Open Letter to the Newly Diagnosed – Cancer Anniversary (Year 4)

​As Labor Day approaches, you won't find me making big plans for the long weekend. I tend to keep my calendar open so I can take it easy and reflect on what this holiday has come to mean for me. Four years ago, I was diagnosed with breast cancer. What makes this anniversary a bit raw is that I found out that a friend was diagnosed last week. I felt compelled to write an open letter to her, and anyone else in my network who has been impacted by cancer. The fear, confusion, guilt, and pain of it all never really goes away, but it does get a little easier to navigate. I've chosen to provide a shoulder to cry on for those new to the cancer club. Trust me, the bouncer at the door of this club is a real jerk, and the cover fee is absurd, but once you're inside you'll find a lovely community of people who have been where you are and have the inner knowing that you're going to be OKAY. Those early days put you in a swirl because you’re faced with so many micro decisions that need to be navigated carefully with very little information. So, my advice to newly diagnosed friends and family would be the following:

• Ask for a nurse navigator or care coordinator to be assigned to you. Hopefully your chosen facility offers this service. Mine didn't. This person can help you better understand treatment options, terminology, identify resources and make recommendations.
  
  

• Get a cute folder or binder that you can carry around with you to appointments. This allows you to keep all your medical records and pamphlets in one place. This is helpful for your partner as well so they can review the paperwork even when you're too overwhelmed to deal with it. And you will be.

 

• Resist the temptation to hunt for answers on WebMD or Dr. Google. It’s not worth the toil on your mental health. Get your information directly from your care team. Do advocate for yourself, though. Bring your partner or trusted friend to appointments to help take notes and be a second set of ears when you are overwhelmed by the flood of information. Research is helpful to a point, but it can cause more confusion than it’s worth in some cases. Pack your patience and write all of your questions down so you have them ready for your next visit.

 

• I recommend joining online communities for your specific type of cancer so you can read other’s stories and contribute when you’re feeling up to it. I found it so helpful to be a part of forums where you feel less alone. Cancer is isolating – because the initial flood of love and support from your family and friends fades and folks awkwardly don’t quite know how to help. In the end, it’s always comforting to see that you’re not alone on this journey of treatment and recovery. Tune out whenever it gets to be too much, as you would do with any social media channel. Reach out if you’d like for me to share my favorite groups.
  
  
• If you don't like what you've been told by the first doctor/surgeon you meet with - get a second opinion. You have every right to seek out additional answers and treatment plans if something doesn't feel right. I had to do this, and it was the best decision I could have made. Thank you for listening to me and recommending a colleague, Dr. Dunnavant! You may need to continue “shopping” for new providers over time.

 

• Let go of needing to have answers to every question. In most cases, you're not going to get answers. I think it's important for you to know this at the beginning of your journey. What it boils down to is this…bad things happen to good people every single day, multiple times a day. Good people get in car accidents, good people have house fires, good people get laid off from their jobs. You will probably never find out where your cancer came from so stop asking God why this happened to you. Instead, flip your mindset to the positive so you can prepare for the fight ahead. Answers and insights will come to you in glimmers and flashes over time. Maybe it was the wake up call you needed to take better care of yourself – but there are plenty of fit and active people who are diagnosed every day. So, there’s no value in beating yourself up over what you could’ve done differently. Put those thoughts in your rearview and forge ahead to get through this new phase you’re entering.

 

• Prepare your boss and coworkers for the flexible schedule you will need to make it to all your appointments. Once a treatment plan is in place, you’ll most likely have surgeries and a radiation schedule that will need to be coordinated around work and family obligations. If you run up against any resistance to your need for flexibility during this time, that should indicate that a new job, or way of working, is in your future. After treatment, accept that you will be in a doctor’s office every six months at a minimum. Radiation, Oncology, GYN, surgeon, PCP, and any other provider they add to your mix. I also see my Dermatologist every six months due to a cancerous spot that was removed in 2019.
  
  
• Go ahead and get the genetic testing and encourage the women AND men in your family to do the same. Sometimes the men are the carriers of certain genetic markers and it's illuminating for everyone in your family to know where they stand with their health. But these results are not going to reveal definitive causes for your cancer.
  
  
• People say the darndest things…Folks are going to give you all sorts of unsolicited and unhelpful advice. They mean well and are trying to lighten the mood in most cases, but all you can really do is shake your head. Take it in stride and don’t let it get to you. Your village will show up for you. Everyone else will reveal themselves in good time. And the rest simply don’t know what to say, obviously! Real examples of what some people said to me:
  • “Go ahead and get the double mastectomy so you can get a new set of b**bs.”
  • “Thank goodness you got the ‘good’ cancer.”
  • “Well, at least they caught it early. You’ll be back at work in no time.”
  • “How do you feel? (*Answers honestly) Well, you look great!”

• Be honest with your kids. Inevitably some grown up in your circle is going to slip up and mention the "c" word in front of them if you try to keep it from them. They will take the news better than you think. There are some great resources out there for younger children, but it's okay for them to be sad and see you upset. That's completely normal. They will also see how strong you are during treatment, and you'll have additional glimmers of clarity as you guide them through the process of having a front row seat to your survival.
  
  
• So many warriors who came before me had to endure chemotherapy. I was prescribed a lumpectomy and 20 rounds of radiation. That treatment plan alone was enough for me. I've now been on Tamoxifen since January of 2021, and honestly, living life on this medication has been worse than surgery and radiation combined. The same drug that's keeping my odds of reoccurrence low has stripped away so much of what I need to be who I truly am. It has stolen my joy, my clarity, and my energy, but I'll continue to summon the strength to get up every day because I want to see my kids grow up, I want to grow old with my husband, and I want to enjoy our eventual retirement.

I'm used to joining boards and being a member of a variety of organizations, but being a member of the miscarriage club, the skin cancer club, and now the breast cancer club were never in my plans. My favorite role in all of this has been mentor. At any time, any day of the week, I want all of you to know that you can call me to vent, cry, scream, air your frustrations with our healthcare system, talk through what's being thrown at you by your medical providers, or to simply pray together. I'm four years into this journey and with that comes a sense of calm and peace that I would like to pass along to anyone who needs to borrow some for themselves. It certainly doesn't mean I'm not scared, or that I don't think about the risk of reoccurrence every single day of my life, but warriors must do things while scared. That's the only way to move the needle, make progress, and beat this thing. To bolster your armor - choose your why, print some calming pictures that you can take into the operating room with you, maybe even curate a playlist, but take some deep breaths and know that you are not alone, you WILL be okay, and this ordeal will make you stronger when you’re on the other side of it. You’ll feel a sense of purpose and gratitude the first time you serve as a mentor to someone in your circle who is newly diagnosed. I'm here for you, my brothers and sisters.

Call to Action: Remember to schedule your mammogram and any other annual screenings, because a diagnosis today is SO much better than a diagnosis that’s too late.
 
With love,
Linné
 
P.S. What advice would you give to someone you care about who was recently diagnosed with a scary disease or disorder? Please share your insights here so everyone can benefit from your wisdom!