M. D. Anderson Cancer Center, the lead author of a recent paper questioning chemotherapy's benefits in many women.

    Barbara Brenner, who has had breast cancer and is executive director of the advocacy group Breast Cancer Action, said, "There's a real problem," and added, "We finally tell people at the end of the day: 'You're going to get a lot of information. Trust your gut. Nobody has the answers.' "

    "I'm really glad I was diagnosed 13 years ago," Ms. Brenner said, "when there were fewer choices."

    Doctors worry, too. It took two years before the National Cancer Institute and its researchers could even agree on a design for the large new American study that will test the idea that many women might safely forgo chemotherapy.

    The study, which starts enrolling patients at the end of this month, will involve women whose cancers are fueled by estrogen and have not spread beyond the breast. They will be randomly assigned to have the standard treatment — chemotherapy followed by a drug like tamoxifen that starves tumors of estrogen — or to skip chemotherapy and have treatment only with a drug like tamoxifen.

    Unlike the American study, the one now planned in Europe will also include women whose cancer has spread beyond their breasts into nearby lymph nodes. The American study may eventually add such women, said Sheila E. Taube, who directs the cancer diagnosis program at the National Cancer Institute.

    Dr. Taube said the debate reminded her of one a few decades ago, when the question was whether all women with cancer needed mastectomies or whether many could have a lumpectomy instead. "To me, the situations are analogous," she said.

    The chemotherapy question starts with American and European guidelines that say almost every woman with breast cancer that has gone beyond its earliest stages, when it is confined to the milk duct, should have the treatment. And for good reason, many cancer researchers say: a series of large studies has shown that chemotherapy saves lives and that newer and more aggressive regimens are improvements over older ones.

    That has led doctors to feel most at ease giving very aggressive treatments to almost everyone.

    _____________________________________________

    And more recently (this other issue was also discussed at ASCO 2011):

    "2 nodes positive and no chemo"

    http://community.breastcancer.org/forum/108/topic/765323?page=4#post_2295096 

     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Well Yasmin glad to hear you,re doing Wonderful be it due to chemo or not

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2011

    Hi again Kat,

    You said, "I really was wondering if there is any solid evidence that one could be cured with solely alternative therapies. "

    That's the million dollar question!   I suppose it depends on what you consider "solid evidence" and what exactly you define as "alternative."   For me, I've been researching a LOT since my diagnosis in 2008, and I have yet to find ANY solid evidence that one could be cured with solely alternative therapies.  So IMHO the short answer to your question is NO.  I consider alternative to be defined like most others - as alternative, i.e. "instead of" conventional.  So pure alternative treatment, IMHO, would exclude even surgery to remove the primary tumor.  There's a saying that there's no such thing as "alternative" medicine - if something is shown to work safely and effectively, it becomes part of "conventional" medicine.  Most of the alternative treatments you hear about are based on testimonials, rather than facts.  Conspiracy theories about "big pharma," rather than reality.  A lot of them are hawked by people who directly or indirect salespeople who may even contact you privately so they can't be disputed here in public. A lot of them use fear as a weapon - fear of the big bad "slash/poison/burn" treatments.  Fear of the awful neglectful, uninformed/unenlightened medical professionals who are just in it for the money.  One of their biggest arguments is that conventional treatment is not perfect or guaranteed, so instead they try to push "alternative" treatment that is often specifically UNproven or DISproven - makes absolutely no sense to me.  

    There are a few people here who are very vocally anti-chemo and anti-rads, but again - the vast majority of us use a combination of conventional treatment and complementary/integrative therapies.  As several others have mentioned, a lot of large conventional, well-respected cancer treatment centers offer complementary and integrative options.  My very mainstream oncologist is a DO, and firmly believes in the benefit of adding integrative therapy to conventional options. It's not unusual, so be sure to talk with your doctor about his/her views and switch doctors if necessary to find one who is aligned with your values and expectations.

    I don't see whether you are HER-2 positive or negative, but there are several things that stand out to me that would make your disease especially aggressive.  It's critically important to be realistic about your specific situation - in your case, BRCA positive, invasive, large tumor size, young age, and hormone-negative - all point to aggressive disease with a quite high recurrence risk.

    When considering your options, please very carefully consider your sources.  Never rely on testimonials alone - look for facts and evidence.  Talk with your doctor and get another opinion if necessary - you need to know what your options are and exactly WHY they recommend treatment X instead of treatment Y.  

