Pros and cons between scientific and natural remedies
Can anyone recommend a site where one can read the pros and cons between scientific and natural remedies after a cancerous lump (Stage 3 tumour with no nodal metastasis and at the time was triple-NEGATIVE) has been removed from a ladies breast ?
My wife (who does not work nor use a computer) is a strong believer in taking natural action since the operation, and I fully support her, but I would like to read together with her any comparisons that people have made to help make it clearer for her to be confident in her choice.
Comments
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Hi Adrian,
I'm so sorry you've found a need to come here, but what a loving husband you are! I also had triple negative, which is a scary thing indeed. There is some good news, though, in that chemo is especially effective for TN, since chemo acts on rapidly-dividing cells, which are the nature of triple negative. There is a lot of current research going on for triple negative, so we remain hopeful.
Do you have more information about her particular information and treatment recommendations? There's a TON of info on this site about a huge variety of topics, including both integrative and conventional medicine, and the vast majority of us choose an approach that includes elements of both.
If you have specific questions, ask away. Otherwise, you could just search or browse some of the topics already discussed. The conventional vs alternative debate can get heated at times, but in the end it's an individual choice and you'll find support here no matter what.
A word of caution, however - please be sure to look for credible sources in your research, and confirm what you find with multiple sources. Be especially wary of advice you receive via private messages - valid and credible information should be able to stand the scrutiny of being posted in public. I started a thread a while back regarding looking for credible resources, and I'll bump it up to help you get started.
Welcome to the club, and please feel free to ask lots of questions and make yourself at home! Best wishes to you and your wife. When I was diagnosed, I was told to expect at least a full year of "Breast Cancer Life," and it was true. You can get through this together, and you'll be surprised at the strength you both will be able to summon. Best to you!
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I'm wondering if you can reach out to a poster who sometimes posts here named Timothy. he is extremely knowledgable about alt treatments and conventional treatments and is also the husband of a bc patient.
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Right above is excellent advice from Member. For whoever's looking for credible sources of information, Timothy, a regular on this forum, would be the one to turn to.....
Using Timothy's information to complement all the excellent information that one can find here woud be a really wise choice, I think.....
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MJLToday: I seem to like this Respectful Insolence article that's in the thread you just posted. I appreciate respectufl Insolence in general, anyway.
Can you tell us more about the author of the article (as I never came across this website before)? Who is [stage name] Orac? Has he presented himself somewhere else as a professional researcher or scientist? I am just being curious.
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where are the alternative camp here?it seems the conventional camp has already jumped on poor Adrian..
anyways, if Adrian just would like to hear from the conventional camp.. then I will just read through here..everything that I have already read from other posts as well as from other conventional internet sites and everything I have already heard from conventional doctors..
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"it seems the conventional camp has already jumped on poor Adrian.."
HUH????? I must have missed something, as I don't see anything at all posted here that could even remotely be misconstrued as "jumping on poor Adrian."
I'm hoping Adrian will come back and feel comfortable here and well supported during this difficult time, and I hope this thread won't turn into another us-versus-them thing. That's not what this is about, Nanay. Do you have a helpful reply for his question?
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What are you talking about nanay? Seriously, everyone here has been supportive. You have a serious chip on your shoulder that you really need to unload. No one attacked anyone in this thread until you did.
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Integrative believer here. If natural living alone prevented or cured breast cancer, I should never have gotten it in the first place -- except maybe for genetics & HRT. However, IMO, conventional medicine is often way oversold (as are alternative protocols) and the SEs can be far more devastating.
Adrian, as you probably realize, triple negative breast cancer can be especially aggressive, and most of us agree that hitting any bc hard the first time is best. I have seen some sad stories here from women who opted for lighter tx or even skipped recommended tx and regretted it. OTOH, those who pursue only alternatives rarely hang around here to report their outcomes,. Also, many only try alternatives when conventional medicine has nothing left to offer them, which only tells us that there probably is no miracle cure once bc metastisizes.
