Survivors who have used only alternative treatments
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Mollyann give it a rest. My credibility is measured in the content of my posts not years on this or any site. You always pull the "I've only been on this site since July" BS. Silly argument.
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Mollyann, You have been there since I arrived, and have been a great help to me when needed. I greatly respect your knowledge, and more important your understanding of where we are in our journey.
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Thank you, Kira,
My main goal is to understand the information. I've worked hard at this. I'm no genius but I work hard and take a lot of time going over the information.
LtotheK,
Well, that is refreshing question. I can only tell you how I personally learned how to read studies. Others may have better ways and I would love to hear them. I had two beginnings. First, I read a couple of online articles on how to read studies and what some of the terminology meant. Frankly, I'm not so sure those articles were the biggest help. Then I took the National Breast Cancer Coalition's Project Lead course. Google it, it's worth taking. Its two and a half days. It systematically teaches things like what "risk" means, what relative risk and absolute risk means and a hundred more helpful analytical tools. You get to meet scientists who teach at major cancer centers.
But the main thing I did is just read thousands of studies over the years and discussed them with a couple of online groups who are interested in doing this. It's good to dialogue with people who ask, What about this? What about that? After a while, you get the thrust of the study. After a while, you learn to instantly separate (1) what the study was looking at,(2) what they found and exactly how they measured their findings and (3) the conclusions--which are often vague and modest.
But it took several years of committment. When you read thousands of studies from Pubmed(NOT FROM GOOGLE) you can get an immediate context of where the study belongs in the research world because some of them are listed in the search.
I have a friend who is a "very close reader." She misses no detail. We are good research partners because we try not to read a study with a bias in place. You can see some new people will cherry-pick words out of studies to defend their agenda or say the study is two years old or some other irrelevant info. They do this from lack of experience. But experience is available and it's free so I hope they will just jump in and learn.
Anyone can learn how to read studies and see what's out there in the research world that applies to us. But they have to spend the time. There are a handful of people on BCO who are good, curious, long time readers. A few of us PM. This was probably more than you wanted to know :)PM me if I can be of more assistance.
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Britchick, i was talking about the protocol i received which is TAC and I say with the trillions pouring in they could do way better. MY opinion, the treatment was archaic AND so is the Tamox i have to take for the next five years. I know nothing about Herceptin and don,t pretend to. Digital mammos are hardly accessible in my neck of the woods and they still manage to be extremely painful. I am stating MY opinion from experience, so please
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Another thing to remember is that all of us could get the same treatment, and our bodies could each respond to it slightly differently. So it's true there are not guarantees. But what there is, is strength in the numbers. Yes, a few people have responded well to 100% alternative treatments. Bravo! I'm very happy for them. But millions of others have been helped by traditional medicine, and still more -- like myself -- have chosen to embrace a combination of traditional and evidence-based non-traditional therapies.
I want the benefits of all worlds. Unfortunately we can't predict what will work for us, but we can do our best to stack the odds in our favor.
Anecdotal evidence of a few is interesting. Substantiated evidence is encouraging. I'll take encouraging over interesting any day.
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Texas, correct me if i,m wrong, but i was under the impression that this was a "discussion" forum and not a statistics brandishing competition
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pip...love your comment...If only it were black and white. Or even just the colours of the rainbow. However, it is a disease of many faces, some known, most not known.
True...but, we all need to express our views, convictions, and share what brought us to the choices we've made. We all will advocate what we know to be true and what is working for us. In doing so hopefully we will appreciate the rainbow represented here
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Very thoughtfully said Evebarry
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Eveberry as always well said.
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Kira, are we the only ones still up LoL
I,ll pm you about your earlier question and thank you for your sweet comments my sister0 -
Bombshell....head for cover!
Patzee, in your last nasty pm to me you said, and I quote....
"With all the horrible medical problems you have encoountered over the years, as well as a loss of a full term baby, I cannot believe that you could spew such venom. But snakes usually do. Karma is a bitch, and you will, most likely get more bad stuff by attacking me."
SO, are you saying that because I have such horrible medical problems, and the fact that I lost a full term baby (My first at the ripe old age of 25) are as a result of my being a "Bad" person? I guess every single one of us are "Bad" people then, if logic dictates.
Eat, drink and be merry because we are NOT in control. If you want God to laugh, tell him your plans.
Chemo, no chemo, it's all a crap shoot. My dear friend KK was a good person, yet she lost her life. That's all I have to say.
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Even you don't deserve such a shake-down.
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evebarry - I wish your comment could be pinned to the top of this thread. It really has to be the guiding philosophy by which we have these discussions. The only reason to NOT have that philosophy is if we suddenly find a cure that eradicates BC deaths from the planet.
