30 years

This month, it’ll be 30 years since my mother died. Gotta say, it feels surreal that she’s been gone for this long. My mom, she missed pretty much everything in my life, minus my birth. She was definitely there for that one. After that, my mother missed my First Communion, Confirmation, high school graduation, college graduation, first job, first heartbreak, buying my first house, so on and so on.

She wasn’t there when I had breast cancer. More than anything, I missed her while I was going through treatment. I wanted my parent there so badly. Just because I don’t remember doesn’t mean I don’t miss her and have a mom-shaped hole in my heart, which will never go away.

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This is what she just missed in my life. My two brothers, each of whom have kids, also missed out having our mother in their lives.

Metastatic breast cancer is a thief. It’s a dirty dirty thief. It stole my mother, and I’m doing something about it. Once again, I’m raising money for Metavivor. Every dollar you donate will go toward researching metastatic breast cancer. This year, I decided to run 30 miles this year – one mile for every year she has been gone.

That’s right – 30 freaking miles. I’m doing a marathon and then 3.8 miles before.  The date will be November 18 – be there or be square, and watch me hobble toward this bonkers goal of mine.

If you can donate, then you can do so here:

https://secure.metavivor.org/page/contribute/larahuffman30

If you cannot, I understand and would be very appreciative of anyone who can share my story and my link.

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My Version of the “Breast Cancer Awareness Game”

I have heard that this year’s “Breast Cancer Awareness” game is already rearing its head, and I have a couple initial thoughts.

First one being, come the fuck on. It’s not even October. It’s not even SEPTEMBER. Why why why?

My second thought is this, and will always be this, WHO IS NOT AWARE OF BREAST CANCER? Seriously, find me that person who isn’t aware of breast cancer because they need to have a talk with me. I want to know where they have been hiding for the previous 20 years and see if they need joining the 21st century.

Here’s the game: you receive this message.

“Hi beautiful ladies so here it is the time of year again when we try to raise awareness of breast cancer through a game. Its very easy and i would like all of you to participate. Last year we had to write the colour of our bra’s on our status. Men wondered for days what was going on with random colors on status’s. This year we make reference to our love life status as a flavor. Do not answer to this message just post corresponding word on your status and send this message privately to all the girls on your friends list. Blueberry is single, pineapple is its complicated, raspberry is I dont want to commit, apple is engaged, cherry is in a relationship, banana is married, avacado is I’m the better half, strawberry is can’t find mr right, lemon is I want to be single and raisin is I want to get married to my partner. Last time the bra game was mentioned on t.v let’s see if we can get there with this one. Please resend this to all your girly friends then update your status with your answer ONLY! DONT TELL ANY GUYS!
I hope to see lots of fruit 💝

 

FRUIT, BECAUSE WE’RE TALKING ABOUT OUR MELONS, LADEEZ! AMIRITE OR AMIRITE.

Okay, here is what I want you to do if you find this word excrement salad dressed up as awareness in your message box, hit a reply all and send them this:

Hi beautiful ladies!  It is the time of year again when we try to raise awareness of breast cancer , but not through a game. Games are so 2016. Let’s raise awareness by education and outreach – what do you say, gals? This year, how about we make reference to the reality of breast cancer, and send this message privately to all the girls on your friends list. Post the following: 113 for the amount of women and men who died of metastatic breast cancer in the U.S. every day;  33 months for the average lifespan following a metastatic breast cancer diagnosis; men for the fact that MEN actually get breast cancer too; Metavivor for the name of a non-profit organization dedicated SOLELY to researching metastatic breast cancer; October 13 for the one day out of the month of October dedicated to metastatic breast cancer, the only breast cancer that kills; 6% for the percentage of women and men diagnosed with stage 4 initially; and 20 to 30% which is the estimated amount of those with early stage breast cancer who become metastatic later on. Let’s see if we can get real breast cancer awareness out there! Please resend this to all your friends and then update YOUR status with your answer only! Okay, if you want to add more, by all means. This is serious business, and it’s not a fucking game. 

I hope to finally see this being taken seriously! 

What do you think, friends? Are you in? Let’s drown out the pink noise with real action.

The Affordable Care Act

When I was six months old, I had three benign tumors removed from my body. According to my dad, I had one on the top of my head, on my back and in my groin.  Before I could even crawl or walk, I became someone with a pre-existing condition.   During my senior year of college, I had a benign tumor removed from my right breast. Before I even graduated college, I had established a pre-existing condition for tumors in my breast.

