Survivors who have used only alternative treatments
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Okay my question goes out to who ever can answer it please provide me websites that data regarding Her2 increased rate of distant as opposed to local I would honestly like to study this.
Also in national death rates please do the math. The average death rate from the national cancer society reports the actual number of death cases each year which in the last decade has hovered in the 41000 range only to go up or down by a few hundred in years some where it actually rises then back down. The lowest is 2010 which is only aprox 500 or so down from the median of 41000 which no matter how much you stretch it is no where near 30% but more in the 2-5% range. It is very important to study deeply the art of statisics if you want to rely on that for decision as it can easily be twisted and manipulated depending on the source and your frame of mind. Such as I would love to see 50% increase using herceptin but fact is the 50% increase is only in reference to 50% more only taking into accout those who survived the first chemo stats. So if I want to use this it would be more reasonable to do the math of real survivor increase before I get to excited over the 50. The second and third opinons should be something all should consider. Unless you have the horrible place I have that all doctors are one place as you can never get a true second opinion!
Her 2 per my doctor you can take 10% of the stats she gives me. I do how ever find it weird that she can not give me data on her2 specifically with herceptin's exsistance but can verify it is increasing my survival??
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WOM - I don't think the oncotype test applies to HER2+ve tumours - you might like to check on that. The reason being, that those type of tumours are so agressive it renders the oncotype test useless. They have done studies in Scandanavia regarding 9 weeks of herceptin treatment but there have been no long term results as yet. If you have chemo you are likely to be given AC-TH given your node positive status, although your onc might choose to go for TCH x 6 if you have any heart issues. The A (andriamycin) in AC-TH can cause permanent heart damage. Herceptin does not cause permanent heart damage and you are monitored closely while receiving it.
I agree with a previous poster - you are young - throw everything at it that you can. I survived 6 x TCH and my year of herceptin. I'm 58 and I coped quite well. Seeing you are young and healthy you should be just fine. Sure, change your diet, see a naturopath but please think of your little ones and how it would be so sad for them to lose their mother. It may be no one who was Stage 3 HER2+ve and went for alternative tx has come forward because they saw the seriousness of HER2 and went with the conventional treatment.
Sue
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WOM - just went and looked it up. The Oncotype DX test just confirms the results of the FISH test for HER2. It also appears that oncotype test in node positive patients has only been tested on post menopausal women - it's usually only used on Stage 1 or 2 node negative women who are pre menopausal.
This is from the OncotypeDX website:
http://www.oncotypedx.com/en-US/Breast/HealthcareProfessional/FAQs.aspx#20
The Oncotype DX assay is clinically validated for newly diagnosed breast cancer patients who are either:
- Stage I or II node-negative, estrogen-receptor-positive*
- Postmenopausal, node-positive, hormone-receptor-positive
* As of September 21, 2009, Genomic Health accepts all appropriate early stage breast cancer tumor samples regardless of IHC ER status to facilitate the accurate identification of patients who are ER-positive by either IHC or RT-PCR.
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suepen and WOM,
thanks for the research on Oncotype DX, will ask our onco as well.
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wornoutmom I believe they are investigating if herceptin for 6 months only. study link
LtotheK Yes there is some talk that if your are HER2+ ER/PR negative and have passed the 5 year mark, the likelihood of your cancer returning is lower but that would be true of most ER/PR negative breast cancer after 5 years. For those of us that are triple positive I don't believe that is the case.
Beeb75 you are correct that HER2+ breast cancer not treated except for surgery does have a higher risk of relapse. This does not mean that all HER2+ breast cancers will relapse.
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Lago - If you can read this (seeing you have blocked me) - I'm sorry I snapped at you last year. I was very upset at the time due to the discovery of the second cancer. I'm now over the whole thing and moving on - please forgive me.
Sue
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Nanay - I don't think the oncotype test will be relevant for WOM - but definitely should be for your mother given her age.
