I have breast cancer
I have breast cancer. There, I said it, it’s out there, I wanted you to hear it from me. In case you’re someone who only likes to read the headlines – I am going to be okay, but it’s going to be a bumpy road for a while. Here’s my story.
Three weeks ago, I went in for my annual mammogram, it was October and that’s when I do my routine procedure. It was an uneventful Tuesday. On Wednesday I received a phone call saying some calcification had shown up on one side, it hadn’t been there last year, and they would like me to go to another clinic. Even though my clinic had done the 3D version, their equipment wasn’t able to get more in-depth imaging so I had to go to another clinic. They wanted me to go in a week. I said absolutely not – where I can I get in sooner? I drove 45 minutes away to another clinic on Thursday. Another 3D mammogram, this time with closer images of the area in question. After waiting for the radiologist to read the mammogram we were able to speak. He wanted to have a biopsy done – a special kind called a stereotactic biopsy. Deep breath.
But the good news was calcification is very common in women around 50 years old and older (I’m 48.5) and 80% of the time – it’s benign. The 20% of the time it’s not benign, it’s very early. Would probably require a small lumpectomy and maybe some radiation – but not even chemo. That was the good news. So I said – great, let’s do this biopsy now. Wait, they don’t do that type of biopsy at this clinic, but don’t worry, they’ll put in an order and the place that does them would call me that day. I waited for 3 hours – nothing. I called and they didn’t have the order. I waited another 3 hours – still didn’t have the order. I called the clinic from that morning and requested the order get put in. Two hours later I got a call to schedule my biopsy. This was October 27 and my first available appointment was November 29. Oh hell no.
I went to Google and found another local clinic that offered this type of biopsy. I spoke to Kandi from CRL Imaging in Edina. She is a patient facilitator (or guardian angel). She got me in on November 2 and immediately stepped in to help me navigate the process and what I needed. Okay, stressful to wait – but better than November 29 and now I had help. The images from my second mammogram were transferrable electronically, but unfortunately my OBGYN office who did my original mammogram couldn’t electronically transfer the original mammogram and all my previous imaging. They burned a CD and the next day I personally picked them up and drove them to the clinic doing the biopsy the next week.
The morning of November 2, I was driving to my appointment at 8AM and the phone rang. It was the doctor’s office calling to say the machine wasn’t working and they had to cancel my appointment. More deep breaths and yes, some tears of frustration. I went into the office and was ready to head to Wyoming, MN for our Board of Directors Tech Committee meeting when my phone rang. The machine was up and running and if I could come right now, they would do the biopsy. I headed to the appointment. By the way – the CD I ran around collecting and delivering wasn’t readable by the new clinic. Super helpful. The procedure itself wasn’t very fun, they kept telling me to be prepared for some pain until the numbing agent took effect. But I’m my mother’s daughter and have a high tolerance for pain – I’m also my father’s daughter and somehow end up trying to make everyone else more comfortable by making conversation and jokes rather than focus on my discomfort. It was fine.
I was told I would know the results in 24-48 hours. I was warned that 2 breast lab experts plus 2 radiologists were required to read the labs before the clinic would receive anything, but when the clinic received the report, it would be available in MYCHART at the same time. In other words, we will call you, please do not look for it first. Do they know me?
Thursday, November 3 I was sitting in the middle of a Polaris Board of Directors meeting very anxious. I couldn’t wait – around 11AM, I checked MYCHART. The diagnosis was in. I didn’t know exactly what the terms meant, but I knew it wasn’t good. I stepped out and called the doctor’s office who had just received the report too. Breast cancer. Maybe they had me mixed up with someone else, I don’t have a family history. How bad is this? I mean, I know it’s not good, but how bad is this? All I could think of was having to tell Gracie…and my dad and those two were gut wrenching for me. Mostly because of the impact losing my mom had on them. Deep breath. How soon can I get in to see a surgeon and oncologist? Kandi recommended three clinics and I said whoever can take me the fastest is who I want to see. She called me within 10 minutes – she got me into MHealth Fairview the next morning at 7:45AM. Kandi is that guardian angel.