When I graduated college, I didn’t have a job lined up and worked part-time jobs in retail. My dad kept me on his insurance for as long as he could, and when I had to get off his insurance, I had catastrophe only coverage until I got a job in my field.

For as long as I could remember, my dad stressed to me that I always needed insurance because if I had a gap, I would have an impossible time getting coverage again because of pre-existing conditions.  Since my body had the tendency to form tumors for some unknown reason. I had a pre-existing condition since I was six months old.

I have wanted to go back to school for my master’s degree, but could never figure out a way to do so while maintaining health insurance.  I could not risk having a gap in my coverage. While I did not quite understanding the intricacies in health care insurance in my early- and mid-twenties, all I knew was that I could not have a gap.  I stayed at jobs that I didn’t want to because I needed healthcare insurance coverage.

Since 2010, I have undergone more medical tests and surgeries than most have in their entire lives. I have had the following: a lumpectomy, seven rounds of chemotherapy, full thyroidectomy, 35 rounds of radiation, a laparoscopic procedure to drain an ovarian cyst, a double mastectomy, four months of reconstruction, a tissue expander exchange surgery, a superficial cyst removed from my right fake boob, and a major surgery to remove my right ovary and the aforementioned cyst that grew back and doubled in size.  In addition to all of these procedures and surgeries, I have had countless doctor’s office visits and blood draws, as well as a handful of CT scans and MRIs.

My first chemotherapy – the least expensive option and the one all insurance companies insist that doctors try first – ended with me going into anaphylaxis. The remaining six chemotherapy treatments were the most expensive ones – Abraxane

I. Am. Expensive. To. Keep. Alive.

I never asked for this. I don’t revel in this, and I would trade this body of mine for one that does not do this. Seriously, I would trade in a heartbeat. My body forms cysts and tumors – sometimes malignant but the majority have been benign – without warning or explanation. Maybe there’s a reason or condition that I have, but as of right now, I don’t know.

A refresher on the ACA and the protections it was designed to provide:

This protection gave me the most peace of mind:

“Insurance companies can’t set a dollar limit on what they spend on essential health benefits for your care during the entire time you’re enrolled in that plan.”

My insurance company cannot drop me for being too expensive. I can focus on being healthy first and foremost, not worried that the next surgery will cost me my health insurance.

This protection gave me comfort and relief:

“Under current law, health insurance companies can’t refuse to cover you or charge you more just because you have a ‘pre-existing condition’ — that is, a health problem you had before the date that new health coverage starts.”

I am not married, and I own a home. Heaven forbid I lose my job (please God, do not let this happen), I am on my own. Sometimes events happen which are out of our control. Illness and chronic conditions are not punishments for misdeeds or moral failures. Sometimes bad things happen for no reason, and that is terrifying to admit and understand. I don’t know when the next cyst or tumor is going to come. I would like to think I am done with them but history has demonstrated that won’t be the case.

If I lose my insurance but still need a surgery or treatment to get myself back to good health, I either have two options: bankruptcy caused by medical bills or just not having the surgery or treatment because I don’t have a literal money tree in my backyard.  Men and women in the U.S. are forced into bankruptcy at an alarmingly frequent rate because of medical bills.

With or without insurance, being sick is costly. Co-pays, missed time from work, gas to doctor’s appointments, parking fees, deductibles, medication, so on.

When I come across comments online from other Americans who don’t know that “Obamacare” is also the same as the ACA, or believe that people without healthcare are just lazy folks who don’t work hard enough, part of my soul dies a little. Good health is a gift, not a guarantee.  I have yet to come across someone bitching about “Obamacare” who is lower- and middle-class and have gone through extreme medical trauma and hardship.

Despite having scars from literally the top of my head to my knees, I became a marathoner. I have finished 10 half marathons, one marathon, two 10-mile races, and numerous 10K and 5K races, well as other distances.

You know what made all of those races possible?  Answer: access to healthcare, which includes surgeries, medication, chemotherapy, radiation, scans, whatever.  If I have the ability, then I am always going to strive to be a runner first.  I know I’m always going to be the one who has “the problems,” or who seen as “sick all the time.” I don’t want to be that person. I want to be a runner who kicks ass and takes name.

If the politicians allow lifetime caps and pre-existing conditions to come back, then my dreams of running marathons in cities all over the country or world will disappear.  I want to live a life full of purpose, goals and accomplishments. If my insurance company is free to impose lifetime bans or drop coverage for me for whatever reason they want, then I will be the person that “Obamacare” opponents hate: someone on Medicaid.

Damned if you do, damned if you don’t.

