For those who have read Dr.Susan Love's Breast Book....

I've read mortality rates and she is pretty much bang on for Canadian stats. It seems to be running just over 50% of breast cancer patients die of breast cancer. Doesn't give a time line, just how many diagnosed this year, how many died. So if you consider that people who are node positive get very aggressive treatment, those of us who are left hanging in the breeze bring the stats up to the 30%....

Didn't want to respond to this because it depresses me, but then I remembered reading those stats twice before and being shocked.

I think we are living longer with the cancer, so we seem to be getting more mets, but years ago we may have died by now, if you know what I mean. I am not nearly as afraid of breast cancer than I was before this site. Thanks ladies!

Nicely said roses...

Lexislove

These are old stats, BC stats have been rewritten in last 10 years and we have to look back on that data then write the book. The new stats both from 2 top ONCS in SW state that 75% of woman are cured upon surgery and that includes women with some nodes. I have an appt. at teaching U in 2 weeks and will ask for articles. I have read long term stats and the data for stage 1 for 20 years is around 75% cancer free.
The new stats for HER2 won't be published by I will paste a comment from an email from my ONC  he is most respected in State, and it shares what he says re: HER2 NU NODE NEG. ALSO for those not HER2 Positive old stats don't take in to account that many node neg are now getting chemo and adjuvant therapy, not so 15 years ago.

The answer below was in response to my question what is the 95% survival rate good for 5, 10, 15 years for node neg Her2 women. He is tapped in to all the studies and research is his specialty. I just love the man!

"The 95% estimate I gave you is based on 5 year results where Herceptin has been added to standard chemotherapy, because we do not yet have longer term results available. But I expect them to hold up at 10 years, and beyond."

http://www.foxnews.com/story/0,2933,156467,00.html

I think the above article is helpful!

Barbe I am not sure of your particulars and why you are not on an AI, can you be or could you consider the BISPHOS trial if you are nervous?

I am also not familiar with Papillary Carcinoma, the stats according to my ONC for stage 1 is 80-90% cure upon surgery! (of course HER2 girls really need the Herceptin)

Barbe,  the mortality stats that I've seen for Canada are quite different than what you said.  In actual fact, my understanding is that 32% of Canadian women diagnosed with breast cancer will pass away from breast cancer, not 50%.  So that's a 68% survival rate.  Here's what the Canadian Breast Cancer Foundation says:

One in nine (11%) Canadian women is expected to develop breast cancer during her lifetime (this means by age 90).  Only one in every 28 Canadian women will die from breast cancer. This means that about two-thirds of the women diagnosed with breast cancer in Canada will live through it.   http://www.cbcf.org/breastcancer/bc_whatbc_bc.asp

You can't calculate BC mortality by comparing the number of women diagnosed in any one year with the number of women who pass away in that same year. There is no relationship between those two numbers.  The women who pass away may have been diagnosed 5, 10, 15 or even 20 years earlier. 

And here's another source of data.  Canadian survival rates are about 1% lower than U.S. survival rates.  So what are the U.S. survival rates?  The most comprehensive information on this is the SEER 1975-2003 report.  For those diagnosed with invasive cancer (i.e. this excludes DCIS), the 20 year survival rate is 52.5%.  But keep in mind that this survival rate represents women diagnosed between 1975 and 1979.  This was before Tamoxifen, before the AIs, before Herceptin.  The 10 year survival rate for this group of women (those diagnosed between 1975 and 1979) was 62.8%.  This compares to the most current 10 year survival rate (for women diagnosed in 1993 - still a long time ago) of 78.9% - an improvement of 16.1 points.  These women (the 1993 group) had a 5 year survival rate of 86.1%.  The most current 5 year survival rate is 89. 8%, for women diagnosed in 1998.   Another 3.7 point improvement.  So this would suggest that with no further improvements, a reasonable estimate of the 20 year survival rate would be about 62%.  This still doesn't take into account any treatment improvements since 1998 and or the fact that approx. 20% of all new diagnoses are DCIS, with a survival rate of 98% - 99%.  That alone would move the 20 year survival rate up to 69%.  http://seer.cancer.gov/csr/1975_2003/results_merged/sect_04_breast.pdf (see page 11)

As for Dr. Love's book, I never recommend it because I think it scares the c**p out of too many women.  And while I of course acknowledge that she's the expert, I disagree with quite a few things that she says.  As for her comment that 30% - 40% of node negative women will eventually develop mets, that's simply not possible with the survival rates where they are.  I remember a while ago there was a post about a quote something like this, and it turned out that there was an interpretation issue.  I don't know if that's the case here, but this quote sure doesn't sound right. 

