In my Shock & Disbelief post, I mentioned and pictured my MammaPrint test results that was ran on my first biopsy. I want to provide a little more information for you on that test. A company called Agendia does the MammaPrint test. The goal of the test is to “predict risk of breast cancer recurrence”.
The test spits out a report, that I shared in the post linked to above, that says “High Risk” or “Low Risk” regarding the chance that the cancer will recur within 5 years. According to BreastCancer.org and Agendia’s webpage, it is used to analyze early-stage BC that is stage 1 or 2, tumor size up to 5 cm, and are either lymph node-negative or 1-3 positive lymph nodes. Also, it can be used for invasive breast cancers.
I’m still not sure where this 5 year line in the sand came from, but it is a crock of BS. As they statistically know that ER+ breast cancers tend to recur after the 5 year mark, sometimes 10 – 20 years out. And statistically the subtype of Triple-Negative breast cancers tend to recur earlier and the risk of recurrence declines after 5 years. More on that later….back to MammaPrint testing.
Agendia also provides a BluePrint testing that is a genomic test that analyzes the activity of 80 genes from the tumor sample, which helps predict how a cancer is likely to behave and hopefully predict how the cancer may respond to treatment. The BluePrint test provides subtyping information: “Luminal-type, HER2-type, and Basal-type. This allows for the doctor to make more informed treatment recommendations.
This test is the only test that was done throughout my whole journey (thus far) that provided me with the information that the cancer was Basal Cell Type. So, I’m quite thankful that this test was run on my biopsy.
I will talk about the Oncotype test later, as it tends to be more common.
As a God fearing, Bible believing Christian….after a cancer diagnosis….I find myself in tears quite often.
I find myself deeply affected by the death of other women with breast cancer that I’ve seen and talked to through various social media modalities.
It seems lately there have been several people I know in my extended family, family, and work family that have lost or are losing family members. These loses are affecting me more deeply than they ever would have before my diagnosis. I find myself in tears so frequently these days.
God has given me more compassion, empathy, and sympathy and at a deeper level than I’ve ever had or experienced before my diagnosis. God has also given me a heart and desire to pray for the salvation of the loved ones of those that have died. I also cry not knowing if the person who passed was saved by the sacrificial blood of Jesus Christ who die for our sins and rose again for our salvation and hope.
I imagine that facing my own mortality greatly feeds into this change in me. The suffering, the unknown, the lack of control, and the fear that grips me…..all drives me to the feet of my savior. To rely only on Him, for He is my only hope and the only peace I can have.
As I sit here this morning preparing to order flowers to send to a colleague’s dad’s funeral, I think about trauma he will have to work through from having to give CPR to his father. I think about the trauma his mother is dealing with from finding her husband on the floor of the garage. I pray for them both. His dad was only one year younger than my dad is now. My heart is so heavy with the things we have to deal with on this fallen, sinful, broke down planet.
Do not let another day go by without calling or going to see those who you love. We are not guaranteed tomorrow.
The only hope we have my friends is Jesus the Christ. The one and only savior. If your focus is on anything other than Jesus, you will find yourself in peril.
If you haven’t already….read my last post “It Is Cancer” to get you caught up to this post.
In my last post, I don’t think I said anything about us telling our parents what was going on. The days between finding the lump and official diagnosis are so blurry; as are the days just after the diagnosis. So, I can’t remember if I told my parents before my diagnostic testing or after, but somewhere in there my husband and I drove an hour away to my Dad’s house on a random day during the week so that I could tell him what was going on. I think he was as shocked as I was, but in true form he held his cool and composure and gave me his advice. We didn’t stay long that day. The same day I called my Mom to give her the news too. She sounded the same as my dad did. Those were really hard conversations to have, but since I didn’t officially know anything yet, everyone….including myself was in the “don’t freak out; let’s wait and see” frame of mind.
Waiting for test results is one of the most difficult if not the most difficult part of dealing with cancer. Waiting on the biopsy results was brutal…..while I waited I found a nearby nutritional IV clinic and got an immune boosting IV. I felt like doing something, it was better than doing nothing.
The Tuesday I was given the diagnosis, I called my husband from my vehicle to tell him the news. I was driving home and he was going to meet me there. The world suddenly looked different from my eyes….hazy. I had a million thoughts and questions running through my head, yet was unable to think or focus. I needed time. But, I needed to tell my parents the results….I called them both and told them “it is cancer”. It is one of the most difficult conversations I’ve ever had with them. My husband told his parents for me.
