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 5: What Is Breast Cancer?

Breast Cancer is a huge umbrella that covers so many different types and variations, all of which can impact treatment and prognosis.

Ductal Carcinoma accounts for 80% of the breast cancers out there. It can be Invasive, or "in situ", when it hasn't left its area or origin to invade the surrounding tissue. This is the type that forms the classic lump, although depending on the density of the breast tissue, it's not always easy to find.

Inflammatory Breast Cancer

Lobular Carcinoma is the second most common type of breast cancer. Like Ductal, it can be either invasive or in situ. It does not always form a firm lump, and it can be elusive in mammogram screenings.

Inflammatory Breast Cancer does not form a lump at all, but has thickening and painful redness of the breast tissue. It can frequently be misdiagnosed as mastitis. It is usually advanced to stage III or IV by the time it's properly diagnosed. It is one of the more aggressive forms of breast cancer.

Paget's Disease of the Nipple is a rare form of breast cancer, accounting for just 1% of all breast cancer cases. It begins in the ducts and spreads to the skin of the nipple and areola. It presents with symptoms which can include crusted, scaly, red, or oozing skin of the affected area, as well burning or itching. 

This is just a short list, there's several more forms of breast cancer out there, although they are rare, accounting for 1-2% of the diagnosed cases.

On top of the different types of breast cancer, they can have different characterizations as well. They can be hormone receptor positive, growth factor receptor positive, hormone receptor negative, and so forth. A woman can be Triple Positive (ER/PR+ Her2+), Triple Negative (ER/PR- Her2-) or a mixture (ER/PR+ Her2-) These impact the various treatments available and how effective they might be. Triple Negative is one of the harder forms of breast cancer to treat because it has the least amount of available treatments which are successful.

There's also staging, which is another variable to account for in each unique case of breast cancer. Factors which impact on the staging include: the size of the tumor within the breast, the number of lymph nodes affected, and signs indicating whether or not the breast cancer cancer has invaded other organs within the body.

Stage 0 - There's slight differences between DCIS and LCIS in this stage. Ductal carcinoma in situ (DCIS) is a non-invasive cancer where abnormal cells have been found in the lining of the breast milk duct. In Stage 0 breast cancer, the atypical cells have not spread outside of the ducts or lobules into the surrounding breast tissue.  Lobular carcinoma in situ (LCIS) at Stage 0 generally is not considered cancer. Although it has carcinoma in the name, it really describes a growth of abnormal but non-invasive cells forming in the lobules.

Stage 1 - In this stage, cancer is evident, but it is contained to only the area where the first abnormal cells began to develop. The breast cancer has been detected in the early stages and can be very effectively treated. It is divided up into Stage 1A and Stage 1B. With 1B, there is cancer evidence in the lymph nodes.

Stage 2 - Like Stage 1, it's divided up between 2A and 2B. With 2A, no actual tumor is associated with the cancerous cells, or the tumor is less than 2 centimeters and less than four auxillary lymph nodes have cancer cells present, or the tumor is between 2 and 5 centimeters and has not yet spread to the lymph nodes. With 2B, the tumor is between the 2 and 5 centimeters and has spread to less than four axillary lymph nodes, or the tumor is larger than five centimeters, but has not spread to any axillary lymph nodes.

Stage 3 - The cancer has spread beyond the point of origin and into surrounding tissue and lymph nodes, but has not yet appeared anywhere else in the body. Sometimes the term 'advanced breast cancer' is used to include Stage 3. It is divided into three groups: Stage 3A, 3B, and 3C. The difference is determined by the size of the tumor and whether cancer has spread to the lymph nodes and surrounding tissue.

Stage 4 - This means that the breast cancer cells have spread to other areas of the body, such as the brain, bones, lung and liver. It is at this point considered incurable, and the goal of treatment is to extend life as long as possible. You can have Stage 4 Breast Cancer and not be actively dying, living with it more like a chronic condition, although it's considered a terminal progression.

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.

October 3: Too Young or Too Male?

This post doesn't explictly focus on metastatic disease, but instead highlights a disturbing reality of breast cancer. It's not just for women after menopause anymore.

With an increasing frequency, young women are being diagnosed with breast cancer. And in younger women, it's usually more aggressive, more likely to become advanced.

Girls who should be focused on prom and graduation from high school are getting diagnosed. Even tweens are getting diagnosed. While young women with breast cancer are still the minority compared to the older end of the spectrum, they exist. And it can occur at a shockingly young age.

Mammograms start at age 40 because they're not effective for screening for breast cancer in younger women. The breast tissue is too dense for a clear reading. By the time breast cancer is detected in young women (a lump for ductal carcinoma, a thickening of the tissue and/or lumps for lobular carcinoma, red irritated inflammation of the skin for inflammatory breast cancer) it is usually advanced. Lymph nodes swell and tests are run, and by that time it's already beginning to circulate through the body, increasing the risk of metastasis.

In my own case, I'd had cysts before which opened and drained on their own. When I felt the lump, it was painful and itchy at the time, and in the beginning, I couldn't always find it. It seemed to come and go around my menstrual cycle, and as I said, it hurt and itched. There were no other warning signs in the breast, no dimpling or changes besides the lump, and symptom-wise, it pointed to a cyst. I was under 40, and there was little concern even from medical professionals that it was anything more than a cyst. It was only when I finally went in to have it drained that a biopsy ended up being ordered and confirmed it was actually breast cancer. By that point, it was advanced and had spread to my liver.

If you have breast tissue, you can get breast cancer regardless of your age, or even your gender. Men are getting diagnosed with breast cancer too, and because it's so often promoted as a female disease, they don't realize it, and by the time they're diagnosed, they're often already at Stage III or IV.