Poor Marc was in London for work and was trying to absorb and support me from there. Anyone who knows Marc knows that was harder on him than it was on me. He’s my person and I know he’s got me when I start to fall. My dear friends, Jenny and Susan, stepped in helping me play Dr. Google (which I know you should never do, but we all do it), coming up with a list of questions for the next morning’s appointment and helping me think through my likely options and implications. Colleagues and friends who knew I was getting the biopsy or who found out because they were sitting next to me when I got the news all showed immense support immediately. And my boss. I cannot say enough about a boss who finds out you’ll be late to a portion of a board meeting that happens 4 times/year and says “of course you need to go take that appointment” and who consistently checked in on me. When the news came, the genuine empathy and support was immediate and clear. Maybe this isn’t fair, but you expect your friends and family to show up for you in a certain way – because they’re your friends and family. But to experience the support from so many work colleagues (who are also friends if I’m honest) can’t be taken for granted. I work at a special place with people who are authentic and passionate – and that extends to how they treat each other.
Jenny attended my surgical consult and oncology appointment via phone. She was my competent adult taking notes and ensuring I asked all the important questions (and absorbed it). She was also my sanity and kept me from cracking, telling me she doesn’t remember ever having to type the word nipple before and she had to do it a lot during the appointment.
So, here’s the deal. What I have is stage zero breast cancer. I didn’t even know there was a stage zero, but I sure as hell know zero is way better than any higher number when it comes to stage of cancer. I have some bad cells in a duct and it appears to be isolated there. Some people would say just watch it – it only turns to invasive cancer 20-30% of the time. Others will say do a lumpectomy to take that piece out and do radiation to kill anything that could have been missed. Outcomes are actually very good with that approach. The more extreme measure is a mastectomy – and the even more extreme measure is a double mastectomy, knowing only one breast is affected and duct cancer doesn’t travel.
There is more to the testing that was done. They grade the cells from 1-3. The surgeon says they’re looking at how cute or ugly your cancer cells are. One is cute. I’m a 2-3, which is very ugly. That means they’re more likely to want to come back and come back with a vengeance. They did say if they come back, they’re likely to come back as duct cancer first again, likely near the original spot.
As I ask myself often in life, “what would my mom do?”. Without hesitation I knew the answer, she would go aggressive and minimize risk as much as humanly possible. She might be scared, but she would show courage and fight like hell to live a full, quality life. I have made the decision to have a double mastectomy – with reconstruction. Whenever I heard about other people making this choice I always thought “well, that’s what I would do”. But it is different when it’s my own body. It’s a major surgery and will be a major recovery. I absolutely hesitated despite many of the closest women in my life telling me that’s what they would do. Because this time it’s me. And it’s stage zero and outcomes are really good without being so hard on me physically. But the mental game is different. Less that 1% recurrence with a double mastectomy – I don’t know many things in life that have better odds. I am taking the harder road short term to have peace of mind and not live in fear in the longer term. Both the surgeon and oncologist, who were incredible by the way, independently told me they would make the same choice in my shoes. This is what they do for a living so that says everything. So I’m really doing this.
I met with the reconstruction surgeon this morning. I will have the first part of reconstruction at the time of the mastectomy and a second outpatient surgery likely 6 months later. There may be additional surgeries required, but nothing as invasive or serious as the first – full reconstruction can take 12-18 months in total. I have an MRI on 11/21 to look for any invasive cancer that they could have possibly missed (lymph nodes for example). They don’t expect any surprises, but better to know. I am now waiting to get my surgery date. Any time now…I’m hoping we can do this in the next 4-6 weeks, but two surgeons, an available ER and holidays make it more challenging. Should be a 4-6 week recovery, but don’t count me out. I am sure I’ll be working from home as soon as I’m physically able (or I’ll mentally go bananas).
