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Topic: Using alternative medicine - linked to lower survival rate

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Aug 15, 2017 11:48AM

cp418 wrote:

https://www.sciencedaily.com/releases/2017/08/1708...

Using alternative medicine only for cancer linked to lower survival rate

Patients who choose to receive alternative therapy as treatment for curable cancers instead of conventional cancer treatment have a higher risk of death, according to researchers.

Patients who choose to receive alternative therapy as treatment for curable cancers instead of conventional cancer treatment have a higher risk of death, according to researchers from the Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center at Yale School of Medicine and Yale Cancer Center. The findings were reported online by the Journal of the National Cancer Institute.


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Aug 15, 2017 12:55PM pupmom wrote:

Makes sense to me. Thanks for posting.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 15, 2017 03:05PM Momine wrote:

Well, that would be a given, I would think.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 15, 2017 05:49PM Momto8 wrote:

I'm having great success with alternative treatment with low dose IPT therapy! No surgery, no radiation and no evidence of original disease.

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Aug 15, 2017 08:35PM - edited Aug 15, 2017 08:36PM by pupmom

Momto8, what's your diagnosis, beyond having bc? That makes a LOT of difference, and you have not included it in your profile.

Edit: Actually I don't even know if you ever had breast cancer! Can you please clarify?

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 16, 2017 03:35AM Momine wrote:

Momto8, IPT is still chemo, even if it is a yet unproved way to use chemo.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 16, 2017 07:54AM dtad wrote:

Hi everyone..IMO the study is vague and over generalized. It doesn't state what cancers and what alternative medicine. It seems like a no brainer that if the question is presented that way the conclusion would be that way

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 16, 2017 08:19AM Momine wrote:

Dtad, fair point. However, are you aware of any particular cancers that are known to respond to alternative treatments?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 16, 2017 09:35AM pupmom wrote:

I think those cancers arise from psychosomatic illness.

http://www.telegraph.co.uk/news/health/11635758/Ps

The mind is a powerful thing!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 16, 2017 12:22PM - edited Sep 14, 2017 11:45AM by BarredOwl

Re: ". . . the study is vague and over generalized. It doesn't state what cancers . . ."

The feature posted by cp418 linked to the underlying abstract ("Journal Reference"), which does state what type of cancers were included:

"We identified 281 patients with nonmetastatic breast, prostate, lung, or colorectal cancer who chose [alternative medicine] AM, administered as sole anticancer treatment among patients who did not receive conventional cancer treatment (CCT), defined as chemotherapy, radiotherapy, surgery, and/or hormone therapy."

The specific alternative therapies relied upon do not appear to have been recorded in the database.

I was able to access the full-text of the article here.

[Edit: Link to main page with free pdf: https://academic.oup.com/jnci/article/110/1/djx145/4064136/Use-of-Alternative-Medicine-for-Cancer-and-Its]

"It is important to note that complementary and integrative medicine are not the same as AM as defined in our study (13)."

There are limitations to retrospective, observational studies, yet other designs are not feasible due to ethical constraints. Regarding non-metastatic breast cancer, they concluded:

"Patients who initially chose AM for treatment of curable cancer in lieu of CCT were rare and had statistically significantly worse survival. After controlling for sociodemographic and clinical factors, the magnitude of difference was largest for breast cancer because women who used AM as initial treatment without CCT had more than a fivefold increased risk of death."

Additional studies are cited in the bibliography.

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Aug 17, 2017 02:13AM Momine wrote:

Pupmom, what do you mean by that? Which cancers and what kind of psychosomatic illness?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 17, 2017 08:17AM pupmom wrote:

Momine, I meant those who suffer from hypochondria and/or Munchausen's Syndrome.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 17, 2017 09:30AM dtad wrote:

Barredowl...thanks for the clarification. Apparently I didn't read the whole thing. My bad!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 17, 2017 12:54PM Momine wrote:

Pupmom, I am just trying to understand, do you believe that cancer is caused by hypochondria/Munchhausen?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 17, 2017 02:09PM pupmom wrote:

No, Momine, I don't believe that. I was just implying that some people wrongly believe they have cancer because of psychological disorders.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 17, 2017 05:58PM MTwoman wrote:

and then those people (who pupmom mentions above) get "cured" by these alternative (only) treatments

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Aug 17, 2017 06:18PM pupmom wrote:

MTwoman, you nailed it.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 17, 2017 08:36PM Kicks wrote:

Well said pupmom and MTwoman.

It also needs to be remembered that in addition to those with mental issues, there are also those who have agendas to promote their theories financially. Anyone else remember the Laetril scandals back in the '60's and those who were harmed? I do unfortunately.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Aug 18, 2017 01:02AM - edited Aug 18, 2017 02:19AM by Momine

Pupmom, ok, thanks, I was confused :) Another thing I have come across several times is a patient, who has actually received standard medical treatment, at least in part, but ascribes his/her health to XYZ alternative therapy. Chris Wark of "Chris Beat cancer" is a good example of this. Similar is the patient who goes on about how she either "refused" chemo or how she chose to do XYZ alternative instead of chemo. Then when you drill down a bit, it turns out the patient was never a candidate for chemo in the first place.

That said, I think there is a lot of room for evolving the use of existing medications, like, for example, the IPT therapy mentioned further up. I also saw a thing recently that using COX-2 inhibitors and a beta blocker in connection with BC surgery may lower mets risk.

