Survivors who have used only alternative treatments
I am just curious if there are surviors out there who have chosen to refuse the suggested Chemo and radiation treatments. I had a radical mastectomy on my right breast and am now supposted to start a 1 year chemo process consisting of Taxotere, Carboplatin, Herceptin (18 Weeks) then Herceptin to complete the year and 5 years of tamoxifen. I am triple positive stage 3A thanks to being misdiagnosed and bing prescribed the BC pill the whole time.
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 was exposed to toxins as a kid thus worried of this being more exposure. The side effects don't seem to warrent going through this. I have spent countless hours researching. I am hoping to hear from some others who may have done the alternative approach as after everything my MD's have put me through I fear going back.
Thanks 
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Oh dear. You are only 36 and have little kids and you are about to make a massive, massive mistake. Your cancer was her2neu +, which means it has a growth factor that makes it highly aggressive. And you are stage III which means your cancer was advanced. I highly doubt there is anyone on these boards with your stats who chose to forego chemo and radiation and is still alive. You will hear from women who chose not to do chemo and radiation but they will invariably be women whose cancer was diagnosed at a much earlier stage and were not her2neu+. The side effects are nothing compared to what you will experience as the cancer advances if you don't take aggressive action.
Most of us have found that chemo and radiation were not as bad as we expected it. I went through it 6 years ago and am now feeling great and training for my first marathon. My children were 8 and 5 when I was diagnosed and they are 14 and 11 now. That is far, far more important than any side effect.
Your post makes me sad and scared for you. I hope you will get over your fear and take care of yourself.
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Hey there,
I agree with Member Of the Club. At Stage III, you definitely need chemo and all of the "standard of care" treatments. I have done six of eight treatments - it hasn't been that bad. No picnic, but doable. I am inclined towards natural remedies, but I don't regret my decision at all. I am doing chemo now, and then I will have surgery and radiation. Then Tamoxifen. By all means, go see an ND and find out what supplements will enhance the effectiveness of your treatments and mitigate side effects. A lot of acupuncture and other integrative therapies are offered for a reduced rate for cancer patients - definitely research that in your area. When I researched natural remedies, I found that the only people (and they were RARE) that had success with purely alternative treatments had very small, localized tumors. Everyone who had a locally advanced or advanced breast cancer had gotten worse or died. It was a bummer, but it certainly clarified my decision.
I am 37, by the way - same age! feel free to PM me if you want. I'll give you a bunch of chemo tips.
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I just finished the chemo portion of TCH, still have many herceptin to go. The SE weren't so bad. I too have young children, 4 year old twins and managed to get thru it. Do you have family near by to help with the children? mt children are what got me thru treatment, I had to get up and care for them as if nothing happened. PM me if you want to talk.
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Wornoutmom - I understand how you are feeling! Sometimes everything is so overwhelming and you just want to run away. However I do agree with Memberoftheclub. With your age, Stage 3b triple positive and young children I would throw the book your cancer. I was Stage 1, no lymph nodes and I did TCH, just finished my last Herceptin in Aug 2010. Chemo was much more doable then I thought it would be, not easy, not fun, but doable.
I know you are frightened, frustrated and overwhelmed. Please take a few moments, try and clear your mind (I know its close to impossible), take a break from the computer and research and just enjoy your kids. They are so worth fighting for and so are you!
edited to add: I went to a NP just prior to chemo and he had alot of advise for supplements to counter act or lessen many of the SE's that you can experience with chemo. I think it was because of the supplements that my SE's were not that bad.
I choose not to have radiation as for my specific dx I did not see the benefit out weighted the risks for me.
I took Tamoxifen for 9 months and decided to take a short break that has turned into a for the fore see able future break. I have decided to balance my hormones as naturally as possible through diet, exercise and natural supplements.
We all have to make choices that are best for each individual, their circumstances and be willing to face the possible outcomes of those choices.
I wish you the best!
