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

Janet - I think you've got to remember than until rather recently the option of not having a mastectomy was not open to women. It's only been since the 1970-80s that women could have a lumpectomy.

The surgical community judges the 'modernization' of surgery by how many women receive this 'newer' form of treatment.

While many women may choose mastectomy, the profession is still operating under the cloud that forced mastectomy cast over it. My own mother had a lumpectomy some years ago before they were totally proven and she was quite upset that it was not an option for me because she was so relieved it'd been an option for her.

It's a bit like old-line feminists and younger women, probably their daughters, who would prefer not to work and stay home with their children.  the old-line women had no choice, so the opportunity means a lot more to them than it does to their daughers who never knew what it was like not to have a choice.

Lexi - When I look through my copy I don't see where she ever says 30-40% of node negative women have spread.I see two places where she says 20-30% of node negative women, with tumors > 1 cm have spread. It's in the chapters about staging and treatment.

That doesn't mean that 30% of women in that category who receive systemic treatment have mets down the road. For women in the 1-2 cm tumor size they have to look at other factors like age, hormone receptors, her2 status to decide if chemo is worth it. Beyond 2 cm she implies chemo is always worth it, even if your nodes are negative.

 I can see where Susan Love is hard to read. By the time I read it all I'd been treated and wasn't  worried. As someone with DCIS I wasn't ever very worried, which gives me a different view of breast cancer.

I did find that all of my doctors were familiar with the book so at follow-up appointments it was a good platform to ask questions from. I usually recommend books by John Link to women because I think he's written some good books that are easier to digest.

Rose

L - I'm glad you agreed. I just thought of something else I wanted to say so I changed my answer!

I chose to have a double mastectomy after being diagnosed with bilateral BC.  Both tumors were very small, and I could have had double lumpectomies, but I just couldn't stomach the risk.  Susan Love is very, very anti-mastectomy.  Reading her book made me feel guilty for making the choice that I did.  I think that the basic science in the book is sound, but she writes with a huge slant toward breast conservation.  I do think there's a sort of feminist those-doctors-won't take-my-breasts attitude throughout the book.  Of course, we all would have liked to keep our breasts, but please don't make us feel guilty for trying to save our own lives. 

I read it, enjoyed it and recommend it to people. 

Well I just came across this recent news article and it certainly did not improve my spirit or hope.

New Test May Predict Breast Cancer Metastasis

http://www.medicalnewstoday.com/articles/144086.php

I bought that book soon after diagnosis but have never read it.  Maybe I should pitch it! 

lexislove, 

The "40%" reference in the article from cp418 is quite different from the discussion we've been having about what Dr. Love said.  The article says that "An estimated 40 percent of breast cancer patients relapse and develop metastatic disease."  This figure would include women who are node negative and women who are node positive but who are not Stage IV.  In fact the article specifies that the control group (i.e the "matching" group that didn't develop mets) included women who had "invasive ductal carcinoma limited to the breast or with regional lymph node metastasis only".

Of those diagnosed with invasive cancer, approx. 6% of women are Stage IV upon diagnosis.  Another 31% have lymph node invasion (Stage II and Stage III).  This means that 63% of women diagnosed do not have lymph node invasion. So I believe that the group that this study is talking about represents 94% of all women diagnosed with invasive breast cancer.  Even at that, with a 20 year survival rate that's over 60% and these days may be closer to 70% (based on extrapolations of the SEER data - see my post above),  it would seem unlikely that 40% of women diagnosed with non-Stage IV breast cancer will eventually relapse and develop mets.  

By the way, I reviewed Dr. Love's book in a bookstore today.  The only reference I could find was a comment along the lines of what Rose mentioned.  What Dr. Love said (in the version of the book I was reading) was that 20% - 30% of those with negative nodes have some spread elsewhere.  This is exactly to PIP's point.  These women have negative nodes at the time of diagnosis, but some cancer cells have already moved into other parts of their body.  The larger the tumor, the more likely this will happen.  This is why chemo is always recommended for those who have tumors greater than 2cm and why chemo is often recommended for those who have tumors greater than 1cm.  The role of the chemo is to find and kill those few stray cells that have already spread, so that mets never does develop.  So the 20% - 30% figure that Dr. Love quotes does not translate into the same percentage of women eventually developing mets - the percentage would be significantly lower, if it's assumed that most of these patients do get chemo (as per the current treatment protocol). 

My entire team here did not want me reading her book... so, of course... I ran out and bought it...LOL. It was the WORST thing I cold have done. FOR ME... I should have known.. after my first breast surgeon WANTED me to get the book.

ALL my team was soooooooooooooooo happy I choose a Bi-lat. They were afraid, I would not.

I am an educated woman, and I knew, for me.. what I had to do. If I would have followed what Susan Love talk of, I would still have my breast tissue.

I know she has done so very much for BC. I admire that. But, I believe, you need to be very careful with your choices. I left a breast surgeon who thought I was NUTS to have a Bilat at 40, with a 3cm tumor and 1-3 node positive with Her2+++. She was the one who suggested I get Susan Loves Book.

I am very, very grateful ( for me) that I did not stay with that Breast Surgeon.

JUST MY OPINION in MY Cancer journey.

When I was diagnosed in Oct. 2006 a collegue of my DH's called - his wife is a survivor, and they recommended I purchase Dr. Love's book - I went to the store and looked through it - almost no information on Her 2+ and Herceptin, which I needed. I also was disturbed by her tone in general.  So that was enough for me, no sale.

Most of the stats are old, old (especially with Her2+) - I got most of my info from this site, and my onc., who tells me that with my pathology and treatment - MRM, chemo, and Herceptin, node negative status, taking Tamoxifen - my "cure" rate - he used that word - is well over 90%. 

Beesie, thanks so much for the info....  :O)

I never read her book as I was warned not to by a bc support person.  I'm glad I didn't and the feedback here confirms it.  Hmmm.... women don't need mammograms until age 50???  My IDC was only detected with a mammogram in my 40's - - what would be my dx if I had waited several more years???? 

I'm glad I wasn't the only one who was a bit disturbed by the statistics in the book. 

There's definitely some good information in there, but I thought it was quite negative overall as well. 

My mom just got the book to read and I tried to let her know it was a bit outdated, but I worry that she's going to fixate on those statistics.

Sometimes a problem can arise because of the different types of pathology, genetic make-up, type of breast cancer.  So I don't like to see us all lumped up to gather info.

I did read her book, I have had triple neg twice, she hardly had more than 2 sentences in regard to this type of bc.  I found that offensive and it was her latest update.  Not enough about brca 1/2 mutations either.  We can't get a general idea of where we personally stand if they put us all in one pile.