Conventional vs. Alternative vs. Complimentary Treatment

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Hello. My girlfriend, Audrey, of 10 months has had two lumpectomies: Left (Her2 +) 8mm lump removed 2012; Right (Her2 tripple) removed March 2015. A genetic testing confirmed that she has a genetic mutation. She is considered stage 1.

Audrey is 42 and in excellent health. She is a vegetarian. She hikes, kayaks, bikes. She is an athlete. We are in love. I have two daughters from a previous marriage. We want to marry.

Audrey is very concerned about the side effects of conventional treatment. Since the discovery of her first lump in 2012, aside from conventional imaging diagnostics and surgery, she has elected to adopt a supplement, herb, and diet based treatment protocol. For the last 8 months, she has consulted with a professional clinic which has modified her own protocol with an extensive and elaborate regimen of herbs, vitamins, and diet.

Audrey is very smart. She has a big heart, loves nature and animals. She is extremely distrusting of conventional treatment due to reports of side effects: sickness and disease coming from chemotherapy and radiation. She is constantly researching alternative methods. She has been met, unfortunately, with mostly unsympathetic and often condescending attitudes from most of her Conventional/Western doctors.

Is there anyone out there who has done extensive research and comparison of conventional treatment (chemo, Herceptin, and radiation) versus Alternative/Complimentary treatment, or who knows of someone who has? The survival rates and statistics of these comparisons are what she seeks.

Audrey is obsessed with details, percentages and statistics. Other than some books, articles, google searches and words of wisdom from doctors, I have no other real data for Audrey.

My own (uneducated) common sense tells me that if, after the first lump removed in 2012, that if her diet and herb treatment was successful, the second (new, non-recurring) lump would not have resulted. We managed to find with a doctor who mentioned that there are trials presently underway and close to FDA approval that might pave the way for Conventional treatment of Herceptin without chemotherapy. But, Audrey is frightened by various articles indicating that even without chemotherapy, Herceptin, alone, has damaging side effects.

Again, out of ignorance, I just don't know what to say or offer her. My gut is, along side her continuing supplements and diet (which seem to be a good idea for anyone - all of us - as a means to boost our immune system and, otherwise, stay healthy) is to find an oncologist in whom we trust, and go from there.

I am very grateful for your thoughts.

Warmly,

Ben

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Comments

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    Ben, conventional treatment does have side effects, that is true. Sometimes the side effects are severe, even fatal. In most cases, however, the side effects are temporary and not that serious.The "side effect" of not getting proper treatment is death. Herceptin has drastically changed, for the better, the prognosis of HER+ cancers.

    There are a few observational studies of alternative treatment and they tend to support your gut feeling. That said, exercise definitely helps, both against side effects of treatment and against the actual cancer. So it may be that Audrey has an early stage etc in part due to her healthy lifestyle. The problem is just that a healthy lifestyle by itself is not enough.

    I suggest you read "The Emperor of All Maladies." It is a history of cancer, and it has a very good chapter on herceptin.

  • juneping
    juneping Member Posts: 1,594
    edited April 2015

    Ben,

    If I had money, i would go for alternative...actually right now i am off tamoxifen because it gave me edema.

    here is the place i would go...it's in NJ

    http://www.mbschachter.com/

    give them a call and they'll call you back. their CS is excellent and they didn't push me for any tx at their center. their protocol is pretty rigorous. not just supplements.....they're expensive. initial fee (consultation + tests) is 5K but the doc is MD so you can claim your insurance which you'll have to do it on your own. they give you the code etc.

    since she's a vegetarian, did you consult with a dietitian or nutritionist? i read that protein is very important to help our immune system.



  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2015

    Hi,

    The link above (Schacter etc.) is for complimentary medicine. Their sight states that conventional tx will be used if deemed necessary, in additional to complementary tx. They treat a wide variety of illnesses as well as cancer. Wonderful anecdotes, but since you mentioned that your girlfriend was looking for comparative stats, those seem to be lacking. Not saying that this is a bad place, but conventional tx is still part of it, if deemed necessary. Since your girlfriend is HER 2+ , I imagine that Herceptin may well be necessary . Take care

  • debiann
    debiann Member Posts: 1,200
    edited April 2015

    Was the tumor also ER+? If it is then the hormone therapy is also very important. Yes, some have side effects, but for most the se's are minor or none at all. These drugs can halt progression even at stage lV. They have saved or prolonged many lives often with minimal side effects.

    The biggest complaint most have with herceptin is a drippy nose and some achiness. There is frequent testing to make sure there is no damage to the heart. If the LVEF drops herceptin can be stopped and the heart function goes back to normal. 