Michelle ~ DCIS and IDC - Bilat MX with TE 6-23-09 - last Taxotere/Cytoxan x4 on 9-30-09, last Herceptin 7-21-10 - Exchange, 11-12-09 - Tamoxifen 12-01-09 to 08-20-10 - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10
Diagnosis: 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+0 -
Hello, wornoutmom,
Given that the death rate from breast cancer has declined by just 5 percent (age and population-adjusted) since the pre-chemo days of 1950, and by less than 1 percent since the 1970s, your thinking is perfectly understandable.
Do what you feel is best. I cannot tell you anything about alternative treatments as I am no expert, and have not seen any evidence of their curative value.
Realize, too, that you will face much criticism on this board. Cancer is, to a large extent, a fear-driven business and frequently therapies with lots of SEs will be recommended and accepted because many patients feel that if they put themselves through hell, or throw the kitchen sink, something good must come out. This thinking has led to over-treatment in many cases. In others, no harm was done. In a few cases, some harm may have been prevented, but there is no scientific way to know for sure with today's technology.
As of this date, there is no evidence that chemotherapy has any bearing on overall survival in large organ cancers such as breast and lung. Sequential treatment of both hormonals and chemo, as well as targeted radiation, can prolong life for patients with metastatic cancer, but there is evidence that in other case it may shorten it.
Studies that do show benefit from chemo for early stage cancer are flawed because they do not have the placebo-controlled protocol. Alas, it is considered unethical to NOT give patients chemo. Without proper protocols, it is hard to assess who chemo might benefit. They also show an association, but this is not the same as a causal relationship. There is evidence that specific drugs may benefit those with specific markers/genes but this area of study is in its infancy, and so the guidelines do not distinguish amongst women except by stage, tumor grade and er, pr and her status. The oncotype test has yet to be time tested for reliability.
The side effects of chemo for each individual are also impossible to assess beforehand and range from the relatively mild to the permanently disabling and, in a few cases, still result in death. I am not aware of any research showing whether there is a relationship between SEs and anti-cancer efficacy.
Chemotherapy has proven to be effective in other cancers, such as Wilm's (sp.) tumor, some childhood leukemias, testicular cancer and some penile cancer. Alas, breast is not on the list.
Keeping good habits (not smoking, exercising, etc....) will not cure or disappear any existing cancer but they just might be the tipping point to prevent a recurrence. That is what I hope, but, again, scientific evidence of this is relatively sparse.
If you would like me to source my information, feel free to PM me.
Good luck and try to survive the onslaught!
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How scared and frustrated you must be, wonoutmom!
Are you really looking for anecdotal support to sway your decision?
People will say they are sure the chemo saved their lives.
People will say they are sure the supplements/diet/fill-in-the-blank alternative or complimentary treatment saved their lives.
Dig deep to figure out what your value systems really entail. Do your research. Make your choice. Then don't second-guess yourself.
You're going to get a lot of heat for even asking if you should forego "standard" treatment. But it's your choice (and maybe your family's with you, but still yours to make.) I wish you peace in making your decision. I have very strong opinions about what you "should" do, but they don't matter one bit.
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Athena, OP does not have early stage cancer, she has locally advanced cancer. It is absolutely untrue that chemo will not help her, especially herceptin, which has transformed her2neu+ cancers from a death sentence to a highly treatable form of bc. Herceptin has been so effective that the clinical trial was ended early so the women in the control arm could take advantage of the drug. I was on these boards before that clinical trial ended, I remember what it was like for women who were her2neu positive. Saying anything other than that herceptin saves lives is a lie.
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I, too, am a triple positive but Stage IV out of the gate. I agree with "member-of-the-club," sweetbean and Basia. I did the 6 rounds of TCH, followed by a lumpectomy and then IMRT radiation. The TCH was doable and I was 68 and working. Talk to the ND about glutamine, fasting and other options to make the TCH part easier. I will be on Herceptin as long as it is still working. I think I am alive and NED because of herceptin. So I live with drippy nose SEs because it is way better than being dead. Your ND - and the information on the boards here - will give you suggestions on how to improve your chances of avoiding a recurrence. I do mushroom powder, curcumin and piperine, green tea extract, Omega 3s and CQ10, zyflamend and other stuff to improve my chances of a long NED. Think of the ND and alternatives as in addition to rather than instead of.
