Life Lessons from a Mammogram

“Honey, let me tell you something.”   That’s one of my granny’s popular lines when she was alive signaling that she was about to impart wisdom or a life lesson and that I better be ready to listen with no distractions.   The “honey” at the beginning of the sentence was the give-away.  I’m putting both my story and what I learned out there as a “Honey, let me tell you something” because it’s important.  I am not one to share truly personal things publicly – which includes personal health – but my conscience wouldn’t let me NOT share a recent experience thinking that one in my circle of friends or family – including my Unconditionally Her family or readers – might really need to hear it. And what if I didn’t tell it and there were negative consequences because I just didn’t share and someone needed to hear it? I’m putting my personal pride aside knowing my conscience is clear in sharing some things that might be helpful to even one precious person!

What is this must-listen-to story?  It’s the story of a mammogram “finding” and the medical “purgatory” of Hades that I found myself in for eight long weeks.  I would like to share my story, but also the “lessons” because there were several takeaways from this that just might help someone out there in a life-changing or life-saving way.   It might get a little long, so skip the story and go right to the lessons if that’s your style.  I don’t mind!  And spoiler alert: I had a happy ending 😊.

My Story (yes, it’s long):

My mammograms kept getting scheduled later in the year given that my insurance will only cover them at least one year after the last one and not a day before. I had “worked my way” into December and wouldn’t you know it, the household got sick with a bad, debiliating bug and I was into the new year before feeling anything like talking about a mammogram. Pair this with what turned into months of arguing with the insurance company for three years in a row over them no longer covering my facility where I had been with my doctor for over 20 years and where they had all of my records, it was already well into early summer when I finally “caved” and went where they told me to go.  Note I did NOT miss mammograms during those years, I just chose to pay for it out of pocket where I could stay with my long-time provider.   But I was still almost 6 months behind with my mammogram and came <<<<<THISCLOSE>>>>>>>>>>> to doing what I tell people all the time not to do – “oh, I can put this off another six months when life isn’t so chaotic and I’ve regained my energy and composure from all of the insurance back and forth.”  I am so glad I did NOT.

Let me interject quickly that I am fortunate to have health insurance that is affordable and that does offer mammogram screenings at no cost despite all of the frustrations.   I don’t want that point to be lost because I know not everyone has insurance yet every woman should be able to have a mammogram regardless of ability to pay.  I have included at the end of this article ways women can get mammograms if they do not have insurance or cannot self-pay.  And yes, I will still fuss about what the insurance company did to me, but also glad I have it. Now- are you ready for the next chapter?

I finally make it to the mammogram visit at the place my insurance company has told me I must go to have it covered. I’ve made peace with my doctors not being there, my records of decades somewhere else, etc.   I am at peace.  This is mammogram #17 and I fully expect to go in, do my thing, go about my day, and get a report later that everything is “normal” just like the 16 times before.   All but that last part happened. I received a letter maybe a week or so later that said there was a “finding” and that I would need to come back.  For someone with health anxiety, this created great distress.   I could not get anyone to call me back to answer questions other than a clerical person who said they would relay my request for a call-back to a provider.     They told me it would likely be 2 weeks before I could get in to further address this “finding” through additional screening. These two weeks were agony.  And of course, I felt remorse at not getting in there 6 months sooner to begin with so that whatever this “finding” was could have been spotted 6 months sooner. There were countless nights of little to no sleep, going deep into the Google rabbit hole trying to self-diagnose and assess my situation, running on fumes and lack of healthy routine and substance,

I finally made it weeks later to the follow-up visit where they did additional screening.  I was told I would get my results that day before I left. Thank goodness for that. I don’t see how I could have done a repeat of those two weeks in what felt like Hades.  As I sat there waiting for the technician to relay what the doctor was saying as they communicated across the computer, my heart was racing, I was sweating, my hands were shaking, and I was wondering if I was about to embark upon a journey that sadly, three friends in our family’s social circle and similar in age to me had embarked on in the last 24 months – with two of them losing their lives.  It was absolutely terrifying.   I was immensely relieved when the tech said “You are good to go! We will see you for your next regular screening and you’ll get something in the mail about that.” Wow! I could finally BREATHE. First stop, Chick-fil-A. Finally a meal and ready to get a good night’s sleep. Until…………

About five days later, I received a letter relevant to my follow-up visit.    It noted my appointment and that the further additional screening indicated that the “finding” was “probably benign” and to come back in six months for additional screening to prove it benign.   I understand now that this is standard language. And I understand that six months for some people to wait is doable. It was not for me. I don’t do well with “probably” no matter high a probability it might be that this was not cancer.  There was never a conversation with a provider about this, either in person or by phone, which I personally think may have made this entire situation much less of a crisis.  I did ask with the same results as before – the intake staff passed along messages so “hopefully” someone will call me back.  They did not.  