I personally believe there's a place for both conventional & CAM, and that the key is to find top notch practitioners who understand them both and know when an alternative protocol can be a benefit, and when it's foolish not to use the big guns that chemo & RT offer.
Here's a website that might interest you & your wife: http://www.integrativeonc.org/ Deanna
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Hi there Adrian,
I researched the alternative methods like crazy when I was diagnosed - I spent a zillion hours on the Internet! I was totally psyched to hear about juicing, for example - all I could think was, "How much juice are we talking about? 'Cause I'll drink the HELL out of some juice!"
Unfortunately, I could find lots of various methods, but what I had trouble finding was a lot of success stories. I couldn't find any blogs or survivor stories from people at my stage with my diagnosis (Stage 2B with ILC and IDC) who had successfully pursues alt methods. The only ones who just did surgery and were successful were the Stage 1 ladies with a nice, slow-growing, well-behaved tumor. I am not saying those successful Stage 2 and Stage 3 ladies aren't out there - I just couldn't find them. And that, in the end, was enough for me.
So I am doing the conventional treatment with a TON of integrative stuff thrown in. Literally - you name it, I'm probably doing it. I have had an amazing response to chemo - my tumor is almost gone and my two nodes now feel completely clear (one was a palpable lump.) Plus, I had great energy the whole time, lost 10 pounds because my diet RULES, no neuropathy/nausea/taste change, and my hair is already growing back. (Just finished DD ACT last week.)
Feelings regarding alt/int vs conventional treatment run VERY high on the this board - I think because we all know what a mistake will cost us. Try not to take it personally if there is a brawl at some point. I am sure that you will do your research regarding methods, but also try to take into account the survivors of Stage 3 TN breast cancer who only did surgery. If you can't find any, then consider that fact as well.
Be well!
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Deanna:
I wonder if the "big guns" would be able to make a difference in a tumor that is really aggressive? We all have in mind those 1 cm HER+ tumors that appear to be unstoppable, while some HUGE tumors sometimes don't even bother getting into the nodes................
This tells me that we need much more research to try and determine which cancer is likely to "advance", and which one is unlikely to become dangerous.
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Yazmin - Here is a link to more info about Orac. He is a cancer surgeon/scientist.
Cynthia
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I do not know how to begin to explain but after having the time of our lives for the past 14 years my wife and I are/were/are finally ready to settle down and have a child.
So my next question is what do people think about a woman of 35 having her first child after having the tumor removed but no RT or Chemotherapy ?
Can the change in her body due to becoming a mother help to fight off the risk of further cancer ?
I assume this will sound very naive to most of you, but as this has never happened to us, and if we knew the right answer we would not be asking for opinions. -
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Adrian, you should also post your question in the section for young women with breast cancer. I know that fertility issues receive a lot of discussion there.
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"Integrative believer here. If natural living alone prevented or cured breast cancer, I should never have gotten it in the first place -- except maybe for genetics & HRT. However, IMO, conventional medicine is often way oversold (as are alternative protocols) and the SEs can be far more devastating."
Really well put! Timothy is AWESOME, please look for him. Very well educated, I learn so much from him.
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Thanks for this information, Cynthia.
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Yes, Timothy is awesome. The other extremely well informed poster I can think of is BEESIE. I just don't know if she has ever posted anything about fertility. However, she is a researcher, and she REALLY knows her stuff. Her posts are also fair and well-balanced.
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Edited after I reread the OP and saw she is Stage 3, triple negative.
Hi Adrian,
I was in a very similar position when I was diagnosed last year at age 35. My doctors (at a top cancer center in the U.S.) insinuated that it would be a very bad idea for me NOT to do the recommended treatments (for me chemotherapy and tamoxifen for 5 (!) years).
I don't have the data at my fingertips, but I believe that studies show that women who become pregnant very soon after a cancer diagnosis do not do as well as those who wait awhile. Not sure why this is...perhaps because the mother's physical resources are going toward the baby instead of towards fighting the cancer.
I know that this must be a devastating blow to you and your wife, as it was to me.
