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motivatehopestrength · 6 years

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It‘s beginning to feel like a big prank. I am looking around for someone, or maybe something like a hidden camera because I love a good joke. But it could be karma or some kind of payback, or maybe it‘s just you God, testing me again? For what, I‘d sure like to know. Seriously, who is this puppet master behind this life debacle and what exactly is it that I did to be thrown all these crappy things over the last few years? I‘ll admit I was a mean girl in high school when I kissed Suzi‘s boyfriend Bill. But I only kissed the guy once, I didn’t screw him. They even got married!!! Meanwhile look at who got cheated on and divorced. And how about that surprise open heart surgery tossed my way in 2016? That was no walk in the park. Seriously, I just finished paying my medical bills and along comes another one of life‘s surprises. Enough with testing my strength. It’s weakening my savings account by paying lawyers and medical bills. Money that needs to instead be going towards two weddings and a facelift. Who or what decided it was time to pull an Alan Funt with a “Surprise… You have breast Cancer.” (for those of you under the age of 50 insert Ashton Kutcher for Alan Funt) Regardless of the 5 Ws, I am shocked because I know I am not being punk’d but once again being tested. Someone is really trying to break me. However, I am a competitor and I love a challenge. Let me remind you, I hate to lose and my track record reflects that fact. So cancer, you probably should have checked with Karma, God, Suzi and even my ex-husband because they all would have told you, you picked the wrong bitch. I fight hard and I fight dirty. I am a Philly girl. #fucancer #bringit

A LUMP OF FAT ( and it goes a little something like that)

While on vacation in Iceland, I felt a slight pain on my left side of my chest. I see several heart doctors who routinely ask “Are you experiencing any chest pain?” My answer is always no, and I always find this a rather strange question. The doctors have all told me that my heart is strong and healthy and that I just had a bad valve. So I‘ve never looked for nor worried about chest pain. However, being out of the US, I began to worry. This slight pang came and went so I remained calm knowing in less than 24 hours I would be hearing the pilot say “Welcome to Philadelphia.” Once back in the City of Brotherly Love, my plan was to call my cardiologist first thing in the morning. However, that quickly changed to my gynecologist when I discovered that evening that this dull pain was not coming from my heart but rather an oddly shaped lump in my left breast. Oh boy was I relieved.

To say I know my body is huge understatement. My unknown congenital heart defect began to show signs when I was in my mid-forties and the complaints I voiced to my doctors were dismissed constantly for 6 years with them all telling me I’m fine, it’s stress and of course the reason all women are crazy…MENOPAUSE. Turned out it was a bicuspid aortic valve that formed an aortic aneurysm. This thankfully a new doctor caught it in time before it had ruptured. From May of 2017 up to my diagnosis of breast cancer on February 2018 I had this eerie deja vu feeling. Instead of hearing the words “You‘re fine“, I heard “There’s nothing there.” First, after having a breast exam by my Gynecologist I was sent for a diagnostic mammogram and an ultra sound of my left breast. All of these tests came back normal showing no mass. So, I was told to wait 4 months until my next visit because it was “probably a lump of fat or a lymph node” and “would likely go away on its own.” When I was still feeling the lump 4 months later in September I was sent to see a breast surgeon. I was excited that this appointment would give me peace of mind and a definitive answer as to what this lump could be. I was, after all, seeing “Philly’s Top Doc” of breast surgeons so she should know, right? Ushered quickly into an examining room I am informed that the doctor has a meeting so she needs to see me right now. My vitals will be taken “after” the doctor examines me. “Everything off from the waist down. Ties open in front.” I am handed the gown in a plastic bag in which I change into and I sit hopeful, my legs dangling off the end of the table and my boobs dangling in my gown. Without even looking at my face, the doctor entered the room, introduced herself as she went to the sink and washed her hands. She asked me a couple of questions. “Does breast cancer run in your family?” “No,” I said. I was instructed to lay back. Normal for a breast exam. When did you first feel the lump? “The end of March, but I need to stand up to find the lump for you.” She told me to sit up, and I watched as she quickly made some notes on the computer and then stood up and walked to the door. The “Top Doc,” said she really doesn’t feel anything and that it’s probably a lump of fat or a lymph-node and that I should come back in a few months if I’m still feeling anything. Before I could get a question out she was gone. She did have a meeting. “But Doctor… can I get an MRI?” I have questions, “umm is she coming back in? What about my vitals?” These questions weren’t really asked. No one came back for me to ask them too. I tossed my lovely gown in the bin, got dressed and left. Vitals? Not taken. My blood pressure was HIGH! I did however go get that second opinion you should always get. Surgeon number two and her tech could not find a mass on the ultrasound, so once again I was told it’s probably a fatty deposit or a lymph-node. This time I asked the doctor for an MRI but am told to come back in 6 months if I still feel something. As I leave, I am frustrated but know regardless I will not be back to this hospital, they don’t even have a Starbucks.

