October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

October 29: Dumb Stuff People Say to People With Metastatic Breast Cancer

Today, I thought I'd share one of my favorite videos. It's a collection of dumb and broken shit people have said to people with Metastatic Breast Cancer. You might recognize some of them from the Bingo game card featured on October 8th. Some are just pinkwashed ignorance, while others are jaw-droppingly callous.

One of them that irks me the most is the implication that if we have metastatic breast cancer, then we must not have been taking good care of ourselves. We must not have been exercising enough, eating the right foods, drinking the right beverages, doing the right thing.

Have you heard yet about the Bald Ballerina?

At age 23, Maggie Kudirka, a dancer at Joffrey Ballet School, was diagnosed in June of 2014 with breast cancer. But not just breast cancer. She was diagnosed right out the gate with Metastatic Breast Cancer. And she is a ballerina, and has been since the age of four.

In case you're not fully aware of how much physical training and work goes into being a ballerina, this Under Armour advert highlights what a grueling sport it is. Look at the shape she's in. That's normal for a ballerina. If someone so young and so fit could get metastatic breast cancer, what does that say about the rest of us? It's not our fault.

We might still have our hair. We might "look fine". We might even be able to continue working. But that doesn't make what we have any less serious. We have Stage IV Metastatic Breast Cancer. There is no cure. There is no point where we are "finished" with treatment if we want to continue to live a bit longer. This is as serious as it gets. We might seem fine but we will never BE fine. This is our new reality.

And no, you can't have my flat-screen TV when I die. What is wrong with you?

October 26: Guest Blogger Jennifer Eisenbart

A journalist for a newspaper in Wisconsin, Jennifer Eisenbart became active in spreading metastatic breast cancer awareness after it had an impact on her own life. Note: This column was originally printed by Southern Lakes Newspapers Oct. 2, 2014. It is reprinted with the permission of SLN, and should not be reprinted further without permission.

Additional note: Zanne is the nickname I go by with my friends. It's short for Susanne, using the Americanized spelling instead of the German spelling.

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      To me, breast cancer isn’t about statistics, or stages, about survival rates, or about October and the readiness of pink-ribbon items.

      For me, breast cancer is about names.

      Judy and Sharon – two friends who helped me through some of the toughest times of my life. Both died of metastatic breast cancer; one this year, the other more than 12 years ago.

      Then there’s my friend Zanne, who I met writing fan fiction and who just got married this past weekend. Earlier this year, she was diagnosed with stage IV breast cancer.

      As she constantly reminds me, in her case at stage IV, there is no cure. She’s fighting the cancer with everything she has, and there’s a good chance she will be around for a long time.

      But there’s also the inevitable fact that the cancer cannot be eradicated, and that sooner or later, it will probably take her life. And the real kick in the pants? It won’t be the breast cancer that kills her then – not technically. It will be cancer that will have spread to her lungs, her lymph nodes, her brain, or even her bone marrow.

      Cancer goes where it can to escape and survive.

      I get behind and support breast cancer awareness in October – and the goals of finding a cure and stopping this disease from taking the lives of people I know. I remain optimistic that, perhaps in my lifetime, we will find a way to take breast cancer from the scary, incomprehensible secret to just another disease.

      In the meantime, though, I want to spread the word about stage IV breast cancer – aka, metastatic breast cancer. According to Metavivor, a site dedicated to women suffering from stage IV breast cancer, here are the facts:

      • Metastatic breast cancer receives approximately 2 percent of the funds raised for research.

      • While only 6 to 10 percent of patients are diagnosed with stage IV breast cancer, 30 percent will eventually progress to stage IV.

      • The primary focus of breast cancer research is prevention and early detection. That does nothing for the women diagnosed with stage IV – either in the beginning or later.

      Metavivor is working hard to address that discrepancy. The organization says it believes that if 30 percent of the women with breast cancer are stage IV, then 30 percent of the funds that are raised should go to stage IV research.

      It’s not a bad thought. Breast cancer in and of itself is a devastating disease. To free yourself of the disease and to have it reoccur – which means it has automatically progressed to stage IV – or to be diagnosed in that stage makes it worse. To know that so little effort is being put into stage IV research is infuriating.

