Survivors who have used only alternative treatments
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I don't.
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Deep breath, Molly. Now your posts are entirely name calling and insults. Its like you've given up on defending your position. You won't persuade anyone that way.
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Lago, your extensive message log is on the site.
Member, what gives you the impression I was trying to persuade? A display of information is not necessarily for persuasion but for education. Take it or leave it. Gotta go to work. Have fun.
bye
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Yes I post on several threads but that doesn't mean I'm giving advice all the time. Nor does it mean I'm here night and day. I post a lot in friendly and local threads… sharing recipes and other areas of interests outside of breast cancer. Just because you come here to post advice only doesn't mean that everyone else does.
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Beeb75: Remember the definition of overall survival benefit: It doesn't mean that NO ONE benefits. It means that some may benefit, some may be harmed and others, still, may see no change. Overall is for everyone (in a study or group of studies), not for one person in particular. Tamoxifen, BTW, has no overall survival benefit. And overall survival, in both cases, is just that. They may help one cancer and either cause another or cause you to die of another SE (or do any number of things in between).
Also, to everyone: there is no such thing as "your" statistics: your chances, strictly speaking, are always 50-50. Eighty percent or twenty percent, etc....are statistics of an entire group of people; not of you, personally. Once you make a decision based on statistics, you are essentially gambling, as well all do, that in the process of natural selection, you are of the same "breed" as a majority.
I also see confusion here between relative risk and absolute risk.
Finally, I think it's unethical for medical practitioners to throw iffy treatments at us as though they were fact. Mammograms, for example, have been shown to provide no overall survival benefit(remember: OVERALL means in general, for a whole population, not you or me, so I don't want any responses about how "a mammo saved my life" because I am not disputing that)....and yet this very web site continues to peddle them.
The irresponsibility and dishonesty of the cancer world is astounding. It is no wonder we have done so abysmally ever since Nixon declared a War on Cancer.
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My mom did surgery only and declined the chemo and rads. To this date she's had recurrence in breast, uterine cancer and skin cancer ( and I suspect bone at this point but she's not saying). My family is a known variant for all these cancers. I'm 4th generation but my bc was different from previous generations. For my bc my mom's recommendation was" throw the book at it." She regrets not doing more for her own. As she put it, "they just cut out more bits and pieces and parts. If I had only known."
I will point out that herceptin is not chemo, it's a genetic therapy. it does not act by actually killing cells directly (although they hope the next generation of herceptin will.)
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I was stage 3a when I was diagnosed 2 yrs ago with estrogen and progesteron + with 10 lymph nodes involved. Now that the stages have been redone I am now considered stage 3c. The prescribed treatment of Doxyrubicen and then Taxol has left me with fatigue issues I can't seem to get over. Radiation caused my skin to peel to the point I stopped treatment. Tomoxifen has been evil. It caused such joint pain and increased the arthritis pain to a point I almost couldn't get out of bed in the morning. Vicoden didn't even touch the pain. After 1 1/2 years on it I stopped. I just started taking Cruciferous Complete. My life has changed dramatically. While I still suffer from fatique, the joint pain is 95% gone and the swelling in my one foot is gone. I can walk again without pain. My onc is against natural treatment also. I'm not telling you to forgo the recommended treatment. It is a very hard decision to make. Speak with a Naturopath. Maybe a combination of standard treatment and natural would be something you should consider.
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Dear flash: I too suffer from skin cancer. According to my oncologist it has nothing to do with breast cancer or any other cancers UNLESS it is melanoma. Chemotherapy does not affect skin cancers. I still have to have a yearly check. There is a cream that a dermatologist can prescribe that is basically a chemo for the skin. If your mother has skin cancer, please have yourself checked. It not only has to do with sun exposure but is also inherited.
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I am so sorry Wornout Mom.
The one thing no one warned me about was all the mis-information that abounds. I had well-meaning friends offer advice that could have killed me, including someone who didn't believe I needed any "extra treatment".
