Anyone else out there choosing 100% Alternative?
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Hahahaha - you ladies just reminded me of the scene in St. Elmo's Fire where the prim and proper family is eating dinner and they keep whispering the word "cancer" -- not sure if anyone remembers that one. On a side note my sister is one of those who would let fear rule her decisions. As we have a strong family history of BC (myself - mother- 3 maternal aunts- 2 maternal cousins) and I am BRCA2 positive my sister tells me all the time "I just know I am going to get it (i.e. cancer) -- it is just a matter of time". I always stop her and tell her "Yeah meanwhile I actually HAVE it". hahahaha Anyway every year when she has her Dr. apt and mammo she calls me and asks me if she should consider this or that because her Dr. suggested it (mastectomy - tamoxifen - etc..). I always tell her to research things and determine if they are best for her - not to just go by the Dr. recommendation. I also keep reminding her that cancer is NOT necessarily a death sentence. I have found both of my cancers on my own (mammograms and blood testing did not) and both times I was in the earlier stages. I think people sometimes forget that more people survive from cancer than die from it. I refuse to live in fear.0 -
I think we are all 'A' type personalities...a little bit controlling. The thought of leaving my cancer/life in someone else's hands doesn't sit well with me. I need to know all there is to know so that I feel in control of my life. Others are perfectly happy not understanding the details. Neither is right or wrong it's just how we each try to cope.0 -
Me? I just hate not knowing something; hence, I am a voracious reader, researcher and questioner. I understand not everyone is like this and some doctor's don't like being questioned (and some people, as well!), but - for the most part - I've been really lucky with my treatment team. Every member has been willing to discuss research (both conventional and alternative), answer questions and suggest further resources.
I, also, don't tend to think of things as "black" or "white". For every study that says one thing, five studies can be found that say the opposite, and vice versa. That's why I often look beyond the study to who is conducting it and any bias they may have to determine if the information is relevant or possibly skewed.
Same with drugs. Some people respond, some people don't. Tylenol doesn't work for me - never has - so I use another analgesic if I have pain. My mother is the opposite; Tylenol is the only thing that works for her. Everybody's phsiology is different.
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Tylenol doesn't work for me either.0 -
Is anyone here still discussing 100% Alternative? I was diagnosed almost 2 years ago and refused any conventional treatment. Willing to discuss alternattives if anyone is still around...
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mapat
this thread is more active...pls come join us.
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Just finished reading that thread--lots of interesting stuff. But I would like to revive this one, if possible. After my biopsy confirmed cancer, I chose to not have any conventional treatments (chemo, surgury, radiation) though all were recommended (pushed). The more questions I asked, the more they wanted to cut off. I said NO and prefer to focus on 100% alternative. Anyone else?
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Welcome Mapat,
I chose only to have surgery but with no lymph node monkey business. I seem to be okay. I did a lot of different things and have added and subtracted over the years. I'm always on the look out for new things. Join LightandWind's thread!
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Hello Mapat!
I have been following this thread since June or July last year. I am very interested on alternative methods although I had surgery, chemo and rads. As you said, everyone around you pushes you into the conventional treatment and when I "woke up" I had had surgery and had started chemo. I am 37 with one child and 2013 has been really hard on me and my marriage and in my case homeopathy, yoga, nutrition has helped me a lot. The information I have read here has helped me as well because even if I have followed the conventional treatment and protocol, I really believe in the alternative or non traditional options... I know there are different discussion forums and have read some of them... what I can say is that we are our advocates and that we have to believe on what we do. Not your friend, not the doctor, but you. That is what I believe you have done and that is why you are doing well.
Hope you get more info to solve your doubts!
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Cuculi, I'm unclear as to whether having done the traditional route, with its well-documented risk reduction, leaves you feeling confident that you're starting from a statistically optimum point, or whether you kind of wished you'd skipped some of your treatments? I absolutely loathed rads, couldn't decide whether it was good or bad for me, but, once it was over, was surprised to find myself delighted that I'd taken advantage of that tool. It's because I've used the available science that I find a pretty high level of satisfaction in menu changes, increased exercise, stress reduction, and all the minor things I'm either already doing, or am learing about.
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I'm 100% holistic for now, though not ruling out anything just yet. My holistic doc suggested that if we postponed the 1/16/14 surgery then he could help me shrink this back to a Lx or even no surgery at all. At first I freaked since surgery was scheduled, but after I made the phone call I was soooo relieved! Now doing everything he tells me to do plus more and I will lay out my protocol later--starting mercury and lead detox right now. One thing I have noticed though is that the amount of sleep that I get has a lot to do with how I feel and the tumor was not growing at all, but last week I did too much and had like 5 nights in a row where I didn't get enough sleep and it seems like the tumor may have grown some. Now I'm really working on that b/c I do not want the surgery if I can help it but if it comes to that, I will. Doc said detox should knock this back so I hope he's right.