The worst part is, because breast cancer is so often viewed as a woman's disease, men with breast cancer can face ridicule and mockery, shaming them into silence. Even if they suspect they have breast cancer, this shame can prevent them from seeking medical help until it's far too late. And there are not enough men who have been diagnosed in order for there to be a proper protocol for treating men.

Anyone remember the Secret antiperspirant commercials and their slogan? "Strong enough for a man, pH balanced for a woman"?  Men and women are different on so many levels, and the treatments for breast cancer that are effective on females don't always work as well on men. There is so little known that they lack decent treatment options.

The pink ribbon has done a great deal for spreading awareness, but unfortunately it has done so at the expense of far too many.

Men.

Children.

Metastatic disease.

The pink ribbon doesn't cover those, doesn't acknowledge it. We might make up a rarer percentage, but we are still a percentage that exists, and that needs to be known.

Wedding Photos

Wish Upon a Wedding has released some of the official pictures from Marla Austin Photography today. I want to share a few of them with all of you.

Tis Me! And I love my wig.

The love of my life.

From L to R: Rebecca F., me, Shari (officiant), Jen, Sara L.

First kiss!

From James Avery Jewelers. In Hebrew it reads "Where you go I will go from the Book of Ruth

Jen's bouquet has green carnations, mine has pink. Mine was also in METAvivor colors.

October 2: The Difference

What is the difference between earlier-stage breast cancer and Stage IV?

The biggest difference is the prognosis. Once breast cancer becomes Stage IV, it is considered treatable, although not curable. There is no cure for cancer that has spread beyond the breast tissue. There is no chance of being able to declare themselves cancer-free, or cured, or have an end to treatment.

People in stages 0-III can reach a point of being cancer-free, and if they maintain that long enough, they can cease treatment and resume their previous life with just the occasional scan to remind them of the cancer.

People with Stage IV breast cancer do not have the option of stopping treatment and still surviving. We can and do cease treatment, but only when it is no longer effective, and the side effects diminish the quality of life to the point it is no longer worth it. When we stop treatment, it's usually when we enter hospice.

This is a rest-of-your-life thing, and the average rate of survival for Stage IV breast cancer is only three years. There are people who live ten, even twenty years past their diagnosis, and people who have only a few short months to come to terms with reality, but the average is three years. The number of survivors past the three year mark starts to drop the further away you get.

The difference is, the diagnosis is terminal. It's incurable. There is no 'end' to the treatment or the disease. Cancer is your new reality, for the rest of your life. You do everything you can to prolong it, but the chances are, it won't be anywhere near long enough.

The pink ribbon doesn't fit Stage IV. There are no survivors. There are only the fighters, and the fallen, taken from this world far too soon by the beast. We cannot "beat" this. We can think positive as much as we want, and while it can certainly improve the quality of life, it doesn't actually impact on the final outcome.

We are not survivors.

In the battle against breast cancer, we have received mortal wounds.

The difference is the words Hope and Cure are meaningless to us. And the worst part is, thirty percent of the people who believe in those words are going to find out the hard way just how false and hollow those words ring.

October 1: What Is Metastatic Breast Cancer?

What is Metastatic Breast Cancer?

Metastatic Breast Cancer is known by a small variety of names. Sometimes shortened to MBC, it is also known as Stage IV (4), or Advanced Breast Cancer.  But what is it, exactly? What does it mean?

invasive breast cancer with metastasis

When someone develops cancer, at any given stage, there is the risk of cancer cells breaking off and traveling through the circulatory and lymphatic systems and seeding new tumors called micrometastases. Although too small to be detected in any scans, this small foothold paves the way for developing metastatic disease. Chemotherapy is often effective in combating micrometastases, although it is not a guaranteed success.

Because the cancer cells that travel to metastatic sites still have characteristics of breast cancer and respond to breast cancer treatments, the disease is still called breast cancer even when it spreads to other parts of the body.  So, it’s not a brain cancer when breast cancer spreads to the brain; it is a brain metastasis from breast cancer.

There are four areas of the body where breast cancer is most likely to metastasize, although it is certainly not limited to these: Brain, Bones, Lung, and Liver. It can show up in just one location, or in several. There can be numerous tumors at the site, and there can also be smaller occurrences that are too tiny to show up in scans.

When breast cancer is detected and diagnosed, it is staged by identifying factors, whether or not it has shown signs of spreading, whether or not the lymph nodes and surrounding tissue is affected, and so forth. It starts at Stage 0, and ends at Stage IV. However, it's entirely possible to go from Stage 0 to Stage IV, as the tests performed might not pick up the presence of micrometastases. If there is cancer, there is a risk of metastasis, period.

Many women blame themselves for developing metastatic disease, thinking there should have been something they did, or didn't do that caused it to develop. However, that's not true. Research has shown that when it comes to metastasis, the concept of "early detection" doesn't apply. So all the funding that goes into early detection programs and mammogram screenings actually does nothing to lower the risk of developing metastatic disease.

Women do not die from cancer contained to the breast tissue alone. Women die when it spreads beyond the breast to vital organs. Thirty percent of all breast cancer patients who catch theirs at an earlier stage go on to develop metastasis. An additional ten percent are already metastatic at the time of diagnosis.

Stage IV, MBC, Advanced Breast Cancer, or in the UK, Secondary Breast Cancer, whatever the name it goes by, it's the form of Breast Cancer that kills 40,000 people in the USA annually, and that is a number that has not changed one iota despite the increased awareness of breast cancer. Early Detection isn't stopping metastasis. Mammograms aren't saving lives.

Pinktober is no longer even confined to October. Pink merchandise and Fun Awareness Programs happen throughout the year. It's taken over. Pinktober has become metastatic, without any metastatic awareness.