PAGING DR. GOOGLE & MS. KNOW-IT-ALL

To speak beyond ones sphere of knowledge is called a ultracrepidarian. Dates back to the story of Apelles, a famous greek painter who heard a cobbler criticizing how he had rendered a foot in a painting. The painter remarked back to the cobbler that he should stay in his own station and not go “beyond the sole“, hence the latin phrase ultra crepidam. Often, when I am running my mouth about something I just made up, half read, googled, might have overheard, my really good friends will laugh in my face knowing I am talking “out my ass“, hence the verb “bullshitter”.

My daily research on breast lumps, bumps and lymph nodes was giving me a feeling deep in my gut that I needed to be persistent, so I kept an appointment I made way over 3 months ago and went and saw surgeon number three. I was prepared to be an ultracrepidarian. Sitting in the exam room, I knew I wanted an MRI, and therefore wasn’t leaving without being sent for one. Petite Dr. Julia Tpchou entered the room and I don’t just jump on her, I attack. Full on crazy patient with tears. Here‘s where the movie director will add the violins: For 6 years I saw zillions of doctors complaining about not feeling well, only to find out I had a BAV and an aneurysm. I know my body! There’s a lump in my breast that should not be there. It’s not fat! I know my body! I know that mammograms are 87% correct in identifying breast cancer (I just threw that stat in my blog) and all of my ultrasounds shown nothing but I can feel the lump. I know my body! Dr. Tpchou told me that when she was in medical school a professor taught her that when a patient says they know their body, they usually do. Thanks Mr. Professor. She examined me thoroughly and she felt the lump, and she sent me for an MRI. That Friday afternoon following my MRI, I received a phone call from an office assistant with the results of my test. Great news. My MRI report was normal.

“Art is not what you see, but what you make others see.” Edgar Degas

THE RENDERING WAS WRONG. THE COBBLER WAS RIGHT!

That Monday morning following my Friday afternoon call, I received a call that Dr. Tchou wanted to see me at the hospital immediately, so I knew something was up. I finished training a client and drove straight to The University of Pennsylvania Hospital. Over the weekend, Dr. Tchou explained that when she saw that my MRI report had come back normal, without even a “suspicious mass“ noted, she decided to look herself at the MRI images. She pulls up my MRI on the computer. With my eyes focused on the screen she fired away at the enlarge key, and I watched as this tiny white dot appeared and grew bigger. “There’s your lump.” Finally a doctor who listened. I was scheduled for an ultra sound guided needle biopsy. University of Pennsylvania being a teaching hospital, usually has a fellow who checks on you before the attending physician. “The lump gets lost when I lie down.” This fell on deaf ears. The fellow, although determined to locate the lump on the ultrasound, did not succeed. Moments later the Radiologist entered. Petite woman, with a rather large presence, and she says to me “find the lump.” I need to stand to find it, so she firmly says, “Stand up. Find it. Put your thumb on it.” She took the cold, gelled probe, placed it firmly right where my thumb was and instantly started measuring the white looking image, aka: lump that appeared on the sonogram screen. In what was her last year of residency, the young doctor commented to me how she learned something new today. Was it that you can do a breast ultra sound to a standing patient, or that you should listen to what a patient has to say? Days later I found out that all six samples from my ultra sound guided needle biopsy had all come back inconclusive. I would next be scheduled for a lumpectomy. You know to remove a lump of fat.