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When I wrote that last I was so scared but started my period a couple of days later and now it's smaller than what it was before. I swear this thing is shrinking but that just goes to show how much swelling I have. I was 1-1/2 weeks early this time, but light.
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OK, here's the frustration that I'm having with being 100% alt--for now anyway. Things seem to be going well and I trust my holistic doc but he isn't much interested in the tumor as he's into strengthening the biological terrain--getting everything healthy so my immune system will fix it. I'm all for that and things are going well--it's not growing and even seems to be shrinking, but how do I know for sure? How will I know whether I'm going to end up having surgery or not? Holistic doc doesn't measure it and conventional docs don't want to test unless they're doing surgery. I wanted to get an MRI but the doc down here won't order it unless I hire him to do the surgery. The doc in StL won't order it b/c she wants to do the full BMX and doesn't feel one is needed. The MO in StL won't see me until after surgery, but of course I'm waiting to see if I can get out of that.
They're being almost impossible to work with and I'm kind of stuck wondering how I will know? Is an MRI even the best test for this? Tumor markers? PET scan? (I'm concerned about the rad dye and have to take steroids for an MRI since I'm allergic to the contrast dye.) My only gripe with holistic doc is that he's not very communicative on this kind of thing as he doesn't want to tell me what I should choose but I need some guidance. I might add that the mammogram and U/S were not all that helpful--very little showed up on them the first time and the only reason they did the bx was b/c I myself could see the architectural distortion. 80-90% of the time I'm moving forward with complete trust that this will be resolved in my favor but there are dark moments when I want to be sure, and friends and family are starting to bug me about it too. Dx was 11/14/13.
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Wow, that is a tough one. Would a primary doc be authorized to order an MRI, or does it have to be a specialist? Maybe you could call your insurance company and see what you have to do to get one. What a quadruple Catch-22. Maybe look for a different MO who will work with you without surgery? I hate the stupid convoluted system.
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piper - it's tough to be in your position right now. it really sucks when docs care about the next potential profit then the actual person. it's not right. can you ask the surgeon to order a MRI for you and you will pick him as your surgeon and push off the surgery? your life is at stake right now....i would do whatever it takes to get the MRI.
i actually think your tumor did shrink...when i was touching/poking myself, i could feel it grew. the doc said no but now i am more convinced that it grew in that month.
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Piper - My primary Dr. ordered by breast MRI -- do you have a regular Dr.??? p.s. I think the MRI was the best screening tool I used and I truly think that I should have been having breast MRI's all along instead of mammograms. My gynocologist even showed me a few articles last month from medical journals stating that they now believe women with the BRCA mutations should NOT have mammograms before 40 as it is actually more harmful than good. I have had so many mammograms since age 28 I can not count. I am even afraid to go to my dentist now because I am going to tell them that I do not want any xray's unless there is an actual problem with my teeth to avoid harmful radiation and I am sure they are going to tell me that the radiation is minor and not harmful and roll their eyes at me. Sorry, I have had BC twice - any radiation is harmful in my eyes!
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Hello ladies,
Any decision we take will be a tough one. If you are not sure about the alternative treatment I would look for others opinions in order to be "emotionally calm". The same you you look for other opinions in traditional medicine. I dont know how your insurance works, but insurances sucks when it comes to procedures or types of medicine you need. You pay and then they dont want to give you what you need.
Look for other experts, other doctors, someone who knows about how insurance works... it is so hard...
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Cancer tricks the immune system so that it is not recognized by said immune system. This is one of the reasons people still get cancer who are at the peak of good health.
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pipers, one thing that makes external tracking of your tumor tricky is the fact that it's lobular. Instead of a tidy clump of a mass that ductal tumors form, lobular grows in sheets. So it often doesn't show up on imaging or is something that can be felt. My understanding is it's slow-growing, but the "fingers" can migrate.
Surprisingly,the lobular tumor that was removed from my breast was the same size as indicated on the MRI, but I've read that other women here have had larger ILC tumors removed than were predicted through imaging. Edited to add: I felt something odd, which made the radiologist look closely at the 3D mammogram images -- all he found was architectural distortion. Ultrasound didn't reveal much -- the MRI was the most definite diagnostic tool. Many women on the ILC board have posted that MRI was the only thing that showed their lobular tumors.