You have the support of your sisters as you start this icky journey.
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wornoutmom, I second AnneW's excellent post. It really comes down to that, as there are no certainties in cancer. We must all do what we can live with and not impose our fears on others. If the science were less than uncertain, we would have a cure by now.
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Has Herceptin ever been tested along with a placebo study?
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I want to follow up to "Member of the Club's" follow up. I had no tumor and then suddenly this big honker along with pain from the bone mets. It came like wild fire. Given the speed I know I would be gone like many of the earlier women before the herceptin clinical trials ended. Herceptin is a gift you should not pass on. Your kids deserve it.
Also check out the discussion on the HER2 positive board as well.
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I have a friend who was diagnosed in her mid-30's back in 1980. She is now a 30-year survivor after a single mastectomy and removal of lymph nodes. Following surgery, she refused chemo and radiation and changed her lifestyle drastically--lots of psychotherapy, divorce, macrobiotic diet, then vegetarian, organic food and products, no caffeine, exercise, eventually moving to the Caribbean and teaching yoga on the beach for a while.
Although it has worked for her, I think her case is highly unusual and I suspect that her cancer wasn't that advanced--I doubt that they had the HER2 test back in 1980.
Since you are at Stage III and HER positive, I think you need to be as aggressive as possible with your treatment--and supplement it with alternative/complemtary treatments --I don't think you can afford to go the alternative route exclusively. Also, it doesn't sound like you've had good doctors so I would look for new doctors and get second opinions with a complete review all of your files, including having your pathology slides analyzed by a different hospital or lab.
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Athena I am not sure what PM is, sorry
New to this. For me I watched my mom with Leukemia who was given 8 months to live and told to have chemo, radiation, as well as bone marrow transplant or she would die yet she decided to go an alternative route. Much against doctors who tired to put fear in her. She is an 11 year survior and they can't find one cancer cell in her body while others she knew with the same disease died within 2-3 years with the standard treatment. And honestly she is healtier than I have ever seen her. I have no cancer in my body at this point. Just preventative as the risk of microscopic cancers. The secondary tumors and harms to vital organs that are done are my biggest concern. Say you get a second cancer after 5 years induced by the treatment you will still be listed as a "survivor of BC". With herceptin one of the many concerns is heart damage and stopping trials in not a good thing to me. Long term studies are far more important so we don't have another oops now we know it is bad. I had my radiologist tell me yes it can cause cancer and that it used to in the "olden days" cause it in the lungs then she told me in 1990!! I commented on how that was only 20 years ago and I was worried that in a few years they would have to tell me yet again they were wrong. As we see each day on recalls etc. Anyone who has lived has seen how frequently you are told something is worth it then it is pulled off the market. So she said well I can only live in the now and what we have to give you now.. So I have deeply searched all sites and seen where they overlap. So basically I noticed this was the alternative page and wanted to see if anyone did not have chemo. I do appreciate all the personal stories in case I do take chemo. Who knows maybe the NP will suggest both. I also have a hard time with not being given chemo sensativity testing so they know how my tumor recacts in my body not cookie cutter perscriptions. Although my radiaition Dr. seems to think I can have tissue sampling to do this by my HMO is saying no. Will look into that. On that has anyone tried IPT??
