Why? A Post from CaringBridge

I don't really talk about my cancer a lot on this blog, since it's more upbeat. Yesterday I posted this on our CaringBridge site and I think that it warranted being re-posted on here. My hope is that another young woman will come across this and it'll help her deal with what she is feeling about her own diagnosis and treatment.

This is hard. Cancer sucks. It is not smiles and pink ribbons and pink coffee mugs. Some days I feel really upbeat and like I can conquer the world, and others I find myself wiping my tears with one of Ben’s burp cloths. I have prayed and soul searched so much over the past 6 months. Why did this happen to me? What did I ever do that was bad enough to deserve this?

Not only myself, but I consistently worry about everyone around me. How it’s affecting my husband, how is it for him to look at other women who have hair and aren't covered by scars robbing them of their femininity. The fear he must feel about potentially losing his wife, physically and emotionally from this disease. About my parents. Parents should never have to bury their children, and I hate that this disease I’m fighting makes that a not too unrealistic thought.

Someone gave me advice early on that having a positive attitude really helps with treatment, recovery, and recurrence. I agree. It keeps you from getting down in the dumps and losing the energy to move forward. I try and put on a positive face every day, and if I had a nickel for every person that told me “how positive” I am or what a “great outlook” I have, we wouldn’t be asking for donations for medical bills. But here’s the thing, sometimes trying to be positive all the time can be bad. Like how I don’t feel like I can be negative. Being honest about my darker feelings, depression, or anger feels like I’m letting everyone down. Like everyone will realize that maybe I wasn’t really so positive. I read a quote that said something to the effect of “cancer doesn’t make you a more positive person, it just makes you a better actress”. Truer words have never been spoken. Although I do feel like forcing myself to have more positive thoughts makes me really start to believe them.

Sometimes I just really want to be angry, though. I want to go out in my back yard and scream up at the sky. I want to scream at God for dealing me these cards that have absolutely rocked me to my core. I want to kick and scream and go to that place in San Francisco where you can pay to throw plates at walls.  Dealing with your own mortality is serious business. When the cancer takes over your body and you’re nothing left but a shell of a person, the loved ones around you will never forget seeing you that way. I look down at this baby sleeping on my chest, and he needs his mother. I want to live to worry about Benjamin being out later than his curfew, and to pin his corsage for prom. I want to meet his girlfriend that will become his wife, and dance with him at his wedding. I don’t want him to grow up as a child that lost a parent. And Ryan, poor Ryan. Nobody thinks when they get married at 23 that the “sickness and in health” part will come into play for many decades to come, not two years down the road. This man has been through so much over the past six months. Although not physically enduring the surgeries and treatments, he’s been right there by my side. I have never felt alone in this whole process because of him. He fights right beside me during the day, and holds me while I cry out of fear at night. What did this loving, compassionate person do to deserve having a wife diagnosed with a life threatening disease in his twenties? It seems like everyone else our age is living with no major worries or struggles, enjoying their twenties.  I’m shaken at the thought of leaving Ryan as a widow to raise Benjamin on his own.

Breast cancer is horrible and mean and sneaky. Just when you think it’s under control and gone, it comes back with a vengeance. It’s like a nasty, slimy, monster that wants to steal mothers from their children, wives from their husbands, and daughters from their parents. It’s wrong. It shouldn’t happen to anyone, any family, any friend. We need research and we need medications to treat triple negative. My friends I’ve met on this journey are also daughters, sisters, friends, and mothers. I wish I had a million dollars and a pair of boxing gloves. I would donate all of the money to research for medication to keep this disease for coming back to me, and I would use the gloves to physically beat the crap out of this monster

Triple Negative Breast Cancer Day

Today is the first annual Triple Negative Breast Cancer Day. At 3pm local time, please take a minute to honor those women who have passed, and the women who are currently fighting this horrible disease. Do self checks and be your own advocate. Cancer doesn't discriminate by age, race, finances, or anything. Every 12 hours another woman is diagnosed with TNBC and that woman is a wife, mother, daughter, sister, or friend of someone.

Triple Negative is a much more agressive type of breast cancer. It's less understood, more likely to recur, and more difficult to treat. As of this time there are no targeted therapies or maintenance treatments to keep this from coming back-- just maintenance checks with an oncologist and prayer. PLEASE post this on your blog or facebook page. Awareness equals research and that's what we need. I need to live to see my son grow up and get married, and get wrinkly with my husband. #TNBCday

You can read about our journey with this disease on our caringbridge: www.caringbridge.org/visit/sarahaddison and our fundraising page www.gofundme.com/sarahaddison

Bra Day Usa

Happy Breast Reconstruction Awareness Day!!! Breast reconstruction is a major part of the healing process for breast cancer survivors, and many women don't know about their options. This organization is devoting themselves to educating women in the USA, and Canada, and I fully support them. In fact, once I'm done with my surgeries I'm going to sign up to be one of their "model volunteers". 89% of women want to see real reconstruction results before their go in for a mastectomy, and having gone through this myself I can agree. Not only would it be great to see real results, it's be great to see younger survivors. Many of the photos I saw were of women in their late 40s and up-- clearly we didn't look the same to begin with, and I found the photos to be uninspiring and sort of depressing. I'm hoping to make a difference with this journey I've been put on.

Blog With Love: Breast Cancer Awareness Month

I'm kicking off Breast Cancer Awareness month by participating in the Dr. Susan Love Research Foundation's third annual blogger initiative, to Act With Love. Hoping to use my voice to help further breast cancer research by encouraging you (my readers) to turn your awareness into action. Awareness is fantastic, and is the catalyst for action-- but we need more action to have a cure. For such a prevalent disease, we still know so little about breast cancer. 1 in 8 women will be affected by this diagnosis, and research will help us develop targeted treatments for a cure and recurrence.