    You probably already know that Her+ is a more aggressive cancer, that's why even  when detected early, chemo is often recommended. Chemo sure sucks for a few months, but you get through it and life goes back to normal. 

    When I was first dx I didn't want to do chemo, then I read an article that changed my mind. It described what dying from cancer is like, noting that you can choose to forego chemo because you fear a few months of se's, but dying from bc can be slow process with much worse se's.

    I think we fear the treatments more than the cancer  because they are more tangible.  For many, bc is nothing more than a white splotch on a mammogram and a bunch of big words on a pathology report. Often there are no symptoms. But losing one's hair during chemo is very obvious. (Truly not nearly as bad as I thought it would be).

    If your GF decides to consider conventional tx, it will be important for her to know she has your full support and help. Women are so accustomed to taking care of others, we can't imagine being out of commission for months while others take care of us.

    Good luck.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    Kayb brings up an important point - sources. Certain sites/sources are not to be trusted: Dr. Mercola is high on the list as is Naturalnews (Mike Adams), Ty Bollinger, Dr. Gonzales, Gerson, just off the top of my head. It can be really disorienting in the beginning, because the quacks are very good at sounding all scientific, even when they are talking out of their rears.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    Hi Ben. First, I'm so sorry about your girlfriend's diagnosis. Other than this cancer diagnosis, it sounds like she takes good care of herself, which can only be helpful regardless of the type of treatment she chooses. In order to go into this with eyes wide open, I also recommend you do some research on the FDA and it's shortcomings and improprieties and the manipulation of data and statistics before making any final decisions regarding treatment. I think it's extremely important to weigh out all options. I couldn't agree more about having an oncologist whom you trust...one who is willing to disclose everything about treatments, the good, and more importantly, the bad. Ask a LOT of questions and expect honest answers. Good luck to Audrey in her treatment decisions. It's tough.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    Leggo, that is a very good point about finding an open-minded onc with an integrative bend to be able to get the lowdown on any and all approached to treatment.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited April 2015

    My advice is for you is to convince Audrey to find an oncologist she can put her trust in and follow the treatment suggested. Side effects are temporary compared to the suffering she will experience when, as it most surely will, alternative treatment fails and she finds herself in the terrible situation of palliative care.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    That's a perfect example of what you don't want in an onc. One who uses "get chemo or die" to scare you into it when you're not 100% comfortable with the treatment plan. If there's no room for discussion, I'd walk away.

  • abigail48
    abigail48 Member Posts: 1,699
    edited April 2015

    youth is definitely a consideration. I've never seen much in dr mercola that I disagreed with. be aware friend that there's a group of women here who will come on rapidly in favor of conventional therapy & discourage natural remed[es

  • abigail48
    abigail48 Member Posts: 1,699
    edited April 2015

    & also a consideration" to know your own body. there are a few people, perhaps known as sensitives, whether they know it or not are extremely sensitive to everything physical. and mental these people should be very careful over what to believe which is perhaps not what their intuition tells them. knowledge of one's own body usually comes with age, as contrasted with intuition

  • abigail48
    abigail48 Member Posts: 1,699
    edited April 2015

    if we had socialized medicine we would not need to follow the money, but then talented surgeons, etc, would not become doctors

  • HLB
    HLB Member Posts: 1,760
    edited April 2015

    Hi Ben, A lot of us are like Audrey in that we do lots of research and want to know stats, SEs, pros and cons of EVERYTHING. she should get on this site herself because she will learn more here than anywhere. I also have a mistrust of convential medicine, however I will do my research and take what I feel is right and I will leave the rest. I know there are people who have healed with alternative and diet, but I think you have to be extremely disciplined and then there still is no guarantee. and with having a mutation that makes it even harder. I would take into considertaion are the SEs temporary or permanent? Many times you can manage or pevent certain SEs. one example is when I did chemo I took 390 mg of CoQ10 to protect the heart. I know herceptin has cardiac SE but I do not know if the COQ10 would work in the same wAy with that as it does with chemo. this is all stuff that can be found with research and asking questions here. I am not HER+, but based on what I have learned from a lot of the people on this site, it is like a miracle drug for HER+ patients. I recently learned of a place in mexico called Angeles that she might want to look into. There are some people on youtube who talk about their experience there. I don't know a lot about it but they do a lot of alternative treatments, designed specifically for the patient. It is definitely important to find a trustworthy and open minded integrative oncologist, if possible. Best of luck to you and Audrey.

  • wrenn
    wrenn Member Posts: 2,707
    edited April 2015

    i think Ben has figured out that he landed in a very traditional forum and has moved on.

