Survivors who have used only alternative treatments
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Also, visit the Commonweal site and look at Michael Lerner's free book there in the publications section:
http://www.commonweal.org/index.html
I am 35, diagnosed initially w/ Stage 0 DCIS ER/PR+. I did a lumpectomy and radiation followed by tamoxifen. It came back a year later as DCIS and invasive with LVI. I had a double mastectomy, full axillary dissection (no lymph nodes were involved!), did chemo and back on Tamoxifen. Now, it's a year and a half later and I am metastatic in my lungs and skeleton. I'm on Capecitabine chemo and doing bisphosphonate injections but about to switch to hormonal therapy per my new doctor's suggestion. This sounds good to me b/c I can do everything chemo would do (albeit slower) through diet and mind and exercise. If I were you, which is what you were asking, I'd go full force ahead with whatever chemo they can give you and try to knock this out. I'm so so sad I didn't take away my breasts when I had DCIS (but who would have evvvver suggested that?). I want you to have everything including time with your kids, so my vote is do the chemo and then spend some time at Commonweal so you learn how to integrate more holistic care into the plan. Also, have you looked at the Young Survivor's Coalition website. It's pretty good. Just don't read survival stories. They are only confusing. I've been told by my docs that therapies these days can throw some into remission. My thought is that some could be me and you, so I vote for that!
So much love,
Jennifer
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I am curious - what did your ND say about chemo?
Thanks.
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Wornoutmom, you are writing as if the choices are going alt or going chemo, when in fact you can do both and many, many women do. And you are writing as if they are equal in effectiveness and, with your particular cancer, they are not. Have you found a single woman with locally advanced breast cancer, like yours, and her2+, like yours, who skipped chemo and lived without a recurrence for more than two or three years? Have you found one?
You have kids. I can't read your posts anymore, I'm sorry. They make me sad.
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Member_of_the_club: I totally agree, doing both is also a choice, ... I was wondering what your significant other thinks?? i do not recall reading this...
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WornOut, I am so sorry you are faced with this decision. It really makes me so friggin MAD that we still do not have a handle on preventing Breast Cancer. Young women with young families.. it makes me crazy.
I was stage 2B, a huge honkin tumor never seen by mammogram or ultrasound (giving me a false sense of security - very dense breast tissue). Nothing in the nodes. I was scared to death. I did chemo, bilateral MX, and radiation - I did everything they medically recommended. I was not supposed to get LE, I got it anyway, this really bothers me. Drives me nuts that I lost three healthy lymph nodes. Then blasted the whole area with radiation!
After I did all that was medically recommended THEN I did everything else that is homeopathic, alternative and complimentary. My ONC does not like all the supplments I take recommended by my osteopath. I do it anyway. I exercise, I don't drink alchohol (a known human carcinogen), I don't eat meat for the most part - but a plant based diet, I don't eat dairy, I eliminated sugar, I exercise regularly and vigerously, I eat organic, I eliminated chemicals, plastics. It goes on and on. I do it all. It is like my new cause.
But, nobody can tell you what is right for you. But I do agree you should deeply research whatever you do so you have no regrets.
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I just wanted to say that when looking at statisic rates of no additional therapy that they mean just that NO additional thearpy they do not look into alternatives. I plan to stay closely monitored by my oncologist as well not just sit back and do nothing. I keep getting questions about surviviors but I am trying to respect the privacy of those who have shared their stories with me. Here is one woman who is out there www.foreverhealthyandyoung,.com/index.php?post=98 hope this link goes through as it won't let me past. By the way she was stage 4 and is amazing
I just don't understand why so many people feel they should TELL me what I need to do when my question never asked for advice. Sharing a story is one thing but to tell someone what they must do is a bit out of line. Some have kindly made suggestions which is a much more respectful way to approach it and I appreciate this. I have refrained from posting all the statisics I have found that I have brought to all my oncs and radiologist that they can't and won't disagree with. You have to be well educated not just quote a few concerns but you will see how quickly they can't refute it. I have studied down to the molecular level in order to discuss with my onc. This is a huge reason for questioning their treatment. I am sorry if my posts offends someone it was an honest question and if it is that offensive then maybe you should not respond or think about keeping it to yourself. I do this as we are all entitled to our views and should have respect for one another.