Sue
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sue,
it seems that my mother will not be able to get the oncotype DX as well, as she had her tumour removed one year ago..
not sure if NCCS (National Cancer Center Singapore) will even entertain our request, but I will try..
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Nanay, in some places, the samples are kept frozen for several years. I would also give it a shot.
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here is an article from breastcancer.org (very conventional).. that talks about sequencing of treatment..
they recommend that treating BC with Herceptin with chemo prior to surgery is better. I would like to bring this out to MOC and Sheila, as last 31 March, you told me that surgery should always be the first line of defense.. it seems your recommendation is wrong or at least contradicting this other article-- that is very conventional in its approach..
http://www.breastcancer.org/treatment/targeted_theraphies/new_research/20100129.jsp
so even if you doubt 100% alternative approach-- you have to agree with me that SURGERY should not be the ONLY FIRST LINE OF defense. that doctors have to think about sequencing of treatments .
see it is possible to do Herception+chemo then surgery then chemo. in your previous posts, its seems you are implying that it always has to be in this order surgery then chemo/rads then Herceptin
or surgery then chemo/rads/herceptin all at the same time.
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Nanay, I meant 'first' as in 'most important', not 'first in order'. There are a couple of reasons for using surgery after other treatments, such as when an otherwise inoperable cancer needs to be shrunk first to make it operable or with Inflammatory BC. I didn't know they did chemo and herceptin first as I don't have that type of cancer, but you were saying you didn't want chemo so I thought you meant you were rejecting all conventional treatment which worried me.
When no surgery is done then the chemo can shrink the tumour to nothing but if there were any cancer stem cells in it they will remain and spread. Also the tumour may be sending out circulating cells into the blood stream so the sooner it's out the better if that is happening.
Personally I'm a lot more comfortable with having body parts removed than having heavy duty drugs pumped around my body, damaging my immune system and risking long term harm. If I had HER-Pos then I would consider chemo and herceptin but I haven't studied it enough to know what I would do. I hope it's not too long before a treatment is found that can save us from surgery without damaging the body so much as current chemotherapies.
I hope that's cleared things up as actually we are very much on the same page in many ways, and I hope all is well with you and your mother.
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I never said surgery has to come first. Neo-adjuvant treatment is often the best course. I was just saying that in your mother's case, surgery was an important component of her treatment. I certainly never said surgery should be the only treatment (though for some women, that is true).
Athena, I think you need to calm down a bit. No one here is berating WOM, they are simply giving her additional advice given what she is proposing. Most are working within the alt/CAM framework she has chosen. For example, if she wants to rely on the oncotype test but it isn't useful for her form of cancer, what is wrong with pointing that out? She ash posted on a public discussion board.
I don't believe that support means agreeing with what everyone chooses to do as if it doesn't matter. It matters. But I also understand WOM has made a decision. I don't think anyone is being disrespectful.
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Suepen you were unblocked months ago. I would forgive you but to be honest it wouldn't be sincere since I really forgot what we were "fighting" about.
Seriously we all have bad days. Don't sweat this. Sent you a PM.---------------------------------------------
OK back to the thread issue
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I don't believe in second opinions from the same hospital. From a common sense standpoint, they all follow the same protocol and review cases as a board.
True second opinions come from competing hospitals and facilities. And I got radically different stories, which is why even though it's huge work to get them, they are so important. One of the benefits of being a young patient is, I got the red carpet for all my opinions. Doctors are very interested in working with this population.
Wornoutmom, I got my second opinions in a major, busy city in a week. You can do this if you get on the horn today!
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Just because the national death rates have hovered for the last ten years does not mean chemotherapy is 2 - 5% effective, I hope readers understand that. I'd love to hear, genuinely, a doctor of any kind--allopathic or naturopathic--who would tell you the risks outweigh the benefits of chemotherapy for Stage 3. But I do believe that advice needs to come from a doctor.
