Survivors who have used only alternative treatments
Comments
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It seems to have turned into all about mindovermatter, if you really need to know.
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Suepen, I only know what I have based on the biopsy I have had and that is DCIS, multifocal, grade 2, which automatically makes me a stage zero, they were not able to rule out microinvasion though. However I do know from reading the DCIS board and others here, it aint over until the final pathology is in. My surgery is on 5/13, so will hopefully nothing will change when it comes in. I have also had breast MRI and they did not see anything further, but again, you never know. I'm trying to think positively. I also happen to know as long as my DCIS stays that way, my chances are VERY good. However being a normal human being, I have moments of weakness and fear and for some reason that 5 year number threw me into the ringer. I'm good. People here gave me nice support, my family was great, my husband was great, then went out and mowed the lawn for 40 minutes...nothing like some physical activity to burn off a mood
As for being concerned, I don't think there is anyone on this site who is not concerned about their health. Am I doing the right thing? I read the material on many different sites, I talked with many people, I have talked with three doctors and if I was not comfortable, I would go for more. I am comfortable with my decision. Obviously I wish I didn't have to make this decision at all but that is not an option and it was not one I took lightly.
I am thankful the women who still post here after 7 years or longer. They have great information for us newbies and I can learn much from them. I came on this forum to see what alternatives there were for once I had my surgery. Obviously this is not what I expected.
As for cost, my out of pocket limit is $2,500.00.
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Just wanted to say that I am fairly new to this. I don't need any advice (at the moment) on my treatment, but I love the posts from the old timers like Member of the Club. It definitely uplifts me when I see some who was diagnosed in 2004 doing well. And it does help get through treatment as well. Other than that, no comment.
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Thanks gals. I have enough material now. It's been a pleasure.
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to . . . write your short story? Quote everyone on another website, like Nanay? Sue?
by the way, this is all good reason to not use identifying information on these, or any boards. You never know what people will do with your words.
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You give yourself too much credit.
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I think MOM is creepy and I hope he doesn't come back. Yes, I think he is some weird guy.
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mindovermatter=stellar919=sleuth1
From her statements she has had previous usernames as well.
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ladies, ladies, let us ignore MOM from now on...we can help the newbies upset by such nonsense without engaging her toxic behavior. She just loves the attention.
Borderline Personality Disorder is quite prevalent on these boards, I'm sad to say.
MOTC, bluedahlia, suepen, digger: you gals rock.
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Yea, this whole thing is really starting to creep me out. It's not even a parallel universe....it's a black hole......
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Hi Mindovermatter,
You said, "Thanks gals. I have enough material now. It's been a pleasure."
I wonder if you'd mind clarifying that statement? It sounds so very reminiscent of Mollyann's (et al!) threats to us here that she was "archiving our posts" and informing some reporter about our discussions, so it's hard not to wonder if perhaps you aren't quite being honest with us. I'd love to give you the benefit of the doubt, so hopefully you'll clarify your identity(ies), and your intentions.
If not, and if you really are here simply to provoke controversy for your "material," then hopefully you're more familiar with internet DMCA, copyright, plagiarism,search engine blacklisting, etc. than you appear to be.
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I just reported MOM's narrative of lies and fearmongering to the Moderators, who, I think, do a very poor job of policing these boards. Let the debates fly --with reasonable, civil behavior and right intentions-- but shut down the trolls who spread poison.
I like the "ignore" button, but the Moderators should step up and start banning folks.
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He/She/It will be back with a new nic. Will post on frivolous threads to boost post count and then get down to business. Just be on the look-out.
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Hi Elmcity69, I only partially agree that we are engaging in toxic behavior here. I think certain things need to be "outed," and that ignoring it doesn't really do a service to newbies. I've been around here for several years now, and it's become painfully obvious to me that we have more than a handful of very disturbed people who have nothing better to do with their lives than come here pretending to be "one of us" in order to further their own personal agenda. Sometimes it's outright, but more often it's in the subtleties that may go unnoticed by infrequent visitors or newbies. Fact is, we have people here with multiple identities and/or who come here mainly to drum up business for whatever other endeavours they may have going on.
Some people simply lack the integrity, ethics, and common decency to respect this place and it's people. I'm increasingly sickened and disgusted by the underground sockpuppetry games I see going on here. Ack.
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thenewme: I do think that sounds like a threat.
elmcity69: Thank you for reporting this person. Maybe I am wrong about it being a guy, but what 60 year old woman would have an avatar like that. . . and some of the statements this person made sounds like they are talking down to women, like "lighten up, women". I don't know, I just got this strange feeling it is a guy.