Fortunately, I had my wits about me.
Now, I will get to the point and proudly call myself a "chemo pusher". Why???? Because, for most of us with locally advanced cancer, chemo offers major additional insurance that we will be here in 15 years time. Hormonal therapy too, if you are ER+ and Herceptin if you overexpress HER2.
Those can increase your odds (in my case) of something like 50% of being here in 10 years time with surgery alone to something like 80-90%. I'll take it.
None of this is fun, but we do get through it.
I am sorry about your doctors. You might want to consider though that the reason the second opinion was the same is that it was the most sensible course of action. I can certainly understand why it was not the one you wanted to hear.
Once I had a look at my pathology report and did some reading on reputable sites, it was clear there was a standard protocol and that was the one I had been recommended. Go read the stuff on sites like Mayo Clinic and the National Cancer Institute.
Good luck. Go look at alternative (or integrative) therapies to help with overall strength and to alleviate side effects. Watch supplements though as can have unfavorable interactions with chemo meds. Make sure you get some exercise every day.
As for your HMO, one thing that might help is to ask to speak to someone who can go over everything with you. This would be a NP and not a doctor.
And give yourself a bit of time to accept things. Things went ever so much better once I realized that the recommended course of treatment was what I needed to do.
I was back skiing 8 months post chemo, six post radiation.
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OK..here is my 2 cents or for what it's worth.worn out mom asked if there were anyone that just did alternative treatment instead of chemo and all of a sudden its a chemo vs. not chemo debate...I think her thread was hijacked...I logged on here to see if there was anyone that just did alternative...and found a debate...she didn't ask if she should do chemo or not...
Personally...I would love to hear that someone with stage 3 did alternative treatment and survived...I would love to hear that..so far..no one seems to have stepped up.
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Titan.....the only problem is that this woman might have survived anyway. That is, she just happened to fall into the "lucky 40%". In no way, would a single instance support whether this was a good decision or not.
Because we cannot predict who will fall into the "lucky 40%" and who won't, those of us who are "chemo pushers" are advocating she go that route.
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People who forgo chemo may not be brave enough to admit it with this sort of controversy going on. I know of at least one who refused chemo or herceptin. I stopped chemo after only two infusions and mine was stage III with nine nodes. As I have ILC, ErPr+ with HER neg, I felt chemo was unlikely to have much effect though the specialists disagreed. It was a tough decision and I cried for a week before I started chemo, at appointments, while shopping, I was a mess. But when I told the oncs I was dropping out I was sure and firm. My instincts were telling me to stop and when I have ignored them it's always been at my peril. The way I see it, after surgery either the stem cells had set up home in the bone marrow where the chemo can't reach them, or all traces of cancer are gone. Either way the chemo could only prolong my life if I already had mets, not cure. I did have rads and am on tamoxifen. Whether I survive or not will not prove anything as it can go either way with or without chemo.
I studied naturopathy for a year at age 25, decades ago. I've always been a health nut. But I see no known viable alternatives when it comes to cancer. Over the years I have read widely and every lead has turned out to be disappointing. My cousin-in-law was diagnosed with esophageal cancer in his early 40's and used both conventional and alt therapies. He was having vitamin infusions, essiac tea and lots more. He was totally convinced he would live and kept up the bright happy persona till the day before he died when he finally said his goodbyes to his wife and young sons.
I've been on a support site for cancer patients that have attended a natural health retreat. They do meditation, diet, emotional, qi gong, alt treatments etc and have often finished conventional treatments first. Although the retreat does have a statistically higher chance of putting people into remission, the vast majority lose their lives and the list of names is depressing. I do believe there is some way stage IV people can go into long term remission or even cure with alternatives, but the successful formula is not known. I don't think we should give up on alternatives but we need to study the brave (or foolish) few who volunteer so that it can be shown once and for all that people have a better or worse chance with particular alt treatments. Then we who doubt conventional treatments would know whether to refuse or resign ourselves to chemo with guided imagery and other complimentaries for support.
