While I’ve added my own words and experiences to the blog posts, the informative metastatic breast cancer graphics were created by Andrea Parker, who was born only a few months earlier than I in 1978. Andrea created the graphics with Ginny Knackmuhs offering the statistical information for them.
Andrea’s life was stolen by MBC in September 2018, at the age of 40. Another young woman, a fierce advocate who sought to increase awareness about MBC, worked to educate the public about this disease, while pleading for more research funding to decrease the death rate, currently at #116dyingdaily, from this insidious disease.
I’ve tried to continue what she started, to focus on education each October, which is sometimes called Breast Cancer Awareness Month.
Will you take up the mantle? Will you educate others every October after I’m gone?
We survived. We got through Breast Cancer Awareness month. October aka Pinktober aka Crooktober aka Stinktober is my least favorite month of the year. Why? Because it isn’t helpful to us who are living with Stage IV and then it ends and no one pays attention any longer.
Living with Stage IV metastatic breast cancer is a 24/7, 365 day per year experience. Those of us living with it never get a day off and it only ends when we’re dead. Think about that. Don’t stop paying attention just because one month is over.
It’s difficult to find reliable statistics to definitively prove all of the statistics in this or some of the other educational posts I’ve posted because the people who are initially diagnosed at an early stage (I-III) and then progress to Stage IV are not counted. We do have two data points that are helpful, the total number of people living with breast cancer who have not yet died and the number of people diagnosed Stage IV de novo or from the beginning.
Utilizing those data points and other information that can be extrapolated, the percentage above is obtained. I get that this can be controversial and creates both fear and angst. There is no helping that because this information is based on FACTS.
There is no cure for breast cancer, at any stage. When men and women are told that their early stage breast cancer was cured, that they are cancer free, they are being sold a fiction that they want to believe.
Telling the truth often hurts, but that doesn’t change the reality. Remission is the word, not cure, not cancer free.
If we are told the truth, we can deal with it. If everyone was told the truth, then the ranks of ally’s we need would have to come out of the shadows and fight with us.
I love my palliative care doctor so much that I wrote a whole blog post about my experiences. You can read that here. Palliative care is not hospice and anyone diagnosed with a serious illness, terminal or chronic, can benefit from palliative care. As I ended my blog post linked here, everyone deserves to have someone fully invested and focused on your quality of life.
I have Invasive Ductal Carcinoma, which formed a hard lump in my breast. Inflammatory breast cancer is much harder to find. The bottom line is that if your body changes, if a part of your body looks different or feels different, go to the doctor. Don’t stop until you have an answer.
We have the ATM mutation in my family. It is a germline mutation similar to BRCA and includes breast and other types of hormonally driven cancers. I don’t fully understand the details of how it works, but we have seen in my family that the mutation seems to have a more aggressive affect in each subsequent generation.
What does this mean for my family? 4 out of the 6 of us (yes, I have 5 siblings) have been tested and 2 of us are positive, me and my sister who is 18 months younger than I. Two of my siblings have yet to be tested. Our children, there are currently 5 grandchildren for my parents, are too young to be tested.
Will the mutation get stronger in my children’s generation? Possibly. We don’t know yet. What I do know is that we will educate the next generation far more than we were so that they can make the best decisions regarding their own children.
For instance, I tell as many people as possible that they should get genetic testing done before undergoing fertility treatments. There are also options to select genetic components that don’t pass along a genetic mutation to children. I get that there are ethical considerations and I’m not advocating for any particular choice.
I’m advocating for education, for people to understand what decisions they are making. I didn’t know what I didn’t know and I want better for my children.
The first time I saw this statistic, I was floored. I’m not a medical person, but the sheer number of factors that could lead to a breast cancer diagnosis is overwhelming. I know a lot of people who stay in this space, who search and search and search for the why behind their diagnosis.
I’m sure I could have done things better, been healthier, exercised more, eaten better, reduced stress, etc. Before my diagnosis, I was working long hours running my own business while being a wife and mother of two boys, pumping and nursing around the clock. I was on birth control for a few decades and I underwent fertility treatments to get pregnant both times.
Hindsight is always 20/20. We can always look back and see what could have been done differently.
But I don’t.
I don’t find it productive or helpful to dwell on what I could have done differently. I am here, now. I am Stage IV, yes. I’m not dead yet.
I will maximize the time I have left.