BIG GIRLS DO CRY

I am told that I wear a tough exterior, but these past few years I know I have become softer inside. I cry a lot easier, which according to the real Dr. Google is hormonal. But the kind of crying that takes your breath away, leaves you unable to speak, feels like a panic attack… well, that has only happened twice to me. The first being when I put my dog Rocki down, and the second was when Dr. Tpchou phoned and told me that I had breast cancer. When I finally caught my breath, I replied “I really did not expect “it” to come back positive. I know what you’re thinking. Really Hope? Yes really! No one in my family has ever had cancer. Sitting on a Bosu ball in the private place where I went to take this call, an empty aerobic room, I looked at myself in the mirror and thought this can’t be happening. I call my very quiet, kindhearted boyfriend who not only listened to my crazy lump stuff for the last 6 months, but also spent his birthday sitting in a hospital while I had my lumpectomy. In-between sobs I very angrily tell him that I’m not a hypochondriac and “it” wasn’t a fucking “lump of fat.” I HAVE FUCKING BREAST CANCER and yes, I was right. I‘m always right! It wasn’t nothing and go ahead dump me. He should dump me. I would dump my sick ass. We’re not married so here‘s your chance to get out now. RUN! I won’t be mad at you. When I was done with my well justified rant, he assured me he wasn’t going anywhere because he said “That would be really bad juju.” “Ok then, sniff sniff You know I am so fucking mad.” He knew. With my adrenaline up I stuck my headphones back in walked out of the aerobic room and finished lifting. #chestday I did not tell my family, friends or announce it on Facebook. I knew nothing so there was nothing to tell. But what I did confirm is I have a few special people in my life whom I cannot thank enough for their help from my appointments to answering my questions to just being there. In February, 9 months after I first discovered that darn lump I had a lumpectomy, followed a few weeks later with a lymphadenectomy. The latter is done to see if the cancer had spread into my lymph nodes. Thankfully it had not. While I personally experienced more pain and difficulty in healing from my lymphadenectomy, I did not have a mastectomy, and would not dare to compare my procedures to the surgery of a mastectomy.

THERE IS NO “I” IN TEAM

Lumpectomy, Lymphadectomy & Proton Radiation (skin reaction 2 weeks after Proton partially due to sweaty jog bras)

Now

A slice of my tumor was mailed off to a lab for an Oncotype DX breast cancer test. The information gathered from this test would determine my cancer treatment. I needed this test to come back with a number that would allow me to skip chemo and jump right to radiation. While most patients discuss the side effects of their treatment with their doctors, I just needed to know if I would complete my treatment in time to go on a safari in Africa. For this amazing trip, tops on my bucket list, I was lucky to be asked to be part of prior to my diagnosis. The results of this tests held that answer. I sat weeks waiting for my oncotype score (because of a mix up) but finally got the results. I would not need chemo and that meant a shorter treatment plan. This was a giving me hope for Africa. It was now time to meet my “C” team. To my list of doctors I now add an Oncologist, Radiation Oncologist, and a Cardiology Oncologist. The last doctor, who will approve my treatments, Dr. Joseph Carver, wears giant red Beat-like cordless stethoscope headphones. His specialty is cardiac problems and cancer. He is my bonus doc because of my heart valve replacement and other leaky valves.

LET THE GAMES BEGIN

As if I was just here yesterday, I ran around the busy Perlman Center alone at Pennsylvania Hospital. Dressed in my work clothes (gym clothes), there I am squeezing in and out of crowded elevators, grasping my files, holding my Starbucks, running up and down the escalator, dropping papers, meeting doctors, googling words, spilling my coffee on myself, scheduling test appointments, checking my Facebook, and ducking familiar faces all while thinking, “is this for real?” The only things that have changed were the locations of the waiting rooms and the doctors. First, I see the quarterback of my team, my Oncologist. She sketched everything out for me. Explained and confirmed that there was nothing I did that gave me cancer. Not even drinking from the hose while playing outside as a kid. Having lost my period at 43 years old this caused me to enter menopause at a rather early age, and therefore produce higher levels of estrogen, which most likely fed the tumor causing it to grow. I found this tumor that wanted to hide and a lot had to do with having low body fat, and the pain I felt causing me to explore that area. But it was also found with persistence. Had I been older, heavier, would I have found it? Would I have listened to the doctors and have been satisfied with what they were saying along with the normal test results? My doctor assures me that my cancer cell being fed earlier gave it a chance to be found earlier and that was actually a good thing. I caught it at at stage one.