I threw away Susan Love's book.  It was way too negative for me.  I am sure there are valuable parts but the tone of the message was too scary for me so I ditched it.

My breast surgeon advised me NOT to read her book.  Now I see why.

Linda

barbe1958 - Believe it or not you may be the lucky lady here.  Good news for your type of bc - http://www.providence.org/Oregon/Health_Resource_Centers/Breast_Cancer_Center/AskAnExpert_BRC_IntraductalPapillary.htm

Bessie - Thank you once again for calming our fears.  I think we need to keep things in perspective as previously mentioned that many of these statistics are already outdated.  Many of us are being treated aggressively with ovarian suppression medication or surgery plus Tamox or AI.  Don't forget now Zometa has shown some benefits plus there have been several vaccine trials for HER2 positive patients with promising data.  Now with the political changes and researchers being able to better pursue certain stem cells maybe the future will be better.  I believe there are many researchers pursuing ways to prevent and control breast cancer like a chronic disease - - IMO there is always hope (or maybe I'm just in denial).

AccidentalTourist,  Tamoxifen has been in use for over 20 years but initially it was approved only for women with advanced breast cancer.  Tamoxifen received approval for women who are high risk in 1998 and for women with DCIS in 2000.  So use of Tamoxifen among these populations would not be included in any of the survival stats that I provided in my earlier post, which were all based on women diagnosed in 1998 or earlier.

I agree that Dr. Love usually has a legitimate source of data for any stat that she quotes but I've found that she tends to cherry-pick the research to find studies that support her particular beliefs.  For example:

• Dr. Love regularly states that the local recurrence rate after a mastectomy, even a mastectomy for DCIS only, is 10% - 15%.  I have seen one study that did have a recurrence rate that was in that range.  But every other study I've seen, and every other expert that I've read, suggests that the local recurrence rate (assuming acceptable margins and/or radiation) after a mastectomy is more in the range of 1% - 2%. 
• In the DCIS forum right now there is a debate going about a statement made by Dr. Love about what % of DCIS cases, if left untreated, will evenutally become invasive.  She has said that only 30% will.  There was one study - I've read it - that did come to this conclusion, but this study was very clear in stating that all the women included had only a small amount of low grade DCIS.  The authors of the study itself indicated that the results would of course be different for high grade DCIS.  Yet Dr. Love uses this as a blanket statement about DCIS.  And that, frankly, is dangerous.

I know that Dr. Love is a very highly respected expert on breast cancer and I would like to trust what she says but I've seen enough that I just can't.  She has some very strongly held opinions and she uses research to support those opinions.  Many other experts disagree with her in many areas.  I'm sure that her comment that "30-40% of node negative woman will eventually develop mets" is based on some study somewhere, but I doubt that the result was quite as clear-cut as she makes it sound.  Perhaps the study was based on women who had surgical excision only, and no other treatment.  If that were the case, this result might make sense.

When I have more time, I'll see what I can find about this - what do other experts say?  What study is Dr. Love basing this on?  What does the actual study really say?

I've been trying to find Dr. Love's quote somewhere on the internet, so that I can find the study that is the source of her comment.  I haven't been able to find that but I did find something else that's interesting.  This report, which summarizes the findings from a number of studies, includes a reference to the fact that the 10-year disease free survival rate for node-negative women who receive no systemic treatment is 83%.  This ranges from 85% for those who had tumors of 2cm or less, to 75% for those who had tumors of 2cm or more.  The only catch is that it appears that in a certain percentage of cases, it's initially thought that the patient is node negative but with further testing, it's discovered that there is micromets.  The 10-year disease free survival rate for all patients initially thought to be node negative (i.e. including those later found to not be truly node negative), is 78% (87% for those with less than 1cm tumors, 80% for those with 1cm-2cm tumors, and 70% for those with >2cm tumors).  Again, these are all women who did not receive any systemtic treatment (i.e. no chemo).  Obviously, if chemo is added to the mix, the 10-year disease free survival rate would go up.

Here is the chart:  http://www.annalssurgicaloncology.org/cgi/content-nw/full/11/3_suppl/227S/TBL3 

And here is the full article:  http://www.annalssurgicaloncology.org/cgi/content/full/11/3_suppl/227S

Well that's a hell of a lot better! Thanks for the post!