    There are no guarantees with any treatment.  It's all about maximizing your odds of successfully beating this.  You have a good chance at success, but only you can decide how much risk you're are comfortable with. 

    For me personally, I had a lot of the same factors as you, and I took every possible conventional treatment to mitigate my very aggressive disease.  I complement that with lots of other "complementary" treatments, but I knew my best chances were at the outset.  I'm triple negative, so I don't have any hormonals or other medically protective options to prevent recurrence, and experimental alternative treatments and monitoring didn't make sense to me.  I'd do all the same conventional treatments over again in a heartbeat.   

    I realize I'm being long-winded here, but I just want you to have real evidence-based information and facts to base your decisions on.  

    Question everything - ask here and elsewhere.  It sucks that you're in this situation, but there's a ton of really great information here and support for whatever path you choose!  HUGS!!!

  • Yazmin
    Yazmin Member Posts: 840
    edited May 2011

    Hi, Luan:

    Yes, I am feeling healthier, fitter than I did when I was 24-years old; back then, I could not care less about diet; I kept rushing ahead without a care in the world, and I constantly felt exhausted. That was decades and decades before cancer.....

    Is chemo responsible for the way I am feeling now? I don't think so, since it is now widely recognized that chemo does not affect the outcome with my type of cancer.

    But who EVER knows? Did chemo "zap" a few cells that were going to "go bad"? There is just no real answer in treatment options. We can only make the best possible choices with the information that we have, at the time that we have it. 

  • dlb823
    dlb823 Member Posts: 9,430
    edited May 2011

    Kat, I'm sorry about the surprise news from your MRI.  I think the potential for information to change prior to a final surgical pathology often isn't stressed enough to us.  I know I was totally blindsided at one point by a similar increase in staging.  It can be a huge emotional blow when our world has already been turned upside down and we're so emotionally vulnerable.

    Two points about the shift in attitude about chemo for some early stage bc...  First, that research  assumes an ER+ woman will be doing either Tamox or an A/I, which happens to be something a percentage of women (like me) later decide against doing.    

    Also... research like this is one reason I so strongly recommend to women that they go to or at least seek a 2nd opinion at an NCI-designated comprehensive cancer facility, because those oncologists are often the ones doing the research, so are usually 6 mos. to a year ahead of the curve.  I was fortunate in 2008 to be told (@ UCLA) that a regimen containing Adriamycin (AC+T, which had been recommended to me by a local oncologist), was not effective for ER+ bc -- well ahead of the curve.  I did get TC, but mostly b'cuz of a lymph node with extracapsular extension (one of my surprises along the way).

    Kat, at the risk of sounding anti-"alternatives only" (which I absolutely am not)...  the "alternatives only" people I talked to when I was desperately trying to figure out which way to go, all seemed to lump cancer into one disease or body dysfunction.  What concerned me at a gut level was their lack of sophistication re. what I have since learned is a very complex disease.  High-ph water, for example, the foundation of a program enthusiastically explained to me by a compounding pharmacist who claimed to know 8 individuals with lung and other cancers who had been cured by drinking volumes of it, just didn't exhibit the expertise about breast cancer or instill the trust I was looking for at the time; although I certainly learned something about body PH.  But, again, that's just me.     

    Oh, one more point... if you do find women who have gone the "alternatives only" route, please be very careful to find out exactly what type of bc they had.   Even here on BCO, it seems like those who have refused more aggressive tx also didn't have the most aggressive bc's.      Deanna

  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2011

    Yazmin, thanks for posting that NYTime article. 

    kks_rd, I know surgery has risks, but not having surgery has risks too. I've never heard of an alternative treatment that would make a tumor go away. Are there facts and a track record behind that recommendation, or is it anecdotal information? Cancer treatment seems to have two phases: a) treating the current known tumor and b) reducing risk of recurrence. Along with my lumpectomy, I had a SNB to see if it spread. Some people say there are non-invasive tools to measure something (the heat?) of SNs to see if cancer has spread, but after a SNB, the pathology lab studies the nodes under a microscope. This provides much more detailed info.  If there was any evidence that my BC had spread, I'd want to know. In my case, the recovery from surgery was a snap.

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2011

    Deanna, excellent points as usual!   Especially this:

    "the "alternatives only" people I talked to when I was desperately trying to figure out which way to go, all seemed to lump cancer into one disease or body dysfunction. What concerned me at a gut level was their lack of sophistication re. what I have since learned is a very complex disease. "

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