When cancer came calling I was ready. Since I live with the belief that exercise is a gift and something you should not take for granted, I am always in training for life. Knowing I have an upcoming open heart surgery within the next 8 to 10 years, possibly sooner, I will be prepared. As with most health issues, it’s always quite fascinating how several people can have almost the same exact diagnosis, and yet have totally different methods of treatment and recovery. Your overall health plays a major role in this. For my game plan, I sat with Dr. Gary Freedman and he sketched out for me several radiation options. All of the standard treatment plans would span 8 to 10 weeks. However, in a circle on the right side of the paper was the word “PROTONS.” Explaining the difference between photons and protons, Dr. Freedman informed me that I was an excellent candidate for Proton therapy. This treatment would in fact be a better option for keeping the radiation away from my heart. He offered me twice a day treatments, early morning and again later in the day that I could bang out in one week. I could hear the elephants from the savannah at that moment. Timing was perfect. I’d finish with enough time to grab my safari hat and my anti-malaria meds. But before I began any treatment I needed to tell my home team, my “A” team, my daughters. Tell them why an awful lot of their calls have gone to voicemail this past year, and why I’ve seemed so short lately. I have one living in NYC and one away at PSU, and I am their only parent. So I must do what I do best at times like this…..lie. I just found this little lump in my breast and the doctor took it out. (Insert joke and laugh) it was a little cancer, blah blah blah, it’s gone, went bye bye. Mom’s all good now. Just going to get a couple quick zaps of radiation before I go away….. And like deja vu from a few years ago when I gave my “I’m having a little heart procedure” speech, it worked perfectly for one of my two favorite daughters. Cue: violins, beating drums and cello …..Tears, anger, and fear.

THE WORLD AIN’T ALL SUNSHINE AND RAINBOWS

Wanted: women of Russian/European decent for extras in Creed II, being filmed in Philadelphia. According to my mom mom, and backed up by my Ancestry.com results this describes me. I love the movie Rocky, named my female boxer Rocki, and have seen all of the Rocky movies. This is my chance to use that college theatre degree and hopefully see Sylvester Stallone and Dolph. So what are my odds of receiving an email saying I was selected to be an extra for Creed II and it’s in the middle of my proton therapy? I‘ll tell you, according to real data much smaller than this Askenazi Jew of Russian decent getting breast cancer. FU cancer! #iwillbreaku

I thought I was strong and could do this myself, but apparently I was wrong. The 6am driving into the city was easy. I would come home and train one or two clients, workout, shower and then drive back for round two. While I was told, fatigue would kick in by mid week; it never did. Nor did it really kick in the following week. The metallic taste came quickly by day two. But seeing all of the children with cancer, nothing could prepare me for that, and the sadness that still resonates inside of me.

There are five treatment rooms that contain four gantries or cyclone machines and two waiting areas. That week I sat in the same waiting area with the pediatric cancer patients from The Children’s Hospital of Philadelphia dressed in my hospital gown and them in their own little gowns. Children of all different ages. A college kid popped in every day in-between his classes. I listened one day as he sat talking to a parent giving her hopes that her daughter would get the same positive outcome he was having. I’ll never forget my second treatment on my first day. When I came out of the dressing room in my gown, an entire family filled the patient waiting area. This little boy, about six, was giving a tour of his super cool looking proton cyclone to his huge family. They had all come to celebrate his last treatment. “They look like spinning space tunnels”, I said to his parents. I learned that he and most kids didn’t know the cyclone spins because they wear a molded mask to keep them immobilized and often use headphones to listen to music.

Making My Mold

These masks, some painted by the patient to look like a fake super hero, hung along side my body mold and too many other real super hero’s masks all week. When the little hero rang the bell, which is a distance away in the main lobby area, I was laying in my proton bed awaiting the beam, but I heard the bell, the applause and the cheering. It was a beautiful ring. I knew I was a lucky mom and a lucky woman. That week, twice a day I sat in the waiting room like the kids in a routine matter and when one of the Proton techs said “Hey Hope… Let’s do this.” I too would pop up and go into the space tunnel. Cause I too thought it was really cool.

Hey Nike, this is what a fitness addict looks like. My athletic apparel took me from the gym floor to the cyclone, and back to the gym. I even taught a spin class.

JUSTDOIT

DOING

On my last day I thanked the wonderful technicians who pulled, pushed and aligned my body up so precisely for the proton beam. With my left arm stabilized over my head and my bare boobs marked up, tattooed up and stickered up, I would wait for the beam to be directed to my cyclone. Every treatment seemed surreal. On my final day I bent down to say goodbye to a little boy about age 7, who was playing a video game on the floor. He had a brain tumor that had grown back for the third time and now he was trying Proton therapy at Penn. “Hey buddy I never ever want to see you here again. Ok?” Ok, strange lady, is what I’m sure he was thinking as he looked at me oddly and then went back to his video game. His mom told me that everyone says that to him, but he doesn’t get it. I think to myself, that’s a good thing.