We Need to do Better

Most readers of Get Up Swinging know that my number one priority to my breast cancer is more money for research for metastatic breast cancer. You know, I do it for my mom, who died at age of 40, only two months shy of her 41st birthday. I’ve also had breast cancer myself, and I live with the knowledge that my disease can have a metastatic recurrence any time for the rest of my life.

All of that’s true, but there’s more to why I do what I do.

For my friends who have metastatic breast cancer and young children, I know what it’s like to be that young child. I see the pictures they post, and when I see the early elementary school children, my heart breaks. I see myself in those faces. When you’re a kid, you know something sad and serious is happening but you can’t quite understand actually what is going on with the adults.

I read about my friends’ anguish about just wanting to see their children grow up. I think to myself, “These are the thoughts my mother had as she endured treatment after treatment with three children in elementary school.” I can understand their fear in a way because I am frightened of a recurrence and what is my greatest source of anxiety, is their day to day life.

I know what I’m about to write is going to scare the almighty shit out of my metser friends: I do not have any solid memories of her. I would describe them more like snippets of a dream I’m trying to remember but cannot with any certainty. Years ago, my dad played a recording of her and he had to tell me which voice was hers. I look like her and have the same disease, but I don’t remember her. She’s more a presence and not really a reality. I imagine this was something she feared and did not want to happen, but it did.

There’s a mom-sized hole in my heart that appeared when she died. It’ll never go away. I can fill it up with other sources of love and happiness but it’ll never quite fill the hole left behind by her death. It certainly shaped the person I am now, and I often find myself guided by the thought, “What would Mom would have done?” I also find asking myself when I’m blogging or sending out tweets advocating for change, “I wonder if she would be proud of me.”

When my friends pray for their current treatment to hold out for as long as possible, I think about my high school and college graduations, which she did not see. She did not even see me reach middle school. Those living with metastatic breast cancer want to see their milestones. Research into better treatments is the only way these moms and dads can see the milestones, big or small, happen. Metastatic cancer is smart and cunning, and it’s constantly thinking of ways to make it so the current line of treatment fails for the patient.

Holley Kitchen had a goal, which was to see her youngest son turn 5.  She missed her goal by two days.  Two young boys will be growing up without their mother, and that’s something I know all too well.  Please read Susanne’s blog because her perspective drives home the frustration.

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Credit: Metathriving.com

To my metser friends with children, please know that your children’s memories may fade to what mine are now, but know that they will never forget the love. I don’t remember my mom, but I know she loved me and my brothers more than anything. Your children will know that you did not go willingly and understand the ugly reality of cancer. Please please, do not avoid being in pictures with them if you can help it. You may think you look awful but your children will only see you. Trust me.

I know what it’s like to have cancer and live with the fear of recurrence. I also know what it’s like to grow up without your mother and have no solid memories of her. I would never wish either on my enemy.

That’s why we need to do better. Donate to Metavivor. Don’t buy pink ribbon products. Listen to those who have the most to lose because I promise you, they are the ones telling the truth, not the ones who want to sell tchotchkes.

Why I Am Still Anti-Komen

 

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation.  It was shared, pinned, tweeted, discussed.  While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co.  I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand.  To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited.  That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change.  Today would have been my mother’s 69th birthday.  She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses.  Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help”  Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community.    Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy.  This is another example of why I think you are an evil woman.  You don’t get it, and you don’t want to get it.   What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families?  All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people.  But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy.  Pink ribbons do not matter.  The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter.  Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter.  They should be the priority  and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths.   The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that.   We need change.  Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options.  It’s 2015, and this is the first time they have done this.  Why has it taken so long?  Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October!  What the deuce?  Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

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I guess they listened to others also going, “Um, what?  This is only an option until October 31?” and changed their minds.  If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research?  Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades.  Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago?  The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

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Ugh.   Ugh.  Ugh some more.

The five-year statistic is bull, it’s just plain bull.  It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer.  I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning!  Well done, everyone.  Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years.  The cancer doesn’t just peace out once it’s been five years since your initial diagnosis.  We have been led to believe that five years is this magical number and you showed cancer who is boss.  Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic.  Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015.  If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018.     Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis.  You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

Frankly, I’m tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection.  It’s buzzkill.  It detracts from the message that mammograms are unilaterally helping save lives.  Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that.  Early Detection.  And early detection is not a guarantee.

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium.  She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

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Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary.  Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young.  Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs.  There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.?  Welp, I want to highlight organizations that are awesome and making a big roar out there.  Please consider throwing your support behind these organizations.

  • Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.
  • The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4.  It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober.  Terry Arnold over at IBC Network is a tireless advocate.
  • Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved.  Help their voices be heard.  You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done.  Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time.  Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease.  Now that the incidence rate is equal, well, does that seem like good news for women of color?  Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

How hard is it to tell the truth?

Not too long ago, a commercial for a local healthcare system in Western Pennsylvania caught my attention for the “statistic” it features at the very beginning.  The commercial is for the healthcare system’s 3D mammography services.

As soon as I read that “99 percent of women will survive breast cancer if detected early,” I shouted, “YOU’RE LYING.”  Unsurprisingly, the source of this so-called statistic is the Susan G. Komen foundation, though I have no doubt that Excela took the statistic out of context to suit its own purposes.  Excela Health wants to get as many women into the doors for its Walk in Wednesdays, and what better way than to keep perpetuating the myth that mammogram saves lives or early detection saves lives.  Who cares if it completely disregards facts, science or context, right?

Let me count the ways in which the commercial is as wrong as Donald Trump as president (seriously, dude is a clown).

1.) Those diagnosed with early stage breast cancer may go on to become metastatic, though the exact number is unknown. 

The Metastatic Breast Cancer Network estimates that 20 to 30 percent of those diagnosed with early stage breast cancer go on to become metastatic.  (Source)  We don’t know this statistic for certain because of this problem, as stated in Laurie Becklund’s op-ed “As I lay dying”:

I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.

We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them [emphasis mine].

 

How can any healthcare network make the assertion that 99 percent of women will survive if their breast cancer is diagnosed given the lack of information?  They can’t, and they should not.  It’s irresponsible for any health care provider to even give the impression that 99 percent of women will survive breast cancer if diagnosed early, especially without giving a time frame (context!).   Ms. Becklund died of metastatic breast cancer (source).

2.)  Excela Health is perpetuating the myth that mammograms save lives.   For years, there has been so much controversy regarding the effectiveness of mammograms.  Do they save lives, or have they contributed to the over-diagnosis of breast cancer?

Back in 2009,  the U.S. Preventative Services Task Force recommended that mammograms should begin at 50, instead of 50, and should occur every two years, instead of every year.

September 23, 2013 CBSNews.com article reported: 

A new study shows that women between the ages of 50 to 74 that get mammography screenings every two years may be at no more risk for advanced-stage breast cancer and at a lower risk for false positives, than those who get tested annually.

The results, which were published on March 18 in JAMA Internal Medicine, follow the 2009 recommendation by the U.S. Preventive Services Task Force that advocated for biennial mammography for women in this age group instead of the previous suggestion of getting screened every one to two years.

However, the study authors pointed out that the original recommendations only looked at age as a factor for influencing breast cancer risk. This new study factored in age, breast density and postmenopausal use of hormone therapy (HT).

According to a February 12, 2014 CBSNews.com item:

A controversial new study has found that annual mammograms may not help reduce breast cancer deaths and may increase the number of women unnecessarily getting treated for breast cancer.  The Canadian study tracked almost 90,000 women for 25 years, and found that having an annual mammogram between the ages of 40 to 59 did not lower the chance of dying from breast cancer more than having a physical examination.

The study, which was published in BMJ on Feb. 11, disconcertingly showed that 22 percent of invasive breast cancers were overdiagnosed by mammography, meaning the tumors would usually have been too small to cause symptoms or become life-threatening.

If different task forces and non-profit agencies cannot even come to the same conclusion regarding mammography, that speaks volumes.    Some might argue that, “Well, hey, the mortality rate is declining, so of course mammograms save lives?”  Well, are mammograms saving lives or is targeted therapies and better treatment contributing to this (source)?

3.) Without context, the 99 percent statistic is just misleading.

The American Cancer Society’s 2013-2014 Breast Cancer Facts & Figures (found here) states:

Based on the most recent data, relative survival rates [i.e., an estimate of the percentage of patients who will survive for a given period of time after a cancer diagnosis] for women diagnosed with breast cancer are: • 89% at 5 years after diagnosis • 83% after 10 years • 78% after 15 years

Relative survival rates should be interpreted with caution. First, they do not predict individual prognosis because many patient and tumor characteristics that influence breast cancer survival are not taken into account. Second, long-term survival rates are based on the experience of women treated many years ago and do not reflect the most recent improvements in early detection or treatment.

The same Facts & Figures document also states that five-year relative survival is also lower among women diagnosed with breast cancer before the age of 40 (yay…. me).   “This may be due to tumors diagnosed at younger ages being more aggressive and/or less responsive to treatment.”  You can’t make a blanket statement about a disease that is so complex.  Cancer doesn’t work that way, and breast cancer certainly does not work that way.  Breast cancer is not just one disease – it’s many.

