First of all, let me say that I am sorry that you and your family are going through this. I was diagnosed less than 2 months ago and it has been a whirlwind of emotions and information. You can read more about my diagnosis here. I am not a doctor so this post has nothing to do with how to treat breast cancer. There can be weeks after diagnosis before you even start treatment and it isn’t always clear what to do when you’re diagnosed with breast cancer. Focusing on the following steps were very helpful to me and I hope they can bring you a little comfort during such a difficult time.
1. Be clear on the real sources of medical information
Since you or someone you love has received a breast cancer diagnosis, I am assuming they already have a medical team. Physicians, especially in this field, are used to getting TONS of questions. Ask your doctor for recommendations on where to get information about your type of cancer. Try to use these resources more than generically searching google. It’s a slippery slope down a deep, dark hole. Don’t do it to yourself. Trust me. What I have found is that google will have cases that are unique or interesting in some way but most of us fall into the “common” category.
Get comfortable with your doctors and if you find they are difficult to speak to or don’t like answering questions, find yourself a new one. Cancer is a long journey so you need to have a high level of confidence and comfort with your team. This is not the time to “stick it out” if it’s not working. There is no loyalty code around physicians. Do what feels right for you. You are literally putting your life in the hands of these physicians so you need to trust them. No questions about it.
2. Get a second opinion
Treatment is based on the diagnosis itself so before your medical team tells you what to do when you’re diagnosed with breast cancer, you want to make sure the initial diagnosis is right. I’m not going to lie. It can be a pain in the butt to talk to another set of doctors, redo tests and tell your story again but the peace of mind that comes from that second set of eyes is priceless.
I’m going to go another step further and say to go to the best cancer center you can afford. This is what they do all day, every day and to say they have it down to a science is an understatement. I went to MD Anderson in Houston and it was like NASA and the Ritz had a baby. State of the art technology meets luxury comforts like warm blankets and spa robes. You deserve the best especially at this time, so don’t feel guilty about having high standards.
3. Call your insurance to understand your benefits
I cannot stress this enough. Regardless of how much you paid attention to your benefits prior to your diagnosis, all that matters now is that you know your details. Skip the online search and call and speak to a representative. Tell them about your diagnosis so they can make a note on your account and then ask about your specific policy coverage. If you don’t know what terms mean, this is the time to ask as well. Know question is stupid or too small. Take notes and bring kindness and patience to the party. Having an ally in the insurance arena just makes things easier moving forward.
Here’s another thing that may surprise you regarding cancer treatments and insurance. Pre-authorization is required for most, if not all, treatments depending on who your insurer is. For me, this looked like waiting for Radiology to call my insurance company and get approval before I could have my mammogram, ultrasound, MRI, etc. Same for chemo, surgeries and genetic testing. That was a shock to me and can delay the process a bit so I wanted to share that with you so you weren’t blindsided by it. Physicians are used to it and usually know what to do to move things along but you may have to call once or twice to light a fire under them. It’s crazy but now you know…
4. Understand financial assistance in your area and nationally
There are amazing organizations and non-profits with the sole purpose of providing some assistance to breast cancer patients to help with treatments, travel costs and medical devices. Search for local non-profits in your area to reach out to but from a national perspective, start with the American Cancer Society (ACS). I recommend calling and registering with them to discuss their financial assistance program. As far as I understand it, there are no income limits but that may differ by state. ACS also has a portal where you can search for programs and organizations in your area as well.
If you happen to live in the U.S. Virgin Islands, I recommend starting with Cancer Support Virgin Islands (CSVI). If this is your first experience with cancer, the organization does an amazing job of pointing you to the right resources in the most caring and patient way possible. I cannot speak enough about my encounters with Anique Harrigan at CSVI. She is the one that introduced me to American Cancer Society’s program as well as other local resources. She truly is a gem.
One more piece of advice around financial assistance. Please don’t count yourself out because you think you make too much or you don’t like asking for money. Cancer is EXPENSIVE and the journey is long. These organizations are there to help with health related expenses and have enough experience to ensure there is enough money to help as many people as possible. With this diagnosis, you will have to learn to accept help. Start now.
5. Connect with Breast Cancer survivors
As you are trying to figure out what to do when you’re diagnosed with breast cancer, experience carries a lot of weight. Physicians have experience treating patients but warriors have all the experience dealing with the emotional, physical and mental effects of said treatments.
There are so many ways to connect to survivors now without having to leave the comfort of your home. I joined a private facebook group of over 18,000 women from all over the world. What I love about this group is that it comprises of women who are being treated as well as those who have beat cancer. The group has not only been encouraging but also bluntly honest. You know us women. We love a good detail so you can really get into the nitty gritty with the types of questions you ask. Don’t worry. If you start asking for medical advice, they will promptly direct you to your physician for that type of information. Being a part of a group like this has taught me that I am not alone and opened my eyes to other treatments, tips, procedures I could discuss with my physicians.
Now, I know a lot of people don’t like facebook so that is not your only option. Many cancer centers actually have programs catered to bringing breast cancer patients and survivors together. Also, I had some of my best conversations just one on one with friends or family members of friends who went through breast cancer. It’s the weirdest thing. No one asks or wants to be in this club, but let me tell you, the women here are AWESOME. So say yes to a conversation or two. It can make a world of difference!