Friday night around 6 pm at the time when most people are rushing home from work or to happy hour to hang with friends I concluded my proton therapy. Check out from this weeks stay included one last visit with Dr. Gary Freedman, who is the brilliant doctor that prescribed my beam’s precise pathway, it’s dose calculations, and everything needed to stop the protons in the bad area and keep the healthy organs and tissues healthy. While knowing that I do still have follow up appointments with my other doctors regarding future treatment, I ask Dr. Freedman the magic question, “Do I still have cancer?” He tells me I am a survivor. So like a little kid, on my last day I showed off my super cool cyclone spaceship to my daughter and my boyfriend who came to celebrate my final treatment with me. We then headed straight to the usually very crowded lobby so I could go ring that big silver bell. I pushed open the door and proclaim a big WTF? It’s 6:30pm on a Friday night the lobby is bare. The pranks just keep on coming. I rang the fuck out of that bell. ( Actually God it would have been even more funnier and pathetic if Madison and Kevin had not been there and I had to go ask someone to take my picture)

THE BIG “C”

Cancer, yet another eye opener in my life. I got even more clarity on where I stand in peoples lives. Your actions, not your intent, not what you post on social media, or who you claim to be, speaks louder to me now. Busy people make time for people that are important in their lives. Selfish people are always too busy, and only make time for themselves. Having a stressful day or a bad week is not an excuse for rude behavior. It’s called being a selfish asshole. Have a blessed day, you’re not sitting having cancer treatment.

I discovered I had this lack of knowledge about cancer and the medical “scientific facts”, and was woken up to people’s ignorance they are willing to spew from non-scientific sources. I do not have cancer from food, medicine, surgery, traveling, or too much exercise. Using organic soap and essential oils would not have prevented me from getting cancer. #womenlovewastingmoney Yes, people asked me some of these questions. Yes, I am a trainer. Yes, I am well aware I‘m not as strong or cut as I use to be I don’t need you to point this out. I‘ve been kinda busy. Yes, I eat a healthy diet. No, I am not giving up meat. There is no scientific evidence that changing your diet to just eating “alkaline” rich foods such as fruit, green vegetables, and other plant-based products discourages the growth of cancer cells by raising blood pH levels. This is not going to change the pH levels of your blood, because they are tightly regulated by the kidneys and lungs regardless of foods consumed. While a good diet is always important, it can’t cure cancer. (Please stop saying that a certain food “cures” cancer) There are cancerous cells in the body of every person that at any given moment and through lifestyle choices can become a full-blown disease. Some these cells will divide and become abnormal and cause cancer for no reason other than bad luck. Breast cancer does not run in my family. I am the first one to have been dealt this unlucky card. That does not mean my daughters will get breast cancer. So before you ask, I did get genetic tested. In fact I got the entire breast cancer panel test done which included the following genes: ATM, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, STK11, TP53 (a total of 9 genes). All were negative. Regardless, this does not mean I will not get any of these cancers; it just means I am not carrying the gene. Just as if any had come back positive, it does not positively mean I will get that cancer. It just means I carry a gene and depending on other factors my odds would increase. Having a genetic counselor through Penn’s Cancer Risk Program conduct these tests, and a full evaluation of me and my families medical history pertaining to cancer and discuss how this all works was very comforting and informative. Probably fewer mastectomies would occur if all women had access to these tests and also had genetic counseling. #healthcareforall

ON WEDNESDAY’S I WEAR BLACK (Actually everyday I wear black)

Around the same time I received my diagnosis of Stage 1 breast cancer a friend was diagnosed with a much more invasive cancer. It sucks that my friend’s battle is tougher, and all I can do is drop off food, a FUCK CANCER tee and drag her out to dinner and a cabaret. #thecountessandfriends There’s no ribbon for her rare cancer. Plenty of pink ones for mine. I find nothing pretty in pink about cancer and am not one to be a member of this pink ladies gang. It is, however, the color associated with the most successful marketing for a cause in history, raising a lot of money in the name of breast cancer awareness, but not for prevention and finding a cure. Despite all the pink products being sold, each year 40,000 women die from breast cancer.