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Britchick, I agree, it was vile, and in my grief for KK, I posted it, but thought better a few minutes later. I'm glad you read it though as it gives you an idea. I have copied and saved it for future reference though.
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bluedahlia, I have no idea what was sent to you, but I find it very sad when people treat each other hurtfully. We all are dealing with the same beast in the best way we can.
I do agree yesterday was a very sad day losing KK. May today bring more joy to us.
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Luan, you posted earlier that you didnt think the Oncotype Dx test is available in Canada - the test can be requested but it has to be sent to Genomic Health in the U.S. since, according to my MO, they have the patent and only they can do it. It costs $4000. Not much profit element there!! Fortunately, OHIP in Ontario covers it.
BTW - love your posts, very informative.
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I went through chemo almost 7 years ago. My immune system is fabulous. I am strong and healthy an training for my second marathon.
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Member_of_the_Club, I'm glad you're doing so well 7 years after. I can just hope I will be doing so well by them. I'm 8 months from my 1 and only chemo, and still have vertually no white blood cells, and my red cells are shall we say not normal. Who know's if i will ever be the same.
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Can someone clarify that the "vile" whatever was not from ME, as this followed one of my post, as if in reply. Thank you.
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LMK, thank you, glad I can help
Wow, $4,000 for the test, wish my onco had ordered it though, maybe they would not have overtreated me like I feel they did. Don't know....
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No Luan, it was not about you.
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Luan, I notice on your info you say you have mets. I thought a stage llla didn't have mets. I will say though I think our Onc's often over treat because they really have little or no idea who will progress and who won't. I think there is a lady here that had a 9 on the Oncotype test that has had a reacurrance, so no one really knows yet.
As far as the Oncotype test I do know my BS really wanted me to have Mammaprint test, but insurance doesn't cover it. His feeling is it's a much more accurate test because it tests live tissue, plus tests more genes than the Oncotype test does.
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Kira, I thought a second tumour in same breast was a met. I had two tumours in same breast.
"Some cancer cells also acquire the ability to penetrate and infiltrate surrounding normal tissues in the local area, forming a new tumor. The newly formed "daughter" tumor in the adjacent site within the tissue is called a local metastasis"
http://en.wikipedia.org/wiki/Metastasis
Thanks for the info on Mammaprint, I'm taking note just in case....
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I never heard that before. In my case I guess they would say the same thing. I had a very small second right near the original as well. It was 0.1cm, and only mentioned in the microscopic diagnosis part of the path report. I aso had some LCS don't know the size of it not mentioned. As you can see the area was a bit of a mess.
As far as the case summery the other small areas aren't emntioned. I asked my BS at the time about it, his answer was the final report only lists the largest tumor.
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No, a second tumor in the same breast is not considered metastasis and neither is another tumor in the opposite breast. Metastatic disease is when it's spreads beyond the breast tissue. It can either be locally metastatic, such as when it's found in the nodes, or distantly metastatic as when it has spread beyond the local area to other more distant tissue and organs.
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I'll add that 'locally metastatic". i.e. in the nodes, is not considered "Metastatic breast cancer" (often called Stage 4.) That is only when it spreads to another organ, like the bones, lungs, liver, brain, etc.
Multiple tumors in the breast are either multi-focal or multi-centric breast cancer. Stage is still determined by size of the largest tumor, nodal involvement and other factors.
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...and in BCO the protocol is to only indicate mets in one's signature if the metastasis is distant. Otherwise, almost everyone except for pure DCIS people has locoregional mets.
A second tumor in the same breast could be a spread or a second primary. Not always clear, even with pathology.
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MarieKelly, please refer to my Wikipedia link, right there in my post. I will go according to THEIR version.
If, according to you, the second tumour does not make my Bc metastatic, then my 2 cancerous nodes did. So there, I HAVE METASTATIC BREAST CANCER !!!
Just love the terminology arguments !
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Luan, this is definititely an area if I were in your shoes I'd love to be wrong about. The whole thing is heartbreaking, isn't it? I hate this disease so much, it eats so much of my time, body and psyche.
I would like to hear more. For starters,the node positive never translated to me as metastatic disease unless mets were discovered throughout the body with other scanning methods. I think, though am not sure, that any cancer is a met. There are local mets (is this the same as local recurrence?) and distant. The distant is considered incurable...am I right on this? I sincerely want to understand this better.
I was node-neg, so I am no expert in this arena.
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I asked my onc about metastasis as I had two tumors in my right breast, one IDC, one ILC, as well as DCIS.
3 years ago I had IDC in the left breast.
2 pos lymph nodes. I was told that all was in breast tissue, so not considered mets.
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