Survivors who have used only alternative treatments
Comments
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MOC,
I will probably not be able to understand your posts at this time -- its 12midnight my time
but one thing I do understand is that you mean well.
that is all that matters.
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beeb75,
and natural herbs and supplements has been around since the beginning of time..anyway am just being philosopical now..
and I guess you would not understand because you have not seen what I have seen..
hope you can read through my posts from 8 hours ago.. and not these non-sense posts Ive been posting on page 32
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apple I don't worry about you. I know you can fend for yourself.
But I agree that we all should respect each other regardless of stage. I have read a few higher stagers resenting the lower stages. What they don't realize is those stage 1 & 0 folks are just as scared at the beginning, always scared of recurrence and becoming an upper stage.
A friend of mine from high school just had a mammo/us on her "good" breast for a suspicious 1cm area yesterday. Biopsy Friday. Chemo was not recommended for her the last time due to the onco testing.
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lago,
i definitely agree with you that we should respect each other regardless of stage and age and even choice of treatment plan.
avoid using "appalled", "stupid" -- to describe our decision against anything you thought should be done, but we did not do anyway. that is what respect is about.
even questioning why I am in this board, when I do not have cancer anyway? my mother has BRCA gene 2 mutation-- I have a 50% chance that I have the same gene mutation (i have an appt for genetic testing on 4th May).
will also ask our onco to order the oncotype testing-- for the probability that they would agree that my mother just take Herceptin without the chemo/rads.
i do agree --- that everyone means well.
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LtotheK, For what it's worth, I know someone who has 3 adopted children. She was diagnosed at 2b (with lymph node involvement) a few days after she adopted her first child. She then adopted her 2nd child at the time of her 2 year cancerversary, and has since adopted a 3rd child. Of course, she was treated to the hilt at MLK and is doing well now years later.
I haven't even read all the posts here. I can't believe there is someone on a breast cancer site who does not even have breast cancer, suggesting to a woman who has been diagnosed with an aggressive, but treatable, form of breast cancer that she should forego treatment. I hope that "somebody's" mother is allowed to make her own medical decisions based on sound medical advice and isn't being bullied into making what might be fatal mistakes.
My mother died of breast cancer many years ago (in the 80s); my father also died of cancer. Cancer kills people. Even back in the day, my mother took a very minimalist approach to her cancer treatment. Having lumpectomies (4 or 5) for what was either atypical hyperplasia or in situ over at least a 10 year period. Whatever it was she was told she was going to get breast cancer years before she did, but she still barely did anything. When she finally got idc, she got one mastectomy, then eventually another .... I don't know what treatment was recommended at the time (70s). She finally did have chemotherapy when she was near death and had an exceptional response (and this was before taxanes, hormonals, herceptin and probably a lot of other treatments) and lived for years, working full-time, travelling, etc. I don't know what would have happened if she had actually treated her disease early, either through prophylactic mastectomies before she developed idc, or by having chemo and/or radiation when she first was diagnosed. However, I know I DO NOT think, "Wasn't it great that my mother did nothing?" When I think of how my parents approached their diseases, all I experience is frustration. And, the kicker is that both responded exceptionally well when they actually agreed to be treated with what was available to them.
WOM may be young in terms of cancer, but she is a mature adult with responsibilities. To reject what may be life-saving treatment is mind-boggling to me. What is she going to tell her kids if things take an unfavorable turn for her? Is she going to tell them that she didn't even want to try? It is true that an individual's response to treatment is unpredictable but cancer kills people.
"I have an appointment with a ND to check into the alternatives as I am only 36 with little kids and feel the harm this will do to my body will be worse than the cancer."
I hate when I read statements like this. Cancer kills people.
Here is another study that will be dismissed:
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I think every stage deserves the same respect. If one thing deserves less respect it is the staging system itself. Aside from stage O and stage IV, the other stages have very little prognostic value and characteristics such as triple negativity and her2 status may matter more, as does the the tumor grade. What I loathe is the endless differentiation in BCO about which stage can say what to whom. Stage says nothing about the human being behind the disease and her ability to cope. There are serene stage III-ers and DCIS people who react really badly and never recover. Treatment does not follow strict stage protocol either (with the exception of stage 0 and stage IV). Stage is increasingly an artificial barrier to erect.