At 35 years old I did a baseline mammogram and starting at age 40, it became every year. Despite being told guidelines had changed and it isn’t required every year and some people will tell you – until you’re 50, don’t even worry about it, I always went. Even with no family history, it seemed like a good thing to do. Maybe 4-5 years ago I learned there was an option for a 3D mammogram. Despite being told insurance may not pay for the cost of a 3D versus a regular mammogram, I opted for the 3D being told it could get more granular. I was told if I hadn’t had annual mammograms and if it hadn’t been 3D, this would not have been caught. I was warned that even my upcoming MRI may not show the cancer – it’s that early…it hasn’t even formed a mass yet. People will ask me what they can do for me. This is simple. If you are a woman of 35 or older – or if you have women 35+ in your life – please push for a baseline mammogram at 35 and annual at 40 – with the 3D. My mission from here on out is to save lives like mine will be saved – because I did it annually and with a 3D. This surgery is going to suck – it’s scary as hell. But I intend to live a very full, long life and this science and technology will have saved me.
Lessons learned so far (besides getting the 3D mammogram annually):
· You have to be your own advocate. What if I had waited a month for the biopsy? What if I didn’t have the urgency/resources to get this evaluated and moving? Process/schedules are what they are – but you can influence your situation by initiative and resourcefulness. Don’t be passive, engage.
· Know yourself. People will ask why I’m not getting more medical opinions. Because I have the facts and stats and they alone don’t point me to the choice I’ve made. But I know me – and living in fear, waiting for something bad to happen won’t allow me to live my life the way I want to. Also, while the % of it coming back may be low, if it does and isn’t caught fast enough – it might not be able to be stopped. It’s not 100%, but as close as I can get is where I’m aiming at. I’ll take those odds and know I didn’t leave anything on the table, no matter what happens.
· Lean on your people. My mom used to talk about the outpouring of love and support and I was so grateful for her. But I never truly understood what that felt like until I needed it. People are everything in life and for every bad apple out there – I can point to 50 in my own life who exceed every possible expectation. True empathy, support and love (yes, I’m cheesy) win.
· Dogs are the best people. That’s a direct quote from my colleague and friend, Holly. But it’s true. The day I got the news I was laying in my bed after getting home from work. Dreading having to tell Gracie – I just laid there on the phone with some friends. Waffles and Pancakes completely sensed my emotions and were stuck to me like glue for 2 days. My boys are occasionally little assholes, but they’re my babies and I love them. When I went to meet with the surgeon and oncologist, I returned to find a torn up (perfectly good) box of tissues all over my bed. I think the news really hurt their feelings 😊.
· Sometimes shitty things happen. I do everything I can to be healthy. I eat well, I exercise, I take good care of my skin and body with massage. I don’t drink (no judgment if you do), I don’t smoke, I don’t do drugs, I wear my seatbelt. Yes, I do like a good Mountain Dew Zero, but a girl’s gotta have some vices. Sometimes no matter what you do, shitty things happen. Trying to figure out what could have caused this is fruitless and unhelpful.
· You can’t control what happens to you, but you do control how you handle it. Needs no additional explanation.
· I am stronger than I realize. I break down, I get snippy, but when push comes to shove, I will be okay. My story is not fully written…I have more to do.
· Keeping people informed and responding to support can be exhausting. This one is tough because everyone is trying so hard to be supportive per “lean on your people” above. Sometimes I do feel like talking or texting, sometimes I don’t. Sometimes I have the energy to do it with certain people and not others. It’s not because I don’t like some people, but it takes a different level of energy to engage at different times with different people. Please know I very much appreciate it, but have to take care of myself and sometimes that means not putting in the energy to engage. That sounds so rude and selfish – but those who know me know I’m fairly straightforward and would rather be upfront. I haven’t even gone through surgery and some days I don’t even have the energy to click on a text attachment (sometimes I do). Just know – I do appreciate the outreach. You might get a thumbs up because I want to show I got it, but may not have any more gas in the tank 😊. I will do my best and/or leverage a couple people to help spread the word for me as there is news to report. My friend, Jenny Cohn, has generously volunteered to help keep people in the loop. If you don’t hear from me or want to know more, you can email her at jcohn19@gmail.com
Please feel free to share this with anyone I may have missed. I wasn’t intending to be exclusionary, but as you can imagine, my brain is a little fuzzy right now.
Love,
Pam