- How to Support a Family Facing Breast Cancer
- Are You Dense? What About Your Breasts?
- Kathy’s Story: Fight. Stay positive.
- Mid-battle with Breast Cancer
- Each One Tell One: Heather Reimer’s Story
- Each One Tell One: Wendy Damonte and Her Mom’s Story
- Each One Tell One: Chiqeeta Jameson’s “Dense Breast” Experience
October is Breast Cancer Awareness Month, which has never really meant much to me because I don’t know anyone fighting it (yes, that sounds selfish, but I’m keeping this real). It seems everyone has an aunt, mom, sister, friend who is fighting breast cancer… except for me. That’s a great club to be excluded from! But all good things must come to an end, and my denial ended when a friend from college made the horrible announcement a few months ago that she is fighting breast cancer.
How could this be? She’s younger than I am! We’re not supposed to even have to THINK about mammograms for another decade!
Annie has become a education warrior, devouring everything she can learn about breast cancer and sharing it with her friends. None of us are immune, and burying our heads in the sand is just about the stupidest thing we can do. One of the biggest lessons I’m learning from her battle is to be your own advocate. Don’t let doctors blow you off with “you’re so young, don’t worry about it yet” or “you have no family history, so we can just wait another year.” I’ve heard both those things from doctors.
Here is Annie’s story… one that doesn’t have an ending yet; she’s still in the middle of her story, not sure what the next chapter will be.
Let’s start at the beginning – even before I was alive. In my family history, accounting for my entire family going back a few generations, the only incidence of breast cancer was with my great aunt (my dad’s dad’s sister) who was a Christian scientist and didn’t even get treated, dying in her 60s, and my aunt (my dad’s sister) who was successfully treated in her 70s and is now cancer free. My grandpa also had cancer – melanoma and lung (self inflicted for the most part).
That’s it! Nothing on my mom’s side and not much else going on anywhere else in the family.
Fast forward to 2006 where I was seen at a clinic (Women’s Health Specialists) and a small pea-sized lump was found in the right breast. Ultrasound done and the diagnosis, “probably benign.” It was suggested that I either get a biopsy or return six months later to get examined again. Shortly thereafter, I moved from Chico to L.A. and being a naïve 26 year old, I thought medical records automatically transferred to my new health care provider. Also being naïve, I assumed that doctors checked everyone’s breasts every chance they got since there was always breast cancer ribbons and pamphlets everywhere… I was so wrong.
It was always at the back of my mind to try to remember to ask my doctor to do a breast exam, but I kind of thought it was my responsibility to do so. I did, but never felt anything. I was clearly doing it wrong.
July 2014, age 34, right smack in the middle of my last semester of an MBA, I went to hug my other half, Sam, and “ouch!” that was unusually painful. I was pre-menstrual so pain was normal, but this time, out of reaction I pressed my flat palm straight against my right breast and there was a bump. I remember my heart stopping for a moment and verbalizing this, but having a low threshold for pain, this wasn’t unusual. With my annual pap smear scheduled for the following week at Kaiser, my current provider, I thought I would just wait to be seen to avoid the extra copay. At the beginning of the visit, I requested she check my breasts for lumps as I had a concerning moment the week before when I felt some pain and a lump. After the Pap was finished, she sent me on her way and forgot to check. I was home when I realized she forgot! And to be fair I forgot too, but still… Next day, I returned and made mention of the mishap and they tried to charge me with another copay. I asked that I not be charged, given that she did forget the day before. I was granted a free pass.
In this first exam, she definitely felt a lump, but since I was premenstrual, she wanted me to come back two weeks later. Two weeks later, I saw a different nurse who also confirmed I had a lump. A week later, the mammogram & ultrasound were scheduled. When they could not determine what the mass was, they asked to do a biopsy in which I agreed immediately. Then, back to the mammogram (the boob pancake-making machine as I more accurately refer to it).
Within a week, I got that dreaded call. The man who did the biopsy called me when I was wrapping up a workday with two girls I barely knew. He said “cancer cells were found” in a tone that was caring and sad and appropriate. But what did that mean? I assumed it was bad. But I wasn’t sure if there could be benign and malignant cancer cells so at first scared as hell, later that night we felt a feeling of weird relief and wishful thinking hoping that this could actually mean I had benign cancer cells (yes, this is how ignorant I was with cancer from the get-go). Needless to say, we were wrong. Cancer it was. I scheduled a consultation as soon as possible with my future surgeon to discuss treatment options. She went over what it all meant and that I had a positive estrogen receptor (which I later learned that this means my tumor likes to eat estrogen), Progesterone Receptor positive and Her2neu negative (still have no idea what the last two things mean) and I chose to get a lumpectomy. She said I would definitely need radiation and a pill later that would coat my estrogen or something so the tumors couldn’t thrive.