Honestly, I didn’t want anyone to know. I wanted to keep it close to the vest. I didn’t want people asking me questions I didn’t know the answers to; and I didn’t know the answer to anything….not even how I was feeling.
By that Thursday, I had an appointment with an oncologist that my GP recommended. I was not a fan. While I personally appreciate someone being straight with me, in my emotional state, I didn’t appreciate his lack of compassion at all. He didn’t present options, he presented to me as though there was one way to skin-the-cat and that was it. But I needed information….so I kept him on the books while I figured out what to do next. He had ordered a MammaPrint test on my biopsy tissue that came back as High risk, Basal-type which he explained was rare and aggressive. The report said that the Distant Metastasis Free Interval with chemotherapy and hormonal therapy together was 94.6% predicted benefit at 5-years. When he said the word “chemotherapy” I broke; I BROKE down. I am not one to cry in front of strangers or even people that I know for that matter. I was feeling venerable and embarrassed that I cried. I didn’t want to accept his recommendation. I was hurt and angry. I cried all the way home from the appointment.
At this point, I realized I didn’t know much about this world and what exactly the oncologist was talking about and I needed to get educated on the allopathic gargin. In the meantime, I decided to interview oncologists until I found one that I liked. I received recommendations from my plastic surgeon’s nurse practitioner and another acquaintance that was currently going through treatment for triple negative breast cancer. I made 3 appointments with 3 other oncologist from 3 different institutions with the goal of getting a consensus as well as choosing someone. I sent them all my medical information and armed myself with “Chris Beast Cancer’s – 20 Questions to Ask your Oncologist” a bit of a joke really….but it did open my eyes to the gaps in the standard of care and also the difference between how allopathic medicine and alternative medicines look at the body and cancer.
I called the plastic surgeon (that I already had an appointment scheduled with for the week after on Wednesday) and told them what was going on and they recommended and scheduled an adjunctive appointment with a surgical oncologist they work with frequently. Turns out she was supposed to be one of the best in town.
By the time the weekend hit, after I received my official diagnosis, I had ordered 10 or 12 cancer books off Amazon and done tons of Googling. I went to my Dad’s house for my monthly weekend visit and spent the whole weekend on the couch pouring over these books, highlight, tabbing etc. Everyone in the house moved around and sat around and didn’t say much to me (giving me the space and quite to read) during that weekend. I started researching and scheduling phone consultation appointments with various alternative cancer treatment centers all over the U.S. and Mexico. I needed to be educated. I needed to feel some semblance of control. I needed to get a grasp on what I was going to do. I felt a sense of urgency on the verge of panic. I am a big believer in the body’s ability to heal itself given the correct inputs. I was initially so against chemo and radiation; particularly radiation. But cancer is complicated. The reason cancer occurs is complicated. I didn’t know enough; I felt like I was flying blind. I was so confused about how this could happen to me, scared of suffering, and in shock that at 42 years old I was dealing with cancer.
I mentioned in my last post that the day I posted was my 1-year anniversary of my official breast cancer diagnosis. Allow me to backtrack and catch you up to the diagnosis.
When I’m at the office I take my lunch break and split it into two 30 minute walks during the day. In mid-February of 2019 I was taking an afternoon walk and my right breast itched and I scratched, when I did I felt something out of the ordinary. I tried to find it again and couldn’t. Over the next few days it kept nagging at me that I had felt something; so I gave myself a breast exam in the shower. Sure enough….I found it. I panicked a little inside. When I got out of the shower I asked my husband to come into the bathroom and told him “I think I found a lump” “feel it”. He said “no, I don’t want to feel it” I asked him to “feel it, so I know I’m not crazy”. He felt it….confirming that I was in fact not crazy; regardless of the fact that I was desperately hoping that I was.
I had done a bunch of lab work with my GP a week prior, which is pretty typical for me to do fairly frequently, because I have been managing hypothyroidism for about 5 years and am a data junky and believe that if I don’t test I won’t know. Test don’t guess. Knowledge + Action = Power, so I test. I had an appointment with my GP to review my labs about a week later, so I figured I’d wait and bring it to her attention in the appointment. I called her office to let them know that I wanted her to do a breast exam on me when I came in.
