The American Cancer Society finally announced sweeping changes in the breast cancer screening guidelines based on independent meta analysis of the data. We've been expecting this since the US Preventative Services Task Force published their recommendations years ago. But is it all about the money? Corruption?
The U.S. Preventive Services Task Force (USPSTF) is an independent, volunteer group of national experts in prevention and evidence-based medicine that makes recommendations about clinical preventive services such as screening tests, counseling services, and preventive medications.
In my work with women who have had a diagnosis of breast cancer over the past 10 years, I have been accused of a lot of things. But I have never let that make me afraid or stop me from speaking the truth as I see it. On behalf of the women I serve daily and the science that I see presented at conferences and looking deeply into this issue. I am all for these changes.
The cancers that are killing people are not affected by our treatments- and finding them before they are palpable is not making a difference according to the data. This is why I post the studies. 25 year studies. Good science.... The science is now proving early detection just isn't the answer. No matter how much we wish that it was, it's time to admit our direction needs tweaking.
Over-diagnosis
At the end of the screening period, an excess of 142 breast cancer cases occurred in the mammography arm compared with control arm (666 v 524) (fig 4). Fifteen years after enrollment, the excess became constant at 106 cancers.
This excess represents 22% of all screen detected invasive cancers—that is, one over-diagnosed breast cancer for every 424 women who received mammography screening in the trial.
I care very much about these women who are over, or falsely diagnosed and the havoc that's wreaked on their lives. This creates undue burdens on the system as well. I also care about those who find it early but that didn't help, they often feel responsible because it was detected early and #EarlyDetectionSavesLives right?
A feel good message, but just not the case. It is the biology of the cancer, and little else that determines outcomes. #PreventionSavesLives is the true message.
Psychology & Epigenetic Factors
There is a psychological component that also needs to be brought up. There is so much suffering that can be caused by false positives, over diagnosis unneeded biopsies and yearly screening causes all of that. The science also shows that emotions program the DNA and that our cells respond to the environment they sit in, this is called Epigenetics. Looking for cancer all the time, it's traumatic to the psyche and the cells respond to our emotional state.
Some women found their cancer on mammogram and their lives are prolonged. There are also those who change their environment and many things about their lives and who are also saved, but the key was early treatment and the lifestyle changes. I've dedicated my life to working on programs and with the docs and scientists so we can make the changes needed to help less women suffer, and help women suffer less. As I see it, if we want to make any difference we need a shift in our system because what we are doing IS NOT WORKING.
Furthermore, basing our guidelines on emotion and not evidence is not a good idea. It's contrary to what our medical system prides itself on.
It's our job to look at the science and do what is best to support our system in affecting the outcomes of people with cancer. In doing this we see that sometimes what we're doing, and what we believe to be true, needs to be examined in exchange for best practices. I see our system being obstinately stubborn about reacting to the science, even when it disproves a current treatment or screening. We are fast to add new drugs and slow to take them out. We are fast to say screening is the answer and slow to realize that perhaps it is not.
If we try to look at the issue without bias, we are empowered to seek answers in a visionary way. Lets look at the problem from different angles, rather than being blinded by our emotional response and sticking to a 'solution' that obviously isn't doing more good than harm.
"Sometimes the science disproves our current focus, or our personal beliefs. It's still the bottom line. Even if it shakes us at our core and threatens our very life view. Even if it changes the flow of pink funding away from screening."
I'm not in the fashion (though it's awesome). I work hands on, in cancer. I'm not in marketing, or art or music or public relations (stuff I love). I work in cancer, almost every single day.
God, I wish someone would put me out of business!
My life's mission is to help our system support the women who are going through this debilitating and ever-growing malady, to teach survivors practices to thrive, heal, and prevent future cancers. To provide new systems to support the patients.
No one can accuse me of not caring about finding the best possible outcomes for woman with cancer. I sit at their bedside to help them in their final days when that is needed. I have built a troupe of amazing volunteers willing to do the same. Yet I have been told that supporting these guidelines is shameful and dangerous for the women I love. So I needed to respond.
I am an advocate and trained in the science and working the trenches. I see people diagnosed doing everything and having metastasis. I see women diagnosed after she has found a lump, and ignoring it. I see women refusing to be seen by a doctor and letting the lump grow. I see women who never find a lump at 31 and are diagnosed with bone metastasis. It sucks.
It is fact that when a woman has one of those genomic cancers that is a 'bird' it has poor outcomes, and it doesn't seem to matter what stage it's detected, or how much treatment it's given, it is likely to fly away. That what the evidence is proving.