And now I'm waiting for the conventional wisdom purveyors to defend staging at all costs here...and say "but how can you say..."
Everyone deserves respect and speaks with her own wisdom. Apple, as a stage IV sister deserves respect as does a stage IV sister who may have chosen completely diffferent treatment. Stage IV sisters disagree. Oncs disagree. There is no single fountain of knowledge.
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poptart,
that "somebody's mother" who does not even have cancer is me , I suppose. So, I probably have to defend myself.
the author's question is about survivors using alternative theraphy- i responded to her post. because my mother, though I cannot claim is a survivor is on 100% alternative approach after mastectomy.
my mother has BRCA gene 2 mutation-- and her onc-- told me I have 50% chance of getting that gene mutation too..
is there a criteria-- in posting to this thread? this is a public forum. if there is anyone who is not supposed to be in this thread are those who are completely ignoring alternative treatments (not even complimentary)
there are a few women here who at least consider complimentary-- so I think they should continue posting, arguing with others and themselves too..
if you want you can join them too..
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Brava, poptart. Great post.
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What is she going to tell her kids if things take an unfavorable turn for her? Is she going to tell them that she didn't even want to try?
Wow, poptart, that is an unfair and cruel thing to say. Maybe you do need to read this thread more carefully. Say what you want about WOMs decisions, but she is working very, very hard at this and she is taking her family into account. This was the first really disrespectful post I see here.
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poptart hated us-- being disrespectful to us.. and beeb says great post. its so funny to the point of being hilarious..
and then you will tell me I am being disrespectful because I am laughing at this situation??
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No. I am not being cruel to WOM. All decisions are not equal. I am writing as the daughter of a woman who died of breast cancer who did the bare minimum as far as treatment goes. I think my mother has missed most of my life and all the really important things I have accomplished, and I think she didn't even try.
I have read a lot of the posts and my sense from WOM's posts is that she doesn't grasp the seriousness of her diagnosis. For example, talking about being open to chemotherapy in the future. This does not make sense. Typically, if chemotherapy is given with curative intent it is done in early stage bc, right after or right before surgery. Time is of the essence here. It is horrible to be diagnosed with bc. It would be nice if time could stop, but the reality is that it doesn't.
My only motivation for anything I wrote is concern. It is actually quite terrifying to me to read WOM's post. I worry for her and her family, and I hope that in rejecting treatment she isn't doing something she will regret.
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poptart,
i suggest you read on WOM's previous posts-- I am pretty sure she would not be happy reading your last post. please also read on page 30 (Shin's cancer blog)
anyway, thanks for your concern for WOM (on her behalf). and please do not attempt to kick me out of this thread- you do not have the ability to do so anyway.. you can post all the nasty things about me-- but I am not leaving this thread.. as long as I know WOM is posting here too..
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I understand where poptart is coming from. She is speaking as a voice of a daughter that lost her mom. I'm sure WOM understands that too.
At the same time I do respect WOM decisions. She IS doing something. It's not what I would do, or shall I say what I'm doing but I learned a long time ago what's right for me is not going to be right for everyone else.
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Hi Nanay, I think you missed my point earlier, but when I accused you of being insensitive, I was referring to your link to the Stage IV person's post about her intensely personal experiences in the last leg of her BC journey. You linked to it, completely off-topic/irrelevant for this thread, and with absolutely no sensitivity or respect.
What was your purpose, exactly, in posting it?
Did it help provide fodder for your blogs? Archives? Reports?
It's really too bad that this thread has been so badly derailed from WOM's post. Nanay, maybe you should start a new thread if you care to discuss your mother's care and treatment, so that WOM can get the support here she was looking for.
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thenewme,
You always seem to post on this particular forum to bully people or proselytize for conventional medicine.
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Actually Nanay I think it's a great idea that you start your own thread regarding your mother's treatment. This thread will always spin back to WOM and her initial question, as it should. You might get better response to your posts on a thread that is dedicated to your questions about your mom.
Matty those who live in glass houses
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Nanay - unfortunately I think it's too late for you to consider herceptin for your mother - a year is a long time past surgery. I wouldn't call her a survivor only 1 year out of surgery.