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Thank you brilandgirl. Those are some I am considering=) Unfortuantely I will refrain from dropping names but my HMO center is to big! I tried the second opinion but my doctor caledl the other one and discussed all my information with the second opinion so I was just told I agree. They all work for the same place. So I can't really get a second opinion. In fact without my permission she told the radiologist my whole story even non BC related things (they have to outsource radiology). So I got a lecture on oncology there too and handed a form of release of information from my place to them. I said isn't this past the fact since you have all my history so I refused to sign it. Boy I tell you it has been crazy!! My other network never gave me one problem. THis one even left me with internal bleeding after my mastectomy so 8 hrs later I was back under. The list goes on.
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wornoutmom...Just a reminder about posting. PM means Private Message.
Good Luck to you whatever treatment you choose.
ALL NEWCOMERS ARE ALLOWED 5 POSTS IN 24 HOUR PERIOD UNTIL THEY REACH 50 POSTS.
YOU HAVE UNLIMITED PRIVATE MESSAGE POSTINGS BY CLICKING ON THE PERSON'S NAME YOU WANT TO COMMUNICATE.
JUST FOLLOW INSTRUCTIONS WHEN THE NEW PAGE OPENS UP.
I HOPE THIS WILL HELP ALL THE NEWBIES.
Sheila
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PM = private message. You can click on a person's name and get to their "homepage" and on the right-hand side you will see a link to send a private message.
These are no easy decisions. Of course, cancers cannot really be compared with each other, so your mother's progress is just that. Having said that, I more than agree with your concerns. I did not have chemo. My qualms about the science backing chemotherapy were part of the reason; the other was a comorbidity. I don't know anything about Herceptin, but there is lots of information.
The other thing is that personalized answers are lacking in non-stage IV BC. All they can give you are statistics, which are useless for individuals, since a person's likelihood of being on one side of any particular ledger is, strictly speaking, 50-50. I have an illustrious history of being in the tiny minority of just about everything. One would have thought the natural selection would make statistical oddities odd indeed, but many of us outliers remain, and get breast cancer and find ourselves on the "wrong" side of the studies our oncologists cite time and again.
And Herceptin does not work for 100 percent of the people it is used for. In fact, I gather that the percentage is very, very far from that. So yes, you could be helped....or you could get ill. And no one can honestly look you in the face and tell you what will happen. There are plenty of earlier stage people who have progressed to Stage IV despite doing all the chemos and rads, etc... and others who did exactly the same thing and never had a recurrence. So something else is what makes the difference and, for the life of us, we don't really know what it is.
Anyway, welcome to BCO and I am really sorry that you have to be here.
Oh...and nobody has answered your question (we've been to busy giving our opinions):
Anyone out there who only did alternative treatment?????
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They do not do cancer trials with placebos, that would be unethical. The control arm is always the current standard of care. But with herceptin the current standard of care was nothing targeted toward the her2neu overexpression, there was no treatment specific to these forms of cancer which is why they were so deadly. The results of comparing herceptin to nothing were dramatic. If you have any question about this, go back before 2005 and read posts by women whose cancer was her2+. The difference between then and now is striking.
While the tiumors may have been removed surgically, it is highly likely that you have cancer cells circulating in your bloodstream. The number of positive nodes is a surrogate for that since there is no way to test for cancer cells directly. Any positive nodes mean it is likely that there are cancer cells still in your body. With the number of positive nodes you had, it is highly likely.
Side effects aren't nothing but you should be far more afraid of those lurking cancer cells than you are of the side effects.
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Member,
There is no way of knowing if a placebo is unethical unless it has been used and the treatment group has improved outcome. At that point, ethical guidelines dictate they stop the trial and "unmask" which group was taking the placebo.
In the scientific community, most cancer drug studies are considered scientifically unreliable because of the lack of double-blind placebo controlled studies.
I've been reading about this. Belief in your drug has shown to produce 30-50% placebo effect.
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wornoutmom, I sent you a pm.
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No no no. You must treat the cancer for people in the control arm. You cannot give them a placebo. You cannot give them no treatment at all. No research facility would approach it that would -- I suspect its not legal. Why would anyone volunteer for clinical trials in that case, if they were going to give one arm an untested drug and the other arm nothing at all? Seriously, you don't really believe this do you?