4.) How dare anyone, especially a healthcare system provider, imply, insinuate or just outright state that those with metastatic disease weren’t proactive in their health or didn’t do all that they can to prevent a metastatic breast cancer diagnosis.   

An estimated 6% to 10% are diagnosed stage IV as their initial diagnosis (source).  What does that mean?  The remaining percentage were diagnosed with breast cancer (stage 0 through III) at some point prior to a metastatic recurrence.  Believe me, they were getting routine screenings (such as mammograms, MRIs and/or PET scans) from their oncologists or other healthcare provider.   After their initial diagnosis, those with estrogen (ER) + breast cancer take some form of hormone suppression medication (such as Tamoxifen, Arimidex and Zoladex).

Lisa B. Adams, who died in March 2015 from metastatic breast cancer, did absolutely everything to reduce her risk of a breast cancer recurrence after she was diagnosed with stage II breast cancer in December 2006.  She wrote on her website she had the following done: double mastectomy, chemotherapy (4 rounds of Adriamycin and Cytoxan two weeks apart followed by 4 rounds of Taxol two weeks apart), Zoladex injections to combat her ER+, PR+ breast cancer and later had a salpingo-oophorectomy (removal of my Fallopian tubes and ovaries) in December 2008.   She received a metastatic breast cancer diagnosis in 2012.

She caught it early!  She.  Caught.  It.  Early.   Many women (and men, of course) caught their breast cancer early, and later died of the disease, and that number is not 1 percent.

Just because someone has been diagnosed with stage IV breast cancer, it certainly does not mean that they did not do everything to prevent such a diagnosis.  Some tumors are more aggressive than others, and can be fast-growing.  Inflammatory breast cancer does not present with a lump.  It is quite possible to have a clean mammogram and then three months later, have a later stage breast cancer diagnosis.  To say otherwise, is downright offensive to those with stage IV breast cancer.

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Excela Health isn’t alone in this ever-present pink-washing cycle, perpetuating myth after myth.  However, given that they are an actual healthcare system, then they should be held to a higher standard.  I would love to think that the hospital I’m going to for my healthcare isn’t producing commercials with such garbage like this.  Breast cancer is horrible enough without adding myths and falsehoods on top of it.  How hard is it to tell the truth?

 

MIA

For the last couple of months, I have been extremely busy with work, photography jobs and running.  During all that, I came across a lump in my abdomen which gave me pause.  I initially felt the lump in April when I was participating at Atlanta’s Ragnar Relay.  The small lump is located near my left ribs, and the very thought of a lump near my ribs worried me.  Still, I gave it a wait-and-see month period because the lump presented without any pain.

After a month went by, I decided to be a good little cancer patient and get the lump checked out.  When you’ve had cancer, you just can’t let unexplained lumps go unchecked.  Unfortunately, my beloved breast surgeon retired last year, which meant finding a new doctor to add to my doctor roster.  In a perfect world, my beloved breast surgeon would stay on forever and ever, but alas. You have to roll with the changes.

I ended up seeing a surgeon that looked to be my age or even younger, which threw me for a loop.  All of my surgeons have so far been old enough to my grandparents.  Grey’s Anatomy would lead you all to believe that all surgeons look like Patrick Dempsey or Katherine Heigl.  In my experience, all the surgeons I have had are more like an episode of Golden Girls (without the sass of Sophia, unfortunately).

The surgeon felt the lump and immediately told me that the lump was just a lipoma (i.e. a benign tumor of fatty tissue.).  Oh thank God.

giphy

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During that week of my appointment, I felt anxious and worried.  I also felt angry.  Why must my body keep forming unexplained lumps?  Is that my super power after all this radiation and chemotherapy?  More lumps and tests to see what my insides just formed now?  Why can’t my body flourish and create actual life, not just the occasional tumor?  I can run a dozen half marathons, but now and then, I’m reminded that life isn’t always fair and my health could possibly be taken from me.

I consider myself blessed and very lucky that this turned out to be nothing.  If the lipoma gets bigger and causes discomfort, then I can have it removed.  It’s been almost five years since my diagnosis, and I have continued to remain no evidence of disease.  I thank my lucky stars every day, and when the next scare comes along, I will deal with that one, too.