Btw, I'm originally a Missouri girl myself! :-)
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Yes I'm going to keep pushing for the MRI but I've got to tell you, the insurance co has been a joy to deal with compared to the ridiculous docs. I mean, my plan is not that great and even worse for alternative b/c none of the alt docs are "in network" but I love talking to the rep--she has been very openminded and is working to help me get the most paid by insurance as will be possible. I think my plan is to call the surgeon (local) back and just explain that I'm hoping to avoid surgery altogether so I'd really like the MRI, but of course they have the attitude that it will not be possible to avoid surgery unless I want to die. And yet, the docs in StL will no doubt do a better job if I do have to have surgery. This is tough and I'm going to have to get tough, which is what holistic doc says b/c he says I have a "cancer personality." And yeah, ILC is a weird one to deal with--if I'd just been relying on mammos, they would not have caught it. My aunt had BC twice and both times had just had a mammo one month before and hers was IDC.
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Piper, please remind me, but at your initial DX, did you have a full staging work-up? That is when they do a CT of head, chest and abdomen, as well as a scan of the bones, to make sure there are no detectable metastases. When I was DXed, that is the first thing they did.
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It might be different for lobular, and I might be wrong to begin with, but it is my understanding that ultrasound is the gold standard for measurement; MRI is more diagnostic, looking for a better view and a better understanding of what is going on in there, including the health of our lymph nodes. Could you at least get an ultrasound, or does that not work with your dx?
Also, it concerns me that your guy seems so focused on your overall health and practically ignores your tumor. Has he treated primary tumors before? We all pay lots of attention to our overall health, but, to tell the truth, when we have a specific problem, we generally want a specific focus on that problem.
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brookside, lobular tumors don't always present on ultrasound unfortunately.
Pipers, I hope I don't offend you by saying this, but hearing that this doctor told you that you have a "cancer personality" really pisses me off! I wish it were that simple. But what angers me most is the implication that somehow your essential being had something to do with your getting cancer. THAT is stinkin' thinkin' ... An idea that I hope you can reject with every cell in your body. I don't know you, but you sound like a lovely and warm person. Your personality had nothing to do with your developing cancer. No one knows why we get breast cancer, but I'm pretty sure a "cancer personality" is quite low on the list of possible causes. Hopping off my soapbox to give you a big hug ... xo
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Gemini, ditto, on all points.
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Momine: I had the bone scan and CT and all was clear.
Brookside: The U/S showed very little and the radiologist said the only reason he did the bx is b/c we could see with our eyes that something was going on--that is, architectural distortion. Also, I get the point of holistic doc not focusing on the tumor--you cannot get rid of cancer holistically, and many times not even with conventional, if you don't improve the health of your whole body. The immune system can fight off tumors if its in good working order--you need a good supply of killer cells-- so that's what we're working towards. A big part of my therapy is getting the mercury and lead out of my system--both of which I have way too high of levels.
gemini: Thanks for the hug and I'll take it lol, but doc said that the loveliest people are the ones most likely to get cancer. I read this in a book too--we're the ones who hate to make waves and we want everyone to be happy. He mainly says this to tease me. He also said, more seriously, that cancer is a wake-up call and that this is time to take stock of myself and figure out what it is that I want and not to just go with the program just b/c it's what everyone else does. Fortunately for me though I'm not as big of a weenie as I appear to be and have taken several risks in my life that most folks would consider pure craziness, and this is one of them. This doc has never told me what decisions he thinks I should make, but he did suggest that if I were to postpone surgery he thought we could shrink this back to either a lumpectomy or. . . gone. Said we have a little time to play with. But now I'm at that crossroads of wondering. I trust this doc--my biggest gripe is his lack of communication about it and I'm assuming that we'll know soon.
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Piper, good to hear. It also means that you have a baseline for future comparison.
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Hi ladies....Anyone hear about this amazingly interesting book just released?
http://www.mindbodygreen.com/0-12996/9-key-factors-affecting-radical-remission-from-cancer.html
The author was just featured on Dr. Oz
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JOJO68- I am reading this now, and wanted to share this with the group.
9 Key Factors
So what were the 9 key factors that these patients with radical remissions employed?
- Radically changing your diet.
- Taking control of your health.
- Following your intuition.
- Using herbs and supplements.
- Releasing suppressed emotions.
- Increasing positive emotions.
- Embracing social support.
- Deepening your spiritual connection.
- Having strong reasons for living.
Dr. Turner goes into much more detail about these in the book. In fact, each factor has its own chapter, as well as stories of how patients used these factors to participate in their healing journey.
I think the #1 on this list is the MOST SIGNIFICANT of all. That being said, it is still beyond my comprehension how people who experience cancer of any kind, will continue the standard American diet. I too ate, what would be considered standard foods you'd find in local grocery stores and resturants, until I was diagnosed in 2009. I call it my wake up call! Educating yourself about what it is that you are really consuming, is priority number one. Then number two is taking action to change it. There is no (zero) down side to taking action to radically changing your diet, only good.
Good info. Thanks!
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I find 5, 6, & 7 are difficult to do.
I always find it's hard for me to control my emotions. I bottled things inside
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whatever happened to cindyd?
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