- My name is Vickie Young Wen and I’m a daughter, sister, wife, mother, caregiver, friend and breast cancer advocate.
- In January 2012, I was diagnosed with invasive breast cancer.
- After successful chemotherapy and lumpectomy, I have a clean mammogram. I have no cancer in my breasts.
- I DO have over 75 breast cancer tumors in my body, throughout my bones and liver.
- I do NOT have bone cancer. I do NOT have liver cancer.
- I have Stage IV metastatic breast cancer … the ONLY kind of breast cancer that kills.
- No one has ever died of breast cancer contained to the breast. [1]
- Breast cancer kills when it moves to bones and organs.
- Less than 20% of the money donated via the most famous pink ribbon campaigns gets put into actual research dollars.[2]
- Very little of that money goes towards metastatic breast cancer, the only type of breast cancer that kills.
- Approximately 40,000 women (and men) die of metastatic breast cancer each year in the United States alone. Globally, the figure is over 500,000.[3]
- This number hasn’t changed in over 25 years.
- Breast cancer is not a “rite of passage” that all women should endure. It’s not a pink party that equates “coming of age,” but is a deadly disease. There is absolutely NOTHING pretty in pink about this issue.
- American federal funding for research dollars towards breast cancer has decreased over the past few decades.[4]
- The pink ribbon movement has brought corporate greed into the spotlight. Marketers have learned that slapping a ribbon on a product increases sales. Consumers do not know that this does not increase contributions to research.[5]
- There are eight different types of breast cancer that have a classification, along with all their subsets. There is an additional “folder” that includes another ten or so breast cancers that are so rare that they have no standard of care designated to them.[6]
- The pink month of October (aka “Pinktober”) only gives ONE day (October 13) to focus on metastatic breast cancer. [7]
- 6 – 10% of all women diagnosed with breast cancer are diagnosed metastatic Stage IV from the beginning. All the rest are early stage diagnoses.[8]
- All early stage diagnoses have a risk of either local or distant recurrences, but the risk of recurrence is not the same for each patient.
- Many medical professionals are hesitant to use the word, “cured,” except when referring to cases of low-risk recurrence. Patients can reach “no evidence of disease” as the cancer in their body responds to treatments. Age, stage and type of breast cancer all impact the chance of recurrence. [9]
- There is NO consistent cure for breast cancer. If there were, then NO ONE would ever have a recurrence. There are those who reach “no evidence of disease” with low risk of recurrence.[10]
- Early detection does not save lives. Early detection means a quicker start to the effective and innovative treatments that save lives. If it were only about early detection, then not a single person with an early stage diagnosis would ever have a recurrence. Yet, many early stage breast cancer patients have distant recurrences and become metastatic.
- Early detection does not guarantee survival. The fact is, more research is needed to understand which tumors are indolent or aggressive, regardless of stage. This information can help predict the risk of recurrence. A large number of patients (exact percentage unknown) diagnosed with Stage 0 – Stage 3 disease can have recurrences up to three decades later.
- Metastatic breast cancer patients will be in treatment for the rest of their lives, however long that will be. Metastatic breast cancer has no cure. They will not “beat” breast cancer.
- Breast cancer recurrence can occur regardless of treatment or risk reduction measures taken. Half of those surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventive steps. This places undeserved blame on people with metastatic disease.[11]
- Breast cancer has no prevention. There are ways to reduce risk, but there is no definitive method one can take to prevent the disease.
- Risk reduction is not the same as prevention.
- Many women with metastatic disease are asked by friends and family, “What did you do wrong?” Breast cancer patients are not to blame for the disease invading their bodies.
- EVERYONE has the BReast CAncer susceptibility genes. Mutations in these genes, known as BRCA1 and BRCA2, indicate an increased risk of breast or ovarian cancer, but they are not sure fire indicators that one will definitely get these diseases. Knowing there is a mutation requires careful consultation with a genetics specialist to determine any course of action.[12]
- Having a double mastectomy may reduce the risk of primary or recurring breast cancer, but it is not a guarantee. Many women have recurrences in scar tissue or in the remaining tissue in the chest wall, etc., not to mention, in distant locations. It is not true that “no breasts = no breast cancer.”
- Prognosis of advanced disease remains poor and treatment options are limited.