This business of "unmasking" is highly unusual. Generally they wait years to study the longer term results before reaching any conclusions. What happened in the herceptin trial was extremely unusual and reflects what a wonder drug it is. It is very rare to have a cancer drug so dramatically effective, so early in clinical trials.
I can see why you don't accept the validity of effectiveness for any cancer treatment because you are using a standard that will never, ever be met. The alternative to what you consider "unreliable" is certain death for a number of participants. I don't want to live in that world.
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wornoutmom I'm another who just finished chemo 5+ weeks ago (6 rounds of Taxotere, Carboplatin, Herceptin will follow full year of Herceptin and generic Arimidex) currently just doing Herceptin. Yes there are side effects but they can be managed. It really wasn't as bad as I thought. As far as permanent. Well for me my chempause is permanent since I just turned 50 a few weeks ago. I do have a few others but I have been assured they will go away in a few more months. Yes my hair is growing back.
HER2+ status and your young age means you need to fight this aggressively. Even at my age I was given an aggressive treatment. Prior to Herceptin those of us that were HER2+ had a very poor prognosis.
I have no regrets about doing chemo/surgery. I know this is the best route. Do look into alternative methods in conjunction with traditional. Just be sure to clear with your onc so there are not counter interactions.
EDIT:
The combination of Chemo and generic Arimidex increase my survival by 44%. Means that 84 women out of 100 with my stats that did the same treatment are alive with no evidence of disease in 10 years.With surgery alone only 40 women out of 100 with my stats are alive and NED.0 -
"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson
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I have a friend who has been a manager of a health food store for over 25 years. She is thin, non drinker, ate organic, clean diet, lots of supplements - really strong in good lifestyle choices. Ended up with a 6cm triple negative tumor. Was horrified about traditional treatments and researched like crazy. And finally did chemo and rads. (and she did fine, and is doing great now)
I saw an NP also to help with SEs during chemo. I asked about skipping parts of the treatment (which consisted of surgery/chemo/rads/herceptin/tamox). He said that bc is a very well research/studied disease and they have a pretty solid successful approach to treatment. His advice was to go along with the treatment indicated and supplement to strengthen my body throughout, and to minimize risk of recurrance afterwards. He said that if I had something incurable or some rare crazy cancer that no one knew what to do with, he would suggest throwing a bunch of things at it (his words) but in my situation, he backed the oncologist and we worked from there. And it went great. His advice re supplements REALLY helped. The chemo was do-able, the rads was a breeze, the herceptin was fine, and tamox is going fine also. I am back to 'normal', living life feeling fantastic every day. Just had mammogram yesterday - all clear. I intend to live a long and healthy life and die an old lady!
I really think you need to look at the numbers. Yes there are side effects to all these treatments - but what %? And what is the % of recurrance to you if you do no traditional treatment? I think (for me) the second number would be too high to deter me from taking the risks of the first number.
I also think that the healthy living stuff is great (hey - I do it!), but it isn't enough once cancer has happened. We are not talking about reducing future risk, we are talking about dealing with something that has already happened. I hope that your NP is a good one. I don't like the thought of putting ALL your trust/decision into one person - especially if that person has a financial advantage in treating you.
Curious - what does your husband think? He has a huge stake in this also.I wish you peace with whatever you decide. Also, PM me if you have any specific questions I can help with.
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if you decide to forgo treatment you should contact that doctor in Houston that is in Suzanne sommers knockout book he is also in marissa weisses breast book so I think he is legit
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Wornoutmom,
I cannot imagine the utter terror you are experiencing. Asking this question and giving us your own mother's background demonstrate that you have severe doubts. Yet you do not want to be rash or careless just because you have doubts.
You asked for people who have refused treatments and still survived. There are quite a large number of those cases. They are not on the BreastCancer pages. They are also never allowed to participate in studies.
