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You’ve been diagnosed with breast cancer.
I am so, so sorry. My diagnosis came five years ago, and I remember exactly the way it felt to hear the words “I’m afraid that it *is* cancer…”
I remember the look of fear on my husband’s face. I remember running from one appointment to another and getting nasty, depressing, scary news at all of them. I remember the absolute disbelief I felt in hearing I had a life threatening disease when I felt just fine.
I am not going to give you any medical advice. You will have a team of doctors giving you that. I do think you should probably listen to them, or get a second opinion from another team whose advice you will feel comfortable following. I want to share with you the other stuff you need to know.
You are about to start climbing a mountain.
I know it looks impossibly high when you are standing at the bottom of it, but you will get to the top. Just keep putting one foot in front of the other. Here are some things to keep in mind as you do so.
Table of Contents
Get your medical team in place
My team had an oncologist, a surgeon, a plastic surgeon, a radiation oncologist, an integrative oncologist, and a counselor among others. You’ll want to consider not only whether or not the medical team has a manner that makes you comfortable and advice that you trust, but you’ll want to consider how close they are to you geographically.
I was often at the cancer center several times a week, getting blood work, getting chemo, getting Neulasta shots, and checking in with a doctor or nurse. My radiation appointments were every weekday for five weeks.
I was fortunate that all of my appointments were within a 30-minute drive. I know several women that drove an hour or more each way for treatment or moved in with a family member who was close to a center while their treatment was being done. This is a lot of extra hassle to manage when you are already sick and tired.
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Think about how you’ll remember and organize medical information
Take a buddy (and/or a device for note-taking) to every appointment
I found it was helpful to take a buddy (usually my husband) along with me to my appointments, at least in the beginning. He was good not only for moral support, but as another set of ears when confusing medical information was being relayed.
I also took copious notes in my iPad at visits—writing down questions before I arrived and notating answers during the appointment. If you can’t bring another set of ears to the appointment, consider asking your doctor if you can record the information to review later.
Breast Cancer Treatment is Overwhelming
Organizing all of your medical information shouldn’t be.
The You Can Cancer Planner was created by a survivor, for survivors.
Get access to the online portal
Many doctors’ offices now have online portals where their patients can access their medical histories, test results, etc. I’d definitely recommend signing up for these and becoming familiar with how to use them.
Organize all this information
You’ll also want to organize all of your medical information someplace. The most reliable way to do this is on paper in a binder. I’ve looked into several apps for this purpose. All of them have heartbreaking reviews of data being lost.
If you like to store your information digitally like I do, consider organizing your information in a reliable program like Evernote or Google Keep. I love the app Genius Scan for making digital copies of paper documents.
Get your personal support team in place
You will not be able to do this alone, and there is no reason you should have to. Even if you are in the middle of nowhere with no friends or family anywhere in the world, you now have a massive army of sister survivors who have got your back.
Facebook Cancer Groups
I’d recommend joining at least one support group on Facebook. In these, you can get hyper-specific and communicate with people who know exactly what you’re going through. I’ve participated in groups not only for Triple Negative Breast Cancer, but for women who were diagnosed, as I was, during pregnancy.
Search for “Breast Cancer” and any other specific keywords related to your disease. You’ll find tons of potential groups to join. Know that you will likely need to ‘friend’ the moderator and answer a few screening questions before you can join. As you might imagine, women share lots of sensitive info in these groups.
Cancer Support by Phone
If you’d prefer to talk on the phone with a fellow survivor, the American Cancer Society has a Reach to Recovery program where people who have been through breast cancer treatment can talk you through it.
Support for Your Day-to-Day Activities
You’ll likely need physical help with managing the day-to-day. Because I had a new baby and a 2-year-old when chemo started, I needed significant help. My parents moved in. You will likely need some help with things like managing rides to treatment and keeping your house clean. There are volunteer organizations that can help you with this.
If you have friends that want to help, the easiest way to organize them is to set up a Meal Train Plus. This service helps you set up a shareable online calendar of your needs. You can also manage monetary donations if costs for any aspect of your treatment are becoming a burden.
Don’t be afraid to ask for help. Everyone needs assistance at some time. You’ll have the rest of your life to “pay it forward”.
