Survivors who have used only alternative treatments
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I agree Member of the club~
I was one of those terrified women.
It made me feel good to read your words about being brave.
Thanks.
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I don't understand if the topic is Surivors who have used only altnernative treatments, why are there others who have done conventional treatments posting here?
Thatgirl began a topic a few weeks ago for those doing alternative treatments. It said, "This thread is for the stories of Alternative journeys ONLY. This is NOT a thread to post studies, opinions, questions etc. If you have questions about their journey please send them a private message."
Why aren't just alternatives posting there instead of posting here?
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WOM is actually exploring the possibility of herceptin only, so i don't think even she has decided to forego all conventional treatment.
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mindovermatter - The thing is that there are no survivors of alternative only treatment posting here except for the chick with the book to sell and Nanay(Ruth) who was at first saying her mother is a survivor but only 12 months out from dx. They are either dead or scared to go alternative alone and went conventional. There may be one or 2 others who had very early bc and were probably cured by surgery.
Notice the thread started by 'thatgirl' had been inundated with replies - NOT!!!
We all care about WOM - we want her to survive to see her children grow up - hence the emotion that has applied to this thread - especially from the HER2+ve bc patients like myself who know just how serious her situation is and how important it is for her to accept the treatment.
I am brave!!!! Thanks MOC!!!
Sue
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Nerida
Hi
I follow your story on stage 4, my Sis is living in Australia, she tells me how good your healthcare is, so I like to see how your doing... I'm stage 4 and from the uk....
Just wanted to tell you I was dx stage 4 from the beginning after 8 chemos and herceptin. I had mx and the biopsy came back that I had a 90% response rate... Chemo did work in my case.
Thinking of you and keep positive,
Your a good person you single handedly saved the goldfish!!!
Love
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suepen: i love your post. well said.
MOC: your statement about bravery also had me choked up. beautifully written.
i am always amazed at women who decry conventional treatment and HAVE SURGERY. They talk of using "only" "alternative" treatment - and throw in news of SURGERY.. lying on an OR stretcher, an anesthesia tube down your throat, while a surgeon hovers, scalpel in hand? Hello, Western medicine! in fact, one could argue it doesn't GET more "Western medicine" than that.
Complimentary medicine is amazing. It can help us through treatment, and keep us healthy afterward. No one is knocking it. But as has been reiterated dozens of times on this thread, in some cases, it is hardly a substitute for conventional treatment.
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elmcity69 - thankyou. I see you were diagnosed the same day I had my fateful mammogram in 2009 - my 57th birthday. I'll never forget that day.
You, out of all the people on here, should be the one WOM looks to. Your diagnosis is almost identical except for the no of nodes and PR reading. You have young children and you had the sense to see that conventional treatment is of the utmost importance.
Sue
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Britchick - Well said - I totally agree.
MOM really needs to get those margins clear - it 's very important for her to find out if there has been any growth in that area. Not sure if chemo is still an option for her, although it's not that long since her surgery.
WOM - needs at least TCH. AC-TH is normally recommended for node positive HER2 bc, but the onc might agree to TCH x 6 if she's worried about heart damage. I had 6 x TCH and I managed just fine after the 1st treatment. As I said before, the short term pain is worth the long term gain. I was closely monitored for the whole 12 months of herceptin and experienced no heart issues from it. My hair grew back just as thick as it was before but very curly. Herceptin by itself is a walk in the park - no SE's what so ever. It's only 18 weeks and the chemo part is over. What's 18 weeks when you've got your whole life ahead of you.
Sue
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OK, I've been promoting conventional treatment as much as anyone but I think we've forgotten that WOM has some chronic health issues. I believe she should do chemo as well but she understandably wants to be careful. I wouldn't recommend any specific protocol. I just think she should work with an oncologist to craft the best approach for her, in her situation. Its because of her health problems that she's exploring the possibility of herceptin alone.
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I just wanted to say thank you to all of you that posted your thoughts ideas and research. This experience has been overwhelming at times, and I find myself lost in all of the data. And frankly, my prognosis is very good with my Grade 1, but there's always that looming fear of recurrence iwth a 100% ER + tumor. I want to especially say thank you to those that "debunked" Hollie Quinn's book. I've been trying to read the Alternative info, in an effort to pull out complimentary therapies for me, as I've yet to find an integrative doc I can afford. I have friends that are energy healers, of all types and backgrounds, and NONE of them would have recommended alternative treatments alone for my BC. They all believe in complementary therapies, including diet and exercise in conjunction with energy healing...Their belief, (and I find since this dx, my belief too ) is heal MIND, BODY, and SPIRIT. I find it so disillusioning that there is such aggressive and shameless self promotion to sell books, professing alternative treatments as "cures" when it is in fact complimentary tx that has been the basis for the "cure" or their NED status.
