Monday, April 11, 2011

You CAN Survive Triple-Negative


Triple-negative breast cancer has caught the attention of major researchers throughout the world, which is a great thing—it means that we are learning more and more about how to prevent and treat this illness. The downside of the research popularity is that the media and medical journals have developed depressing and frightening catch phrases for it, such as deadly, particularly aggressive or, my favorite, a lethal triad. People who write these words do not realize that they can terrify the women who read them, hitting like a heavy thud on our hearts. Researchers are trying to define the disease. Patients are trying to beat it.

The aggressive nature of hormone-negative is a comparative measure. That is, these cancers are, in general, more aggressive than hormone-positive cancers—although, in some cases, only slightly more aggressive. And some hormone-negative cancers can actually be less aggressive than some hormone-positive cancers. Scientists work in generalizations, defining how the disease affects women as a group. Individual cases vary and, researchers increasingly say, are as unique as our DNA.

How researchers classify triple-negative, for example, can vary. My own case—negative for estrogen and her2, but weakly positive for progesterone—puts me in a fairly narrow subset. Yet I had two oncologists tell me that they classify weakly positive as a negative, meaning I would be triple-negative. Researchers disagree, usually considering any level of positive as being positive. It is possible, though, that my weakly positive progesterone put me in a less agressive subset that is so small it is seldom researched.

So let’s look at some of the data and what they mean. And rather than simply accepting the gloomy picture that is often presented, let’s approach this in the enterprising spirit of yeah, but….

It is true that hormone-negative breast cancers can be more aggressive than hormone-positive. But the majority of women who get the disease survive.

It is true that most cases of recurrence come within the first three years. But that means that those who hit five years are looking at an excellent prognosis. A better long-term prognosis, in fact, than those with hormone-positive.

It is true that triple-negative is more likely to have spread to the lymph nodes. But many women with TNBC have no positive nodes—and, if they do, they still beat the disease and survive.

I have learned to turn statistics around to improve my perspective. For example, when research says that 30 percent of the women with triple negative died in a particular study, I turn this around and realize that 70 percent of the women survived. And I plan to be one of those women. And if, in another study, a triple-negative woman faces a two-fold increased risk of death compared with hormone-positive, I look at the fact that the difference might be between a 10 percent risk of and a 20 percent risk. And, while those decreased odds are startling and sobering, they still can mean an 80 percent chance of not dying. Even starting with a poorer prognosis, the odds can still be with you.
 
NOTE: This is an excerpt from my book, Surviving Triple-Negative Breast Cancer.

For more information on TNBC, check out my book, Surviving Triple-Negative Breast Cancer.  You can get a free signed copy just by donating $25 to this site.  Click the Donate button on the right to donate through PayPal.   You'll then get an email from me asking how you want your book signed and where you want it sent.  Thanks!  And hugs.

18 comments:

Kim said...

Pat--Thanks for the reminder that we need to look at TN in the positive light. Your blurb from your book is an encouragement for us all.

rachel said...

"Like" this :)

Teresa said...

Very helpful post. Great blurb (I look forward to the book!). I always focus on the 85% chance that my TNBC will not recur, no matter how many people ask me the chance of recurrence I answer with 85% chance of non-recurrence. They can do the math! (It's surprising though how many people can't and keep re-phrasing the question as though I didn't understand them!) 2 year check-up Monday.

zee said...

Pat-thanks for giving us a positive perspective. Cant tell you how encouraging it is to read this.God Bless!!

Joan Flores said...

Thank you, Pat! I always appreciate reading your positive posts. I am currently undergoing neoadjuvant chemo for Stage 2 - possibly node positive TNB.

Anonymous said...

I think you are the only place on the internet that points out that most people survive triple negative breast cancer. I understand that hormone positive breast cancer hasa better prognosis, but I have also read that there is a 30% recurrence rate for hormone positive breast cancer and that 50% of recurrences happen after the 5 year mark. Sometimes these statistics are startling to me given that hormone positive breast cancer have targeted treatments. Most people with triple negative are, in fact, cured, even without targeted therapy. I think in may ways this is a good sign.

Tarja said...

Hi Pat! I got to know last Tuesday that I have triple-negative breast cancer. I am from Finland and had a hard time to find information on this type of breast cancer. But then I found TNBC foundation and through that you! Thank you so much for being there and sharing so much valuable information and encouragement with us all! I felt like getting my life back reading your writings! Can't wait that your book will be published.

Satsuke said...

Hi Pat!

I am from Finland too as Tarja. I got to know almost 5 months ago that I have to beat this mean disease. First they did the mastectomy and then they started my neoadjuvant treatment. Later at summer they might give me some radiation too.

At the moment I am 30 years old and I have 86 % chance of non-recurrence (no positive nodes).

I can tell you that here in Finland most of the information about BC is about hormone positives. That's why we are so happy that we found your blog. Keep on writing - and triplenegative women in Finland will be reading!

Can't wait your book will be bublished!

strawberryandpeach said...

Pat,
Hi, I´m a brazilian physician and my mother is Triple negative. Her case is very similar to yours. She has weak receptors positiviness as you but still negative. The uncommum issue is that her tumor has a slow growing. She had a lumpectomy plus radiotherapy. She has 2 years after disease. She´s taking only vitamin D.

Anonymous said...