My surgeon left for vacation right after we spoke and didn’t return for 2 weeks. We scheduled the operation to take place the day after my graduation on 8/11/14. This was good timing for me since it gave me 2 weeks to absorb what was happening, finish graduate school, and have an extra glass of champagne before this new chapter was upon me. From one area of study to an entire crash course in cancer….
The lumpectomy went fantastic. I chose to go under so I wouldn’t remember a thing and I didn’t. I just remember the needle that inserted the blue die was horribly painful. They inject radioactive fluid and a blue die into the tumor so that it “bleeds” to the sentinel (the one most closely connected to the tumor) lymph node #1. They removed that node and a 2nd sentinel node.
About two weeks before surgery I was referred to the genetics department which went over my practically non-existent family history of cancer and then I opted to get tested for the BRCA1 & BRCA2 genetic mutations associated with higher risk and early onset of breast and other cancers. Two weeks later it was confirmed that I did indeed have the BRCA2 genetic mutation, which means that I inherited it from a parent (it turned out later from my dad). Everyone has the BRCA1 & BRCA2 genes, which are tumor suppressor genes (exactly what it sounds like – their primary function is to suppress any tumor activity), but when they are mutated, they no longer are as effective at doing that important job so people like me are at a higher risk for breast cancer and ovarian cancer than the rest of the general population.
Recovering from the operation that following week, I was expecting the best – not hoping, expecting. A week later, my parents and I met with my surgeon to go over the pathology report. She informed me grimly that I had stage 2B cancer, much worse than expected. My tumor was 2.8 and there was a benign satellite tumor as well that they removed. One lymph node was positive leaving me with a 24% chance that the breast cancer metastasized (spread out) into another area of the body like the bones, liver, or lung, etc. My surgeon had her professional opinion but wanted me to see an oncologist and she wanted to consult with the tumor board because I had so many factors (age, gene mutation, stage, etc.). A couple weeks later it was confirmed by everyone that I should be recommended to have dose AC to T chemo (very strong) and radiation and the pill.
After hearing all the info about the recommendations I looked into preserving my fertility options and it would cost me $10,000. I have been in a state of mass panic, researching every option I can to avoid chemo and more recently a state of complete paralysis. Like a deer caught in the headlight of a huge semi heading straight for me in slow motion. In recollection, when I first heard the words chemo, it felt like it was being told to someone else. This was not my situation or story – no way! I just graduated and was about to get ready to start a family. If I do chemo, I will never be able to have children. If I don’t my mother’s child will live a shorter life. Or so the options have been presented to me.
In my research, I have found several testimonies of people healing themselves from cancer through hemp oil, gerson theory, and other measures. I still have a LOT of research to do as they seem too good to be true. Since the beginning my gut has been telling me NO to chemo. I am a highly sensitive person who, a year before the original lump in 2006 was detected, got Stephen Johnson’s Syndrome (SJS) from a sulfate drug and almost died. I also took one flu shot and almost died (no exaggerations here, literally was in the ER and had to rush myself in since the wait was so long!). In short, I don’t do well with drugs – even Advil! So, I am hesitant to say the least.
I don’t know what the future holds. I am rolling the dice and feel that whatever way it lands, I am not making a choice I stand 100% behind. And not being much of a risk taker to begin with, this is petrifying. Two months ago, I was imagining a family, a good job, helping the environment and my community and owning a house some day. Now, I just see hospitals, tests, IVs, flowers, people seeing me as “sick” and being menopausal at age 36 with no children and no job.
I guess the take-away from all this I would like people to leave with besides a very gooey tissue and a dropped jaw is to never take your health for granted. Anything can happen. It’s like driving. You could be the best driver in the world and follow all the rules (like I did – you would never meet a more proactive patient than I) but sometimes a semi just comes out of nowhere and hits you flat on and there is just nothing in your power you can do to avoid it. The best advice I have for any young woman or mother of a girl or even guy is the following:
1. Have a Well-Woman Visit regularly (they say yearly, I say every six months) and make sure to tell your friends and family as well.
2. Get tested for the BRCA1 & BRCA2 genes.
3. Reduce your exposure to toxins (in cleaning products, car emissions, cigarette smoke (1st, 2nd, & 3rd hand), radiation, etc.). Read Silent Spring & Living Downstream – both authors had breast cancer also – for more info about cancer and our environmental exposures.