- The reality is, while there have been advances in therapy, metastatic breast cancer remains incurable, with an overall survival rate of only 2%. The median survival following a metastatic breast cancer diagnosis is just three years.[13]
- When a patient is diagnosed with metastatic disease after having an early stage diagnosis, the stage remains the early stage. The patient may be referred to as a Stage IV patient, but statistically speaking, the patient is (example) Stage I with metastasis to the liver. There is no database for all patients living with metastatic disease.[14]
- The two most common metaphors used to talk about cancer typically involve violence metaphors (war, fight, battles) or journey metaphors. [15]
- Some people feel empowered by such metaphors, while others feel disempowered.
- Every person diagnosed with cancer of any kind should feel free to embrace what works best for them when describing life with the disease.
- Pretend knowledge is very dangerous because it creates the powerful illusion of genuine knowledge. [16]
- Pseudo-science weaves in and out of real science and makes people believe that if they only did ___________, then they would be cured. This is simply not true.
- It is not possible to treat cancer via any dietary or supplements plan. It is not possible to treat cancer with an attitude adjustment. Cancer patients do not need or want alternative cancer cures and if they do, they will ask for them. [17]
- There is no miracle cure for cancer …[18]
- And if there were, Big Pharma is not hiding it.
- Problems with conventional medicine don’t automatically prove that alternative ‘cures’ work. To use a metaphor, just because cars sometimes crash doesn’t mean that flying unicorns are a feasible transport option.
- There's a difference between someone facing a terminal illness CHOOSING to live a positive life and someone TELLING a terminal patient that they should be positive because it gives more meaning to their life.
- Allow someone to live the life they choose for themselves … not the life that makes YOU more comfortable.
- Often, those with metastatic disease feel immense pressure to “hold it together” for the sake of others around them. Being told to “stay positive” or “you’ll beat this” adds to this pressure.
- It is very difficult to find the right kind of support that allows an individual to express sadness and fear as those emotions make others uncomfortable.
- Many with metastatic breast cancer struggle with fatigue. This fatigue can be treatment related or disease related. [19]
- Fatigue in a cancer patient is not the same as fatigue in a healthy person. There is no amount of exercise or sleep that can overcome this fatigue.
- Someone with metastatic disease can go to bed exhausted and wake up exhausted.
- Frequently, exhaustion is made worse by pain, insomnia, anxiety, mobility issues or an inability to eat properly.
- Because metastatic breast cancer treatments are not curative in intent, they are less harsh than those given to early stage diagnoses. Often a metastatic patient will have hair.
- Physical appearance is not the judge of the seriousness of metastatic breast cancer. Many with the disease do not look sick at all.
- Two people with metastatic breast cancer may be on the exact same treatments, but may have completely different reactions.
- One may respond very favorably with few side effects, while the other may have no response at all or have horrible side effects.
- Metastatic patients are individuals with a statistic of one … their own experience.
- YOU can make a difference! Your donations to organizations that invest in research (not awareness) is what is needed. Please donate today to:
- Metavivor.org (100% of donations goes into metastatic breast cancer research)
- BCRFcure.org (87% of donations goes into broad spectrum breast cancer research at all stages)
(All website references confirmed March 31, 2016)
[1] http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-ca
[2] http://iwantmorethanapinkribbon.weebly.com/blog/komen-race-for-the-cure-more-or-less
[3] http://seer.cancer.gov/statfacts/html/breast.html
[4] http://www.asco.org/advocacy/federally-funded-cancer-research
[5] https://www.psychologytoday.com/blog/pink-ribbon-blues/201310/cause-marketing-is-not-philanthropy
[6] http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/types/
[7] http://www.huffingtonpost.com/elaine-schattner/metastatic-breast-cancer-awareness_b_760347.html
[8] http://mbcn.org/education/category/most-commonly-used-statistics-for-mbc
[9] http://www.breastcancer.org/questions/cancer_free
[10] http://www.breastcancerdeadline2020.org/breast-cancer-information/myths-and-truths/myth-20-new-treatments-can-cure-bc.html
[11] http://www.pfizer.com/news/press_kits/breast_cancer
[12] http://www.cdc.gov/cancer/breast/young_women/everyone_has_brca_genes_infographic.htm
[13] http://www.pfizer.com/news/press_kits/breast_cancer
[14] http://www.cancer.gov/about-cancer/diagnosis-staging/staging/staging-fact-sheet
[15] http://scienceblog.cancerresearchuk.org/2015/09/28/may-i-take-your-metaphor-how-we-talk-about-cancer/
[16] https://www.sciencebasedmedicine.org/a-tcm-challenge/
[17] http://scienceblogs.com/insolence/2016/03/31/cancer-patients-do-not-need-or-want-suggestions-for-alternative-cancer-cures/
[18] http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#miracle-cure
[19] http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/feeling-tired-vs-cancer-related-fatigue