    Abigail did you mean "women will come on 'rabidly' in favour of conventional therapy"?



  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    " Side effects are temporary compared to the suffering she will experience when, as it most surely will, alternative treatment fails and she finds herself in the terrible situation of palliative care".

    When I first read that comment I was so flabbergasted, I couldn't even comment rationally. Do you read the boards at all? Do you have the slightest clue about how many women, including myself did all the required treatments and ended up in that position anyway? What an ignorant comment. Geezus.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    Abigail, seriously? I grew up in a country with socialized medicine and we have some excellent and talented surgeons and doctors. I have also been mangled by a surgeon over there in the land of the free and libertarianism.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    HLB, good points also. But even permanent SEs are not always as scary as they might sound. For example, I have permanent neuropathy from taxotere treatment. Oh dear! How terrible! Except, the neuropathy is in 2 spots in my fingertips and each of those spots is about 1/8 of an inch. So, there can be horrible SEs, temporary or permanent, but there are also SEs that definitely are SEs of treatment, and even permanent ones, that simply are not that big a deal.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited April 2015

    "When I first read that comment I was so flabbergasted, I couldn't even comment rationally. Do you read the boards at all? Do you have the slightest clue about how many women, including myself did all the required treatments and ended up in that position anyway? What an ignorant comment. Geezus."

    Why complain about people expressing opinions based on their own experiences, when that's all you're doing.

    And how about acknowledging that people who do the suggested medical treatments have a far greater chance of survival than those who battle through without it. Do you read the statistics at all?

    Ben has every right to hear everyone's opinions before he makes up his mind.



  • HLB
    HLB Member Posts: 1,760
    edited April 2015

    That is a good point momine, I should have expressed that as well. I will also add that was terrified to do taxol based on the SEs that I read about. But it turned out to be easy for me compared to the AC, which I was not as afraid of. I have learned you have to investigate what prcent of people had severe SEs. So far I don't sem to get many at all in general. however I am afraid of taking afinitor because the SEs can be serious and they are not as rare as I would like to feel comfortable. It's just so difficult in general when you don't have unquestioned trust in doctors the way I did as a kid.

    As for telling someone they will "most certainly" die without conventional treatment, that is not helpful at all and creats even more turmoil and indecision in my experience.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    HLB, if you are referring to my initial statement, I specifically said "proper" treatment, and I stand by that statement. Depending on the kind of cancer, the stage etc, "proper" could encompass many things and might not include chemo/rads, for example.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

     Further to my post....Ignorant AND disrespectful. 

  • juneping
    juneping Member Posts: 1,594
    edited April 2015

    if Ben wants to know all the pros and cons of chemo...don't you think he would have asked in that subforum instead of here.

    talk about glass house....tsk tsk tsk...

    Ben - if you're still reading....sorry to tell you most of the posters responding to you are pro chemo. most ppl who are doing the alt are not here anymore. because as you can see.......

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    June, Ben actually asked for statistics that show the efficacy of alternative treatment. His friend's problem is twofold, she distrusts conventional medicine/is afraid of SEs and her doctors so far have not done a good job taking her concerns seriously. Several people suggested finding a more understanding and flexible doctor, which is very good advice. Several of us have also explained that SEs may the lesser of two evils in many cases. Nobody so far has offered the stats and percentages that Ben actually asked for. To the best of my knowledge very little research exists and what research has been done (comparing groups of patients with similar disease stats, where the patients in one group refused or discontinued prescribed treatment) does not help in this particular context. Lastly, this is not the alt forum.

  • dltnhm
    dltnhm Member Posts: 873
    edited April 2015
  • HLB
    HLB Member Posts: 1,760
    edited April 2015

    No No Momine, I was making a general statement there, not to anything you said. was hoping the new paragraph would make that evident. sorry.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    I think you can stop worrying about any of us influencing Ben. We're delusional and semi-literate, remember?

    https://community.breastcancer.org/forum/31/topic/...


  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    No, Leggo, you are not. My comment in the page you linked had to do with something unrelated to BC or BCO. However, my conclusion in that post – that a lot of people have trouble reading and comprehending medical papers – stands. I know it is difficult for me at least. The question is what people do with that difficulty. Again, my comment had nothing to do with this place, and most people here are far more serious and careful than the poster I was talking about.

  • juneping
    juneping Member Posts: 1,594
    edited April 2015

    they don't worry about us......it's how dare you to live without the suffering from chemo.

  • Momine
    Momine Member Posts: 7,859
    edited April 2015

    June, no it really is not, but I doubt anything I say will convince you of that. I am very sorry that you think that.

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