I fully understand that I can do both but I have very deep research behind my thougths. I do however believe for most that alternative is not a choice as it is serious dedication. It requires more work that most people just can't do. I have taken this into consideration as well.
Sorry I am a bit frustrated that people do not think a bit before posting and making personal references. I have my thoughts too but have enough education and grace to not publically attack a person.
I did get a question regarding my NP and am worried regarding dicussing it since they are under attack. That is why most who do not chose the standard treatment do not talk about it or are selective in who they talk to. Just one post and I get it
Almost forgot my husband fully supports my decision and promotes it as well. He is begging to get on but I don't want him to offend anyone as his disagrees with things and isn't as worried about others as me...
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Ruth Heidrich was never diagnosed stage IV. She had "hotspots" show up on a scan. Lots of folks -- perhaps most folks -- who have had scans have hotspots, particularly athletes, which she was and is. My husband had lung nodules show up on a scan that were ultimately found not to be cancer. She never had those spots biopsied. She should not represent herself as having had stage IV bc when she was never staged at stage IV. I find the fact that she is going around telling people she cured herself of metastatic cancer, which she was never diagnosed with, through a vegan diet alone to be highly irresponsible and fraudulent.
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One more thing, Heidrich points to her marathons and ironmen competition as saving her from cancer. I get why she competes, I run marathons. But the evidence seems to be that beyond a point, endurance athletes actually increase their risk of cancer. The only reason to participate in this level of exercise (and I frequently post about the benefits of exercise) is because you love it, not to fight cancer because it could actually be counter-productive. Moderate exercise is great and very helpful.
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wornoutmom - I agree that giving medical advice/directives over the Internet is the height of irresponsibility. ESPECIALLY given that we are talking about a disease with no known cure and treatments that are fraught with their own dangers, not to mention the gazillions of stories of people who followed commonly advocated treatments and still died either of the original cancer or of the effects of treatment.
Cancer is the disease we should be the most humble about, and yet one finds such arrogance.
If you told me you had a cut on your finger, I would feel comfortable in telling to you put a bandage on. Other than that, frankly, all one can do is share research and experience. What you decide to do, within the sanctity of your own mind, values and family, is off-limits to reproach by strangers, IMO.
I admire your courage and tenacity in sharing your story and views and in continuing to post in this ultra-closed-minded, ultr-conservative environment. And I hope you continue to post. We need more voices like yours on BCO.
I did not choose an alternative approach for myself but my choices mirrored yours in the most important ways: they were in keeping with my medical history, my values and my research. That is all one can ask for.
In treating the disease with no known cure that is cancer, if one thing should be clear it is that no one has a monopoly on the truth.
Someone made a comment on this forum...I forget the details but the phrase "chemo evangelism" was used. I think there is certainly a "conventional treatment evangelism" on BCO that really leaves no room for other faiths.
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I was surprised to see this thread resurrected.
Wornoutmom ~ I just wanted to be one to support you in your treatment decision.
You appear to have done plenty of research. You know the medical community statistics, you are not making this decision blindly. I wish you nothing but good health and happiness in your future. ~ Susan
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I did see the term hot spots when it came to her bones but the word lesion was used in her lung. I called it stage 4 due to the spreading. I took her words so unless one of us was there in the DR office we can't really tell people what she had. And if the DR misdiagnosed the hot spots then that would only confirm that doctors make mistakes right??? So lets just say she had breast cancer and enough to lead to a mastecomy. If she had taken the chemo/rad treatments she would be hailed as a success right?? I just find it weird she is lashed out at for being a over 25 year survior and not having to go though all the side effects to boot. I commend any survior and am just appauld that someones success would lead to anger and judgement??????????