      I know what my friend Judy went through the final days of her life. I know, because I was there. I watched as she struggled to breathe, finally being put on a bi-pap machine and being placed on numerous drugs to stabilize her condition.

      Those drugs were discontinued, the oxygen switched to a nasal cannula the morning she died. The reason was because there was no hope. The cancer had invaded her bones – destroyed her bone marrow. The reason she had so much trouble breathing was because her body wasn’t producing the red blood cells she so desperately needed.

      Would Judy’s end have been any different with more research – with more funds put toward stopping cancer that has reached stage IV? I don’t know. Breast cancer isn’t alone in its stage IV challenge. Any form of cancer that reaches that point is difficult, if not impossible, to cure.

      But increasing survival rates? Extending survival time? Eventually figuring out how to get rid of Stage IV cancer or keep it from reaching that stage? I think those are laudable goals. And I hope, for everyone who has reached that point, that cancer research can take that step.

October 22: Interview with METAvivor's Lori Marx-Rubiner

I interviewed METAvivor president Lori Marx-Rubiner via email. These are her replies.

When were you first diagnosed with Breast Cancer?

Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.

When were you diagnosed with Metastatic Breast Cancer?

Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.

What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.

How did you first learn about METAvivor?

NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.

When did you get involved working with METAvivor?

CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.

How much progress do you think has been made for metastatic breast cancer research?

One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

That you die from it.

I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.

What was the hardest treatment you've been through to date? The easiest?

Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)

Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!

Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.



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Thank you, Lori, so very much for taking the time to answer these questions.

Lori can be found at her blog, Regrounding, and on Twitter.

Watch her interview on Lifetime's The Balancing Act.

October 21: Interview with METAvivor's Kelly Boyd Lange

I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.

When were you first diagnosed with Breast Cancer?

I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).

When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Starting Herceptin, 2007

My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those  axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.

Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.

How did you first learn about METAvivor?

METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!

When did you get involved working with METAvivor?

I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.

How much progress do you think has been made for metastatic breast cancer research?

Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

After 2 Herceptin treatments

It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.

What was the hardest treatment you've been through to date? The easiest?

The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!



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Thank you so much, Kelly, for taking the time for this interview.

Kelly can be found on Twitter, along with METAvivor. 

Watch her interview on Lifetime's The Balancing Act.

October 18: Conversations With Cancer

Bringing in another question from Facebook today.

I've been on a kick watching House lately, and something Wilson said in an episode really sort of struck me and made me wonder. Paraphrasing here, "Once they find out you've been diagnosed with cancer, EVERY conversation is about cancer." what about reclaiming parts of a normal life? What's been easy to go back to, what's been hard to go back to? - Laura

 I think this is one of the points that divide Stage IV from early-stage cancer. With early-stage cancer, you have a chance at moving into a point of your life where cancer is a thing of the past. For Stage IV, it's always going to be there, and there's never going to be a point in your life that's "after the cancer". That makes it harder to keep the cancer from taking over your life and becoming the focus of every waking moment.

For me, getting back into writing has been hard. I was participating in 2013's NaNoWriMo when we found out, and I was ahead of the projected word count at the time. However, once the news came in, all creative energy was zapped out by the stress. I've done a little bit of creative writing here and there, but not like I used to. My writing energy has been going toward nonfiction, these blog posts and my memoir. Cancer has taken over my writing.

I do have plenty of conversations that don't have cancer as a focus, but it's still there in my mind, an underlying note. It's like any major lifestyle change. In the early days it's a Big Thing that can be overwhelming to think about, but as time goes on, it fades into the background where it's always present but not always noticed.

I focus so much of my energy on cancer because I've found passion in Stage IV Advocacy. The more I learn, the more I realize that there aren't enough voices crying out in the wilderness, we still lack the attention we need to bring in the funding to get the necessary research. It takes energy to maintain passion though, and I don't know how much longer I'll have the energy I need to do this. So I'm focused on getting as much done as I can before I have to take a rest.

I miss my old life. Sometimes I want to go back to the days when I was busily typing away and making word count, before my world turned upside down. I'd like to be able to live a beautiful life of denial sometime, and maybe then I can go back to writing fiction. I can't escape reality right now because my best chance at surviving my reality is advocacy and raising funding for Metastatic research that might benefit me down the line.

