welcome to the worst club - with the best people
Hi. I’m sorry you’re here. In fact, I wish we never met. But we have. And here you are. This really is the absolute worst club but you will be surrounded by the best people. Below are some things to know about what is about to come.
First, you are in the depth of it. It will not get worse than this. These beginning days, right after the diagnosis and the biopsy, are horrifying. You’re grieving. You’re scared. But let me be the first to tell you - be comforted in knowing that this is the hardest time. I know you think what’s ahead will be worse but it’s not.
Second, you will have your routine and life back. It won’t be the same but it will be yours. Settle in and then take stock of your life. You might need to shed some things that don’t bring your joy to make time for the things that do. Figure out what those things are that you want to offload and make a running a list. Help is coming and you’re not going to say “I’ve got it” to everyone.
Third, the process is confusing. I’ve outlined it below. But honestly, now is the time to start reaching out to your network and asking who knows the best doctors. It’s going to be a game of who you know to get in the quickest for second opinions. You’ll want many opinions before choosing your team.
There are a few admin things that I have found helpful to do to keep things organized.
Create a gmail account for medical things.
With your new medical gmail account you’ll have access to a Google Drive. If you’re not familiar with this - it’s a place you can store your test results and other documents you might want to share with potential doctors.
Organize and track your billing documents. Most provider bills are inaccurate. You’ll want to compare your explanation of benefits from your health insurance to the provider’s bill. You will get bills from providers you haven’t heard of or seen in person - these are likely radiologists reading your scans and things. I have a tracking document - message me on IG and I can share!
Create a note that you can share that has your address and a list of things people can do to help and HOW TO HELP. People want to help so let them!
Start hydrating now! Getting in this habit will help tremendously.
Note taking - create a system for your notes. I have a simple notebook that’s lasted these two years and a note on my phone.
The process: below is an abbreviated overview of the process. This is the worst part and when you’re going to be in a drop everything and just do phase.
Diagnosis and biopsies - ugh these are THE WORST but IMPORTANT. You want your biopsy done asap because the results can take a bit and you need these results before treatment can begin. Also, you want these done right. If you’re reading this before your biopsy happened - tell them you want them to take samples from multiple places. This can help ensure the sub-type is the same throughout the tumor.
Breast surgeon - this will likely be the person who did your biopsies or the doctor you start with. Most people get bumped to the breast surgeon that is available when your mammogram and ultrasound indicate breast cancer. I never saw the breast surgeon who did my biopsy again. (she was awful, sorry lady!)
Scans and genetic testing - your breast surgeon will order a series of staging scans and genetic testing (even if no one in your family has cancer). You want these done soon because again, treatment plan can’t be created without these. They’ll either do a PET scan or a series of MRI, CT, and Bone Scans. Be sure to ask for a bone scan if they don’t order one. (Also, if you dig around my blog there’s posts on these).
Medical oncologist - once biopsies and scans come back you’ll be referred to and meet with a medical oncologist. This might happen before staging scans come back. Your breast surgeon will refer you to one. Again, you don’t have to take this person. Ask around. I’m big fan of my current oncologist, William Irvin, especially if you’re under 45 and/or have Triple Negative subtype. I’m just going to come out and say it here for the first time - DO NOT GO TO VIRGINIA CANCER INSTITUTE. You can message me on Instagram for more.
Port placement - if you need chemo you’ll likely get a port a cath - woo! Mine’s name is Polly the Port. It used to be Portia but she got a name change. She was an odd duck at first but we’re best friends because she’s been so good to me. Your breast surgeon will likely put in your port.
Then, you’re off to the races. There’s other things sprinkled in there that I’ve probably blocked out.
Please, share this post with anyone who was just diagnosed and then send them to me directly. I’m always happy to chat.