I tried to not think about it too much or freak out between that time and when I went in to see the doctor. I think I was still subconsciously freaking out though. I went to my doctor appointment the last Tuesday in February 2019, she confirmed she felt a lump. She said that she thought that it probably was scar tissue building up on the port on my 20 year old saline implants. I was planning to remove my implants and do a breast lift in the summer of 2019 when my boss was on vacation and already had a consultation scheduled with a reconstructive plastic surgeon, who specializes in breast reconstruction, at the end of March 2019. She wrote orders to have a bilateral mammogram and ultrasound. I found a breast clinic near my office and scheduled an appointment two weeks later. I clung to her theory in my head so that I could mentally make it through the two weeks of waiting.
In 2017 my OBGYN ordered a Myriad myRisk Hereditary Cancer test, because one of my immediate relatives had been treated for cancer. My Breast Cancer Risk Score was not calculated on this test, my 5-Year Breast Cancer Risk was not calculated, nor was my Remaining Lifetime Breast Cancer Risk, but all three could have been tested. FAIL. The BRCA genes were tested and came back negative. The only gene that showed a mutation out of the 28 they tested was the NBN gene with a note of “uncertain clinical significance”, meaning they don’t know if this mutation will result in an increased risk of breast cancer. However, after my diagnosis I Googled NBN gene the first thing that comes up is that this gene mutation results in an increased risk of breast cancer. When I received the results and report I was told by my OBGYN that it was good and I shouldn’t worry; that was October of 2017.
In 2019 was 42 and was supposed to start mammograms at 40 (in 2017), I had not. I had researched thermography in 2017 and again in 2018 and wanted to do that, but put it off because I kept telling myself “I shouldn’t spend the money on it right now” because thermography costs are 100% out-of-pocket. Had I done the thermography back when I originally wanted to, I believe I would have found out earlier than I did that something wasn’t going well in my breast. These things in retrospect prove to me (and hopefully to you) that you should always follow your intuition and gut instincts. Spend the money on your health regardless of the costs.
After two week of waiting, my husband and I finally went to the breast clinic. I had no idea what to expect. I sat around in the lobby thinking I don’t belong here….all the women looked sad and scared and most of them were older than me. I’m sure I looked sad and scared to them too. I didn’t realize they wouldn’t allow my husband to come along with me either. Talk about feeling vulnerable and alone. They came and got me and made him stay in the lobby. I went back changed in to the robe or gown they had and was ushered into a second lobby. Then they came and got me and I went into the mammogram room. I told the woman it was my first time and I had old implants and I needed her not to bust them. I agreed to do a 3D mammogram to get as much detail and information as possible. The lady was very good at her job, was gentle, and got all the pictures needed pretty quickly. I was so grateful to her; as I learned later this experience is not the norm. I asked if my husband could be in the room for the ultrasound; they went and got him for me. They had already started when he arrived and he looked at the screen and said “it looks jagged and misshapen”…..and that is when I knew it was cancer. I scheduled an ultrasound guided needle core biopsy before I left for the following Monday, but I wanted it done sooner.
When I got in the changing room I cried. I cried all the way to the restaurant where we were meeting one of my very good friends for lunch so I could drowned my fears in margaritas before I changed my diet. The next day I started eating only vegetables, green apples, berries, and high-quality meats (aka: wild-caught, free-range, pastured, grass-fed/finished etc.). Again….subconsciously knowing what was ahead of me.
The next morning, I called every breast center within a reasonable driving distance to see if I could get my biopsy done that week instead of waiting until Monday, I was able to get an appointment that Thursday. Again, I thought they’d allow my husband back with me for moral support, but no…..the ladies were really nice and professional….you could tell they were jaded though, it was sad.
The core biopsy itself didn’t hurt, they numbed me, but afterwards it was not pleasant. They walked me through each step as they were doing it, so I knew what to expect. I wasn’t watching it though. After the biopsy was over they told me I had to have more mammogram pictures done to confirm that the clip they placed in or near the tumor was in the correct place. This little piece of metal they place inside you is to mark the location, so in the future they know where it was. I couldn’t imagine being squished after they just poked holes in my body and tumor. They said it wouldn’t hurt because the numbing would still be in effect, however my body metabolizes lidocaine quickly and it had worn off by the time they did the mammogram pictures. It was a quite painful and traumatic experience. I went to the dressing room to change back into my shirt with a tiny little “ice pack” that was barely cold and cried. I was already getting good at crying in dressing rooms. I bruised pretty badly and was very sore. In the time between my biopsy and my first surgery, which was about a month, the site of the tumor and biopsy was swollen and hurt the whole time. I wish I wouldn’t have done the biopsy and went straight for surgery.