How about this girl she is just doint her own blog. chrisbeatcancer.com Stage 3 colon cancer since 2003.
My husbands aunt is 15+ and never had chemo or rad but had 4 lymph nodes taken out. If my mother in law is told she is cured after less than 7 than what does that make them? I just am so perplexed that if someone survivies without the standard treatment they are picked apart and if they use standard no such judgement is given it is just that they are a success and the treatment is given all the credit. Couldn't they have the same possiblility that they are just the lucky one? With all the close mindedness like this we will be kept from finding it out.
Just so sad they can't just celebrate being heathly
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I mentioned my onc said 40 out of 100 women with my diagnosis who had surgery and no other treatment were still alive and NED after 10 years. Not everyone needs chemo, radiation and/or hormone therapy. The problem is they don't know which ones. That even goes for Herceptin… not every HER2+ cancer will spread.
Do alternatives work. Some might work as well as some chemo/Als/tamox. (And we know that chemo/Als/tamox doesn't work all the time).
I think at this point wornoutmom is well aware of the stats. She does have an onc. Sharing your personal experiences is one thing. Telling her what to do is just not our place IMO.
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I don't know why you say I'm angry at Heidrich. I love the fact that she is still running marathons, I hope I will be at her age. I totally get her athleticism and her commitment. I just don't think she cured metastatic cancer with sprouts and running, I don't think she had metastatic cancer.
I think you came on these boards with your mind already made up. Many of us have pointed out the problems with your approach, including women who chose an alt route but would do chemo in your case. You're not open to hearing it and you are latching on to whatever you find on the internet. I understand and I don;t believe anyone here will say anything to make you abandon your fixed beliefs.
But I do feel some anger toward the women who are being "supportive" from their safe early stage perches. We are part of a sisterhood and we have some obligation to look out for each other. Maybe you see wornoutmom as an abstraction or maybe your gripes against doctors are so great you like to see someone "take them on." But would you be comfortable with the you-go-girl stuff if this was your sister? Your daughter? Would you tell your daughter with stage III her2+ bc that you would support her decision to forego treatment? Would you really? I know you're all on the internet, but this is a real person with three young children. She exists. If she were your daughter, what would you tell her?
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Wornoutmom. We have the same diagnosis. Same tumor size. Same nodes. Same stage.
Good luck to you. And to your family.
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IMO -----if she was my daughter-a young women with young children stage111,her+ I as a BC survivor who would not take chemo would tell her to take it.I did not need it but if i did i would not have taken it.im 70 yrs ol.big difference.I did the rads tho.nothing else.
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Member: Let it go. You made your own decisions and believe them to be the best ones and have no regrets. Nobody is questioning them, and they may well have been the right decisions.So Godspeed. Surely that's all that counts? I am beginning to wonder if you find questioning of conventional treatments frightening or if you work for the American Cancer Society or something. I don't understand the depth of your Messianic feeling otherwise. For I assume you to be intelligent and therefore, surely you know that many women with all of the conventional treatments die, so it isn't as though you are trying to save a life that will surely be lost. It isn't like that at all. This is a disease with no known cure, and stage, as you know, matters less in some instances than tumor grade and other characteristics.
I am not on an early stage "perch" or any "perch." I do not see wornoutmom as an abstraction nor as the chance to take on doctors, against whom I have nothing but good experiences with, especially since more than one has saved my life. I see wornoutmom as a very intelligent, articulate thinking human being who is facing a tough decision but has her emotions and priorities and who is perfectly capable of making her own decisions. I agree that we have the obligation to be there for each other, but that does not entail bossing around, arm twisting or acting as though we know more than they do. It means sharing, respecting and showing deference to.
Back off. Stop being so bossy. You will probably be ok, and it is my fervent hope that you never ever see cancer in your body again. We can't run other people's lives for them, though. Your treatments may well have worked and so far so good, right?
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Hi wornoutmum,
Just wondered if you did hear from anyone in the end that chose an alternative route or long term her2+ stage 3 survivors (5/10 years) who chose not to hv herceptin and also went the alternative route. The subject is of interest as I'm stage 4 and triple positive.
