Cancer is just a symptom of disease

NineTwelve

What I'm thinking is - it would be interesting to have a discussion about alternative treatments - somewhere - where no one is taking it personally that I get acupuncture and have a shamanic healing, but that I can't get behind juicing twenty pounds of vegetables a day. It would be nice to debate the benefits of individual alternative treatments or practitioners without upsetting people.

I guess I would mostly like it if we could all get along. I want that more than I want to debate.

That said, we do debate individual conventional treatments in the other threads. I had help with deciding against an oophorectomy. Most of the members who posted were in favor of the surgery. Some were not. (The stats made it an even-odds bet, so I went with the Lupron shots instead.)

Momine

Kayb, thanks!

NineTwelve, exactly! I have been involved in plenty of lively discussions about the pros and the cons of an ooph, neo-adjuvant vs immediate surgery etc. It will also sometimes involve discussion of the credentials, views and track records of various docs. I would never expect or demand that someone accept everything a standard medical doctor says, and never question it or check it.

MusicLover

Leia, Thanks for answering, I did think to look at your other posts to see what you had done.  I do the same when I see something interesting, post it for an active discussion, just like chemo and rads what works for some doesn't always work for others but I think it is good to share the information. Best wishes to you.

Momine

As for a special forum, I think the idea was, last time we had this argument, that in the complementary forum some discussion would be permitted, but not in the alt forum. I had actually forgotten about that when I posted to this thread, but at the same time, I did not think of my initial post as being argumentative.

I just thought I would report what I had found when I checked out the guy. Why check him out? Initially because he sounded as if he didn't quite know the subject, but even if he had and even if he were a board certified medical doctor, I always do some sort of check just to have an idea of the person's background. Surely that is not odd or negative.

I imagined that Leia had come across it, got excited about it and posted before checking. Which is cool, it happens. I also imagined, apparently erroneously, that she would be interested in some additional info on the guy.

new_direction

Leia congratulations on your 9+11 years of NED we discussed the FOCC at some point. I have been doing it the last few weeks just in the morning.

I completely agree about cancer being a symptom. Im sometimes concerned that causes are multifactorial and many factors being hard/impossible to change (surrounding environmental stuff?).

lightandwind

And how much "additional info" about chemotherapy is welcome from alternative users on the conventional forum?Is it welcome there? I'm ashamed for getting sucked into this armpit again. Its the same old stale, boring argument and I am well aware that nothing here will ever change, so carry on. It is 2015 and fresh and valuable information is being shared. It's just not here. I prefer to be inspired. So will move on...again.

Momine

Light, info is frequently shared on conventional forums about new/different approaches to chemo. The approaches of various docs are also frequently discussed and criticized, commonly as in " get a 2nd opinion ASAP" or "that is unacceptable, find a better team." I have also read several threads devoted to comparisons of follow-up care, as another example. My own onc is very interested in new, alternative and other approaches to treatment

lightandwind

I was talking about providing additional info, links, studies, etc. regarding the damaging effects and dangers of chemotherapy on every conventional forum. Is that okay? Because that would be the right and fair thing to do, just spend my time here on conventional threads where I'm not wanted, drilling holes in the conventional approaches, and people that use them, in hopes to save some lives.

Momine

Light, these are issues quite frequently discussed. It is something of concern for anyone contemplating chemo treatment. I, as one example, got some very nasty chemos that can cause a particularly deadly leukemia and congestive heart failure. This was certainly part of my considerations. Thing is, if your chance of the cancer killing you is far greater than the chance of chemocausing leukemia,thenit ay stillbe agood bet.There is a LOT of discussion about the pros and cons in less clear-cut cases, including theuse of things like the oncotype DX

NineTwelve

I am sorry for my intrusion. I believe I am the one who busted in and went off-topic.

Yes, it does say that the Alternative Medicine forum is for those who chose these treatments INSTEAD of traditional medicine, not in addition to.

It's printed at the top of the page, but I missed it entirely. Apologies to anyone I offended or annoyed.

light - I am very concerned about the damaging effects and dangers of chemotherapy, and would read with interest and an open mind anything you'd care to post on the topic.

MmeJ

lightandwind, of course you can provide those studies, links, etc. on the conventional boards. As Momine writes, those discussions happen all the time.