We do have a couple of brave souls here, who have gone completely alternative and are doing well. I would love for doctors to investigate such cases more carefully, because there could be some important insights to be gained.

And, finally, we need that cure, preferable one that does not involve crippling treatment.


Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 18, 2017 07:54AM pupmom wrote:

No problem, Momine. I was trying to be cryptic, but went too far with that, lol.

In medicine, a thing exists called spontaneous remission, whereby people get better for no known reason. It's obviously very rare, but cases do exist.

As you said what we really must have is a cure.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 18, 2017 12:39PM - edited Aug 18, 2017 12:47PM by MTwoman

Right. When you are doing a study that is based in scientific methods, you can't just study the people who indicate that they did really well on an alternative therapy. You could do a case study on them, to relate that info, make hypotheses based on differences you find in that person and test them out.

But an actual study, that advances knowledge about which treatments work for whom and that is generalizable, requires rigor. Random sampling (not those that already benefitted), prospective study (not after the fact), carefully constructed methods that narrowly focus on the identified intervention, taking into consideration confounding factors and blinding (double blinding is best, when no one knows which 'arm' receives what) are part of appropriate scientific method. Parts of that get harder with a disease like bc, as you don't want to provide an intervention (to study/test) that may be less effective than the standard of care and then randomly assign someone to that test arm.

(edited for spelling)

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Aug 18, 2017 12:44PM pupmom wrote:

MTwoman, wish I could "like" your post! ThumbsUp

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Aug 18, 2017 12:46PM MTwoman wrote:

Heart

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Aug 18, 2017 01:57PM ChiSandy wrote:

What BarredOwl said—ThumbsUp I just read that same study, as it came in my inbox via DG Cardiology Alerts (my DH signed up using my e-mail addy because he hadn’t started using e-mail yet).

Pupmom, ailments (and symptoms) that turn out to be psychosomatic are those related to the nervous and cardiovascular system. Three mechanisms are at play—inflammation and the release of cortisol and vagus nerve response, either separately or intertwined; both these mechanisms are heavily influenced by physical and emotional stress. Irritable bowel, GERD in a patient w/o hiatal hernia, panic attack (can mimic esophagitis, gallstone pain and even heart attack); headache not caused by infection, allergy, injury, tumor or anatomical defect; cardiac arrhythmia; asthma attacks (in a diagnosed individual); neuromuscular symptoms that mimic those of actual organic NM diseases like MS, MG, even ALS or Parkinson’s. Stress induces cortisol release—which in turn causes release of both adrenaline (the “fight-or-flight” hormone essential for primitive humans’ survival during physical danger) and inflammatory cytokines. Inflammatory cytokines might even cause a hitherto sessile arteriosclerotic plaque to become friable, break off, and cause an ischemic MI or stroke. They are useful, however, in fighting infection (which action is part of the immune response).

Some oncologists (and nutritionists at cancer centers) have posited that inflammatory cytokines—while useful during chemo or rads, the object of which is tissue damage—result in oxidative damage due to free radicals; and therefore lower the body’s ability to rebound after completing active adjuvant therapy, resist infection, tolerate helpful medications; and might even make a patient more susceptible to recurrence—not because of changes to the tumor cells but the weakening of the “host,” aka the body. But even they acknowledge there is no evidence that cytokines have any effect on existing tumor cell proliferation, nor genetic mutation in normal or cancer cells.

And MTWoman, you nailed it: it is considered medically unethical to knowingly assign a patient to a known-ineffective treatment arm in a study regarding a life-altering-or-threatening disease without full disclosure to and consent from that patient; and once that patient knows what they’re receiving, that might influence their perception and thus reporting of their symptoms.

(There is a phenomenon known as the “no-cebo effect:” when a patient knows—whether or not in a study—they are receiving a drug with known side effects, they may report experiencing some of those side effects even when there is no physiological evidence upon examination & testing. This happens most often in the case of statins—many patients ascribe muscle pain to the rare but deadly rhabdomyolysis that statins can cause, but blood tests and muscle biopsy reveal no damage whatsoever; the muscle pain is often psychosomatic or due to pre-existing physical “de-conditioned” status).

That’s why double-blind prospective studies of alternative medicine alone vs. complementary medicine vs. conventional treatment alone are unconscionable and impossible. So all reliable evidence that is available is either epidemiological or otherwise retrospective (and to some extent statistical).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 19, 2017 01:50AM Momine wrote:

MTwoman, all true. However, with such a huge (unfortunately) patient population as we have in BC, I do think some unconventional investigations (not studies in the classic, medical sense) might yield some useful insights. Susan Love's foundation, for example, is trying to do something along these lines, however imperfect the approach may be.

I would also, for example, be really interested in a detailed follow-up study of specific BC groups, meaning patients who have received standard of care. We still don't understand how it is that someone with a 3C DX manages to truck on for a full lifespan sometimes, nor why someone with a 1A DX suddenly presents with mets 8 years out.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 19, 2017 12:51PM - edited Aug 19, 2017 12:52PM by Heidihill

Genomic signatures might have more prognostic value. Clinical risk may not be the same as genomic risk. So people who have had success with alternative only may have been genomically low-risk, or changed their epigenetics somehow to reduce risk.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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