Good luck with your decision.
Edited to correct grammar.
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I think Sheila... that your kind of post is what worn out mom wants to hear about...you speak with the knowledge of your own experience...
Sorry..wo mom..if I'm speaking for you..really! I just was hoping you could get some answers to your question.
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wornoutmom, I have found, in general, these boards do not advocate alternative only. I believe those who have opted out of conventional treatments are not followed by studies and do not remain here on these boards so we will never really know their outcomes. There are some wonderful ladies who have been here on BCO for years who continue to come here to help others and some who have combined conventional and alternatives who have really great advice. However, the majority get what they need and move on, especially, those who have chosen primarliy the less conventional methods.
I was her2+, had a lumpectomy with unclear margins. I went against the advice of chemo and rads and further surgery but not before doing much studying and soul searching. I found my answers after taking lots of time in doing so. That is my advice to you. Dont rush into any decision out of fear. You will find what feels right to YOU. (It sounds to me like maybe you already have and are just looking for support and confirmation.) There are those who call me foolish but I am comfortable with my decision. I choose to change my lifestyle and let my body work for me. I do not consider myself a survivor but one who thrives in the face of cancer. I feel better now that I have made these changes, than I have in years. The drugs may work for some and that's wonderful but that wasn't my choice and I am grateful to have had one. As you can see, passions run high here. It's discouraging at times and I believe that is why some of us do not remain here but take it all in and use every bit of it to your advantage.....best wishes.
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We're really getting nit-picky here and suggesting ridiculous things -- for example, that a drug study cannot be of value without a placebo arm...or that a treatment must benefit each and every person for it to be useful (not even aspirin could live up to that standard, much less chemo.)
But, our lively and interesting debate has veered away from wornoutmom's question. You seem to be saying that you don't think the potential side effects of treatment will be worth whatever benefit you might get.
As someone finishing up chemo right now, I can confirm that the side effects are not pleasant, but most of them are temporary. Effects of cancer treatment that linger for years or forever -- fatigue, pain, etc. -- also suck, but I think most women would say that dealing with them is better than being dead, which is what is most likely to happen to you over the next few years (sorry to be blunt) if you don't try the treatments.
Studies have shown that of 100 women with cancers like yours (and mine, for that matter, ER+ and node+), 63 died within 15 years if they got no treatment beyond surgery. Chemo and endocrine therapy would save the lives of more than half of them, and Herceptin should spare another bunch. So, I'd really encourage you to consider accepting the treatments that your doctors offer you -- they are tolerable and this will probably be your only opportunity to get them.
Also, think about what you would do if your cancer did return. I've read about women who initially tried natural cancer treatment, who had the cancer return, and then faced even more difficult medical interventions. By then, they embraced them because they were fighting for their lives.
Whatever you decide, I hope you live to be 95. I truly wish you -- and all of us here -- the best.
P.S. to Athena: I think you mean that each of us is facing either/or, and that is true, but that does not translate to 50/50 odds. Just because my plane crashes tomorrow doesn't mean my odds of dying in a plane crash were 50/50. They were 1 in a million, and I just happened to be that one. Agree with you about the gambling, though I would call it, playing the odds...intelligently.
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This is what worries me about Herceptin. Taken from Wikipedia with references included, bold added by myself. I am not supporting either view here, just wondering if this can be correct?
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http://en.wikipedia.org/wiki/Herceptin
Some recent clinical trials have found trastuzumab reduces the risk of relapse in breast cancer patients by 50% when given in the adjuvant setting (i.e. after breast cancer surgery, before the cancer has spread any further) for one year.[15][16]
In one British trial this translated as follows: 9.4% of those on the drug relapsed as opposed to the 17.2% of those not on trastuzumab. In this study, almost five out of six patients would not have developed a recurrence during the study whether or not they received trastuzumab, and almost one in ten patients relapsed despite it and therefore received no apparent benefit from the treatment. Only one patient in 13 received positive benefit in terms of cancer recurrence. However, these numbers solely consider the risk of a cancer recurrence and do not account for morbidity and mortality (sickness and death) due to the treatment's side effects.