Glad to find this blog. I am nine years out of TNBC, 2.5 cm tumor, no nodes. My oncologist will dismiss me after next year. I also have friends that had TNBC w lymph node involvement and they are fine too. I know it's aggressive, but you certainly can survive.

Anonymous said...

eThank you Patricia for this positive and uplifting site. I am 44 years old and was diagnosed Jan. 2012 with breast cancer and involvement of nodes. At the time of dx my tumour measured 6.5 cm! It was long and very thin so difficult to feel as a lump. I began neoadjuvant chemotherapy a couple of weeks later. My biopsy results came back after starting chemo and low and behold it was TN. During chemo I did not suffer from nauseau or vomiting but had the other side effects of fatigue, hair loss and my nails took a beating. I finished 8 rounds of chemo and 5 weeks later had a bilateral mastectomy and axillary clearance of the left breast. I just received my pathology report which showed that my large tumour had shrund by 90% to 6mm and though all the doctors thought my nodes had been cleared 7/8 still came back as positive for disease though they had shrunk considerably from the time of diagnosis. All margins were clear. Now I await radiation. I feel positive and I guess just need the reassurance that even though my nodes were positive that I can beat this. Tomorrow I see a doctor who specializes in preventative medicine and in my conversations with him he has told me to not worry about being TN as many of his suggestions are as powerful as the 5 year conventional drugs for horomone receptor positive cancers. I am willing to share what I learn for the benefit of others. Thanks Patricia and if anyone else out there has a big tumour such as mine - it can respond well to chemo! Just remain positive. My surgeon is pleased with the overall outcome of the response. Thanks again, Patricia and God bless you.

Anonymous said...

I am 32 years old and was dx with tnbc at 38 weeks pregnant. They gave me an immediate c section and inserted a port and did some scans, luckily it hasn't spread. I was dx on July 10th 2012 and chemo began one week later, my tumor is in my left breast it seemed to have appeared overnight and grew quickly. I've had 4 rounds of ac, having a double mastectomy next week then a three week wait before starting 12 weeks of taxol then 5 weeks of radiation. I'm praying to get rid of this and it never ever comes back. I don't know what stage I'm in but I do know it's a grade 2. Would love someone to talk to

Patricia Prijatel said...

Feel free to email me anytime. I am at patricia.prijatel@drake.edu. What size was your tumor? Did you have affected lymph nodes? That all helps determine your stage. I hope you are coping with treatment OK, especially with a new baby. And
I hope you have help. Blessings. Pat

Janelle said...

I just saw your conference and loved it!

I was dx 2-10-11 with TNBC Stage 3A Grade 3. I had a large tumor but it was more of a thickening than bump. It didn't appear on my mammograms or ultra sound...did the dose dence ACT, bi-lateral and 6 weeks of radiation. Completed 10-13-2011.

I had a local recurrance 2-26-12 in the same breast but in came back in the skin. I did Carboplatin/Gemzar and then surgery to remove all the skin. Clear Margins and a Complete Response to chemo!!! Yeah!!!

They have decided I don't need radiation, since everything was removed and it's all new skin. Rad Onc also said radiation is different with TNBC then the other cancers.

I'm trying to decide if I want to go through with reconstruction or not...47 yrs old.

I feel I got my recurrance out of the way and am starting my new journey in life.

What are your thoughts with your knowledge?

Thank you for your blog!

Patricia Prijatel said...

Janelle: Congrats on successfully completing treatment. Yay for you! Sounds like you have a good team. And I am so glad you liked the presentation. It made me a little nervous--such an important topic! I am not that knowledgable about breast reconstruction, but I know of many women who are delighted with their reconstruction, with being able to feel whole again. I also know women who decided against it, saying enough is enough after treatment, and are also pleased with their decision. (No more bras!) You just have to ask yourself how important it is to you to have the breasts all there and how you feel about the way you look now. It is such a personal decision that you just need to listen only to yourself. I know of now medical advantage either way. Take care. Pat

Anne DK said...

Hello Pat and anonymous with 6,5 cm big tumor shrinking to 6mm - my story is just like yours - can I contact you, or you me: I'm @CancerTwitDK ón Twitter.
Mail: anne.krogh@hotmail.com

Pat thank you for this blog, I'm going to ordre the book tomorrow :)))

Best wishes from Anne - Denmark

Giada said...

Hi Pat,
My mom was diagnosed with TN of the right breast in April. She is 64 yrs old and with a tumor of 3 cm. The doctors have told her that she is inoperable until the size of the tumor shrinks. She can't undergo radiations and only one type of chemo is believed to be likely effective against this disease - but only in 50 percent of the cases. Three months of chemo therapy later, the tumor has not shrunk, in fact it has grown. They changed my mom to a different chemo treatment which has nearly killed her and ravaged her platelets count forcing her to postpone treatment for a week or longer until her body era quirks strength. Doctors are not giving me an accurate diagnosis and I feel that the chemo is doing more wrong than good. Do you have any thoughts, therapy suggestions. I am at a loss. Giada

Patricia Prijatel said...

Giada: Why won't the docs operate now? Is it because of where the tumor is? Also, what type of chemo has she been on? Are they considering a different regimen? Those are the questions I would ask. And is there another doctor or hospital where you can get another opinion? If so, I would go there right away. Pat