While breast cancer is one of the top 4 cancers, it is lung cancer that kills more men and women than breast cancer and the other three top cancers combined. Just saying the word “cancer”, one feels they must whisper. She has cancer.But no one whispers she has heart disease. Heart disease is the number one killer of all women, more than all cancers combined. I‘m all for saving the tata‘s, but if the heart ain’t beating do I really care about my breast? Being that there are over 100 types of cancer can we just agree they all suck, wear a black ribbon for all of them, and have 100% of the money raised go to finding a cure for this awful disease? Please? Oh, that’s already taken by skin cancer.

Another storm survived. More contacts to the list, more tests pre-scheduled and now these awful meds I am being told I should take to prevent breast cancer from coming back. But who knows what storms lie ahead or in my body, and if there is anything to stop that storm from coming.

9/18 Post MRI Coast Looks Clear

If I learned anything this past year, it would be that no matter how physically prepared I am, I might not be mentally prepared to have the words when fate is questioned. I don’t need to always have the right words or the right answer but I will always speak from my soul and of course beyond my sole. #ultracrepidarian

I don’t know Only god knows where the story is For me, but I know where the story begins It’s up to us to choose Whatever we win or loose And I choose to win

So God, Please NO MORE DRAMA in my life!

CANCER, KARMA AND YES YOU TOO GOD ……I WIN!

My intent for writing this blog was not just to share my experience, but that hopefully someone who is ignoring a lump reads this and goes and gets it checked. I also found it frustrating that as a fitness professional over the age of 50, and someone who entered into menopause at and early age, 43 there were no blogs or info that I found giving me insight into treatment, recovery and especially the medicines and their effects on post-menopausal women who still lift weights..heavy. There are plenty of blogs and articles from ladies in their forties and below in the fitness profession who are pre-menopausal. Maybe eventually I’ll get to writing something for the fitness gals in their 50’s and 60’s who are still hitting the heavy weights, doing pushups galore etc. and discuss more of my personal issues. In the meantime feel free to message me if you have a question. As for the treatment plan I chose moving forward after my Proton therapy and the medications that were offered to me to avoid breast cancer I’ll leave it at this.

Everyone has their own journey and sometimes you have to go with your gut.

AFRICA- Check

KENYA May 2018

AFRICA – KENYA 2018 Checked it off the bucket list! (Thank you, Jill Schuler)

Please help CRUNCH out Pediatric Cancer. Like these amazing folks did this past September by spinning with me at Crunch Fitness for this great cause. Please donate to The Children’s Hospital of Philadelphia Cancer Center.

I also was so fortunate that during this past year, the weekend following my Lumpectomy to be part of an event that was so close to my heart nothing could have stopped me called the PHILLY SPIN-IN. A giant cycling event raising funds for pediatric heart disease. This event was truly amazing. A giant event for little hearts. I will post info on how you can donate and or be part of my team at the 2019 event. Please message me for information. Corporate donors wanted! [email protected]

PHILLY SPIN-IN

MOTIVATEHOPESTRENGTH.COM

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610-608-6087

Contact Hope Nagy

Email [email protected]

Are You there God? It’s Me Hope,WTF? It's beginning to feel like a big prank. I am looking around for someone, or maybe something like a hidden camera because I love a good joke.

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thegloober · 6 years

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When breast cancer screening guidelines conflict: Some patients face real consequences

Are my breast cancer and I on the wrong side of statistics, or just caught in the confusing and potentially devastating conflict between medical societies about when women should start breast-cancer screening?

One morning more than a year ago, it didn’t seem like either. As both of my kids cuddled in bed with my husband and me, I started the conversation I’d been dreading.

“Remember when I went to the doctor a few weeks ago?” I reminded my children. “Well, it turns out they found a bump in my boob. If it stays, it won’t be good for me. So we have to take it out.”

“What is it?” my 7-year-old son asked.

Because his grandfather had recently died, I was afraid to use the word “cancer.” But I also knew he was smart enough to figure it out. So I took a deep breath and continued, “Bumps like this are called cancer.”

His eyes got wide. “It’s not what Grandpa had,” I added quickly. “I have a different kind of cancer, and I’m going to be fine.”

At the time, I believed I was telling him the truth.

I had discovered the lump three weeks earlier during a random breast self-exam. I was 45 years old with a very low risk of breast cancer. The lump was so small I wasn’t even sure it warranted attention. But it also felt the kind of “different” I had been warned about when I was taught to do self-exams at age 16 — slightly harder and less likely to move around than the rest of my breast tissue .

In the spirit of due diligence, I went to my local breast care clinic to get the lump checked. I wasn’t concerned enough to bring my husband or a friend.