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Wornoutmom,
Could you post a link to where you saw those breast cancer death rate statistics?
I agree that statistics need to be carefully interpreted. But is anyone really suggesting that breast cancer death rates have *not* been dropping? If so, could you please provide the sources of the data that show this?
Here is one study that explains:
"Breast cancer mortality in the United States peaked in 1989 with an age-adjusted (2000 United States standard) mortality rate of 33 per 100,000 woman-years.1Thereafter, mortality rates declined 24% to 25 per 100,000 woman-years in 2003."
Source: http://jco.ascopubs.org/content/25/13/1683.full
This study is a bit old (published in 2007), and death rates have dropped even further since 2003.
Mortality "rates" (i.e. number per 100,000 women, age-adjusted) are a more accurate way to gauge changes (progress/lack of progress) in breast cancer, and the news since 1989 is good.
Wornoutmom, you seem to be looking at absolute numbers of breast cancer deaths, which is a misleading indicator (since the population is always growing, and since the number of breast cancer diagnoses changes from year to year.) But there actually has also been a decrease in the absolute numbers, which is all the more remarkable...because even though there are more women overall, and more women diagnosed with breast cancer, fewer and fewer actually die of the disease. In other words, there are more cures happening.
Also, remember that statistics always lag behind reality -- it takes years to collect statistics, interpret and publish them. The data on Herceptin isn't available yet on a population level. Even when it becomes available, it will probably not make an enormous dent in the breast cancer death rate -- mainly because Her2+ cancers are a fairly small subset of the entire breast cancer population.
I'll use some guesstimate numbers to explain:
100 women get breast cancer
20 percent (or 20 of the women) are Her2 positive
Let's say 40 percent of those Her2-positive women would have had a distant recurrence in the time before Herceptin. (This would incorporate women of all stages, so would obviously range for each individual, with the Stage 1s having a much lower recurrence rate, compared to say, Stage 3s. I'm just taking a stab at this number, thinking it will be worse than the overall recurrence rate of about 20 percent)
40 percent of 20 is 8. So 8 women would have died from Her2+ breast cancer in the pre-Herceptin era.
If Herceptin "saves" 50 percent of them, that's 4 women.
4 women out of the original 100 diagnosed with breast cancer are "saved" by Herceptin. So you might, in the coming years, see the breast cancer death rate drop an additional 4 percent.
Since the current breast cancer death rate is about 19 percent (a crude estimate, dividing the annual number of deaths by the annual number of diagnoses, or 39,840/207,090). If you improve on that number by 4 percent, you'd see the number of breast cancer deaths drop to about 31,000/year (all other things being equal, which of course they are not, because the population will keep growing and the number of breast cancer diagnoses could increase, decrease, or stay the same).
Hope these numbers make some sense. My point is: even with Herceptin saving 50 percent of Her2-positive women at risk of death, you may not see a huge change in the overall number of national breast cancer deaths, because of all the other factors that go into it. But Herceptin would still be saving 50 percent of the women who would have otherwise died from their breast cancer.
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Beeb75 I also think the death rates for breast cancer have gone down since 89 because there is more early detection. Digital mammograms might have something to do with better detection. But one can't ignore Herceptin. I would be so scared right now if it wasn't for Herceptin. Seriously I would be taking my 401K and traveling to Asia (Vietnam, China, Thailand, India) Mexico, Israel, and/or Africa. (OK I don't have that much saved so I can't do them all). 0
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Oh yes, early detection surely had something to do with it, but more importantly (probably), was the introduction of anti-hormonals (tamoxifen to start) as the standard of care in the 90s. Also, the incremental improvements in chemotherapy, for those who needed it. The large-scale, long-time data for Herceptin just isn't in yet, since it has only been the standard of care for 5 or 6 years now. It will be interesting to see the population data in the coming years!
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I don't think the benefits of digital mammograms have shown up yet, they've been in widespread use for less than five years. There has been an increase in early detection but I also think the decline in death rates is due to more effective treatments.