WOM: I think the MD's are working to heal you to the best of their ability. Even with their professed detatchment, and their lack of personal touch, the last thing any doc ever wants to see is one of their patients deteriorate. Regardless of some of the alternative attitudes, docs are people not robots. I hope you find a way to balance your conventional and alternative methods into a tx plan that minimizes pain and aggravation, and accelerates your healing.
MOM: You know I think your beaked, and exceptionally creative. I encourage you to visit your docs for clean margins at a minimum. Our bodies are amazing things, and we all have abilities to self heal, but whatever imbalance brought you cancer, may still be there inside of you. I hope you can find that internal balance through a fierce pursuit of conventional and alternative txs. I think that everyone who posted using conventional tx on an alternative tx ony board, is looking out for your best interests. They want to see you thrive, not decline...and I think it's that fear in all of us that can make our posts seem edgy or aggressive.
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It seems like Merilee's post was not addressed, and I wanted to thank her for posting, and draw WOM's attention to it....Merilee did all she could with alt. treatment, and had a stage 1 ILC diagnosis. She also had a bilateral mx (I'm pretty sure).
Yes surgical decisions matter, but they are NO GUARANTEES. EARLY STAGE is no guarantee.
WOM - your stats are much more aggressive than Merilee's. What does that tell you?
She has had 2 recurrences in a short amount of time. DESPITE all she did with alternative, diet, DIM etc.
DIET does matter, but not without conventional treatment too.
@Merilee - I will send you a PM. Hang in there - this treatment will take care it.
Where I live we have lots of casinos. Personally, I do not like to gamble.
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Suepen, I'm wondering what you meant when you wrote, "Not sure if chemo is still an option for her, although it's not that long since her surgery." It would never be an option for me. I find it appalling that my surgeon and oncologist dropped me like a hot potato just like that. I returned for a follow-up visit with my surgeona few weeks after surgery. I saw an oncologist just to find out about my path report, not to discuss chemo. Since then I've not heard from either or anyone else at the hospital. If they weren't getting my money for surgery and chemo they just didn't give a darn.
I don't know what the circumstances are with anyone else's family or friends and how they deal with your cancer, but mine don't express that much concern. No one has made that much of an effort to force me to fight to survive. Because I've not had treatment and have had to deal with no side effects, I appear perfectly healthy. It's hard to get any sympathy when you have a thick head of hair, no pain or fatigue. And to top it all, I haven't cried about it. You see, for me one of the strange side effects of taking Lexapro for the past seven years after being in a car accident is that it took away my ability to cry along with helping tremendously to relieve my anxiety.
Now here's another intersting thing. My daughter is a psychologist and guess where she works? In the Department of Oncology. Could this get any better?
What I think it all boils down to is that I've put breast cancer on the back burner . I don't leap out of bed every morning screaming Oh my god I had breast cancer! And I don't toss and turn keeping myself up at night. I took care of the problem by having a lumpectomy. I wouldn't think about a mastectomy because in my opinion, women shouldn't be so willing to have their breasts removed if not absolutely positively no other option necessary! And chemo can be compared to the treatment of blood-letting in the past. It will most likely come back to bite you when you least expect it.
But I do appreciate everyone's concern. At least someone cares.
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Whenver you fall, pick something up.
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Mindovermatter,
I'm not sure what you want from your doctors, but you say you refuse anymore treatment and are mad no one is forcing you to do anything. What do you want them to do? There are plenty of women who need treatment aside from you, and it sounds like they're just respecting your wishes. Why be mad with them?
Also, as a woman who had a mastectomy, I really don't appreciate your flippant comment about women who have this surgery.0 -
Digger,
What I do expect from my doctors is a call back. Then I can at least say, "Thanks for calling but no thanks.
I don't see a diagnosis for you. I'm hoping that you had no other option than the mastectomy. You came to your decision because of fear. I came to my decision without fear.
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Wow. I respect everyone's right to their own opinions and to make their own treatment decisions. But to write here your assumption that "you came to your decision because of fear" is beyond rude and condescending. You don't know anything about how or why a particular individual made the choices she made.
I try not to get involved in threads like this, but mindovermatter, you just went way too far here and I feel compelled to speak up.
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What makes you think Digger had her breasts removed out of fear and not after hours of rational thought--of weighing pros and cons and deciding what's best for her? How can you be so judgmental about that, MOM??
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Do doctors in America actually do that? They call you to say "thanks for calling but no thanks." ? Wow!
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MOM my first thought was exactly the same as Digger's -- what do you want from these doctors? You told them you are done, no more treatment. Do you want them to call you up and say pretty please? And what do you want from your family? "To force you to fight to survive?" Is that why you've decided not to pursue treatment, to elicit this response from your family? They too are respecting your wishes. And finally, what do you want from your friends? There's an astonishing amount of passive-agressiveness going on in that one post. I'm left not understanding why you chose the route you did and what you want from everyone around you. I can imagine how they feel.