My friend Karen had a 5+cm tumor removed. She had 4 or 5 (I forget) positive lymph nodes. She did have radiation, and went on a really strict diet of mostly raw vegetables, working closely with a naturopath and nutritionist. Her daughter was only 6 or 7 at the time. That was about 17 years ago. Karen is now retired. She did belly dancing, massage therapy, and has had a joyous (cancer-free) life.
Since I am only a year past surgery there is no way to know what my prognosis is. Since I had two tumors it is a bit of a twist. One was grade 3, the other was HER2+. So you could say they were aggressive and fast-growing. I had them removed. I refused follow-up surgery, radiation, chemo and herceptin.
I bought a report from Ralph Moss, I read a ton of books, I consulted with other women -- some of whom refused treatments, some of whom did everything. In the end you do what feels right for you.
The reason I finally rejected herceptin was the phony way they they reported the figures. It may be a helpful drug. But claiming a 50% statistic when the truth is that the decrease in death went from 2% to 1% just turned my stomach.
But please continue to ask questions until you feel calm about where you are.
I wish that somebody would study women like me and Karen. I scoured the Internet and volunteered for breast cancer studies over and over. Nobody would allow me to participate in their studies because I would not take chemo. They only want to study women who take chemo. Nobody wants to study women who try alternative therapies.
Good luck with your personal path. You are loved and supported regardless of the choices you make.
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A decrease from 2% to 1% is a 50% reduction in risk. The actual reduction varies depending on what your risk is. And no one with invasive bc starts with only a 2% risk of recurrence. So if you have a 20% chance of a recurrence, herceptin will cut that risk to 10%. Nothing phoney about those stats. I sure hope you didn't base your decision to forego further treatment on this misunderstanding.0
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Susan has the math correct here for the absolute benefit to her as a person. Relative risk figures are very deceptive. There is no treatment that has 50% benefit when compared with no treatment. Ask your oncologist.
But you also have to ask exactly what "benefit" means. A lot of treatments have recurrence benefits but not survival-from-all-cause benefits. The last I checked with my oncologist, Herceptin had only improved recurrence stats (incident free survival).
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Hi Wornoutmom -
I've been told and read that if you don't feel good/positive about your treatment, that you aren't going to do so well. So, do your homework - talk to practitioners on both sides. Pray and ask for guidance. Feel good about the path you should take.
I've had a lumpectomy and did MammoSite radiation last week. However, I really don't want to do the chemo and have been researching options. My cancer, although at an early stage, no lymph node involvement and had clear margins from the lumpectomy, is aggressive. Hopefully getting the genetic test to be accepted by my insurance (1st time denied due to it's experimental nature -WHAT?).
Anyways. the thing that is frustrating is finding someone locally that will monitor and assist in alternative treatments. A friend got me the book 'Cancer-Outside the Box', which lists alternatives. Also the web site - http://www.cancertutor.com/ has a lot of the same info as the book.
I had Non-Hodgkins Lymphoma in 1997 and did the chemo thing and then a prophylactic stem cell transplant with more chemo and full body radiation. I have some breast cancer in the family history, but the closest relative is a great grandmother. I am of the opinion (until I get the genetic test results) that this breast cancer was probably a secondary malignancy post transplant (my oncologist said this too!!).
My oncologist gave me some 10 year survival statistics for ladies with my type of breast cancer. Those that only had surgery and radiation and then those that opted for the adjuvent chemo. Although this isn't an exact science, this can help. Mine was a 6.5% improvement in the 10 year survival - still debating if this is enough to warrent chemo. The relapse statistic improvement was a little better at 14%.
Still trying to figure it out - Chemo doesn't stop your body being a place that cancer likes to grow. I feel better in thinking of ways to get my body to recognize the cancer to kill it on it's own.
God Bless,
Danielle
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I would also echo: Don't look for decision-making information on this web-site forum. It is dominated by well-meaning people who blindly push the status quo and never read for themselves. You need to find another discussion group specializing in alt/ integrative breast cancer therapies.
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