Why Support the New ACS Breast Cancer Screening Guidelines?
[UPDATED January 2016 – See Below] How a personal phone call from Dr. Richard Wender, Chief Cancer Control Officer for the American Cancer Society, changed my view on the New Breast Cancer Screening Guidelines.They are better than I thought, and better than the media is portraying!
Like countless women and breast cancer survivors, the American Cancer Society’s Breast Cancer Screening Guidelines released on Tuesday, October 20, 2015, devastated me!
I felt that young women’s lives no longer mattered! Like many others, I took to social media and shared my heartbreak with my friends and others in the cancer community. I thought that MY American Cancer Society had let me down; the truth is the exact opposite.
This evening, Dr. Richard Wender, Chief Cancer Control Officer for the American Cancer Society, took time out of his busy schedule to personally call me, yes ME! Dr. Wender spent 40 minutes answering any and all of my questions, no matter how challenging, and he explained in detail precisely what the new guidelines mean.
2015 American Cancer Society Breast Cancer Screening Guidelines
Here is a recap of our discussion from what I thought the breast cancer screening guidelines said translated into what the guidelines actually mean for women moving forward. It is so much better than I originally thought.
• Women ages 45 to 54 should start getting annual mammograms.
The news media made it sound as though women ages 40 to 44 NO longer needed mammograms. What about the lives that would be lost? Would insurance companies pay for mammograms for women younger than 45?
What I missed:
Women ages 40 to 44 have the CHOICE to start annual breast cancer screening with mammograms!
What this means:
Women are now being given the power to take control of their own healthcare. We are encouraged to have those important discussions with our doctors and decide if it’s right for us to have an annual mammogram. Your doctor should explain the risk of waiting until you are 45 before you start having annual mammograms. If you want my opinion, get a mammogram starting at age 40, even if you are healthy. I was, with no family history, check that box too.
The truth of the matter is that the risk for developing breast cancer is almost the same for a 39-year-old woman as it is for a 40-year-old, yet people aren’t up in arms because the previous guidelines suggested that women start having their annual mammograms at 40. Once a woman reaches the age of 43 – 45, the risk starts to increase. The percentage risk for developing breast cancer goes up between 49 years of age and 50, not between 39 and 40. Interesting statistic!
Dr. Wender mentioned that even with today’s guidelines many women don’t go in for their annual mammogram. I was one of those women. I didn’t have a regular physician and it had been 5 years since my last mammogram! Breast cancer taught me a valuable lesson.
Here is the currently available data:
In situ – abnormal cells have not grown beyond the layer of cells where they originated. In Heidi Speak – the cells have not broken through the cell wall and are still contained within the breast ducts.
Invasive – (most cancers are invasive) these cancers have broken through the ductal or glandular walls where they originated and grow into surrounding breast tissue.
The question about insurance companies using the guideline as a reason to no longer cover mammograms in younger women, this is my personal opinion, post op, my insurance company rejected my double mastectomy several times! I had 3 of the possible 7 breast cancers! They don’t need a guideline to refuse to pay for medical treatment, but that’s an entirely different subject.
[UPDATE] January 2016 – The USPSTF (U.S. Preventative Services Task Force) recommends biennial screening mammography for women aged 50 to 74 years.
“For women who are at average risk for breast cancer, most of the benefit of mammography results from biennial screening during ages 50 to 74 years.
“Congress used the recommendations of several organizations, including the Task Force, to create a base level of coverage for preventive services under the Affordable Care Act (ACA).”
• Breast exams, either from a medical provider or self-exams, are no longer recommended
This made no sense whatsoever. This was one point that put me over the edge. Why discourage women and doctors from doing breast exams?
What I missed:
Breast exams, either by medical providers or via self-exams, are not discouraged. They are just not recommended.
What this means:
A mammogram will discover a malignant growth long before a woman doing a self-exam or a medical provider could feel something. In my personal case, I didn’t have the type of malignant growths that could be felt by a self-exam. This doesn’t mean that your doctor will stop doing a breast exam. What it means is that it is not accurate, and it could give women a false sense of security. You still need to get your MAMMOGRAM…starting at age 40! It is like having a broken leg. In most cases your doctor would require that you get an x-ray. Same difference!
Also, women younger than age 40 have denser breast tissue and it is more difficult to feel a lump. I am not referring to actual “dense breast” which again can only be determined by a mammogram. The best way that I can describe “dense breast” is when looking at breast tissue with traditional mammography. Dense breast tissue is white and a tumor is white so it is a little like finding a polar bear in a snowstorm.
If you have been diagnosed with dense breast, at least here in California, you are required by law to be offered additional screening options such as ultrasound or MRI. My invasive breast cancer was not caught by traditional mammography because I had dense breast, yet my surgeon required that I have a breast MRI prior to surgery and I’m so glad he did.
Having a guideline or a list of recommendations won’t save your life. It is the implementation of those guidelines and becoming an active partner in your own personal health! Having an astute doctor who you trust to advise you about risk and benefits of various tests and medical procedures could save your life.
• Women should continue screening mammography as long as their overall health is good and they have a life expectancy of 10 years or longer.
I thought this was a little odd so I asked Dr. Wender about it. It turns out this was part of the 2003 guidelines. He started explaining about actuarial life tables and then shared a story (paraphrased).
There was an older female patient, I believe in her 80’s, with emphysema on oxygen. She mentioned that it was time for her mammogram. When told that she didn’t need one the difficult discussion started.
If your life expectancy is less than 10 years, then even if breast cancer is diagnosed, treating it isn’t advisable. As one who went through it, there are reasons why breast cancer survivors are referred to as strong. It is not for wimps!
• One of the biggest questions that kept coming up between myself and others regarding the new guidelines was, Are the NEW breast cancer screening guidelines being driven by the insurance industry and their desire to reduce the expense of unnecessary biopsies and tests?