I'm so very sorry if this view is scary, it's not pink, it's not fluffy and it's not #EarlyDetectionSavesLives. I feel we need to look at this issue without blinders. Unfortunately, we are still being fed the 'feel good' version and until that changes we can't see clearly.There are miraculous recoveries, I still believe in miracles. Epigenetics play a huge role, I have seen changes with diligent healing practices and I'm not about taking away hope.
So what CAN we do?
1. We can find the women who are diagnosed with a lump, who've decided not to take treatment because they don't trust. They don't feel cared for they don't feel connected. Getting women into treatment before metastasis does saves lives, and we can make a safe space for them. We can better support women who were diagnosed, even early and had metastasis, so they can get through the trauma. We can give them love, strength, sisterhood and when needed help guide them and support them through the treatment they need.
Around 70% of those diagnosed who are keeping or maintaining their lumps or 'non-compliant', do not have a 'bird' or aggressive cancer that is going to kill them. I can cite many of those women over the years. Some wait until it's late stage, but we have a great track record of getting them into treatment because we are survivors and volunteers working to help them for free. We have nothing to gain and they see that. This is what KEY and that is where some pink funding will make a big difference. The system can refer patients to survivor run programs working outside the hospitals. It is shown that women overwhelmingly seek information from other survivors outside hospitals because the hospital is associated with psychological trauma.
2. We can create outreach programs that help women and men understand the importance of knowing their bodies and being responsible for their health in a positive way. Since recommendations show that manual exams aren't that helpful either. Look at it this way: manual (CBE) Clinical Breast Exams are much less traumatizing than mammograms each year. But whether you are low risk or high, it's so important for us to take responsibility for knowing our bodies and what changes!
How can any physician possibly remember from one year to another what every patient's breast feels like, and if there's been changes from one exam to another? Aren't we giving our power away expecting them to do that for us? It's about self-care and love not fear, not looking for cancer but knowing our bodies. Let us remember there are ways to create awareness that don't involve fear and anger or constantly trying to find 'cancer'.
3. We can support after care and preventative health services.
4. We can earmark funding to research prevention and non-patentable substances. Prevention is the true cure, the only cure. And well, that seriously changes the flow of dollars. —less than 5% of our BC pink funding goes to research causes of cancer and prevention, even less on supportive holistic palliative stress and symptom reduction practices.
"We can do more and we must because treatment and screening are only a tiny portion of this disease."
Treatment is only a small part of this journey. In order to have better outcomes survivors need a lot more.
k funding goes to research causes of cancer and prevention, even less on supportive holistic palliative stress and symptom reduction practices.
How can you cure something if you don't know what causes it? How can you affect mortality if you don't support mind/body/spirit of those who must learn how to heal in dire circumstances?
We can help prevent cancer in future generations and improve outcomes by teaching women, the mothers and caretakers how to heal and how to change their environment and habits. They will teach everyone cause that's what us women do.
"Equating mammograms with prevention, it makes my ears smoke every single time....Mammograms are about getting people diagnosed and treated they are not prevention! Say it again from the mountaintops PAALEASE."
Yes, outrage about our ineffectiveness with all we've done is appropriate. After reading the science and my experience as an advocate on many levels, I agree with the National Breast Cancer Coalition in beginning to change our focus.
People at higher risk do need screening and should get it. But those who are not should not have to constantly be looking for cancer. Women and men can be taught to touch breasts with awareness and love and not fear. Mammograms won't prevent people from dying of cancer. They just won't. All the numbers say it. These guidelines are based on good science. Not making money.
As we open our hearts to working together in the names of women our sisters in this journey--we see that if we only focus on this very flawed tool we may miss some other option that can change this and really impact outcomes. This can be hard to see unless you're really deeply engrained in the science. On the surface and with this early detection message we've seen over and over again, it seems like mammograms are an answer but the numbers do not lie.
Screening for those at risk, and self-exams and prevention for everyone. But please let's change the focus from finding cancers to preventing them.
If you or your doc wants a mammogram get it every year, especially if you're a woman that has risk factors, but people must learn more about those factors and not just base everything on fear. Lets know really when it is, and when it's not appropriate to screen.
These guidelines are going to be helpful in the long run for our system and once we respond to the science, we can study the outcomes of focusing on other areas. For example for the first time this year #AvonFoundation has created a grant for supportive services! I foresee many others doing the same and WATCH what happens when we really give the supportive care and lift up these women. Watch, and see what empowered women can do!
~Luana DeAngelis, Advocate
Founder You Can Thrive!