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Hi WOM,
Here is the information you requested. There is more information than I remembered
From: "Trastuzumab after Adjuvant Chemotherapy in Her-2 positive Breast Cancer (this is the HERA trial), New England Journal of Medicine, Oct 20, 2005 volume 353, No. 16
(numbers are number of patients):One year of Trastuzumab (after chemo)local recurrence 17
regional recurrence 10
Distant recurrence 85
Site of distant recurrence (subset of distant recurrence)
soft tissue 6
skeletal 24
central nervous system 21
other visceral site 34
Observation (no trastuzumab after chemo)
Any recurrence 220
local recurrence 17
regional recurrance 13
distant recurrence 154
site of distant recurrence (subset of distant recurrence)
soft tissue 19
skeletal 38
central nervous system 15
other visceral site 82
Also from the same article: Cardiac Events
Death from cardiac cause: Trastuzumab: 0, Observation 1
Severe CHF: Trastuzumab: 9, Observation 0
Symptomatic CHF, including severe CHF: Trastuzumab: 29, Observation 1
Decrease in LVEF: Trastuzumab: 113, Observation 34
More data coming...
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WOM,
From "Trastuzumab plus Adjuvant Chemotherapy for Operable HER-2 Positive Breast Cancer", The New England Journal of Medicine, October 20, 2005, 353, No 16. This article describes the results of the "Joint Analysis" trials, however sites of recurrences are provided for each individual trial. This trial studied chemo + herceptin (AC TH) versus Chemo only (AC T). Again numbers are numbers of patients.
Trial B-31
Total recurrences (all patients with follow up) ACT: 171 ACTH:83
Local or regional recurrence: ACT: 35 ACTH 15
Distant recurrence ACT: 111 ACTH 60
Contralaterial breast cancer: ACT: 6, ACTH 2
Other second primary cancer: ACT: 15 ACTH: 2
Death with no evidence of disease: ACT: 4, ACTH: 4
Trial N9831 (also called NCCTG)
Total recurrences (all patients with follow up) ACT: 90, ACTH:50
Local or regional recurrence: ACT: 22, ACTH 12
Distant recurrence ACT: 63, ACTH 30
Contralaterial breast cancer: ACT: 0, ACTH 1
Other second primary cancer: ACT: 3, ACTH: 3
Death with no evidence of disease: ACT: 2, ACTH: 4
Cardiac Events:
Class 3 or 4 HF or death ACT4, ACTH 31.
"Of the 31 women in the trastuzumab group who had congestive heart failure, 27 have been followed for at least 6 months after the onset of heart failure, and only 1 reported persistent symptoms of heart failure at the most recent follow up visit."
WOM: Since you are so into research, I strongly suggest that you obtain copies of these articles and read the whole thing. You can probably obtain them online from the NEJM website, but will likely have to pay for them.
Best wishes for you.
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We went over this at the beginning of this thread.
Again, if you got breast cancer *recently* you are only very slightly less likely to die from it than you were in pre-chemo pre-Tamoxifen 1950 - the spread is about five percentage points only between that year and 2004. ( http://www.nytimes.com/interactive/2009/04/23/science/0424-cancer-graphic.html).
Early detection can skew data and presents another conundrum because it shifts the starting gate for comparison and because its benefits are disappointing. (http://query.nytimes.com/gst/fullpage.html?res=980DE1DD163EF934A25754C0A96F9C8B63) Researchers know that some breast cancers do not need treatment and will disappear by themselves (only talking about DCIS here - not invasive cancer). Because cancers are being detected so early more are being identified and treated that may not have needed treatment. The big problem, of course, is that we still don't know which will go on to be invasive and which will not, so all DCIS must be treated. Before the "early detection saves lives" soon-to-be-debunked myth surfaced, BC was often caught later and more may have died, while others may have been treated that did not need it.
