Survivors who have used only alternative treatments
Comments
-
1Athena1 Remember there is a huge difference between stage I and stage III. Even many Stage II don't get chemo because the benefit is too low for the risk. Stage III and HER2+ are different diseases and should not be treated like most of the stage1 HER2- or even stage II HER2-.
I don't think it's clear from your previous posts.
0 -
Chemotherapy has extended my life (and many Stage IV women) by years, good years (as opposed to what MathTeacher opines). All I hope is that the OP doesn't slip into Stage IV.
0 -
Lago, I never talked at any length about differences between stages so I am not clear on what you mean??? You might be confusing me with someone else?
0 -
OMG, if I had any hair right now, I would be tearing it out in frustration.
So much misinformation here. Nothing to back it up. People, show us the studies. Show us the proof. Let the sun shine on them. I have posted links to studies before and I will do so again momentarily.
But let me just say:
In terms of overall survival? We're all goners. That's right. We're all going to die. So no, our choice of breast cancer treatment is not going to affect that. 100 percent of us are going to die, whether or not we get treatment for our breast cancer. We're going to die of something, eventually. Got it? That's what you're saying, right Athena?
So breast cancer treatment is just about keeping us from dying of breast cancer anytime soon.
Tamoxifen, and chemotherapy, and radiation ALL offer significant survival benefits in regards to breast cancer. And NO -- the deaths caused by those things (of course there are some, we all know the risks) do not precisely cancel out the ones saved. Each treatment has a risk/benefit ratio which depends on your stage, age etc. For example, in my stage, chemo might cause 1 out of 100 deaths eventually (it's actually not that high) but it would save 17 out of 100 lives. Which camp did I choose? Yes, the one with the better odds.
But everyone should be aware of their own risk/benefit profile and make their own decision.
0 -
100 percent of us are going to die, whether or not we get treatment for our breast cancer. We're going to die of something, eventually. Got it? That's what you're saying, right Athena?
No.
0 -
Regarding cancer death rates. Breast cancer death rates in the U.S. have declined from about 55 per 100,000 women in the mid 80s to about 40 per 100,000 women in about 2005. That is a decrease of more than 25 percent.
I have a great chart that illustrates this, but can't figure out how to embed it in the post (tips, anyone? I captured it as a screen shot, and I have a Mac.)
Or, you can go to the link, on page 1714 and see it for yourself. The study is "Effects of chemotherapy and hormonal therapy for early breast cancer on recurrence and 15-year survival: an overview of the randomised trials." Published in the Lancet in 2005
Full study here: http://www.ctc.usyd.edu.au/cochrane/publications/EBCTCGpaper.pdf
Overall cancer death rates are fairly steady for women, but experts say (and this chart illustrates) it's because lung cancer rates have shot up for women. No, my friends, it's not because all those women had radiation for breast cancer. It's because most of them SMOKED.
So death rates for breast cancer have declined pretty dramatically since about 1990. Hmmmmmm. I wonder why?
0 -
mathteacher, brilliantly said...the truth of the matter. A B C women only using alternative results could be similiar. No two people will have the same results. This is why the cookie cutter approach to medicine is flawled.
0 -
For radiation -- the full study is here:
"Effects of radiotherapy and of differences in the extent of surgery for earlybreast cancer on loacl recurrence and 15-year survival: an overview of the randomised trials." Also from the Lancet, 2005.
https://iubcrc.iupui.edu/ccm/EBCTCG_XRT.pdf
It says: "...at least in the post-BCS radiotherapy trials, and among women with axillary clearance and node-positive disease in the post-mastectomy radiotherapy trials, the radiotherapy regimens that were tested produced moderate but definite reductions not only in 15-year breast cancer mortality but also in 15-year overall mortality."
0 -
I thank Beeb for linking to the specific studies (there are many). I just want to point out that on the face of it, Athena, your argument makes no sense. You make it seem that for every woman who is successfully treated one dies, one for one. Of course thats not true, not even close to true. There are very few medications out there that haven't caused any deaths at all, including over the counter medications. I can't think of a single one. People die from adverse reactions to latex gloves, for goodness sakes. I suspect this is also true for many alt supplements and the like. So its always a cost/benefit analysis with everything we take. How rare is the side effect? How significant the benefit? All cancer medications are powerful because the enemy is a powerful foe. So no one should take any of them if it isn't worth it. Stage I women often don't get chemo, the benefit isn't worth the risk. But someone who is, say, stage III and her2neu positive is facing a very significant threat of recurrence and death, a risk far, FAR greater than the (very real) risk from the treatment.