Also, I note that you don't share your own diagnosis, the treatments you've had, and how you're doing. I realize that not everyone does and no one's required to or should feel even an ounce of pressure to do so, but it might lend more weight to the discussions if others knew where you're coming from with regard to BC.

wrenn

I don't understand how knowing someone's history/diagnosis would lend weight to their discussions. Can you explain that to me? thanks.

Momine

Light, one other thought, don't be ashamed. I think this is a really good and useful thing to discuss. We all know that chemo sucks, in all kinds of ways, short and long term. Which is why some us read the alt forum, hoping for some more promising alternatives. My doc is amazed that I am still here and NED for the timebeing. It is not likely to last. The thought of going back to chemo is not appealing and i most certainly hope, probaly in vain, tha something different will come along before Inhave to face that decision. Sorry fot typos, on iPad

bobogirl

Wanted to put in a word here for dissent and 'criticism.' I have done both conventional and nonconventional treatments. I just wanted to say that, posting most often in the conventional part of bco, dissent and criticism happens there all the time -- for the good. As one of our sisters here says, 'drop that onc' or 'get a new team' are frequent replies to sisters who face an untenable situation. And, of course, there is more subtle advice than that when it is needed.

This is such a difficult disease, with so many treatment plans and diagnoses. I have had to endure some pretty experimental stuff. I know that if I post on a thread, talking about my interest in a treatment or a particular dr., I want someone like Momine in my corner weighing in. I want her having a look at my team, if she is so inclined, and giving me her analysis of what's going on. In fact, I don't want 'someone like Momine.' I want the actual Momine!

It's been a crazy-making ride, and I haven't always been clear-thinking. I would be very grateful for the 'dissent' offered by one of my sisters as I evaluated a certain type of treatment.

I am also very grateful for the 'cheerleading.' Like many others, I am a big cheerleader. I don't have to agree with someone 100% in order to be behind her all the way. Once a decision is made -- a woman has decided on a certain course of chemo, or a woman has decided to have a certain type of recon -- 'cheerleading' is an essential part of the process.

Momine

Wrenn, in my view, someone's DX and treatment most certainly influence how I perceive their views and opinions. Someone who never had to face the decision of whether to do chemo, for example, is not very convincing to me when she argues against it. Someone reporting her great "success" with alt treament after a DCIS DX also will not carry great weight with me.People ranting about "relative" percentages, ditto. I completely understand the rant from someone with a 3 % risk of recurrence being steamed about being told that tamox offers a 50% riskreduction, if the risk of adverse effectsof tamox is also 3%. Thatobviously means the patient is better off without tamox. But can't we all do that math

Momine

Bobo, back atcha

leggo

"Someone who never had to face the decision of whether to do chemo, for example, is not very convincing to me when she argues against it."

Now that's funny! 'Bout spit my tea across my screen. "argues for it" is more like it.

MmeJ

wrenn, Momine's answer to your question to me = mine. :-)

lightandwind

Momine, it really is pointless and frustrating to have this conversation, so yes, I'm not thinking it's productive to have it again and that is why I feel ashamed for wasting my energy on this. For anyone to try alternatives,it is clear to me that they would do their own research on alternatives, share it with others, take some risks, be open to possibilities, and the people who are already using them. and I don't see that. Nope, not at all. So I guess I just don't buy that. Closed mindedness, a constant doubting Thomas, and a condescending manner towards alternatives and people who use them is all I see..standing around as if waiting to shoot down any bird flying...You can't debunk determination, a will to live, and a willingness to step outside the box to do whatever it takes.. to live.. with quality as much or more as quantity. Its not yours to debunk. It's a person.. it wouldn't be welcome or acceptable to those choosing conventional, and that is why it is stepping over boundaries here. As I said, I expect the same to recur here forever. Coming around here is like being in the dark. Can't even relate.

Momine

Light, I am sorry you feel that way. I wanted to add that I am grateful for the rants about relative percentages, for example, because it made me research and learn and realize that using relative percentages is the only thing that makes sense. But it also made me realize that most docs do a poor job of explaining treatments, risks, advantages etc. to patients.

Leia

lightandwind,

As my signature says, I got breast cancer in 2006. 9 years ago. And I came here. At that time, there was no "Alternative" board. But I posted on the regular boards and found Marie S. This woman who had an early stage breast cancer, like me, and refused radiation. And she was fine.

She became my beacon, my hope. Again, this was on the main "radiation" thread. Even in my newbie state, that radiation made no sense to me. But Marie S gave me the courage to refuse this pointless radiation. For a 2cm cancer. That didn't make any sense.