Even among the 20% of first-time breast cancer patients for whom trastuzumab is an appropriate treatment, the actual net benefits are not overwhelming when viewed in terms of all-cause mortality. All-cause mortality helps balance a reduced risk of death from cancer against the increased risk of death from a treatment's side effects. Repeated, large-scale studies show that it is usually necessary to treat between 25 and 100 patients to prevent a single death during the next two to four years.[17][18] For each life saved, between ten and 25 patients will develop heart disease; despite effective treatments, some of these patients will die from heart disease. For example, in the N9831 (arm C) and NSABP B31 joint analysis, approximately two patients died of excess heart disease or other complications for every three lives saved by reducing breast cancer.[3] The excess heart disease induced by the drug explains why it is necessary to treat up to 100 cancer patients to save a single life during a two-year study period.
- 3 "At last, Axa pays for Herceptin". 2006. http://www.thisismoney.co.uk/insurance/health/article.html?in_article_id=409897&in_page_id=39.
15 Romond, EH; Perez EA, Bryant J, et al. (2005). "Trastuzumab plus adjuvant chemotherapy for operable HER2-positive breast cancer". New England Journal of Medicine 353 (16): 1673-1684. doi:10.1056/NEJMoa052122. PMID 16236738. 16 Piccart-Gebhart MJ, MJ; Procter M, Leyland-Jones B, et al. (2005). "Trastuzumab after adjuvant chemotherapy in HER2-positive breast cancer". New England Journal of Medicine 353 (16): 1659-1672. doi:10.1056/NEJMoa052306. PMID 16236737. 17 http://www.bpac.org.nz/magazine/2007/april/herceptin.asp April 200718 http://www.sws-pct.nhs.uk/PEC/2005/061205/Enc_08.pdf Broken URL?0 -
Molly, the study on hercepitn effectivenesss was done by nature - before herceptin death rates for HER2 + and after herceptin death rates. Same for all treatments - if they are working it is clear because the number of people dying from that cancer has dropped. I have not seen any such evidence in the "go natural" reports. If it works, where are the survivors testimonies?
Herceptin was a great discovery, but like all discoveries, there is more work needed in this area and that is why they have the ALTO trials for tykerb - a smaller molecule that crosses the blood-brain barrier and, in general, attacks the cancer cell from the inside whereas, herceptin binds to the outside of the cancer cell.
The problem with posting studies is that they do not reveal the details of the methodology making it difficult to understand the suggested result. The popular media is bad about taking snippets and drawing conclusions.
Wornoutmom - I obsessed about my daughter's treatment fearing the worst - her 1st chemo was bad becasue she had a sinus infection and did not recognize it until after the chemo. Since then, she as been much better. Chemo is no fun, but the doctors are good about addressing the side effects but you must tell them every detail and not brush aside things, that under normal circumstances, would not be of concern.
Do talk openly to your medical team and have someone go with you and use a vocie recorder so you can review the information as many times as you need to.
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Member:
Actually, there is no disagreement between you and me, especially when you say:
.......Which creates a huge problem for the women it did help, few though they may be, because they are going to have to fight for an off label use of the drug.......
You have hit the nail on the head: It is outrageous that these women who are OBVIOUSLY helped by Herceptin should have to fight for it. This SHOULD NOT happen. No, what I am saying is that more effort should be put in finding tests that clearly determine who really benefits from what treatment (as opposed to giving everything to everybody, dreadful side effects and all).
Also: I respect your contribution, because your posts are measured, well thought-out and to-the-point most of the time. I also get a lot of information from you, on points that I may have had mixed up in this complicated business of trying to figure out what's best for who. So I would like to take this opportunity to thank you for your help.