One problem is that the peddlers of alt treatments aren't as bound by regulations and professional licensing requirements and therefore can make extremely appealing claims. They can promise little to no side effects and amazing abilities to heal. What the Hell, they can say what they want. medical oncologists can't and won't do this. They will tell you about the limitations and risks from all these treatments, as well as the very real benefits. So the alt proponents come off as so much more appealing. You can be lulled by that if you choose. But it isn't based on science.
0 -
Improvements in overall survival from Tamoxifen for women with ER+ breast cancer are also explained in the chemo/hormonal therapy metaanalysis I linked to in the post about cancer rates. They are nicely broken out here at this link:
The short story is that Tamoxifen improves overall survival at 15 years by 8 percent. That is, for every 100 women who take Tamoxifen, 8 are alive at 15 years when they otherwise would be dead.
Someone node-positive like wornoutmom would have an even greater overall survival benefit. (Tamoxifen saved 12 node-positive women out of 100 at 10-years out.)
Please note that the studies I have posted are not dinky one-offs. They are meta-analyses. For the chemo/hormonal study, the authors pooled results from 194 relevant randomized studies; for the radiation study they included 78 randomized studies. These trials included over 100,000 women.
I have not done the research on AIs or Herceptin...and don't plan to anytime soon, in case someone else wants to go looking.
Hope this all helps with the decision-making! Of course, no one knows who will benefit and who won't, but why not give yourself the best chance at survival?
0 -
Reporting on a Lancet article, the Early Breast Cancer Trialists Collaborative Group found radiation starts causing more deaths than it prevents when followed out 20 years. Breast cancer deaths are reduced but "vascular mortality" increased. Radiation seems to be harder on younger women than older women.
Dr. Rory Collins, of the Clinical Trial Service Unit at Radcliffe
Infirmary, in Oxford, England, and other members of the Early Breast
Cancer Trialists' Collaborative Group reviewed the 10-year and 20-year
results of unconfounded, randomized radiotherapy trials that included
19,582 women. All of the trials began before 1990.
Overall, radiation prevented about two thirds of local recurrence,
regardless of patient characteristics or radiation type, Dr. Collins told
Reuters Health. According to Dr. Collins, radiation therapy appears to
translate into "moderate improvement in avoidance of breast cancer
deaths." He noted that the benefits of radiation tended to be greater in
node-positive women.
When the results of all studies were combined, women who received
radiation did not have lower breast cancer mortality in the first 2 years, but
after that, the annual breast cancer mortality was about 13% lower than that
of women who did not undergo radiation, according to the report.
Despite the reduced breast cancer mortality associated with radiotherapy,
however, overall mortality was actually higher in radiation-treated women.
Beginning 2 years after randomization, the annual non-breast cancer
mortality rate was 21.2% higher in women treated with radiation.
This increased mortality "appeared chiefly to involve an excess of vascular
deaths, perhaps due to inadvertent irradiation of the coronary, carotid or
other major arteries," the authors write.0 -
Using "natural" treatments for treating stage 3 cancer is analogous to bringing a knife to a gun fight. You are young and you're Her-2+. Your risk for ending up stage 4 and dying prematurely is not trivial. I sincerely hope you'll consider conventional treatments. I'm really sorry you are dealing with this at such a young age and with kids. Wishing you the best.
0 -
Matty, that study is over 20 years old and that makes all the difference. Radiation was done very, very differently back in the day, they basically nuked the women. Today it is much more targeted and thats why more recent studies come out differently.
0 -
Member, there is no difference in survival between the new radiation techniques and the old. It has been an expensive, high tech experiment with no benefit. Look up the stats.
0 -
I've been following this thread with interest .. if there are no benefits to radiation why do we have to have it with a lumpectomy? Would my survival stats have been the same w/o it?
Just curious.
Bren
0 -
http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp
I was surprised even breastcancer.org found no overall survival radiating small tumors.
"After about four years of follow-up in the ABCSG-8 trial, the cancer came back in
- 0.24% of the women who had radiation, compared to
- 3.2% of the women who didn't have radiation.
This difference was statistically significant, meaning that it was likely due to the radiation and not just to chance.
***There was no difference in overall survival in either trial between women who had radiation treatment and women who did not."
0 -
BinVa,
Radiation reduces local recurrence somewhat. But your survival is still the same whether you get rads or not. Rads was invented to prevent mastectomy before they had good post mastectomy reconstruction techniques.
0 -
So the overall survival is the same .. but recurrence is about a 3% difference. My tumor was a small Stage I IDC, and my recurrence and survival stats were low. I often wonder if I could have skipped rads altogether.
Bren
0 -
Isn't the Science of Statistics wonderful? You can get statistics to say whatever suits you. That way, yes: cancer deaths have dropped drastically......