As a Stage 3, triple negative, your wife does not have to worry about pregnancy hormones affecting her cancer, however, she probably does have a fairly high recurrence risk, which is something to think about before going forward with having a child. I believe the highest risk is for the first 2 or 3 years after treatments, so some doctors recommend waiting that long to make sure the cancer does not spread.
Many women do go on to have children after breast cancer and do just fine. I hope with all my heart this is the case for you (and me!)
Best of luck to you both!
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As a triple positive at dx at age 51 ten years ago (and who knows what I am now), I have not personally had to deal with the difficult choices that an under-40 triple negative deals with. So... I am on the fence in their behalf in regard to chemotherapy.
But why should anyone believe that chemo is the "best option" for them? Every time I see a post from those who believe chemo is the best option for those people, it is backed up by the same tired old story, that they have "known" some patients who were triple negative who either didn't do chemo, or did alternative treatment instead, and sadly, died. Given that I also see just as many triple negatives who did chemo and sadly, died anyway, in addition to going through the many, many disadvantages of chemotherapy treatment, just how meaningful is the "personal story about a triple negative" in terms of truth about treatment options?
Scientifically speaking, just why is it that anyone who is young and triple negative should be convinced that chemo is the "best option" ?
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Hi AlaskaAngel (love your state!),
I agree that no one should base their treatment decision on anecdotes (stories about those who survived/those who died.)
Studies of very large populations of breast cancer patients have found that a higher percentage of those who do chemo survive, compared with those who don't do chemo. This is *especially* true for patients who are younger or are hormone negative.
Of course, we all lack crystal balls/fortune-telling abilities, so no one knows specifically which patients will be saved by chemo and which will get no benefit. However, if a person wants to have at least the possibility of being saved by chemo, they have to do the chemo.
For someone like Adrian's wife, who is 35, triple negative, and Stage 3 -- if you had 100 women like that, and none did chemo after surgery, only 40 would be alive 10 years later. However, if those 100 women did chemo, then 66 would be alive in 10 years. So 26 of those 100 would have had their lives saved by chemo. This is what scientific studies of tens of thousands of women have shown.
Their results are incorporated into prognostic calculators like Adjuvant Online. If you're interested in reading a deeper study about how chemo affects breast cancer patients, I can PM it to you. Or post it here, once I locate it again.
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I would like to add iodine to my regimen. However, I have been taking Arimidex for the
past 4 years. Is anyone taking both Arimidex and iodine? Thanks for your help. -
Hi Adrian,
I don't have specific advice on the fertility issues, but I know it's a common concern especially for us triple negatives since TN is more common in younger patients.
I know you're considering no chemo and rads, and if that's what your wife ultimately chooses, she'll have our support. Please do your research, though, and make sure you understand the options along with the risks and benefits of each. Be sure to get an understanding of the unique characteristics of triple negative pathology and the special considerations for young patients, as well as the specifics of your wife's individual factors including other medical issues, risk tolerance, personal preferences, general health status, etc.
At risk of sounding like a "chemo pusher," I do want to mention that unlike the other cancer types who have extra options, we TNs basically have three options - surgery, chemo, and radiation if indicated. TN is a particularly aggressive and sneaky subtype, and to be honest - you only get one chance. TN is a significantly higher risk of recurrence, and if it does recur it is stage IV and considered terminal, so it's important to understand the risk of "waiting and monitoring." At this point, there are no alternative therapies with enough data to convince me to forego conventional therapy. I personally chose all conventional therapies available to me, along with integrative things that may help support my body/mind in the difficult battle. Look for facts and data and never rely on testimonials alone. Look into all the options and take what makes sense for you and your wife.
There's a lot to understand, and I think we can all sympathize with the overwhelming burden of it all! Please stick with us and ask anything you want - nothing is too naive to ask here. A lot of us started out this journey with no experience with breast cancer and had no idea where to start.
Here's a link to a useful brochure specifically on TNBC (triple negative breast cancer). You might also want to check out www.tnbcfoundation.org, and there's a site specifically for younger patients - I can't think of it now , but someone here will know.