I met with a physician assistant. She began by doing a clinical breast exam, but couldn’t find the lump until I pointed it out to her. That led to an ultrasound, which led to a mammogram — my first — which led to a radiologist being concerned enough to perform a biopsy that afternoon.

Through it all, I remained calm. Due diligence, I kept thinking, that’s all this is. Never in my wildest dreams did I consider that I could actually have breast cancer.

But I could, and did, despite my kale salads, low-risk genes, and overall good health.

It started out as the curable kind, the kind where, after a grueling treatment regimen, you come out a “survivor.”

But to the surprise of my medical team, post-surgical scans revealed that my 3-centimeter tumor, which some of my doctors estimate had been developing for at least five years, had decided to kick up its heels and travel beyond its original location. This landed me in the far more terrifying and uncertain journey of metastatic breast cancer, otherwise known as stage 4 breast cancer. This is the incurable stage, the scary stage, the stage in which the odds of surviving beyond five years plummet.

I am the mother of two small children. Their well-being is intricately linked to my own. It is nothing short of devastating that I could very well die before they finish elementary school. Yet I am somehow learning to accept this fate.

I have learned that life is as much about showing up for each other’s suffering as it is celebrating each other’s accomplishments. I have learned that the robust health I enjoyed for 45 wonderful years was a privilege. I have accepted cancer as one of my great teachers, and I am finding my way down this unexpected path.

I have had a much harder time accepting that I was not screened for breast cancer before it was too late. Not because I couldn’t be bothered, was too anxious, or didn’t have health insurance, but because the guidelines for screening women in my age range are one hot mess of a controversy, and I fell through the cracks.

Two years before my diagnosis, when I was 43 years old, I asked my doctor if I should get a mammogram. I had a vague understanding that breast cancer screening protocols were in flux, but I wanted to be sure. My risk profile for the disease was very low. I was nursing my infant daughter, and I really did not want to stick my breasts in a vice grip (it’s not really that bad, but that’s how I was imagining it). My doctor told me that if I didn’t want a mammogram, I didn’t need to get one.

Her counsel was based on a set of widely used guidelines at the time that say having a mammogram is an “individual” decision for women under 50 at average risk for breast cancer. She had no reason to believe I was at risk, and I had no reason to believe I should question her judgement.

What I didn’t know, at the time, was that there are multiple and conflicting breast cancer screening guidelines for women between the ages of 40 to 49.

The confusion began in 2009 when the U.S. Preventive Services Task Force upended longstanding breast-cancer screening protocols by recommending that women with an average risk of the disease start having mammograms every other year at age 50, instead of at age 40. They cited concerns about false positives, anxiety, unnecessary treatment, and overdiagnosis. Their new guidelines were met with tremendous controversy and have not been universally adopted.

In 2015, the American Cancer Society changed its longstanding guidelines, recommending that women of average risk start having mammograms at 45, instead of 40.

The American College of Radiology, an organization of physicians on the front line of diagnosing cancer, among other things, has never wavered from its recommendation that women get their first mammogram at age 40.

This table says it all. There is almost no agreement between the seven major institutions that establish breast cancer screening protocols, especially for women in their 40s. Women and doctors depend on the recommendations these groups make. But which one should we use?

Each organization backs its recommendation with data. What I and many other women have trouble understanding is how essentially the same data generate such different recommendations.

In my case, early screening would almost certainly have detected my hormone-driven cancer early, before it was able to spread. My treatment would have been relatively straightforward (though no treatment for cancer is really “straightforward”). I would have been in the group of women with breast cancer in which the majority go on to live long and healthy lives, as opposed to being part of the group in which most do not.

But there are also stories of women who either do not benefit from early screening or who get put through treatment hell for cancers that never would have become life-threatening.

Who is on the wrong side of statistics?

Last year, in the United States alone, approximately 250,000 women were diagnosed with invasive breast cancer. Approximately 36,000 of them were between the ages of 40 and 49.

Smart, dedicated people are deeply engaged in this issue. But while they compare data sets, grapple with the statistical significance of lives like mine, and churn out conflicting guidelines, far too many women are left confused and misinformed about what is best for our health and long-term survival.

Leda Dederich is a patient advocate. This article originally appeared in STAT News.

Image credit: Shutterstock.com

Source: https://bloghyped.com/when-breast-cancer-screening-guidelines-conflict-some-patients-face-real-consequences/

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