How do I Act with Love?

Despite the reigning success of Breast Cancer Awareness Month and millions of dollars raised, we still have very little knowledge about breast cancer.  Now is the time to shift the discussion from awareness to pinpointing the cause and accelerating prevention--and you can help!  Turn your fervent awareness of this disease that affects one in eight women, and take action by investing yourself in breast cancer research.  Together we can fast track research and end breast cancer within our lifetime.

What is the Health of Women study?

With the introduction of the Health of Women study (HOW) TODAY October 1st, the Dr. Susan Love Research Foundation will revolutionize the fight against breast cancer.  By crowdsourcing health information, and involving the general public directly, we will uncover the information that will end breast cancer.  This groundbreaking initiative invites the public, men and women over the age of 18 of all health backgrounds, to be collaborators by participating in the study via the web or on their mobile devices.  HOW will also turn traditional research practices on its head by creating a venue for researchers to gather and share information, with the definitive goal of ending breast cancer.  To learn more about the Health of Women study, visit: www.healthofwomenstudy.org.

What Is Triple Negative Breast Cancer

You've probably seen me mention Triple Negative Breast Cancer and been unsure about what I'm referring to. Don't worry- I would've been too before this August. It's crazy, over the past two months I've learned more than I have in a LONG time. Terms like invasive ductal carcinoma, adriamycin, estrogen receptor status, and metastasis have become normal vocabulary around our house.

Part of the battle in fighting a series disease in this age of information overload is to keep yourself from becoming just that, overloaded. There's a lot of information out there, and sometimes it seems you can only find the worst. Ryan and I have tried to rationalize what we find, sort of like TripAdvisor reviews-- people don't normally get online to write a review about a nice trip they had, it's generally one extreme or the other. In the cancer world it seems like the majority of the information is from negative experiences or outcomes. Don't get me wrong- I'm fully aware that the diagnosis I have received will kill 108 women a day. But I'm hopeful about the research that's being done and strides which are being made to target treatments for women with my condition. Which brings me to my next point... I found this article earlier today and thought it was super informative, but easy for non-medical folks to read. Take a minute to read this, and it might help you better understand my disease and what we're dealing with.

http://blog.oup.com/2012/09/what-is-triple-negative-breast-cancer/

The big news this week comes from the Cancer Genome Atlas program, which has announced a strong molecular connection between basal-like breast cancer tumors and ovarian cancer. The news stories I have read on the topic provide a great deal of hope for women with basal-like cancers. But the hope is, unfortunately, buried in a greater deal of confusion.

Here’s the hope: We’re getting closer and closer to understanding what makes breast cancer tick on a molecular level, and that means we could ultimately have treatments that target specific molecular anomalies, making the treatment more effective, efficient, and possibly less toxic. Most important, it would be clearer to doctors which patients need chemo and which don’t, saving thousands of people from unnecessary and dangerous treatment. And making chemo for those who need it more precise.

Among those who could benefit most from this research are the women and men with triple-negative breast cancer (TNBC), which is currently treated with anthracylines — chemotherapy drugs such as Cytoxan and Adriamycin — that can cause long-term side effects including heart disease and increased risk of leukemia. Moreover, metastatic TNBC — cancer that has spread beyond to distant organs — can be resistant even to current forms of chemo.

The research on the genome project, published in the 23 September 2012 online edition of the journal Nature, ties basal-like breast cancers to ovarian cancers on a molecular level, suggesting that ultimately TNBC could be treated with the less-toxic chemotherapy used for ovarian cancer, including a mix of a carboplatin (Paraplatin) or cisplatin with a taxane such as paclitaxel (Taxol) or docetaxel (Taxotere).

That’s the hope. Now the confusion. The biggest confusion revolves around our understanding of triple-negative breast cancer (TNBC).

Some news stories I have read equate TNBC with basal-like tumors, as though the two were synonymous, which is not accurate. There is a correlation between TNBC and basal-like cancers, but not all TNBC tumors are basal-like, and not all basal-like tumors are TNBC. In fact, some researchers break TNBC into three subtypes, including basal-like and non-basal-like.

The other, and bigger, problem, come in the terms journalists and researchers use for TNBC: “particularly deadly,” “especially aggressive,” and “lethal.”

I understand why these words are used; it makes the research appear more significant. But these terms can frighten and depress those with TNBC and their families, and the research is significant enough to stand on its own without hyperbole.

Lost in the hyperbole is the fact that most women survive TNBC. The rates depend on too many factors to offer a generalization, but multiple studies have shown from 70 to 90% of patients with TNBC with no recurrence after five years. And rates for TNBC recurrence drop significantly after three years, so TNBC patients who have reached five years without recurrence often face better long-term odds than those with other forms of breast cancer.

It is a disease to take seriously, but who doesn’t take cancer seriously? Patients and survivors don’t need frightening words for effect. They are frightened enough.

Triple-negative breast cancer gets its name because tumors of this subtype lack receptors for estrogen, progesterone, and the human growth hormone Her2/neu. The significance of being negative for these receptors is that TNBC lacks a targeted therapy, such as tamoxifen, which blocks the effects of estrogen, Arimidex, which prevents the production of estrogen, and Herceptin, which treats her/2-positive tumors.

So, TNBC is a disease defined by what it lacks. But, thanks to research on the human genome, it may soon be defined by its specific molecular characteristics. And treating something you can define is a whole lot easier than treating what you can’t.

Patricia Prijatel is author of Surviving Triple-Negative Breast Cancer, published by Oxford University Press. She is the E.T. Meredith Distinguished Professor Emerita of Journalism at Drake University. She is doing a webcast with the Triple Negative Breast Cancer Foundation on 16 October 2012.