Hope your doing really well and hv received some valuable info that helped you with your long term health plan.
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Terminology clarification:
Hot spots: can be anything from brusing to arthritis to infection to mets.
Lesion: means a clump of cells: Tumor is the same thing.-both can be benign.
In med speak: neither of these terms is a diagnosis of mets or original cancer. And no absolute diagnosis of cancer can be made without biopsy. If someone finds a doc that says he can diagnose without bx, RUN, it simply is not a reliable diagnosis of mets or orignial cancer without a bx.
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i wanted to add to all the nfo here, that if you're worrying about an HMO and costs, plz factor in that (probably) your hmo won't cover a naturopath, or an integrative dr. which are VERY expensive.
mine is a difficult case, because i have immune problems bf bc/ as i had MS before having gotten bc. add to it, im higly allergic to most meds. it was a challenge. for me, i did very aggressive tx. as in a BDMX.. double masect. chemo in the form of A/C and taxotere. in my case, the first chemo made me very sick.. not the chemo itself, but the neulasta shot that has to be done 24 hrs after chemo. Having MS; it upset the applecart for me. it was life threatening, but in the end, i still got the help i needed immed., and they continued on, but titrated the doses.
thats' to say, the chemo went from being dense dose, to titrated very liberally...
remember, there were extenuating circumstances for me. But, in the end, i had a great team of Drs. who treated it all very well, and not only did i survive it all; but am nNED for almost two yrs now. i know for certain, having a pet scan 3xs in that amount of time.
always remember, each situation is different, and can be handled in amany different ways. after chemo, i failed all the anti estrogen stuff, and now use supplements to deal with the risks of reoccurence.
i was terrified of chemo, and its' side effects. i handled it all well, taxotere, which many ple react to, was titrated for me, so that although i did end up with some neuropathy, it was a slight price to pay to be sitting here writing this to you tonight, and free of the fear that was there in the beginning...
i wish you well with these most difficult choices.. take your time, do your research, and get as much info about the tx. they suggest BEFORE you agree to any of them.! be well. 3jays
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My GP sees quite a few women with breast cancer in her practice. She told me that it has been very frustrating for her to have had a number women chose to go the alternative route and forego conventional treatment. They did not end up doing so well. They did not survive. There is a place for alternative treatment, I just don't believe it can stand on its own. I did both. The alternative treatments helped me bounce back between the rounds of chemo.
If someone I cared about said they wanted to go the alternative route only, I would tell them straight out that I think that would be foolish. You are not treating a rash here, it is a life-threatening illness. There are no guarantees with conventional treatment, but it has a lot more research behind it than alternative treatments.
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Gutsy: Your GP is absolutely right, in my opinion: I have seen women choosing the alternative route, and ending up not doing well.
.....But in order to balance his/her opinion, I feel your GP should have added that there are also scores and scores and scores of women who did the whole conventional treatment and also did not end up doing well, either.
Athena's opinion looks very balanced and measured to me: facing a disease with no known cure (alternative or conventional), and which possible causes are subject to heated debate, isn't it true that the only right decision is the one you end up making for yourself (but only based on your own personal research, not JUST on "what *my* oncologist said")?
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iodine when I went for my biopsy I asked the radiologist what was going on. I kinda new from my BS behavior (he never said I had cancer and said he wasnt a radiologist. A radiologist needs to look at my images. Then started to talk about how breast cancer is treatable), what I felt/symptoms. He came right out and said "we are doing this biopsy to confirm our diagnosis of cancer. If this biopsy doesn't prove it (highly unlikely) then we will do a more invasive proceedure to prove it. Yes they still had to do the biopsy to confirm but they knew what they were looking at.0
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lago there is a huge difference between the image of a breast cancer on a mammogram or MRI and the "hotspots"in lungs or bones that Heidrich was referring to. You don't, generally, have previous injuries or infections or degenerative changes in your breasts that you do in your bones and lungs. When they see a spiculated mass in your breast, that is highly likely to be malignant (though not always. I had one of those and it was benign). But a hot spot on your leg means nothing at all until biopsied and tons and tons of people have nodules in their lungs that they never know about until some kind of imaging picks it up (my husband is one of those). So your experience with your breast cancer doesn't really apply to Heidrich.