Oops - sorry - didn't mean to plant this right in the middle of the trastuzumab posts - I had to leave and posted belatedly.
I hear the following book is supposed to be quite good: Pink Ribbon Blues by Gayle A. Sulik. IMO, the pink movement is responsible for fostering this idea that great progress has been made. The truth is, you have a higher chance of getting BC today, and even if you don't die, you still endure the treatment.
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Athena, you are citing very general information. WOM and Nanay's mom have very specific aggressive cancers that respond especially well to chemo and herceptin.
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`Athena, help me out. because when I click on the link you provided the data for breast cancer ends in 1994. And a 5% reduction between 1950 and 1994 is not nothing considering, for example, the increased incidence as a result of women taking HRT.
Here are the latest numbers:
http://online.wsj.com/article/SB10001424052748704530204576235052108753400.html?mod=googlenews_wsj
These show a 2.2% decrease in breast cancer deaths per year since 2003. The decrease has been consistent. I believe there was an even larger decrease in deaths before that but I haven't gotten my hands on that data.
This mantra about breast cancer deaths remaining stable is absolutely wrong and i don't understand why we have to keep shooting it down. Not to mention that the decrease in deaths due to herceptin are incredibly striking -- those numbers are in the range of 50%.
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Thank you, Member, you beat me to it ...
And you are right, there was an even bigger decrease in the breast cancer death rate before 2003. In 89' breast cancer killed 33 out of 100,000 women; in '03, that was down to 25. That's a 24 percent drop. And it's continued to go down....
Also, Athena, my numbers are only about invasive cases, I never include the DCIS diagnoses.
Orange, thanks for the data from the Herceptin trials. You can read both articles online for free. Go here and click article (or expand any of the sections):
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Thanks for the links Beeb.
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So happy to see those Herceptin results! Much needed progress for the Her2 positive crowd. (I'm not Her2-positive, but a family member is!)
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yes, an article I read over the weekend referred to a 25% drop in breast cancer deaths before 2003, but I couldn't find it. Thanks.
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Orange, I apologized for the timing of my post because I wasn't jumping in as part of the Herceptin discussion so sorry for the confusion.
MOTC - I never said the deaths were stable. There has been a decline, just a very slight one considering all the new treatment that has been introduced. That WSJ link you post with NCI data is interesting (and outside of my previously mentioned time frame). I wonder if they are talking about pure prevalence of death from the different cancers or whether they are factoring in age and population. Because a decline in death prevalence could be due to many things that have nothing to do with cancer and could not be used as a barometer of success. In other words, cancer death prevalence rates cannot be used to argue that the disease is becoming less of a menace if there is a reason for the prevalence decline that is not intrinsic to cancer. That question remains. I could probably check out the answer from the NCI itself - maybe they do answer that question.
And one thing we haven't already gone through which could cloud treatment effectiveness data: It is certainly possible that treatment has helped cancer in theory but that those efforts are being torpedoed by environmental concerns that we don't yet fully understand. So, for example, a woman who is treated for Stage IIB and, in 1950 would not have had a recurrence, does have a recurrence in 2010 because she remained in the polluted town where she had grown up, or she continued to drink polluted water. It may be that steps forward being made in one direction are being undermined by steps back in another. I am not holding my breath. The fact is, progress remains abysmal, IMO.
Beebe, where did you get the following:
In 89' breast cancer killed 33 out of 100,000 women; in '03, that was down to 25.
In any case, the 24 percent drop that would represent would be misleading because it's 24 percent of teeny morsels. This reminds me of something: someone I used to work with who couldn't understand why her editor would not accept a story on a crime incidence in a country she wanted to report about. She kept saying that there was a 300 percent increase in that crime, and how could it be ignored. It turned out that the increase was from two instances of the crime in one year in the whole country (not the US) to six.
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Curious, has anyone tried or considered bio-identical hormones?
Donna
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