Yes, I admit that part of my motivation is entirely selfish. I don't think anyone with metastatic disease is fighting for awareness and research funding simply for other people. If we don't live long enough to see a viable treatment come our way, so be it, and our fellow metsters who survive us might still benefit. But it would be nice to see some results from our hard work, you know? We'd all like to live. There's nothing wrong in that.

My life changed so dramatically, I went from working to not working in order to keep the health insurance I'm on, and then I went from constant treatment to once a month injections. It was difficult to get back into a normal pace for life and find the energy to do things and accomplish things and interact with people for a while. After I finished chemo, I spent well over a month doing little but binging on Hulu and staring off into space. In some ways, my cancer has helped me find a focus to get back into life again by fighting for awareness, and sparked passion in me again.

So I guess that quote holds some truth. Once you have cancer, every conversation is about cancer. It's exhausting though, and I look forward to running some of the heat off this passion so I can take a vacation from cancer.

October 10: What Not to Say - Part 3

Welcome to day three of What Not to Say to a person with Metastatic Breast Cancer. As I've said, this is not to guilt anyone who's said these things with good intentions, but to educate. Even I was saying them to myself back when I still had the pink blinders on.

"Why can't they just do surgery?"

It seems to boggle people when they find out I've not had a mastectomy and am not planning to do so. Wouldn't cutting the cancer out get rid of the cancer? Not in the case of Stage IV. The cancer is already spreading through the circulatory and lymphatic systems, and just because it doesn't show up anywhere else only means that it's not big enough there yet to detect. Cutting out bits and parts of the body as the cancer rears its head wouldn't actually accomplish anything in curing the cancer or getting it under control, but instead put the body through unnecessary additional strain and raise the risks of infection or organ failure. There are studies that indicate removing the primary mass can actually help trigger the growth of additional metastasis, and overall does nothing to improve the chances of survival.


"How can it be breast cancer if it's in your liver/lungs/bone/brain/etc?"

This is what Stage IV is. The breast cancer cells break away from the main tumor and are dispersed through the body, looking for somewhere else to take root. The four most common sites for breast cancer metastasis are the brain, the bones, the lungs, and the liver. It is not limited to those four places, but those are by far the most common, and it's likewise not unusual to have metastasis in more than one location. Prognosis can depend on where the cancer takes root; bone metastasis is thought to be the easiest to bring to a stable state for a longer stretch of time, but it comes with it the side effect of weakened bones and an increased risk for fractures and joint replacement surgeries.

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Part One
Part Two
Part Four

October 9: Things Not to Say - Part 2

Welcome to the second post out of four installments of things not to say to someone with metastatic disease. As I said yesterday, I understand many of these comments are spoken with only the best of intentions, and it's not my goal to shame anyone for saying them. I admitted to saying one of them myself yesterday. It's what's busted with all the pinkwashing.

"Have you tried this special food?"

 I'm not even a year away from my diagnosis, and I'm pretty sure I've already heard it all. Hemp oil cures cancer. Superfoods cure cancer. I just have to eat this or take those pills and I'll be okay. Seriously, I wish it were that easy. There is no particular food or natural ingredient or medication that will cure cancer. I have no doubt that eating thee foods help supplement and support the body during and after treatment and give us an extra boost of nourishment, but a cure? Far from it.


"You need to make your body hostile to cancer by following a special diet."

There's a current theory floating around that cancer thrives in an acidic (low pH) environment, and in order to beat cancer, you need an alkaline (high pH) environment. It's based on lab studies, and while they are not inaccurate, the findings only apply to cells in an isolated lab setting. Altering the body's cells to be less acidic is virtually impossible to accomplish. Furthermore, home-testing kits which measure the pH balance in urine output do not reliably relay information on the body's pH levels. Excess acid or base is excreted and the body maintains its pH balance. If there were actually a known diet that worked, there would be a paper or five published by the likes of MD Anderson or Sloan-Kettering. Finding a treatment like that would be quite the feather in any doctor's cap.


Sugar feeds cancer cells!

This theory took root because of the way PET scans work.  Positron emission tomography (PET) scans use a small amount of radioactive tracer, typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy, such as cancer cells, absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true. There's a reason you have to sit very still while the tracer disperses through your body. Any kind of activity will result in higher energy use. All cells use glucose, all cells need glucose. Cancer cells are typically dividing at a faster rate than most of the surrounding cells (which is why chemotherapy works) but cutting all forms of sugar out of your diet is not going to stop the cancer cells from growing and multiplying.