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lynn, i'm wondering that now too.
thenewme: i agree with your points. i think that "ignore this member" button should be used sparingly, since the more reasonable members could wind up missing fearmongering/lies etc., to the expense of newbies. i really, really wish the moderators were more active. whenever i've reported posts, i receive a standard "you can use the ignore button" blah blah speak.
i completely agree there is a group of folks who troll these boards. i like to think there's a special place in Hell/ etc. for these folks. I think Dante would say the 9th circle......
but as i remind my husband when he sees me irritated over bad behavior: there are countless strong, smart, caring women here too!
and oops - i meant to say "enabling", not "engaging", in my first post...damn chemo brain!
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Lynn, I got the same feeling that it was a guy!
Mollyann, I don't understand the Prozac comment. Isn't Prozac an anti-depressant? Are you suggesting that I'm....too happy? You might be right about that!
And again, as an actual journalist (tho I'm here only as a BC patient!), I will again call MOM's (as previously Mollyann's) bluff that s/he is collecting information to somehow use against us. I agree with you all that those who want to keep their identities private should take pains not to reveal too much personal info. I for one am rather figure-out-able, if one put their mind to it, and will only be more so in the future.
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Yes, be sure to contact www.paranoids.com
You never know who has all your information
and will write about you.See you next month.
Love, Molly
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You forgot to add "Mwah-hah-hah-hah-hah"
Just don't forget about those pesky "invasion of privacy" statutes, my dear
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Am I the only one who is worried that WOM was diagnosed way back in December and hasn't started some sort of treatment yet(conventional or alternative)? It's been over 4 months.
Mary
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Yeah and whatever happened to the "Cancer is a Fungus" thread.
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I have been reading this thread but haven't posted before. I don't want to argue with anyone because my opinion won't change someone else's opinion and we are all entitled to our own opinions....but I know that I want to read Hollie's book and I am on the same wave-link as WOM and MOM.
This site has helped me in many ways but I realize that I just beat to a different drum than the majority of women on here. It would be so nice if there was a site that women could discuss alternative treatments without feeling that they were going to be "beat up".
Breast Cancer seems to be treated similar to a religion where people think that "my way is the only way" and the other person that sees things differently is the enemy. It's the same with issues like global warming, oil drilling, politics, and any other hot topic. We just have to agree to disagree and hopefully allow people of like minds to discuss their ideas without judgement because no one has a crystal ball and knows the outcome of any treatment!
I hope what ever each one if us decides is the right choice for them.
Peace.
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I was surprised that the thread "calling out Nanay," was so quickly removed by the moderators? Only if all the verbal thrashing on this thread, would have been so quickly resolved. I would love to see every mean word deleted defaming someone on this thread or any threads at bco deleted. I thought the thread calling out nanay was good, because it showed resolve. I do think for the record, what I shared on that thread should be posted.
Nanay/ruth contacted me letting her know that she removed all user names, everything in regard to apple. She again apologized for hurting apple. She also wrote this...written by nanay...
"I have a lot of imperfections, one of them is my tone and choice of words, Sheila and Evebarry have been teaching me a lot about social rules. They will not allow me to commit the same mistakes again, and for that I am eternally grateful for their patience."
She also said that apple is blessed to have loving and supportive people around her.
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bluedahlia, the fungus theory moved to a different website where we can discuss it without harassment...someone named us here... as the "super secret alternative forum" ... cool name, huh.
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Am I the only one who is worried that WOM was diagnosed way back in December and hasn't started some sort of treatment yet(conventional or alternative)? It's been over 4 months.
Ha Ha .... no, you are not the only one. There are several of us who are trying in our own way to encourage WOM to consider treatment for her disease. Unfortunately, I have gotten some nasty remarks from people who really should know better.
False prophet syndrome ... somehow some people believe if people are telling them what they want to hear it must be true. I think some of the things I have read here are pretty appalling too. What a trip .... let's get on a discussion board and convince a young woman who has a really serious cancer to reject treatment. How dare people advocate against someone's best chance for a cure!
What would have been so bad about doing chemo WOM..... you would be half way done by now or at least well on your way.
I know. I was diagnosed, had surgery and completed chemotherapy in 4 months and 5 days, and I had 8 chemo treatments (but I had a mastectomy same day as diagnosis). Thank goodness I didn't do any research on the internet. I saw 3 oncologists and spoke to a 4th on the phone and decided on treatment that way. Hey, there is a reason WOM's oncologist is recommending treatment....because it is the best chance WOM has. My goodness, all this crap that it is only about money for the doctors. As a person who rarely went to doctors (e.g., only had 1 gyno exam before 40!), but who has seen them a lot in my 40s (surprise pregnancy and less than surprising cancer diagnosis), I have a genuine appreciation for what they do. WOM, don't you think your oncologist has witnessed the really ugly side of cancer? She is recommending chemotherapy because she doesn't want you to go down that route!