6. Set up your document folders
I know it’s 2021 and you think everything should be digital but I am here to tell you that’s not 100% true and also, digital does not mean organized. Just from the five points above, you can tell that you’ll be dealing with a lot of different entities and organizations. All will require documents of some sort from you and you want to make this process as easy for yourself as possible.
I recommend storing everything in the cloud. I personally use Google drive but Dropbox, OneDrive, etc. are all great options. I am just getting started in my journey so I may not have all the folders you need but below is a list of recommended folder options for you to get started. If someone hands you a paper document, just scan that baby and upload it to your “filing system” and you are good as gold. Make sure you give access to your primary caregiver just in case.
Where this can really come into play is receipts. If you are applying for financial assistance, those programs are usually reimbursement programs which require you to show receipts. With your handy dandy organization system, you and your caregiver will be able to reference all your documents anytime and from anywhere.
Document Folders
- Medical History
- Test Results
- COVID
- Labs/Scans
- Other
- Doctor’s Instructions
- Health Insurance
- ID (health insurance card, driver’s license, passport)
- Approval or Denial Letters
- Explanation of Benefits
- Finances
- Bills
- Receipts
- Airfare
- Hotel
- Copays
- Medical Devices and Accessories
- Research & Questions
7. Create a Caring Bridge site for friends and family
You know how you feel when you find a solution to a problem you didn’t even know you had? Caring Bridge was that for me. I was looking for a way to keep a small group of individuals up-to-date of the details of my treatment without having to update each person individually. What I love about this site is that it allows you to submit journal entries documenting your cancer journey. Friends and family that you invite then receive an email with your new “post”. They then have the option to write comments or even “heart” your posts. I made sure to let mine know all of that wasn’t necessary. I didn’t want them to feel pressure to manage another social media platform.
You can add pictures to each journal and even links to youtube videos if you’re fancy like that. It’s absolutely perfect for a blogger like me but for those of you who don’t wish to share it with anyone, I still recommend you set one up. Here’s why. Caring Bridge gives you the option of creating a pdf of your site when you’re all done. Imagine having a diary of your cancer journey that you can keep just for you or share with your kids someday. I just think that’s so cool but I get excited easily.
Check out Caring Bridge here. I hope you love it as much as I do!
8. Focus on diet and exercise
If you’re anything like me, you probably weren’t eating all the right things or working out like you should. Guess what? There is still time. The goal is not to binge diet or become a Crossfit guru. It’s to prepare your body as much as possible for this treatment marathon. What does that look like? More fruits, more vegetables and more moving that tush. Also, make sure you wash your fruits and vegetables carefully if you’re going through chemo. I love a baking soda and water (equal parts) soak to get them super clean.
I have heard many accounts from my oncologists as well as from breast cancer survivors that persons who are active have a shorter recovery time for chemo and surgery. I’m going to keep it real with you guys, I haven’t been consistent with my exercising but I am not giving up. Every day is another day to try. So if you are kicking yourself for how you’ve been eating or exercising in the past, stop it please. As Anna from Frozen would say, “just do the next right thing…”
9. Sign up for therapy
I am still early on in my cancer journey and deciding what to do when you’re diagnosed with breast cancer is no easy feat. There can be so many choices to make (with guidance, of course) but the decision sits with you. Most times, you won’t feel qualified to choose A over B but no one else will make these decisions for you.
With that comes another level of anxiety, uncertainty, guilt and stress on top of our already imperfect lives. It’s a lot to juggle and regardless of how positive you are, you may need some help to process all those feelings. Even after our bodies are healed, the emotional effects can linger for years and years. My strategy is to start therapy now while I’m feeling okay. My first appointment is scheduled for today so cross your fingers for me things go well. I’m just here to say, it’s okay to put yourself out there. Get the help, learn the tools and give yourself plenty of grace. Don’t sleep on therapy, guys!
Thank you so much for letting me go one about this. I have so much passion around making the best of your time even in challenging times. You may not always feel 100% but I am sincerely hoping these tips help you prepare as you decide what to do when you’re diagnosed with breast cancer. Stay patient, friends!
Carla A Ritter says
Little is much when God is in it.
I can imagine so many others that will find this so helpful.
You’re the bomb, girl!
Blessings to you and your family ❤️
mellow0402 says
Carla, thank you so much. I love that quote. I really do pray it helps someone. I know I have received so much information from others who were willing to share. Stay safe and in good health!
Shelley says
My dear friend Melissa I had no idea of your diagnosis just learning it now after reading your post which literally made tears rolls down my face when I thought about your little ones and Steve. But then I wiped my tears and realized your a Lowe and born fighter. You have so many great people in your circle and loved by so many. I’m here for you and praying 🙏 for strength through your journey. Thank you for sharing your story as it is helping so many others….
Shelley
mellow0402 says
Shelley, I definitely understand the shock of it all but I am so blessed to have people like you praying and encouraging me. I feel so grateful. It gives me strength and inspires me to pass on that feeling to others. I miss you but thank you so much for your message. It means so much!