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Part One
Part Three
Part Four

October 6: Milestones

Mothers often think about seeing their child's "firsts" - First day of first grade, prom, graduation, wedding. For many, these are contemplated with the outlook that it's a given they'll be there.

Many young women with metastatic disease are mothers. For them, these milestones come with an extra prayer. They'd like to live long enough to see them. To see their young child start their first day of first grade, starting high school, going to a prom, off to college, getting married. For many of them, the reality is that they won't be able to live to see these things.

The ones they do experience, they're all the more precious for it.

What would it be like to have to live your life knowing that you probably won't survive long enough to see your little child start high school, let alone graduate or go to college? Knowing that this beast will rob you of these experiences, these milestones?

That's what it's like to live with Metastatic Breast Cancer. Even if you're stable now, each holiday, each birthday, it might be the last.

I recall one woman in a Facebook group for metastatic breast cancer. She went on a camping holiday with her husband and children to build memories for them over Mother's Day weekend, and during this time, she posts to the group with reports of feeling worse, with her eyes turning yellow. A week later, we learned that we lost her. That's how quickly things can change.

Each moment is precious, borrowed against the threat of the beast. We live knowing full well that we're dying.

It's not romantic. It's not Hollywood. It's not something beautiful and poignant and touching. It's rough and it's painful and it's unfair.

We are living on borrowed time, and there's too many milestones to live. Too many that are being robbed from us for lack of treatment. Effective treatment that can keep this beast at bay longer. Cancer is a living thing, it grows, and it adapts. Treatments which worked for years can suddenly become no longer effective, and there is progression. In the end, there is always progression. And there's not enough research for more treatments, more options when we run out of what's currently at hand. We turn to clinical trials and pray we don't get a placebo, pray that it works, in an effort to make it to the next milestone.

That's the reality of metastatic breast cancer.

October 4: Did You Know...

Did You Know...

...metastatic breast cancer is the leading killer of women aged 35 through 55? The recommended age for breast cancer screening is 40. This means that women are developing, being diagnosed with, and are dying from breast cancer long before the medical field says they need to be worrying about it.

They do recommend to start screening earlier if you're from a family with a high risk for breast cancer. But that's only a small percentage of them. What about the rest of us, who have no known history of breast cancer in the family? And yet we develop the disease before the age of 40?

I'd say that breast cancer screenings need to start earlier, except mammograms are not as accurate on younger women due to the density of the breast tissue. Not all forms of breast cancer result in a lump, and in younger women, oftentimes by the time the lump is able to be detected, it's already advanced.

We have a test for gene markers that can tell us if we're more or less likely to develop breast cancer. Angelina Jolie put this on the forefront of the news. The BRCA 1 and 2 gene mutation, if present, results in a far higher risk of developing breast and ovarian cancer.

There's a few problems with that, though. For one, the tests can be expensive, and if your insurance won't cover them, the price tag is high enough to keep most women from being able to afford them. There are different types of BRCA testing, ranging in cost from $475 to about $4,000. When you're already paying for cancer treatment and numerous doctor visits, it's hard to find that level of spare change.

Only 5% of breast cancers are due to the BRCA 1 or BRCA 2 gene mutation. That means 95% of the breast cancers out there were not caused by any known genetic factor. I will stress the word 'known'. There's a lot of research that still needs to be done to identify genetic factors for breast cancer, and to make these tests more accessible to the average woman.

My own test results came back negative. I have only one known relation with a history of breast cancer, my great-grandmother on my mother's father's side. I had no reason to start screening earlier, or to suspect that a lump, itchy and painful like a cyst I had before, was anything less than another cyst.

We don't know enough about breast cancer. We pour all these resources into early detection programs and mammogram screenings, and not enough into research for a cause, research for viable, working treatments that can lead to a Stage IV patient being declared No Evidence of Disease. Why are so many women get breast cancer at earlier ages without any warning? Why do we not know this yet? More funding needs to go to research, so more gene markers can be discovered.

With all the awareness, Breast Cancer is still the leading killer of women between the ages of thirty-five and fifty-five. That is unacceptable.