In the meantime, I want to focus on those who haven’t been as lucky as me.  Those with metastatic breast cancer need to be at the forefront of every conversation when it comes to breast cancer.  How can we help those living with stage 4 to keep their disease at bay and live years without any disease progression?   Every year, approximately 40,000 women (and men) die of this disease, and that needs to change.  Pink is not a cure, and 108 die every day.

Mets Monday: Sharon

For this week’s Mets Monday story, please meet Sharon. Before her diagnosis of metastatic breast cancer, she already had non-Hodgkin’s lymphoma. She reached out to me after my friends Carolyn and Susanne posted messages on their Twitters and Facebook asking others for more Mets Monday stories.

What was your age and diagnosis (er+, etc.)? How was it discovered?

I went for my yearly mammogram on October 22, 2013. The tech asked me why my left breast was hard. I told her I’d noticed it too and thought I pulled something at the gym. The radiologist looked at the films and saw a “shadow.” They scheduled me for a diagnostic mammogram with the teeny-tiny paddle and LOTS of pressure and an ultrasound on October 28, 2013. I was told it looked like something was pulling my breast tissue and they wanted to do a core biopsy to be safe, but were sure it was “nothing to worry about.” On November 14, 2013, an ultrasound guided core biopsy was performed. On November 6, 2013, my primary care doctor called and told me the biopsy showed infiltrating lobular carcinoma. She wanted me to see a breast surgeon to discuss the results further and plan the next steps. The breast surgeon told me the tumor was er/pr+, her2-, grade 3. She then scheduled me for a breast MRI on November 10, 2013 and gave me the name of the one and only plastic surgeon that worked with the hospital so I could set up a consultation. She also told me she’d like to work with my old oncologist to discuss treatment options. I told her I was not keen on seeing her since I had been seeing her every three months for follow-up for my lymphoma and she totally missed this, as well as ignoring my complaints of increased fatigue and bone pain in my lumbar and cervical spine. She told me the fatigue was a lasting side effect of chemo and that I was getting old and the pains were just arthritis. She also did a thorough exam of my breasts and abdomen every time I saw her. I didn’t do well on the MRI. The machine was malfunctioning and was very hot and my chest was killing me pressed against the plastic stand with holes for my breasts. The heat and pain was so bad, I asked them to stop the MRI because I was going to be ill. They told me no. I said, OK, you can clean the vomit out of the machine. They shot me out of there like a cannon and ran in with a pan which I proceeded to fill. End of MRI. By this time, I’m noticing that my left nipple is starting to invert. I’m thinking, “This is not good.” The breast surgeon schedules me for yet another core biopsy – same results. I’m thinking about the definition of insanity that I learned long ago. Meanwhile, I’m waiting for my previous oncologist’s office to call me for consultation. The breast surgeon called her after the MRI and I was discussed on a “tumor” board. It took a full two weeks for the oncologists office to call (on November 25, 2013) and they wanted me to wait another week and go to see her in an office not where I work, but 120 miles round trip from my home. I had a bad feeling about the progression I was seeing, I could now feel a large mass in my breast. I also did a self exam in front of the mirror (all my self exams were done in the shower like I’d been taught). When I lifted my left arm the entire outside of the left breast caved in. I called Cancer Treatment Centers of America. My first contact wanted to wait a couple of weeks to get me in for a second opinion so they would have time to get all the tissue and reports from the breast as well as the lymphoma. I told him I was certain it was in my best interests to see someone sooner rather than later. My husband and I saw the intake oncologist on November 29, 2013, the Friday after Thanksgiving. The rest of the appointments were not scheduled until Monday and Tuesday. He asked why they had put me through two biopsies when it was evident that the tumor was aggressive. I told him is guess was as good as mine. He told us he wanted us to have a PET scan the next day. My husband and I had intended to go home and stay overnight on Sunday, we had no clothes. He agreed to schedule the PET scan for Sunday. On Monday, I got the results. Stage IV infiltrating lobular carcinoma with “innumerable” mets to the cervical, thoracic and lumbar spine and “a few” mets to the sternum. I was 54 years old, post menopausal due to early onset menopause from chemo in 2009.
 Sharon

 

What is life like a metser?