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I will chime in here regarding biopsy....I have a maginifcent BS who was convinced my biopsy would turn out to be beneign. So much in fact that immiediately prior to my biopsy she scheduled yet another mammo to confirm a need for the biopsy as she did not want more invasive procedures unless neccessary. The radiologist came in wiating room while I was waiting for results and I asked if I needed a biopsy...he said ABSOLUTELY three times and said come with me. It freaked me out but in retrospect I appreciate the caution in the process. These were not evil people who are a part of a machine wanting to destroy me with modern medicine. These were talented professionals who were obviously bummed out when it became obvious that the had to go in for the needle-core biopsy. Saying that during the process the radiologist must have had a spark of hope that he could remove the bad cells in question and perhaps they would prove to be benign calfcifications...as time went on , I knew by his expression and determination-it seemed he grew angrier as the biopsy went on...that it would prove to be BC. He was as p*ssed as I was scared. When I went to BC a day and a half later, of course she confirmed it. SHe was also magnificent, both professional and dismayed-a display of knowledge and compassion that I am grateful for. Along with her manner of accepting my immediate choice for a BMX despite the fact of a 5mm tumor. I think that while there are a number of old school closed mined medical folks out there suffering from a god complex, the bulk want us to LIVE and live WELL. It is not their fault that there is just a limit to where medicine is on any given day. My first part of my BC treatment was the easiest decision, the rest has been a series of trials and errors. And I must play a song of caution in my head while I make these most personal decisions for although my BC was very early, it was cancer. In my body. Mutated cells. And above all, I want to keep any other cells from *turning* on. My hot spots that showed from Ct scans were all deemed beneign yet I am considering a PET scan at my followup onco visit just to take a another look and make sure they have not changed in some manner. While the tools we have are imperfect across the board, they are what they are. And ultimately us to us how we proceed. Even with my more antural route using organic aromatase inhibtors, I so wish I could have used the ones prescribed- would have been a hell of a lot easier to take one pill versus the dozen. And nobody should veer forget that natural anything is still a medicine not to be treated lightly. We can screw ourselves with them as well. I am fortunate enough to enjoy the constant monitoring and recording of my responses to it, but even with that, it is not easy thing to achieve the right balance. Which is why I tried the AI - for many it has worked without damage beyond control. My regimine has SEs too...ones i can live with...but SEs regardless. Since it is medicine. I am not as pissed at the oncs who told me the SEs would show me it was working...since along with my bood tests, my SEs comfort me to a degrees. No, nobody can or should demand of anyone what to do nor chastise another for their choices. I am going to assume any negativity comes from a place of fear that we all have with this friggin BC. None of us can be absolutely *right*. Any more than we can absolutely be *wrong*. For if the treatment chosen helps one phsyical state and destroys their mental state then it offsets to a varying degree the success. If we have to shout that we are right on whatever side of the fence we sit, beyond helping anyone else it is to underscore that our own choices were right. That is human nature. Integrative medicine is the smartest medicine as I see it. MY OPINION. My choices have inflamed and appeased a varying amount of people, in the medical profession, on here, with my family and friends and coworkers. Good, it gets everyone thinking including myself. There are those who are conservative in regards to mastectomies who were freaked that I chose without question the surgical equivalent of an cutting down the forest to save a tree...tree being me. On the other hand, some of those same people who were so freaked at my "attacking my chest" in so radical a manner think nothing of taking a pills (s) tht bring them to their figurative and actual knees. But I am glad for the suggestions and input no matter what my personal thoughts are for in the end, it is up to me. One woman's cure can be another's poison-no matter if traditional or natural. I wish nothing but health for everyone, no matter how they choose to get there, just get there.