Next step? Call a gal pal who knows what she is talking about who encourages my plan to advocate for myself and go back to the battle with insurance because dang it, I’m getting answers and a second opinion. There is no way on God’s green earth I could wait six months for something more conclusive, not when I barely made it two weeks.    Going through that process of approvals and getting something set up was another 2-3 weeks and then the appointments themselves, which took this whole ordeal into an 8-week journey through Hades.   It was at this point I really called upon a few friends who really demonstrated what I already knew – these are ”my people.”    Sure, I had support at home which is great, but sometimes our lady tribe is needed and this would be one of those times.  I was in awe of how they responded to what probably sounded like the most desperate pleas and calls.  “Why didn’t you call me sooner?” “Let me come with you.”  “I’m calling to check on you tomorrow.” I was overwhelmed with gratitude.  These ladies showed me who I already knew they were.

This next part of the journey went well once I had the second opinion appointment which was done by breast health specialists who see and do nothing but mammograms and breast health everyday vs. the initial assessment conducted by competent yet more general practitioners.  I had my results that day and spent 68 minutes face-to-face with a healthcare provider explaining all of my exam and imaging results, history, concerns, questions, and a plan for next year’s screening. She also discussed breast density with me, something that had never been discussed with me before but which is very important.  The “finding” was normal but not easily identifiable without the indepth screening and imaging that wasn’t done previously.  I am back to every 12 months which was music to my ears. And back to living and being “normal”.  Oh – I also got a letter days later, but I had already had the face-to-face conversation  so was more of a formal documentation and didn’t even faze me.

Being 50+ and aware of the possibility now that “things” can just happen at this age, having three friends so recently diagnosed and two passing away, unlimited access to “Dr. Google,” and anxious tendencies contributed to this crisis.   I learned so much, some of which I will share below, but am relieved that my story had a happy ending. While I have had friends who are cancer survivors and followed their triumphs and challenges, I never really thought about what it must feel like going through the screening and diagnostics stage. Wow. We are all different, but I can share what my experience was.  It has given me new respect for those who have “been there done that” regardless of their personal experiences and reactions.    And it made me pause to think of several “life lessons” I learned from this that I hope might spare somebody from going through what I went through.  

If you’ve made it this far, you should get a prize. “Life Lessons” are next!

The Life Lessons:

So this is where “Honey, let me tell you something,” as this is the truly important stuff.   There were several takeaways from this extremely distressing situation that I hope will help someone else.  Things that truly could save a life or make life better for someone going through a similar crisis or just as a reminder to people who are busy like me and put themselves last for important screenings “just this once” because of any number of reasons.  And there’s what may be a new “nugget of wisdom” for some of you like there was for me learning about breast density.   Here’s where it gets real.  Listen up! 😊

  1. Don’t skip your mammogram.

This one is pretty simple.  I let the insurance company’s battle with the healthcare system delay my mammogram by six months. I got tired of the countless phone calls and outreach and  the accompanying frustrations and couldn’t be bothered with that given all else I had going on at the time, which is always a million different things. They wore me down.  Never again.  This experience has shown me that things can change in a short time period with mammograms, and while my story had a happy ending, I never want to be delayed and miss early detection if there ever should be a problem.   I “know better” and have always encouraged others not to miss health screenings and preventative care and I let my busy-ness and the insurance battles get the best of me “just this one time,”  but will NOT let anything get in the way of my appointments again. Don’t skip your mammogram!   Early detection is critical, and you can’t detect early if you don’t make your appointment or let too much time go by.

If you don’t have insurance or otherwise cannot pay for a mammogram, please see the information I am including at the end of this article for resources on how to access a mammogram. Inabiity to pay should not be a reason to not get screened!

We have got to advocate for ourselves.   Don’t count on insurance providers, health providers, or anyone else to do the legwork or to hold you back from getting services you need. I had to WORK to get a second opinion appointment.   The insurance company wasn’t going to have it and my original provider really didn’t do much to support me doing that either.  Heck, I had to fight insurance to even get the FIRST mammogram due to a glitch with the insurance carrier and the healthcare system and provider I had used for more than 20 years and that cost me six months. But you know what? Waiting another 6 months for answers from mammogram #1 just didn’t cut it with me, not when it comes to something as serious as cancer. Not someone with health anxiety.  “Blame” it on my health background and “knowing too much,” having worked on a cancer-focused project for more than 12 years, having more than one friend die from this disease within the last 24 months, or maybe my anxious tendencies.  Regardless, I needed answers NOW and not in six months for my mental and physical well-being, no matter what any of the other cast of characters in this experience wanted.  

I would not have been successful even getting the first mammogram approved without tremendous effort OR the second opinion and follow-up tests if I left it in the hands of others.   I advocated, did the legwork, and got the answers I need. BE. YOUR. OWN. ADVOCATE.  Nobody is a better advocate for yourself than YOU!  

If you have what are considered “dense” breasts, you may need more than the routine mammogram.  Talk with your provider about what this means!  Density is something that can only be identified by mammogram – it has nothing to do with size, shape, age, or anything else.  It is only a mammogram that can tell you under which category you fall, and it is super-important as I will share below.   A great place to learn more is the American Cancer Society  website.   I was never told about this by my healthcare provider but learned about it as part of this experience and will be asking – and advocating – for supplemental testing for myself in future years now that I know where I fall in the different categories.