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Yazmin, thanks. I do think we agree that we need to get better at targeting treatments for those women who can benefit and not overtreating those that can't. The are much farther ahead in this for breast cancer than most other cancers. When my mother had brain cancer there was only one treatment protocol for everyone, and it didn't help her at all. With breast cancer they know so much more about the different pathologies and responsiveness and they are getting better at that all the time.
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Benefit is directly proportional to risk of disease recurrance. Low risk of recurrance means lower benefit gained.
Sheila, the first thing that strikes me about the British trial referred to in the article about herceptin, is that they were treating a group that only had a 1 in 6 chance of recurrance during the study period should they forgo any treatment. Given the relatively low risk group these women fell into, its more challenging to argue the benefit to risk ratio. Had they been dealing with women who had a higher risk of recurrance during the study period, it would no doubt raise the benefit as well.
I think its crucial in any patient's evaluation of benefit, to start out with knowledge of their statistical risk of recurrance.
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I was 36 and pregnant. I live a very alkaline lifestyle-workout 2 hours a day-live a very alternative lifestyle. I feel great and am perfectly healthy as is my baby.
With that said I did chemo-infact I asked for more and would do so again. I managed the chemo with my good health. I had no side effects to the chemo.
My husband had cancer 12 years ago-stage 3 colon. They BLASTED him with chemo and he beat the odds and is alive and considered cured.
Stage 3a without tx you have a very very high chance of your cancer coming back. Chemo might harm your body but I can assure the breast cancer will kill you.
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...and wornoutmom's question remains unanswered: Is there anyone diagnosed with BC who has received alternative treatments? That was her question...I won't be surprised if no one dares to respond. If would be nice if someone did, but they would likely get mauled to death here, so I understand the reluctance.
Again, the op's question was what it was - NOT "should I do chemo" (or Herceptin, which isn't chemo).
I don't believe anyone here should be in the business of recommending specific treatments (eg: "do chemo" or "take Herceptin") without being a doctor, knowing the patient and being familiar with her medical history and possible existence of comorbidities. It is highly irresponsible. It is ok to discuss options and research, but insisting on specific treatment is out-of-bounds, IMO.
We have NO idea which treatments are best for the individual known as wornoutmom. We have NO idea what SEs she would or would not have with chemo, and we don't know whether she prefers death to a life of impairment or not, whether chemo or Herceptin would kill her or whether she needs any treatment in addition to surgery. We don't know her value system or priorities. We only have her question and the information she gives us, and I believe she deserves more sympathy than she is getting on the conundrum she faces and fewer assumptions about what "should" be done.
There are some out there who pretend they have the answers to cancer. We don't. None of us does. It is a disease with no known cause, no known cure and no known etiology. We know certain characteristics and treatments and coping mechanisms. We can share those, discuss them, but IMO we should act with humility. That is all. We have some patches, but the entire make-up of the quilt continues to elude us.
Off soap box now. :-)
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I think wornoutmom's question bears repeating again:
Are there any survivors out there who have chosen to refuse the suggested chemo and radiation treatments?
She is "hoping to hear from others who may have done the alternative approach".
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Wornoutmom,
I don't know anyone personally who was diagnosed with BC who tried alternative treatments. However, I remember reading about this woman, Anne Siple. She was diagnosed in 2006, got surgery and a short course of radiation, refused chemotherapy and tried alternative therapies.
"She had always been curious about more natural remedies, not convinced that Western medicine held all of the answers. She had long been a believer in organic food and juicing, open to just about anything, no matter how quirky it might seem. So over the next six months, she paid $20,000 to a man who treated her with what she called a "very strict protocol, mostly with Chinese herbs." She had coffee enemas, ate a diet devoid of yeast, sugar, pork and shellfish, took digestive enzymes. She used a series of contraptions she believed would kill pathogens in her body with audio frequencies and then restore her energy pathways. At the end of those six months, Siple again got bad news. The cancer was now in her liver."
Her story is here:
http://www.baltimoresun.com/health/bal-te.vaccine12oct12,0,3162974.story?page=1
She died of the disease in 2009:
Obviously, that is just one woman's story, and may not be representative of everyone who's tried alternative therapies, but since no one else can produce an example, I thought I would.