When you take a second, harder look at the facts, though, you will come to the conclusion that that's not the case, unfortunately. Other statisticians can prove mathematically that cancer death rates have either stagnated or, in some cases, even went UP:
http://www.cancerdecisions.com/content/view/277/72/lang,english/
-------------------
According to statistics given in consecutive editions of Cancer Facts & Figures, which are available online, US cancer deaths for the last five years were as follows:
2002 557,650
2003 556,902 (a decline of 369 over previous year)
2004 553,888 (a decline of 3,014 over previous year)
2005 570,280 (an estimated increase of 16,392 over previous year)
2006 564,830 (an estimated decline of 5,450 over previous year)
2007 559,650 (an estimated decline of 5,180 over previous year)0 -
Mollyann you gloss over the effects of mastectomies with the line that now there are good reconstruction techniques, so no need for lumpectomies. I am glad that reconstruction is better for those women who must have mastectomies. But this is major surgery with the potential for far more serious complications than lumpectomies. If you're going to parse the rare side effects of chemo, I'm surprised you gloss over the potential for surgical complications. Women who have mastectomies risk range of motion issues, scar tissue issues and risk of infection. All of us who have had bc have scars, but there are degrees.
It sometimes amuses me how folks on this board will question each and every treatment except surgical. Somehow the knife is more acceptable than drugs. It amazes me, for example, that there isn;t more scrutiny here about oophorectomies, the long term complications from which are far more unknown than the long term effects of chemo. As long as I remember (and I've been coming to these boards for over 6 years) there has never been an extended discussion like this one about oophorectomies. Yet so many women who have had bc have this surgery.
0 -
MollyAnn wrote: Rads was invented to prevent mastectomy before they had good post mastectomy reconstruction techniques.
I'm sure you didn't mean that! Radiotherapy for cancer had been used for decades before a doctor in Toronto led clinical trials which showed that lumpectomy plus rads was as effective as radical mastectomy -- all other things being relatively equal.
0 -
Of course, I meant radiotherapy with respect to enabling less invasive surgery, lumpectomy.
Radiation has been around for decades. But more people are going back to mastectomy to avoid radiation damage which is forever. Dr. Marissa Weiss, the founder of BCO chose this option.
0 -
I'm posting this for Beeb75 as well as others who are interested.
Figure 14: Trends since 1950 in age-standardised (35-69 years) death rates,* comparing breast and selected other types of cancer, among women in the UK,
the USA, Netherlands, and France*The age-standardised rate is the mean of the seven separate rates in the 5-year age ranges 35-39 up to 65-69. Data from WHO statistics on deaths and UN
population estimates.0 -
Worn-out mom, WOW did this stir up some spirited discussion! I am so sorry you're having to go through this and I know the fear and terror that can drive decision-making, and I encourage you to slow down a little and not make decisions too quickly. Take your time and take a few deep breaths.
I would encourage you to look at your options, but consider your life values as the most important part of how you approach your treatment and follow-up. You have a lot to live for but you also need to consider the quality-of-life that you have to spend with your children. I am not advocating for or against any specific therapy but I will share my own story with you, but let me remind you that your cancer is more advanced than mine and has a different receptor status than mine, and you need to also consider these factors. And finally, you need to follow what is in your heart and what your "inner voice" says to you so that you can be at peace with your decisions.I had stage IIb with two positive nodes, had lumpectomy, and agreed to chemo only. I refused axillary dissection as this does not improve survival, and I declined radiation because of the potential adverse effects from that and it only improves loco-regional control but may not have any effect on survival. I had intended to do tamoxifen, however discontinued it after six weeks due to side effects. I am completely at peace with my decisions, (but still considering tamoxifen in the future) but obviously am not a long-term survivor at this point. I struggled with these decisions, and my oncologist and the radiation oncologist are not pleased with my decisions, but my oncologist is a very caring woman and now knows and understands that my life values take precedent over statistics. I did have a PETscan that was clear, and so that gave me additional reassurance that my decisions are correct for me at this time in my life and are consistent with my values. I am also working with and integrative health team and physician, and I find this gives me a more balanced approach to making health care decisions. It is to working with this team that I have learned to be more compassionate with myself, and this has given me a great deal of peace with my decisions.
The problem with treating breast cancer is that all therapies are based on statistical analysis of large populations of cancer patients. There is no way to know which specific therapy will be most helpful for which specific patients, and so most oncology treatment teams will use all therapies available, hoping that at least one of them will eliminate the cancer. They do this with the best of intentions and with the hope to minimize adverse effects, but they cannot even identify which patients will actually have adverse effects, and how severe they might be.
Please feel free to PM me if you wish.0 -
Yazmin,
You cannot get statistics to say whatever you want. The numbers are what they are, the trick is understanding them correctly and this often requires looking beyond what is presented in a headline, for example, or an internet posting on a forum.