Also, something really important about the breast density issue is that in the United States, the Food and Drug Administration (FDA) regulates mammography facilities at the federal level (American Cancer Society, 2023). In March of 2023, the FDA published a rule stating that mammogram reports sent to patients must include breast density, which should be described as either “not dense” or “dense.”   Many states were already doing this with 39 states and the District of Columbia now having passed laws on breast density location (DenseBreast-Info.org, 2024). If you like research or interesting facts, you can learn more at this direct link.  You can find your state on the pull-down menu and learn more.

According to the American Cancer Society (2023), If your breast tissue is not dense, the report will say, “Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is not dense. Talk to your healthcare provider about breast density, risks for breast cancer, and your individual situation.” 

If your breast tissue is dense, the report will say, “Breast tissue can be either dense or not dense. Dense tissue makes it harder to find breast cancer on a mammogram and also raises the risk of developing breast cancer. Your breast tissue is dense. In some people with dense tissue, other imaging tests in addition to a mammogram may help find cancers. Talk to your healthcare provider about breast density, risks for breast cancer, and your individual situation.”

The American Cancer Society (2023) goes on to say, “In addition, mammogram reports sent to healthcare providers must include an overall assessment of breast density using the 4 categories described above.  All mammography centers in the US must comply with this rule by September 10, 2024, although many are already doing so.”

I reached out to a handful of friends who had “been there done that” with mammograms, and unfortunately, with breast cancer, but not until well into this process where I had already worried myself sick – literally, I got physically sick, couldn’t sleep, eat, and an assortment of ailments – and was spiraling into a not-too-good place.   Each and every one of them had similar first words – “Why didn’t you call me when this first happened?”  None knew about me calling the other. One I talk to every other week, others, it had been months and another even more than a year since we had really talked, but the first words were always the same for each of them. “Why didn’t you call?”  or “Why did you wait so long?”  I wonder now looking back if I have a friend out there that just doesn’t want to “bother” me about something?   “Honey, let me tell you something.”  True friends want you to call!  Reach out if you need a friend. We sometimes have our loved ones and significant others at home, but we need our lady friends, too for things like this.    I hope anyone reading this reaches out to a someone who is part of your support system who is most likely SO ready to rally forces with you and be the support that you need. I wish I had called sooner.     It really helped me to talk with ladies who have been down this road and that would stop what they are doing to help me with my struggles.

I hope readers have appreciated reading my story, my “lessons learned,” or a combination of both.   It was important for me to share, and I hope there are kernels of truth that resonated with anyone reading this and that you might even “pay it forward” by sharing with others.  Thanks for taking a moment to “Honey, let me tell you something.”

If you need a mammogram but do not have insurance (Hernden, 2024; Aime, 2024):

If you don’t have insurance, there are several ways to get a mammogram at a low cost or even for free:

National Breast and Cervical Cancer Early Detection Program (NBCCEDP): This program, run by the CDC, provides free or low-cost mammograms to low-income, uninsured, and underserved women. It’s available in all 50 states, the District of Columbia, six U.S. territories, and 13 Native American/Alaska Native tribal organizations.

Local Health Departments and Clinics: Many local health departments and clinics offer free or low-cost mammograms. You can contact your local health department to find out about programs in your area.

Nonprofit Organizations: Organizations like the Susan G. Komen Foundation, the American Cancer Society, and the National Breast Cancer Foundation often provide financial assistance or access to free mammograms.

Breast Cancer Awareness Events: During Breast Cancer Awareness Month in October, many facilities offer free or discounted mammograms.

Planned Parenthood: While they don’t have mammography equipment in their clinics, they can often refer you to low-cost imaging centers.

Patient Financial Assistance Programs: Some mammogram facilities have financial assistance programs or special deals to help you save money.

It’s a good idea to reach out to these resources and explain your situation. They can guide you to the best options available in your area. If you need help finding specific contact information, feel free to ask!

References:

Aime, M. (2024). How to Get Free or Low-Cost Mammograms in Your State. Goodrx.com. https://www.goodrx.com/conditions/breast-cancer/free-mammogram

American Cancer Society (2023). Breast Density and Your Mammogram Report.  American Cancer Society. https://www.cancer.org/cancer/types/breast-cancer/screening-tests-and-early-detection/mammograms/breast-density-and-your-mammogram-report.html#:~:text=Breast%20density%20is%20a%20measure%20of%20how%20much,It%20isn%E2%80%99t%20related%20to%20breast%20size%20or%20firmness.

DenseBreast-info.com.  State Law Map.  DenseBreast-info., Inc. https://densebreast-info.org/legislative-information/state-legislation-map/#:~:text=Based%20on%20DBI%20analysis%2C%20currently%2039%C2%A0states%20and%20the,density%3B%20some%20laws%20require%20only%20general%20notification%C2%A0aboutbreast%20density

Hernden, J. (2024).  Find a Low-Cost or Free Mammogram Near You.  Verywellhealth.com.  https://www.verywellhealth.com/find-free-or-low-cost-mammograms-429861