At first, it was overwhelming and way too much to process. The person at CTCA who gave me the diagnosis was a surgeon, not a medical oncologist and he did everything CTCA doesn’t stand for. He showed no respect or compassion and was very blunt. I almost left in search of another breast center, but my hubby prevailed and asked me to give the medical oncologist a chance. I’m glad I did, I couldn’t have a better oncologist. But, I was so upset I vomited through all my appointments on Monday and cancelled the Tuesday appointments. I didn’t stop until Wednesday. While I was there, the MO gave me a shot of Xgeva, and a prescription for Anastrozole. The naturopath recommended supplements and gave written instructions to my husband. I scheduled an appointment for March. Now I’m living with a chronic disease. I don’t know how long I’ll be here, but I do know women are starting to survive 10 years or more. I’m hoping to be one of them. The Anastrozole is taking a toll on me, but it’s also kicking the cancer’s butt. At diagnosis, my breast tumor measured 8 centimeters. In March, 2014, it was 1 centimeter. I had a PET scan in July and NONE of the mets were active. My December PET showed one “hot spot” – L4, where I also have some of my arthritis. I do what many of us do: work to educate myself, to be my own advocate, find others who have shared experiences and seek their counsel, give support and hugs when I can and learn to accept them back. I have the standard “Mom” bucket list…I have one son and I want to see him with someone he loves with all his heart who loves him back. Checked that off, he’s marrying a wonderful person in November of this year. Now I want to see my first grandchild. Who knows, if people start spending money on research, I may see that grandchild grow.

Before your diagnosis, would you say you knew anything about breast cancer?

I have dense breasts, so this wasn’t my first rodeo with a biopsy. I had a stereotactic biopsy of my right breast when I was 40. It was pre-cancer (hyperplasia) and has never progressed. I got mammograms every year, did self exams every month. I wish I would have known to hunt for lumps in the shower but look for dimples in front of the mirror. After diagnosis, I did a little experiment. I asked close friends with large breasts if a) they did monthly breast exams (they did), and b) if they ever stood in front of a mirror and held up their arm and looked at the corresponding breast (they did not, but you bet they do now!). The only person that might have seen this sooner was my oncologist. My arms were over my head every three months, I complained about increased fatigue and pain in my cervical and lumbar spine, but she never connected anything. I broke two ribs doing nothing, the oncologist said I fell I just didn’t remember (I didn’t). My primary care doctor took me at my word and sent me for a bone scan (lymphoma loves bone marrow), but it only showed the broken ribs. I remember my oncology nurse well. She told me at the first infusion when I had an allergic reaction to one of the chemo drugs that if I had to have cancer, large B cell non-hodgkins lymphoma was the one to get. Fast growing, so chemo is perfect for it, but not too aggressive so there is no time to put it in check. She then said, “At least you don’t have breast cancer. You are never cured of that.” How prophetic. So I still have my breasts, I will probably never have chemo and I’ll just run through the list of Aromatise inhibitors until they no longer work, hopefully far into my future. So no, nothing prepared me for this, but nothing will stop me from fighting it as long as I have the strength either.

What do you wish other people knew about metastatic breast cancer?

Women with metastatic breast cancer are some of the strongest, most giving people I know. Breast cancer, especially lobular, is very sneaky. One minute you’re fine or “cured” when actually you may be one circulating tumor cell away from a death sentence. Breast cancer is serious stuff, it’s not all pink ribbons. Being permanently disfigured and devastated by side effects doesn’t give you a pass either. What does “prevention” and early detection do? How many lives does it truly save? I watched 60 Minutes last night. One of the segments was about clinical trials to treat neuroblastoma by injecting modified polio virus into the center of the tumor. Where are the trials to CURE stage IV breast cancer? They have made great strides in palliative treatment, that’s a long way from a cure.

What makes you happy?

My family, including my dogs, and the courageous women I’ve gotten to know. I joined a closed Facebook breast cancer group before realizing that most of the women were just starting the fight. I did however meet a couple of women who were where I am or further along in the struggle. When I went to visit a friend in Jacksonville, Fla., we drove down to Cocoa Beach so I could meet one of the women I met in the group. She has rods in her spine and femur and a smile on her face and a big hug and an amazing kinship with other woman, I felt like I knew her forever. We will always be connected.

What advice would you give to someone who really wants to help those with metastatic breast cancer? (This either be for a friend, stranger or someone who had early stage breast cancer.)

Don’t write us off, we’re not done yet. We don’t know our expiration date, but neither do you. Don’t define us by our diagnosis, we’re the same people we always were, but maybe a little better…stronger, more compassionate, more hopeful, more contemplative. Don’t throw pink ribbons and butterflies in our face, there but for the grace of God go you. Fight for a cure, not “awareness” or “early diagnosis” — the life saved by that cure may be your own.

Mets Monday: Susanne

For today’s Mets Monday, let me introduce you to Susanne.  This is her Facebook page and her GoFundMe page.

When were you diagnosed (initially and then at stage 4, that is, if you were not stage 4 off the bat) and at what age?  What type of breast cancer (i.e., er+ or triple neg)?