Plus the dig at women who have mastectomies is just arrogant. You have no idea what her situation is. Nice of you to pass judgment anyway.
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<Do doctors in America actually do that? They call you to say "thanks for calling but no thanks." ?>Yes and then they send flowers. You should move here.0
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It's simple.......How many women have expressed the word FEAR here? Why else would anyone do treatments unless they had a FEAR of recurrence or FEAR of dying or FEAR of not seeing their children grow up. As I previously expressed, this is supposed to be about "Those Who Have Used Only Alternative Treatments.
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I actually am afraid of dying and not seeing my children grow up. If you have kids, and you don't have this particular fear, i don't think that makes you a better person.
I get that you are pissed, pissed at everyone. Come through loud and clear.
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MOM said,
I don't know what the circumstances are with anyone else's family or friends and how they deal with your cancer, but mine don't express that much concern. No one has made that much of an effort to force me to fight to survive. Because I've not had treatment and have had to deal with no side effects, I appear perfectly healthy. It's hard to get any sympathy when you have a thick head of hair, no pain or fatigue.
Are we suppose to be feeling sorry for you? It seems like you are looking for sympathy. If so, I really am feeling sorry for you...to feel that nobody cares.
If you can recognize that you are not the only 'pissed off woman' here, and stop attacking some of us, maybe we could help you better.
Edited to add: Fear keeps me from crossing the road in front of an oncoming bus.Being paralyzed by fear and making no decision is not very wise.
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Mindovermanners-
Regardless of how a women ends up with a mastectomy - either because of rational evaluation of her individual circumstances or irrational terror - (and the Mx decreases the terror) what's it to you?
"What I do expect from my doctors is a call back. Then I can at least say, "Thanks for calling but no thanks." "I don't know what the circumstances are with anyone else's family or friends and how they deal with your cancer, but mine don't express that much concern."
If you don't have fear, why do you need friends and family to feel concern? You don't. Why should they? Sounds like you crave drama - maybe the reason your friends and family don't express much concern is because they don't like being manipulated into feeling sorry for you.
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I think Nerida is referring to Britchick's post from 15 hours ago.
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Mindovermatter - sorry for the comment about chemo, but you did have a positive node so it is usually indicated. That's your choice but I would hesitate to call chemo anything like the blood letting of old.
I care about you, I don't want you to die from bc. I don't want WOM to die either.
I ended up with bilateral bc and went against the recommendation of a BMX - I insisted on another lumpectomy. However, clean margins are essential. After my first lumpectomy, when I found out there was LCIS in the margins - I totally freaked out until my onc explained that LCIS wasn't cancer. It's ok to leave it there, but it's not good for you to have Grade 3 cells left behind.
I'm sorry you didn't have more caring doctors, however, it's a free world and they could probably see how much you weren't interested in further treatment - it does come across very strongly.
MOC - I'm sure WOM's onc wouldn't recommend chemo if her chronic health issues (whatever they are) hadn't been taken into consideration.
As for the comment about what are we conventional people doing posting on here - well it's my right and I will exercise if, even if it only saves 1 of you.
Sue
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Hello Suepen,
I did not have a book to sell. I had just checked out that book at the library and alot of the info in there reminded me of things my DOCTOR had done for me and taught me to do as well at home for maintenance so to speak.... In September it will be three years and I am doing good. I guess if I mention any more names then I'll be accused of selling them, oh well.... To each his own. Dr Fredda Branyon, New Hope Medical Center (no she is not my doctor).
Kimberly
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Kimberley - I wasn't referring to you as the person who had a book to sell - it was the 'You did what book' I was talking about.
Sue
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Orangeyousmart,
You said, If you don't have fear, why do you need friends and family to feel concern? You don't. Why should they? Sounds like you crave drama - maybe the reason your friends and family don't express much concern is because they don't like being manipulated into feeling sorry for you.
Let me give you a better sense of what I'm trying to say........I don't want pity. I don't understand why I should be attacked because I have made a decision not to do anything further. I believe that you as well as many others here want to work very hard to sway us to come over to the other side where we can all discuss our diagnosis, treatments and give hugs. But heaven forbid someone should disagree. Then all hell breaks lose over here. Yes, I do believe there are those who are diagnosed with DCIS and still do unnecessary treatments. There are others who do mastectomies when a lumpectomy and radiation may be just as beneficial. So, I use the word fear. Makes sense doesn't it? It appears that it is clearly us against them. Why is it that only breast cancer and no other cancer seems to bring out all the crazies? Hmmm, maybe cause the majority of those with bc are women. Now, don't go lecturing me on women supporting women. Cause it will be falling on deaf ears.
One more thing.......If I craved drama like you suggested, wouldn't I want to be constantly visiting the doctor and having tests and having people gush with sympathy? As I've said I don't dwell on it. Might just be mind over matter and not mindovermanners Miss Orange Smartypants.
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