Make a plan to monitor bills and insurance
I kept a spreadsheet detailing the date of service, date of the bill, date I paid it, and the corresponding Explanation of Benefits from my insurance company. This helped to ensure that what I was being billed for matched the insurance statements. It also made it easy to catch things like that time one of the doctors who visited me on rounds when I was in the hospital was ‘out of my network’ and charged me his full fee.
Know that there will likely be mistakes during the billing process. You will probably have to dispute a few bills both with the providers and your insurance company. There are also lots of people to help advocate for you, from the nurse navigators at your oncologist’s office to the insurance board in your state. If you receive a bill that you think is bogus, and your initial attempts to settle it fail, reach out for help.
Get your ducks in a row
Decide how you’ll delegate day-to-day tasks
Life doesn’t stop while you’re in cancer treatment, but you will likely need it to slow down for a bit. Look through your regular activities to see if you can delegate them to your support team or hire them out. Depending on your treatment, things like walking the dog, caring for kids, or gardening may be impossible due to lack of energy, lifting restrictions, or immune system concerns.
Understand the leave policy for your job
If you work outside the home, understand your office’s policies for vacation leave, medical leave, and short term disability. You want to be clear on the time you have available and the process you’ll need to go through to ensure you receive it.
Make sure you have a will in place
Finally, if you don’t have a will or advanced directive, you might want to look into getting one. This is not because you’re marked for death now, but because this little signal of your mortality should remind you that you need one.
The 5-year survival rate for my type/stage of cancer at the time I was diagnosed was 25%. I discovered that information late one night as I googled every combination of “TNBC, life expectancy, survival, prognosis” I could think of. Five years later, I still think of it constantly. Reading that fact has done nothing to make me feel any better. It didn’t give me any information I could use. It didn’t really even tell me anything that applies to me. Statistics are essentially meaningless when you try to apply them to one individual.
Do your best to get your information from your doctors. Information on the internet can be outdated, panic-inducing, and just plain wrong. Your doctor will likely have handouts, books, or websites you can utilize with vetted information to answer your questions. If reading this information makes you anxious, ask a friend or family member to do your research for you.
Make a plan to get your head straight
No, I am not telling you to think positive. Fuck those people. Seriously. I am telling you that confronting your mortality head-on will mess with your head. You are probably going to want some extra tools to deal with it.
While in treatment, I visited a counselor who specialized in chronic illness. I started a daily meditation practice. I made a playlist of songs that would cheer me up. I sought out funny memes from my friends when I needed an extra boost. I stopped reading the news and listening to the polarizing political radio shows I’d previously loved. I stopped looking on social media to see about how awesome everyone else’s perfect disease-free summer was going.
There are endless ways to do it, but know that you need to devote some time and energy here. Depression, anger, and anxiety related to your circumstances is totally normal, but it doesn’t have to be debilitating.
Have the pity party
Give yourself a big hug. Let yourself have time to cry. Take time to wallow in the situation and be afraid. Punch your pillow while screaming how unfair it is. It sucks. It is hugely unfair that you have to be one of the 1 in 8 women who are diagnosed in their lifetime. There’s this fighter/survivor/warrior narrative that surrounds cancer treatment. I think it leads women sometimes to feel that they can’t be vulnerable. Whatever you are feeling is ok.
Consider getting a halo
Finally, one practical tip, because I’d never heard of it before the woman at my wig shop suggested it, and I rarely hear it discussed, even in the cancer groups. If you have long hair and will be undergoing a treatment where you will lose it—get a halo made from your hair.
Haloes are wiglets made by sewing hair onto a headband. You wear a hat or turban to cover the headband and the bald top of the head, and your hair looks just like it used to peeking out from under a hat.
Haloes are vastly less expensive than full wigs, they’re much cooler than a full wig in the summer, and they allow you to look like yourself as you go through treatment. Contact your local wig shop for information about getting this made. If you don’t have a local shop that can make a halo, Chemo Diva is an online company that makes them.
If you are reading this because you just got some devastating news, I am so, so sorry. I am sending you a big virtual hug, screaming a loud FUCK CANCER on your behalf and assuring you that you’ve got this.
Mama Goes Beyond is not a breast cancer blog.
But as anyone who has ever had it knows, breast cancer influences a survivor’s life forever. Many of the posts and products I create are heavily influenced by my own journey with breast cancer. I set up a page here on the blog to help you easily find these resources in the hope that they will help you and your loved ones on your cancer journey. Click the button below to access.