I got the call that the biopsy came back positive for cancer on November 19, 2013. A couple weeks later, a PET scan and a second biopsy confirmed it was already metastatic to the liver. I’m ER/PR+, Her2-, invasive ductal carcinoma.

I was 39 years old.

What is life like as a metser? 

Not easy. Coping with this for me is a weird dichotomy of knowing I’m going to die, and hoping I’m going to live. I wrote a blog post a while back comparing it to a Hail Mary pass in a football game. You’ve got four seconds left on the clock, and you know you’re going to lose the game, but you still keep your butt parked on the bleachers because those Hail Mary passes can and do sometimes happen in those last few seconds.

I spend time getting things ready for my funeral, arranging a pre-pay insurance, writing the obituary, figuring out what hospice I want to use, that sort of thing. It feels like the more I plan and get out of the way, the freer I am to live my life and not worry about the details. I plan for my death so I can live.

I don’t want to die. Last night I had a sobbing, screaming panic about reality. I don’t want to die. I want to be able to stay here forever, I want to grow old with my wife, I want to see the first humans on Mars, I want to be a little old lady in a nursing home someday weirding out the CNAs and decorating my room with print outs of cat macros. I don’t want to die. It’s not fair. I have so much I wanted to do, so much I still want to do. It’s not fair.


Would you say the general public as a whole knows a lot about breast cancer?

No. They know it exists, but not much beyond that. There is awareness, but pink has normalized breast cancer to the extent that we no longer think of the dying. People are aware that breast cancer is a thing that happens, but nothing more. It’s assumed that people don’t die from breast cancer anymore, that there’s a cure now, it’s just an easy rite of passage of womanhood and it’s nothing to worry about anymore.

It’s not even a chronic, treatable disease. It’s killing us and it’s not slowed down in decades. It’s not a pink, pretty, sexy, easy disease with a free boob job. We’re dying. And the general public doesn’t really know nor care.

 What does “breast cancer awareness” mean to you?

It means making the public aware that pink ribbons don’t save lives, early detection doesn’t “cure” breast cancer, and that if you have breast cancer, you’re at a risk of metastasis, period. It’s not a disease that strikes older women; young women can get it too. It’s not even a woman’s disease, men get breast cancer, and the general public isn’t aware of this. There’s awareness of a generic concept of breast cancer, what we need now is awareness of the reality of this disease. That’s seriously lacking.


What type of misconceptions about breast cancer have you encountered?  Has anyone ever said something ignorant to you, obviously not knowing what stage 4 breast cancer is?

I’ve been told that breast cancer is a ‘rite of passage’. Someone expressed relief when they found out I had breast cancer, because it’s one of the “good ones”. I was told “your hair’s growing back, though. That’s good, right?” when I was trying to explain that I was never going to be out of treatment for metastatic breast cancer.

What makes you happy?

My wife, primarily. This has been incredibly hard on her, and we have so many regrets and fears and anger about having our years together robbed by this. She is everything to me. I fight so hard against this disease because I want to stay with her forever.

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What advice would you give someone who truly does want to help the breast cancer community, especially those with metastatic breast cancer?

Pay attention to where the money goes. Don’t assume that because it’s a pink ribbon, it helps anyone. There’s a multi-million dollar merchandising industry being built on the backs of the dead and the dying. Be aware of how little goes to metastatic research. Be aware that you’re not “in the clear” at any magical point. A cure for metastasis is a cure for you too. Be aware that breast cancer is being normalized and sexualized and turned into a profit machine. You are worth more than your breasts. Be aware that mammograms are not perfect. For younger women, they’re often ineffectual due to the density of breast tissue. Even for older women, they might not always show up on scans.

We deserve more, we deserve better treatment, better awareness, better research into a valid, viable cure which will benefit all stages. The death rate from metastasis has not changed over the last 40 years. Early detection isn’t saving lives. We need funding into research, and we need people to be more aware of what their dollars support.

But perhaps the most important thing is to let us have our voice. Don’t hush us up or put us in the corner and give us bare bones acknowledgment because we’re your worst nightmare. We’re dying. Don’t begrudge us our remaining time to have a voice to speak out against this disease. Don’t tell us we’re wrong when we point out the stats and the funding. Don’t defend those who want us to be quiet. You might find yourself walking in our shoes. If you don’t want to be where we are, let us try to make history and give us enough awareness for a shot at finding a cure.

We’ll be quiet enough when we’re dead.

Please visit METAvivor and Live from Stage IV for more information.