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I don't want to spend time on the boards poking holes in people's arguments, but I guess what I don't understand is why people wholly eschew the statistics put forth by studies on traditional treatments.
To back up what Beeb said, I know some folks feel it is not as clear-cut as the oncologists would like us to believe. I'm sure that is true, I'm not inclined to believe the whole thing is a sham, either. I've never seen an article suggesting cancermath.net or adjuvant are entirely falsehood. I am totally open-minded, and would love to hear more if anyone has studies pointing to other interpretations.
The other thing I find interesting is, vitamin C in megadoses or mistletoe or milk thistle are natural. So is Taxotere, a derivitive of the yew tree. Anything strong enough to fight cancer becomes a medicine.
The other thing urgent to point out, if you read up on this, many studies indicate the group that benefits most from chemotherapy are the under 40 set. That was me at time of diagnosis, please don't hesitate to ask questions. I'm always open to people about my journey.
One more urgent issue, I share this because I was ignorant until I asked further. What the traditional treatments try to do is avoid a fatal recurrence. So the issue is, there is a chance the cancer could return, at which point, it is pallative, rather than curing care. Frankly, when I understood that fully, (I have around a 16% chance of that in 10) I decided on the traditional treatment route. I questioned radiation all the way through, there are many concerns about overall survival statistics, which tend to skew the truth about allopathic medicine.
I worked with both naturopathic and allopathic treatments.
The best advice I have for databases is work with an academic. My father and I have access to medical databases that are on subscription through libraries and universities. Also, don't hesitate to ask your doctors directly for the studies. This is part of their job!
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Can anyone recommend a site where one can read the pros and cons between scientific and natural remedies after a cancerous lump (Stage 3 tumour with no nodal metastasis and at the time was triple-NEGATIVE) has been removed from a ladies breast ?
My wife (who does not work nor use a computer) is a strong believer in taking natural action since the operation, and I fully support her, but I would like to read together with her any comparisons that people have made to help make it clearer for her to be confident in her choice.
Conventional therapies have far better detailed evidence of their efficacy and side effects. This fortunately or unfortunately leaves us with stark detail of both the effectiveness, failure rate and side effects, both serious and minor, temporary and long term. As well, there is even a reluctance to acknowledge openly all of the reported side effects, like cognitive issues ("chemo brain") or long term fatigue. The more we know, the more we become aware of the shortcomings and tend to dwell on them. Alternative and complementary therapies tend to be less well studied, typically drawing upon appeals based on anecdotes, theory, in vitro or animal studies, or small scale clinical observations. So as a result we are left with less knowledge of success and failure rates, and even side effects. I guess what I'm trying to get at is that you will not find a clear cut way to compare on common ground, the conventional therapies with the alternative and complementary. As well, given the above, it is easy to form strong opinions both for and against convention medicine, as we know it best.
I would urge you do as others have suggested, and make your best evaluation of the prognosis of your wife's cancer diagnosis, and look over the benefits of conventional treatment as set out in adjuvant online and cancermath. Get some hard figures on survival rates both without further treatment and with convention therapies as a starting point. In evaluating the side effects of conventional treatment, bear in mind that no one can say how your wife will tolerate it. Her side effects might be average, better or worse. Not everyone reacts the same way.
After that, my thoughts are to look at complementary therapies, with an eye towards 1) strength of evidence of benefit 2) absence of harm or interference with other therapies. There are many good resources, such as Memorial Sloan Kettering's about herbs, American Cancer Society, and many privately run web resources such as Breast Cancer Alternatives, this site and Evidence Watch, by Constantine Kanaklidis. I see Evidence Watch has greatly expanded his site, and now includes topics pertaining to natural, complementary therapeutics. He has a good page about triple negative BC, and three myths pertaining to TN.