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wornoutmom, sorry to hear that your doctor won't help you get a CTC test. The quote below is from Medscape:
Dr. Ellisen predicted that the biggest effect of CTC measurement will be in early breast cancer. His team is conducting several trials in this patient population to see whether the number of CTCs, or changes in CTCs in the same patient, can be correlated with the likelihood of relapse.
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Dr. Leif Ellisen is in Massachussetts General Hospital. Are you anywhere near there?
Anyway, the article also stated that even if you had 0 circulating tumor cells in your blood, you could still have micrometastases in your bone marrow or other organs (disseminated tumor cells, DTCs). I think it would still be good to find out about CTCs. Tell your doctor about the MGH study. Maybe this will convince her to let you have the test.
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Here is an article from Bloomberg about another test.
Genomic Health Inc. (GHDX), maker of a gene test that helps identify which breast cancer patients will benefit from chemotherapy, said using the technology changed treatment choices 33 percent of the time in European studies.
Chemotherapy was used 17 percent less often in Germany and 14 percent less often in the U.K. when breast cancer patients were given the test before their doctors made decisions about how to treat them, the Redwood City, California-based company said in a statement. The findings were presented at the St. Gallen International Breast Cancer Conference in St. Gallen, Switzerland.
The blood test examines 21 different genes in tissue samples taken from a woman’s breast tumor to assess her chances of being helped by chemotherapy and her odds of having a recurrence. Genomic Health is conducting studies to support coverage of the test’s use by medical insurers and government health programs.
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heidi- that is the ONCOtype DX test they are talking about which fortunately is being covered by more and more insurance companies in cases where the cancer is ER+ PR+ does not apply to HER+/-
They even have a program for those who do not have coverage that helps with the cost. They see it as beneficial to them for the research as they evolve this and future tests for other kinds of forecasting within BC and other cancers. Very cool stuff.
My results told me I did not need chemo and then helped me to decide to take my chances without the typical AIs after failure and try the naturals. My ONCO score was 6- very low but with AIs illustrated a recurrence rate of 5% that goes up to 10% without AIs- according to the test. The odds I am playing that my natural regimen mimics what the AIs do-most likely putting me somewhere in the middle of that. Genomic Health is a pretty good company-they spend a lot of $ for research and they kept it inhouse. Not infallible I am sure for it all comes down to averages and supposition but a better indicator than what the old ways dictated for everybody to receive things they possibly did not need.
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annettek... what did you choose to use as your alternative to the AIs?
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well, to jump in with both feet:
wornout mom mentions how pursuing alternative medicine is "more work than most people just can't do."
trust me: chemotherapy, radiation, and the like are hard work. take it from someone who did it all. or you could ask my 12 year old, who would come home and make dinner and help her 9year old brother with homework on the worst of the A/C days.
that being said: i regret none of it.two children = worth it.
i can say, as someone who blended alternative into the traditional, that many women cannot afford the former. what i spend on supplements and naturopathic consults would feed a family for a week.how many Medicaid recipients could do this? does Medicaid even cover alternative med?
some ladies here need to wake up. the world isn't made up of wealthy (usually white) women who have the time and money to pursue this kind of stuff. be grateful you even have the option!
wornout: respect is a 2 way street. spurn traditional medicine if you wish, but do not assume you know the road of others who chose differently.
and as regards the phrase "serious dedication" - oh please. that idea has nothing to do with the treatment choice. humans want to live. period.
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Elm City- what a post from the heart (clapping here).
Star Beauty- Please keep in mind that my BC was very early stage and low grade - please consider that, please. My choices might have been very different had those factors been different. I cannot stress that enough. BC is a tricky little beast that we are fighting.
I take DIM, Grapeseed Extract activin, COQ10, FIsh oil, Tumeric, D3 and now have to go get a good general vitamin. The COQ10, FIsh Oil and D3 seem to be good for all women, no matter what is going on with them.
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