Anyway, you and Athena, are talking about death rates from ALL cancers. I presented BREAST cancer death rates.... the cancer that brings us all to this board.
BREAST cancer death rates (deaths per 100,000 women) have declined dramatically starting in the 90s. No statistics say otherwise. I suggest this is due to the improved treatments available to us.
Regarding radiation -- the link Mollyann provides says:
"The main benefit from radiation is to lower the risk that cancer might return in the breast, requiring more surgery and possibly other treatments."
So when it comes to rads, the main benefit IS local-regional recurrence. For example, out of 6097 women with node negative disease, 30 percent had a local or regional recurrence after lumpectomy with no radiation, while only about 10 percent who had rads had such a recurrence.
However, the large meta-analysis I linked to in a post earlier today tried to address the question: does radiation improve overall survival ALSO? The answer was yes (for some people). Essentially, they found that for every 4 local recurrences prevented with rads, one breast cancer death was prevented. However, for anyone considering rads, you might want to read the entire study, since the results were different for different people/types of cancers/stage/nodes, etc.
0 -
Math teacher - you say no improvement in survival from Herceptin. Absolutely not true. Significant improvement in survival was found for all the large herceptin trials.Google BCIRG006. Look for for 3rd (latest) update for trial BCIRG0006 from bcirg.org. Significant improvement in disease free survival and overall survival in all populations of Her2+ patients... Overall group, node negative group and high risk group (4 or more positive nodes.) The other large Herceptin trials showed similar or better results - but I have no easy link to them. If you care to check look for published results of the HERA trial and the "Combined analysis trial" for Herceptin. You may have to pay to see the articles for the last two I sited, but can view the BCIRG 0006 results for free.For node negative - absolute reduction of 8%, relative reduction of > 50% for ACTH arm at 5 yearsFor high risk (>4 positive nodes) disease free survival improved from 61% to 73% at 5 years because of herceptin. Absolute improvement of 12%Overall survival for the group went from 87 to 92%. Absolute improvement of 5% at 5 years.Math teacher - Can you seriously say that if you had a 5 year risk of death from BC of 39%, you woundn't take Herceptin to up your odds to from 61% (chemo only) 73% (chemo plus herceptin)?I know you reject recurrence data (which is much more impressive than OS in the Herceptin trials), but for Her2+ BC recurrence usually predicts death since most recurrences of Her2+ BC are aggressive metatstatic disease, about 90% fatal, not the local non-lethal that is common for run-of-the-mill low to mid grade HR+ BC. Also overall Metatstatic BC has a cure rate of approx 2%. Thanks to Herceptin the cure rate of metastatic BC for Her2+ women is around 10% - sure absolutely dismal, but if it were me, I'd want that hope.I hate printing these numbers because it scares some women. But because you keep printing false information, I feel like I have to.0
-
BinVA you probably could have skipped rads but then you might have a recurrence. With recurrence, even if local would require treatment which would most likely mean another surgery and possibly chemo too. There is the risk that the recurrence would not be just local (spread to nodes) which could be even more serious.
The study that Molly and reference on BC.org basically says this in so many words. Your survival might be the same but you will benefit by doing rads by reducing your chance of recurrence.
Member_of_the_Club there have been a few discussions regarding oophorectomies just not as many as chemo/Rads/MX/Lump. I agree that it seems many do not question the need to do this. There are drugs that can suppress the ovaries but some women can't take these. I really don't know much about this subject though.
Mastectomy doesn't guarantee no Rads. Typically women with node invasion and/or tumors 5cm and larger will get rads… but it is judged case by case.As I mentioned earlier rads was not recommended for me although my tumor was 5.5cm.
0 -
Changed my mind about my post, but Beeb75, please check your research about the smoking comment and the rate of lung cancer in non-smoking women.
0 -
Surprised at the misunderstanding apparent re: overall surivial benefit. the vast majority of medical treatments do Not show no Os benefit. and no, it isn' about "we will all die." People should google it. Basic, well known concept in cancer research. I only know that Tamox has no OS benefiit but reduces recurrence. and I took it making the gamble we all make.
Early stage cancer is like crossing the Mafia and getting away with it. You live, but must forever glance over your shoulder.
Diagnosis: 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, ER+/PR+, HER2-0 -
I am only familiar with no OS benefit in Tamoxifen. Can't link or post much from here; best source on Tam is adjuvantonline, of all places. Excuse presentation. I have heard of no OS benefit for rads but only in certain cases. I did not look up data for other stages than myself on that one. Be well, everyone. We are all gamblers in this cancer world - even those we are true believers.
0