Of course, since radiation itself causes cancer, it never makes any sense. To get radiation as a "treatment." And even less, to get chemotherapy, which totally destroys your immune system. Which is what you need to fight off any disease. Why would anyone get chemotherapy.

I agree. I don't know why these main stream people are allowed to come here to this "Alternative" thread and post their main stream comments but we're not allowed to go to the main stream threads and post our alternative comments.

But then, I never would. Post any of my alternative comments on a Radiation or Chemo thread. That is not my place. Those women have chosen what is right for them.

You said it; "Why do those same boundaries not exist for alternative members?"

I do not know ....

wrenn

The majority of the members on the forum are respectful. There are only a couple and they seem to be obtuse (not sure if it is intentional) about how they affect people. I am sure it happens in their real lives as well when they are determined to show the way with their 'all knowing' attitude. I guess it makes them feel clever.

It either has to be tolerated or move on. Since most of the members are sweet, caring and supportive i am going to avoid the non supportive ones.....just as I avoid my 'know it all' neighbour :-)

Momine

Leia, considering that you and Marie found each other on one of the regular boards here, obviously it is "allowed" to discuss these things in the conventional forums. On the other hand, if you post something like the above:

"Of course, since radiation itself causes cancer, it never makes any sense. To get radiation as a "treatment." And even less, to get chemotherapy, which totally destroys your immune system. Which is what you need to fight off any disease. Why would anyone get chemotherapy."

you should expect that people will point out to you that you are mistaken about that and give you the reasons why one can't make that kind of blanket statement. But since this is the alt forum, we can skip it.

lightandwind

Ignore/Block --those members which you don't wish to hear their same boring close minded, viewpoint and condescending fake kind input.

It is not about math nor old outdated stats, derived from giant corrupt entities, (they, to me, are murderers) It's about assimilation and integration of all information, not just information we read, though I think many of us read a lot. But information from our own hearts, our own intuition, and based on observation of those before us.

Some of you seem to want alternative members to close their minds soooooo much to make YOU feel more comfortable. It's just not possible, to see only a small set of information and call that the truth. I cannot. Because that truth you want to shove down my throat, has already been proven to be a lie to me. There are many other things that seem more true, like people who are still breathing.

Believe it or not, keeping an open mind set and taking risks, works for many people...keeps stage IV people alive -often without harmful debilitating side effects or risk of dying from the treatment. I must say though that sometimes we do suffer side effects from certain treatments. Fighting cancer takes a lot of time and energy, and is no fun, no matter how you do it, but an alternative method may allow one to have more quality in life, regardless of the time they have left. That is my reason for choosing it.

Chemo is not and will not likely ever be in my arsenal of cancer fighting. That does not make me any less fragile. That does not mean I don't doubt where this is going, or that cancer can't come back. But I've factor it all in, and I make the choices that are best for me. No regrets.

I am out 3 years and NED but I don't suspect that will last. I deal with the same sometimes overwhelming fear day in and day out that women who use conventional have. When I join online support, I want real interactions, from real geniune people, who really understand me and my way of thinking to talk to. Not constant intrusions from people who do not understand...at all....but that will never happen here.

I have visited often and many conventional threads on BCO...where it's okay to be fragile, people still listen, and understand without judgement...members go to the ER because they are fragile, without judgement or being made a spectacle of by other members.

On the conventional threads, you never see piling up on women overwhelming them with unsolicited advice and judgement about them and about their choices. On the alternative thread, its okay to pile on members, then when they have to go to the ER because they are fragile, its okay to make fun of them on their return to the boards, for a allowing input from a few fake kind women to get under her skin. Really sick ladies. There's only a couple or 3 now that continually do it.

Ignore/Block----- have your conversation without them.

juneping

i think for alternative tx...it's more like a word of mouth kind of scenario.

you knew someone got cancer and they're still kicking. you are happy for them and life goes on. until one day you need that help you ask around...and you hear different kind of stories. that experience formed our believe in cancer tx. be it conventional or alternative.

i think for the ladies who are inclined or did the alt tx are made of the same type of feather. that we don't believe in killing our cells/immune system in order to live. we decided to co-exist with our cancer cells and do all the right things that we know of without the support of our government and the conventional tx advocates to use our own immune system to kill off the cancer cells instead of an army....we lean on each other's input/knowledge without the scientific proof but only the experience to survive.

we stand alone here because what we are doing is without any backup of our government or those legit oncologists. and because of that whatever we are trying to share that experience, before the beginning of the conversation, we are being questioned how legit our topics are. may be those ppl with the best intention at heart, because they believe they're the messiah that we are just some stupid sheeps who follow bad advice blindly and don't have the ability to do some kind of critical thinking.

labelle

Momine, you said some interesting things about genetics but I don't believe they hold all the answers, but they definitely play a role.