On this point, Dr. Wender was crystal clear! 100% unequivocally, the insurance industry had no involvement in these guidelines!!!
So What Does This ALL Mean to YOU and Why Do You Care?
Here it is from my perspective. Watch the video first with your eyes, ears and MIND wide open!
The American Cancer Society was the convener of the group of dedicated physicians all noted in the cancer community who authored these guidelines.
The American Cancer Society did not have a say in the timing of the announcement.
JAMA, the Journal of the American Medical Association, published the guidelines and also determined the timing of the announcement.
I personally doubt that the American Cancer Society would have chosen to release this type of information during Making Strides Against Breast Cancer, one of the busiest times of the year, at least for breast cancer survivors and their supporters!
These guidelines were the first review under the new formula for revised review, and I’m sure a great deal was learned in the process.
Cancer, breast cancer, in particular, is something that I am personally very passionate about. It is something that rocked my world and that of my family. When I saw the guideline, I didn’t READ what it said with an open mind. My friends are dying of this terrible disease. When I saw “mammograms starting at 45,” I thought of all of the women who are battling cancer at an early age and dying before their time.
Intellectually I understand that the American Cancer Society would have lost credibility with the scientific community had they gone against the data and continued on with the old guidelines. The data doesn’t substantiate the old guidelines. One size fits all guidelines just are not prudent.
Dr. Wender spent his day, October 21st, in countless meetings and on the phone with heads of major medical centers and with noted surgeons. The fact that he took 40 minutes out of his evening to speak with me, a breast cancer survivor, and a Making Strides Against Breast Cancer volunteer, shows me just how important we all are to the American Cancer Society! These guidelines were put in place to save lives because of early detection, yet as I said earlier, they only work if women see their doctors and get their annual mammograms!
The views expressed are my own personal views and are not endorsed by the American Cancer Society.
Thanks for sharing this Heidi. I would love to post this on my Facebook page. Your message is right on and what I have struggled to share. Thank you for breaking it down for us.
Thank you, Jennifer for your VERY kind words. It took a bit for the correct message to sink in yet now I understand and my mission now is to correct the misguided and not feed the trolls in the process. Thanks again, Heidi
Thank you, Heidi! You have made me feel much better! I was made and frustrated and felt betrayed. You’ve smoothed out my anger and helped me understand the meaning behind the guidelines. I will continue to advocate for mammograms at 40 and will continue to get my annually. I am not in the high risk category, but – as you said – neither were you!
Thank you again!
Yeesh…typo. I was ‘mad’,….not ‘made’. That just doesn’t make sense. 🙂
Juli thank you for all that you do for Relay for Life and ACS. You make a difference!
When there is a cure found for cancer we will both celebrate and know that we were there and supported the process!
As a staff partner and fundraising for the ACS, I so appreciate your willingness to post your journey from frustration to understanding. Many feel like you do and this helps me and my staff help others to understand. At the end of the day its about saving lives and ensuring all have the right and flexibility to do what’s best for oneself. Well done.
Thank you Amy! Please know that many of us appreciate ACS and all that you do!
I think insurance will look at these guidelines and they will adjust their coverage to go by these guidelines. I also think women will hear these guidelines and think that they do not need to get a mammogram or do self breast exams. I think we are taking backward steps even though this article and video in it talks about it more in depth. I am afraid doctors will discourage women from mammograms. They already tell them if they are in 70’s they do not need mammograms. Being a woman and age is risk factors. I know of a 74 yr old woman that has breast cancer because she had a knot and doctor told her not to worry about it. I am still concerned about these guidelines. It seems they change and flip flop back and forth.
Anna, I appreciate your comment. I expect that there will be examples on both sides. There will be competent practitioners that will properly encourage women to get their Mammograms at age 40 and other’s who won’t. As for the insurance industry, sorry to say they don’t need guidelines to deny patients coverage. I received a letter from my insurance company asking if my cancer was as the result of a car accident and should it be submitted to my insurance company. I have a friend who was diagnosed and treated for breast cancer in her 80’s and she’s been cancer-free for several years. I’m so sorry that the 74-year-old woman was not offered treatment options. I’m going to personally hope for the best!
Thank you for clarifying this. I encourage all friends and family to start mammograms at age 40. Until we find a cure for cancer, women and men need to take ALL precautions to find cancer as early as possible. I was 48 when I had breast cancer (hurray 20 years cancer free) and my sister was 57 (hurray 8 years cancer free); however, our younger sister had not yet began her mammograms so when I was diagnosed , and due to the fact that it had start in run in my family, she immediately went for her first exam. I have been a volunteer in Relay For Life for 18 years and encourage early exams. Better early and safe versus later and sorry. Everyone has to make their own personal decision, but think hard and get the information and make a wise decision when it comes to your life.
Betty congratulations on being a 20-year survivor! Well done! Also, I’m so incredibly happy for your sister – 8 year’s cancer free BRAVO! Thank you for your support of Relay for Life, where do you volunteer? Keep up the good work AND keep your little sister healthy too. Thanks for your comment!
I encourage women to continue to do their self exams. At age 44, I found my lump, an aggressive, invasive, cancer, which was not visible by mammogram (due, perhaps, to my dense breast tissue.) It was very aggressive and, if left untreated until detected by mammogram, I hate to think of the consequences.
Jennifer, my breast cancer couldn’t have been detected by self-exam either, dense breast! I’m glad you are healthy now.
Thank you for your comment!
Heidi, there has been mention of the “risks” associated with earlier mammogram screenings. Do you know if the risk is just in reference to the false-positives which may result in unnecessary biopsies, or is it the potential harm of additional x-rays? Any thoughts or ideas on this? Thank you!!