I can't speak for the others, but I don't have an opinion about what treatment you should have. I am not trying to sway to to do anything and if you read my post history, you'll see I'm not much of hugger. I was concerned for WOM because I was afraid she did not fully comprehend her situation (>50% chance of stage iv recurrence if no further treatment). She seemed to be under the impression that if she has a recurrence, she would likely be able to treat it effectively/cure later on. Unfortunately, this is usually not the case for Her2+ BC
I was concerned about this too. MY sense is that WOM isn't fully accepting a new identity as cancer patient. I don't blame her. It's crappy. Reading a lot of articles, spending a lot of time considering treatments, no treatments, and so on just seems like a way of avoiding the reality of her diagnosis. Maybe I am wrong. A while back, she said she had the oncotype test. What were the results? Her cancer has already spread. My cancer was confined to the breast, no nodes, and I didn't take the oncotype test because I was diagnosed with triple negative bc. I would be curious if the results of the oncotype test would have any influence on WOm's decision. Basically, it seems like nothing is being done, besides surgery of course.
Britchick: great idea. My biggest concern with WOM concerns the HER2 status. I understand the oncs won't do Herceptin alone, and at some point, one needs to concede the issue. Spending one's time researching countless articles/trials etc doesn't change the facts of one's cancer. At some point, one must act, either way, and own it.
Not only that, all the researching may be a way to avoid the facts of one's cancer. WOM has been diagnosed with an agressive type of bc, the odds are against her if she does nothing. If she is willing to own this, then she should move forward with that. But, the owning it part doesn't come through. Again, I don't blame her ... who wants to be a cancer patient? But, conventional treatment is likely her best chance for a cure. To tell her anything else is just lying.
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Interesting article about this very topic - patients going to a cancer expert and rejecting the advice because it didn't suit them - in the New York Times science section today.
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poptart: You made some excellent points. I think WOM said something about being 12 weeks past surgery? And told her onc that she would, for now, not do the chemo. It sounds like she has done tons of research. But you don't really get much time to decide on things when you have an aggressive cancer like HER2+ or Triple Negative. You get one chance to beat it, it seems to me, before it comes back. That one chance is chemo.
Beeb75: I am glad you thought the same thing (about MOM). I am wondering why a person would come here and pretend to be someone they aren't? Why would they be gathering information? This person was asking about how much money we spent on our treatments--maybe that's what they were after. (Now I am wondering who you are, you can PM me if you want to tell me!)
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Some crazy stuff goes on on these boards. I don't understand it either.
I'm no one famous...just someone google-able who's dropped enough information around the internet that someone really clever, tenacious and/or bored could probably figure me out.
As a journalist, I'm used to writing things under a byline, so it's not that scary for me to feel that someone might read something that I've written. (Not as scary, I imagine, as it may be for those of you with more private lives and occupations.) Also, I am of the generation with no expectation of privacy, which is why MOM and Mollyann's threats don't bother me at all. What are they going to tell the world? That I have breast cancer and got treatment for it and participate in online discussion forums on related topics? That would surprise exactly no one! And interest few.
Also, I've got Mollyann beaten to the punch, as I am chronicling my own breast cancer experience for a magazine (which is why I say I will be even more figureoutable in the future.)
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WOM - Your time might be better spent researching the success of chemo/herceptin for your stage of cancer, instead of wasting time trying to find the miracle alternative cure - if there was one we would know about it by now. I'm sure your onc would have taken your "health" issues into consideration before recommending chemo.
It definitely appears to me that, by now, if there were any (Stage III HER2+ve node positive like yourself) women out there who have survived for 10+ years using alternative only treatment, they would have responded - may they rest in peace. I urge you to go and look at the HER2 forum - there's a post there looking for 10 years plus survivors - that thread has lots of reponses.
As for MOM and MollyAnn - you are very entertaining
No wonder MOC keeps coming back...Sue
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i just laughed out loud at bluedahlia's swipe at the fungus thread...but i digress.
molly, reported your post too. the fact you insinuate threats about distributing information about our community in a retributive sense reveal a disturbed and twisted nature.
and i should know from disturbed - i've been an LCSW (licensed clinical social worker) for 15 years.
rock on, beeb75..i look forward to reading your piece.
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