For the record, I'll tell you that I've always been a very "natural" person. I make my own housecleaning supplies, eat organic and whole foods, hate soda, never smoked, exercise a lot and am thin, and you could probably fit all the pills I'd ever taken in my lifetime (pre-BC) into a single bottle.
And yet, I got breast cancer...at age 35.
What I've realized is that cancer IS what's natural. It's how our bodies go awry. Thirty-seven percent of women and 44 percent of men in the U.S. will get cancer in their lifetime, (per SEER US govt. data) which only emphasizes to me that it's a very natural bodily process.
And unfortunately, we need to use very "unnatural" mechanisms to increase our chances of beating it. Of killing it before it kills us.
Breast cancer has been recorded throughout history -- from Ancient Egypt through Victorian times. And fortunately, humankind has learned a little something about ways we can treat it. I know that 100 years from now, people will laugh at today's breast cancer treatments. But that's where we are at this point in time, this is as much as we "know" about what might help. Take it or leave it.
When I was dx, I asked my breast surgeon what would happen if I did nothing. She said the median patient lived for 2 years. I thought to myself, "Wow, that's my natural lifespan. To age 37." And I thought, I'd like more than what's natural, so bring on the treatments.
Corrected: to reflect current US govt stats on cancer incidence for men and women.
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Susan, you are kind to repeat the original question for our asker. I have replied yes, I used only alternative treatments after surgery. I suggested PMing me but haven't got a reply.
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It always disturbs me when someone asks if they "know anyone." I understand the psychology but, there is always a story of "someone who knew someone" who died in two years doing every adjuvant therapy. And there is always somebody who is still alive after 30 years with 7 positive nodes doing nothing but surgery.
We all love anecdotes. But they are unreliable when it applies to us as individuals. Sorry to be a dork but my study group reads all the studies. We have sussed out the survival stats and made our decisions from them.
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I agree. Lucy. Others' experiences with treatment are important for sharing and connectedness, but have zero practical value and should really be discouraged in a sense. It is also wrong to give treatment advice based on what worked for you or did not work for you.
The message in BCO I most wish I could get rid of is: "I had chemo/rads/took antidepressants/surgery/ x or y treatment. It/they is/are very doable. You'll be ok."
However, she did ask a question and it would be nice for her to get an answer.
Again, the question was:
I am just curious if there are surviors out there who have chosen to refuse the suggested Chemo and radiation treatments.
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I think many here posted about their treatment not to say it worked but to let her know it's doable. I just finished my chemo 5+ weeks ago and I'm still doing herceptin. I don't know yet if it worked just know I'm doing fine now. Our disease is similar in tumor markers and from what she posted it looks like she is getting the same cocktail. I had 6 rounds of chemo. They may be recommending more but I do find that I am getting the same treatment as stageIIIA with the same tumor markers. I'm not recommending… her oncs did that already.
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And your point is well taken. It's just that we don't know if it is doable for her.0
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But it is unknowable whether it is doable for her.
No one can predict the future and predict outcomes for any individual. All we have to go on is the numbers -- the statistics -- the chance that X number of women out of 100 will make it through chemo, for example, with no long-term life-threatening side effects. Or that X out of 100 will not have a cancer recurrence if they do chemo or tamox.
Since we can't predict actualities, and all we have are odds, aren't odds the only thing we can and should discuss -- knowing full well we could fall on either side of them?
Women sharing their experiences does provide support and strength, and the odds must also be reflected there, to some degree. If you have 99 out of 100 women making it through chemo with no long-term life-threatening side effects, Wornoutmom is going to hear from a lot more of them, compared to the 1 percent who got, say, heart failure.
I don't see why everyone is trying to limit the discussion in this thread. People are trying to answer Wornoutmom's question the best they can, and offer other tidbits she might find useful -- or that other posters/readers might find useful.
This is an open internet forum after all.
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