Also consider enrolling in a clinical trial. Aside from the benefit of possibly receiving a superior therapeutic agent that isn't yet available to others, your wife my receive better treatment, evaluation and follow up. At the very least, it is a contribution to others who may also benefit if it is a success. My wife has enrolled in a trial of bisphosphonates that lasts 3 years.
My wife having had a diagnosis of stage 3, ER+, PR+ breast cancer, my reading has mostly focused on treatments pertaining to her particular type of disease. My wife has chosen to do both conventional treatment: surgery, radiation, chemotherapy and ongoing endocrine therapy, along with complementary treatments that hold out promise of reducing chemotherapies side effects, and reducing recurrence. My wife found the worst of chemo not to be the old problems of nausea, that was well managed by today's drugs, but instead neuropathy causing acute pain and issues of long term fatigue.
I wish you two the best, and keep asking questions. I'm sorry I don't have the clear answers you are looking for.
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I get most of my medical information from pubmed.gov. It's a website from the U.S. National Library of Medicine and the NIH. It references over 20 million medical studies.
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adrian
read this article
http://www.foxnews.com/story/0,2933,153964,00.html
although this research was done from a preventive angle (prevention of primary breast cancer)--and they are pertaining to early pregnancy rather than pregnancy at 35,,,
its good to know that the pregnancy hormone they call HCG helps in activating tumour suppresor genes..and a pregnancy protein they call AFP (produced by the liver and yolk sac of a fetus) was defined as a natural defense system for breast cancer).
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So almost 6 months have passed since the operation and my wife has decided not to go for the RT or CT. She has check ups at the hospital every 4 weeks to look for signs of cancer in the blood, urine and stool sample and so far nothing has been discovered. She is asking me to pose the following question again so I will repeat the important info for all to fully understand the question:
We know we will receive a wide range of reactions and this is what my wife and I are interested to read, so our question is... Do people believe that pregnancy increases or decreases the possibility of a secondary malignancy 6 months after the removal of a triple negative tumor of 2.5cm with clear margins and clear nones ?
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I'm not sure that asking strangers on a website what they believe will get you the most accurate information. Have you asked her doctors? I suspect that a pregnancy at this point would be risky, but i don't know.
I am also curious as to why her blood, urine and stool are being checked for signs of cancer since none of these tests would pick up breast cancer metastasis. Possibly a tumor marker test (so a blood test) would indicate something, though it is unreliable. I don't know what you get from her urine and stool. Since she was diagnosed at a fairly advanced stage, i would think imaging would be the only way to really detect mets, and you certainly don't want to do that every 4 weeks.
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Hi Adrian,
This site addresses the question here:
http://www.breastcancer.org/symptoms/diagnosis/ask_expert/2008_07/question_19.jsp
My understanding is that pregnancy would NOT increase or decrease the risk of triple negative breast cancer recurrence or progression. However, IF recurrence or progression was going to happen (with or without pregnancy) it would most likely happen within 2 or 3 years of the initial diagnosis. At that point, the woman would be in a fight for her life. The cancer would no longer be considered curable, and it would just be a question of how long treatments could extend her life. And the treatments would be difficult and debilitating, and it would be a challenge to be a mother of a young baby/child. (But women do it.)
Triple negative is considered a more aggressive subtype of breast cancer, and more likely to recur, and harder to control if it does recur. With that size tumor and no nodes and no chemotherapy, studies show that your wife would have about a 30 percent chance of having the cancer spread and become terminal within the next decade. Because she didn't have radiation after her lumpectomy, she also has a 30 percent chance of an isolated local recurrence (the cancer growing again in her breast -- which could be dealt with surgically and with radiation and chemo if she chose it.) So together, that's a 60 percent chance that she will be dealing with cancer again at some point during the next decade -- but only a 30 percent chance that it would threaten her life.
IF she got pregnant and did recur metastatically, she would most likely not live to see her child grow up beyond a few years. I think that is really the issue here. If that's a possibility you and she can embrace and plan for...I would say go ahead and have a baby when you want to. But that is just my opinion, and as someone who also would like to have a child after my treatment, I understand that desire can trump the desire for the maximum years of life.
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