I've read lots of studies linking BC with vitamin D and believe it is only a matter of time before the wider medical community starts recognizing that normal vitamin D levels do help prevent breast cancer and I think the evidence is becoming overwhelming. It's certainly possible some people don't metabolize vitamin d properly. Many people including myself don't metabolize B12 from food, a condition called pernicious anemia, an autoimmune disease. Perhaps they just haven't yet named the condition that causes poor vitamin d metabolization-it may even be another autoimmune disease. Autoimmune diseases are strange, they have a genetic component, sort of, as in autoimmune diseases as a whole tend to run in families, but not necessarily the same one. One family member might develop lupus, another Hashimotos, but if you have one you are at higher risks for others-sort of like if your body starts getting out of whack all sorts of other stuff begins cropping up-including BC as there is also a fair amount of evidence that people with autoimmune disorders may be at higher risk for BC. Certainly true in my case, my mother's case and my SIL (who has lupus and now TN BC) . Makes you think anyway. Well it does me!

When I was pregnant with my older daughter in 1988 my midwife (I had a home birth and never saw a doctor during that pregnancy) had me taking various supplements, including folic acid to prevent birth defects. 5-6 years later mainstream medicine finally decided there was enough evidence that folic acid prevented spinal bifida to start widely recommending its use in pregnant women. Sometimes it takes a while for mainstream medicine to catch up with the best practices of alternative/natural practitioners.

annika12

I stopped by because I saw the topic !!!! I went to a doctor/chiropractor friend of mine who knows Dr Major/ maximized living and like with everything I listened and learned a lot.....used some common sense and picked out what I think could be useful !! I have always been "alternative" to me it was just how we lived life, my husband is a chiropractor!! Its all about being comfortable with out decissions no matter what happens in the future. I like to read all threads and know what other ladies out there do and we hat they learned. For me as you can see I went a different route but I appreciate your post thank you for posting

leggo

Wow Labelle. Freaky. I also have pernicious anemia (get butt shots to keep my level up) and an auto-immune disease. That, however, developed after bc. Just heard on the news last week too, that the RDA for Vitamin D is seriously low. I have and always been a sunshine bunny, so until bc, I  never even gave it a second thought. What I did not know, until last week , is that as soon as you see your shadow, your body stops producing Vitamin D. Learned something new. 

labelle

Leggo, I used to give myself monthly B12 shots for years. It took me awhile to convince my dr I could do it, but if my 6 yr old nephew could give himself daily insulin shots, I figured I could handle it. Hated going to the dr every month for shots. Anyway, about 3 yrs ago I read about time released (not reg B12 vitamins, won't work for us) B12 tablets helping those w pernicious anemia and my dr let me try them, testing first every 3 months, than every 6 months and now once a year. So far, the time release tablets work to keep my B12 levels normal and no more shots! Just thought I'd pass that on as the shots in the butt get old fast!

I have Hashimotos also (both pernicious anemia and Hashimotos are autoimmune diseases). I was diagnosed with Hashimotos about 4 years ago, but lord knows how long my thyroid levels were low before I was tested. Years I suspect, as thyroid testing isn't routine, and it was only ordered after I'd complained for a long, long time about being tired that I was tested. I found out about 1.5 years ago that my vitamin d level was dangerously low (once again who knows for how long as it had never been tested before) and then I was diagnosed w BC last Sept, but they say that the BC had been growing for probably 7-8 years. Not sure how we can tell which came first, although the pernicious anemia definitely predated all. It often takes along time before we are diagnosed with autoimmune disease because the symptoms are often vague/hard to put a finger on . It took my SIL several years and several doctors before she was finally correctly diagnosed with lupus. Her lupus definitely predated her BC though, she's been dealing with the lupus for 20+ years.

leggo

Thanks for that info on the B12. I've been getting those shots as long as I can remember. It would be nice not to. Also, the thyroid thing.....must play a role. Just after the bc diagnosis came the thyroid cancer diagnosis. I suspect that had been there for ages and only got big enough to give me trouble several years later. Fascinating stuff.