The next Monday, I told my boss what was going on and explained that I was waiting for a phone call to tell me the biopsy results and if they told me it was cancer, I’d need to leave the office immediately. He was very understanding. On Tuesday, 03/19/2019, my doctor called me to tell me that the biopsy results reveled “it is cancer”. I already subconsciously knew that it was. I told my boss the results, I got my stuff together and went to my car to cry and call my husband. I was shocked, devastated, and afraid.
I have another blog that I started a while back where I share recipes, talk about health, and exercise etc. I found that could typically can churn out blog posts relatively quickly for it. It is quite ironic that I have a blog about health and here I am on this blog talking about cancer….the opposite of health….
But here I am….the good news is that nothing that I wrote or shared there is negated by cancer or this blog; it actually enhances this blog.
All that to say….I’m finding writing on this blog daunting, because there are so many topics and nuances to discuss and maneuver. So, know that my writing here will not be linear, it will look more like a pattern of a squirrel.
Who Am I?
My first post on this site “What is Cancer” will discuss via ‘Disclaimer’ who I am not. That is quite important.
Soooooo, who am I you ask? I am an average 40+ American woman. I live in Texas, just north of Houston. I have borne no children. I have a wonderful husband and sweet little French bulldog.
I have had poor health symptoms my whole life, as far back as I can remember into childhood. My digestive issues and allergies where bad since I was a toddler. I had terrible hormonal issues as I went into puberty and through my twenties. I drank lots of alcohol; smoked cigarettes for many years; have been under chronic (long-term) high stress for the majority of my life; took antibiotics, birth control, and other prescriptions for years; yo-yo dieted; and had vitamin and mineral deficiencies. Suffered a myriad of terrible symptoms over my life, all of which was my body crying out that something was wrong and needed help. Along the way I’ve been able to learn and make changes to improve my health and the symptoms, but a lot of the healthy habits I’d only be consistent with for a handful of years and then I’d stop. Boy do I wish now that I hadn’t stopped. I also didn’t realize that there were genetic predispositions also playing into it all. I’ve said many times that I’m really good at creating a perfect storm…..and boy did I ever this time. Hindsight is 20/20.
In February of 2019 I found a lump in my right breast. I was formally diagnosed (aka: confirmed cancer) one year ago today (Tuesday, March 19, 2019). There are moments in your life when you realize that nothing will ever be the same again…..and time will be forever divided into two parts, before this moment and after this moment. March 19, 2019 will forever be that moment of before and after for me.
I will be sharing lot of details about my story on future posts, but if you ever have any questions….please ask, I’m happy to share and help any way I can.
I’ve been thinking about this post for many months. I’ve been so overwhelmed at the prospect of answering this question because it is so very important, critical, that I get it right.
Disclaimer
I am not a doctor. I am not a DO. I am not a nurse practitioner. I am not a nurse. I am not a biologist. I am not an integrative practitioner. I am not a naturopathic doctor. I am not a functional medicine doctor. I am not a dietitian. I am not a nutritionist. I’ve not been educated nor trained or work in the medical field in any way. I think you get the point.
My education and knowledge about the human body has been self-taught over the past 20+ years and through experience.
I am going to share with you my definition of cancer based on talking to doctors, reading books, listening to podcasts, reading other people’s newsletters, and hour and hours of online research.
If you do not have the correct answer to what cancer is, then you cannot understand how to treat it.
My Definition of Cancer
Cancer is a complicated multifaceted cellular metabolic dysfunction/cellular disease-state within a person’s unique internal environment.
Simply put…cancer grows because there is a failure of the immune system to eliminate abnormal cells.
Naturally, it’s more complicated than just that. Cancer cells aid themselves in the evasion of the immune system by factors like immunosuppressive cytokines, apoptosis resistance, and MHC antigens…..all these things signal to the immune cells “don’t eat me”. I could fall down a rabbit hole pretty quickly here, so I’m going to stop at that.
Every post I post from this point forward is to be read through the lens of this definition.