Poptart - I am horrified as well. I'm 58 - my children are grown - but there is no way in hell I would have refused chemo/herceptin even at Stage 1. It doesn't take much research to find out how agressive HER2 cancer is or to see how effective herceptin has been so far. Even if herceptin saves 1 life it's worth it. It just breaks my heart to even think a woman with small children wouldn't do everything she could to be there for them as they grow up.
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I don't like the "endless differentiation" either, but I understand it. I think women with DCIS get sick of being dismissed by women with invasive cancer and having their own section lets them discuss their particular concerns without having to deal with that. And the problem for stage IV women is that the early stage women sometimes let their fear out on them, with posts like "please tell me I'm not like you." I don't understand a section for LCIS separate from DCIS (why not just "in situ") or stage I and II, for example. But it doesn't hurt me any either.
There are a lot of women who come here and creating smaller "communities" helps make that more manageable for some.
Nobody is going to kick you Nanay, calm down.
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MOC - the reason there is a separate section for LCIS is that it is not technically cancer, it's misnamed. It's actually neoplasia. Pleomorphic LCIS is more serious however.
Sue
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I do agree that non-invasive cancer and Stage IV should have their own forums - especially stage IV. There are other changes that should be made to stage IV: The "sticky" threads for chemo, hormonals and rads should be eliminated. That is early stage thinking that doesn't really help. With Stage IV the chief preoccupation seems to be areas of spread and tests. So there should be a brain forum, a liver forum, a scans forum etc...
I agree, member, that all in situ should be together. Herceptin should have its own forum like hornmonals does. People are always free to start threads for particular things but some of the offical segregation is silly.
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Athena, I'm just a little confused by your comment, because my understanding is that chemo, hormonals and rads are among the mainstays of treatment for Stage IV -- and these treatments target diverse areas.
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There are herceptin threads on the HER2 forum
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AnnNYC don't think any one treatment is standard for stage IV. I know one gal who is only getting tamoxifn (bone mets) and is doing very well. She hasn't had surgery or chemo. My understanding from her is with stage IV they try to manage the disease with the smallest guns first… but of course that also depends on the biology.
She was hormone positive/HER2 negative. I do believe it's very different for HER2+ and triple negatives.
Any one with more knowledge please chime in. I will admit I haven't researched this in detail. Just have had a few discussions with a few women I know that are stage IV.
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lago, I didn't exactly mean there was a standard treatment -- but that chemo, hormonals and radiotherapy are important treatment options for many with Stage IV (not all in combination or all at the same time, or in everybody -- but I know these are important treatment options for Stage IV, and I wouldn't call them "early stage thinking"). As you say, hormonals are used to treat bone mets, and I know they even work for liver mets in some who are ER+.
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Apple: your kids were cute then, and they are cute now.0
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Sorry, I have only posted sporadically on this particular thread; I have been reading with disbelief the comments which purport to be supportive.
Nanay - it is you who have derailed the OP's thread with your interminable and for the most part nonsensical ramblings;please desist from your 'stories' which really have no bearing on the discussion and are largely misconstrued .
I really hope your mother will survive with no therapy at all........given her pathology I would be very worried that she is not at least researching the possibilities. One year after diagnosis, it is too early to say you have been cured.
Now I guess I will be shot down in flames, but I feel as though I am in la-la land when I read some of these posts.
I am not being disrespectful; but this does not feel like a rational discussion any longer.
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Let's keep in mind that Nanay's mom made the decision to forgo treatment, not Nanay. I think its hard to parse that out of her posts sometimes, but I think this is not something she pushed on her mother at all.
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you are a goodheart Member of the club- thanks:)
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haaaa finally MOC understood! after like 30 pages of exchanges..I would acknowledge MOC for staying with me in the last 30 threads-- at least for that one comment..
poptart actually started in this thread in the same "tones" as MOC was-- 30 pages ago..
however, I am not sure I cannot stay that long to put poptart in the same page as MOC now..
its funny how this world could have been better if we have all the time to talk (post) -- or even just to be able to sit around in a lounge to talk about how our differences can actually help us find out what we have in common..
its ironic, that we have to hurt each other horrendously-- to finally begin to understand and respect each other.
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sam52,
I think you understand English better than I do. read the title of this thread.. and tell me if you are in line with the topic.
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