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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.
Stop Google-ing
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.
I am a 57 year old woman and was just diagnosed with breast cancer 3 days ago. I am thrilled to have stumbled upon this site on Pinterest. Such brilliant and honest advice that I will truly take to heart. Thank You, Thank You for posting! GOD BLESS YOU…….
Oh, Debbie. I am so sorry that you have to join the survivors club. This part of your journey (right at the beginning) is honestly the toughest part in my opinion. I’m so glad that the post was helpful, and if I can be of any more help, please email me at mama@mamagoesbeyond.com. You can do this. Treatment is tough, but life looks wonderful on the other side. XOXO
Omg, I’m a 57 year old woman that was also just diagnosed with breast cancer 3 days ago and I’m so blessed to read all the wonderful things….
Hugs, Phyllis. Your sister survivors are lifting you up. You CAN do this, and you are not alone.
I’m 42 and found out I have cancer today. I’m a planner. So while I wait for the news to totally sink in, I came to the internet to see what I needed to start doing. Thank you so much for your helpful and thoughtful post.
Lots of love to you, Tima. I hate that you needed it, but I’m glad that you found the post helpful. I’m a planner, too, and I think that made starting treatment more challenging. Everything moved so fast. I remember saying, “I take a month to decide what vacuum cleaner to buy, I can’t make all these decisions about my health so fast.” And, of course, there’s the fact that all your previous plans need to be altered, and the fact that it’s impossible to plan how you will react to treatment or what the future will bring.
You can do this, sister survivor. If I can be of any help on your journey, please feel free to email me at mama@mamagoesbeyond.com.
I am 49 just diagnosed!
I also stumbled on this from Pinterest. I am so glad to have found it. I am scrolling through quickly but plan to read later!! Love the Fuck cancer comment.
I am sorry you were diagnosed while you were pregnant. You are such a strong person and I truly respect you!
Thanks
~Michele
Michele, I’m so sorry that you had to join us in the survivors’ club. Sending you lots of love as you start climbing the mountain that is cancer treatment. I am certain that you are every bit as strong as I was. As Bob Marley said, “You never know how strong you are until being strong is the only choice you have.” You can do this. I’ll be rooting for you.
After 3 different mammograms, an ultrasound, and a needle biopsy I found out today that they’ve found cancer in my right breast. The cancer is really small and it’s Stage One. My survivor daughter tells me this is actually good news…they caught it early.
I’ve contacted the family and friends in my support group with the news. Now I wait until August 12th to meet my surgeon. I WANT IT OUT NOW!!! Preferably yesterday…
I was shopping when I got the call. As I started driving home, I teared up and choked out “I want my Mommy”… but she died in 2001…and realistically I wouldn’t have gotten the comfort I wanted/needed if she was alive. Time to pull up my big girl panties so I can participate fully in my treatment and recovery.
So glad to find this information. I am 67 years old and a widow the past 14 years. I have folks to help with whatever I need.
So sorry to hear you’re joining the survivors’ club, Frannie, but thrilled that you caught things early and have such a lovely support system. Sending you a great big hug. You’ve got this.
I am 38 diagnosed in April while doing volunteer work in Africa. I’m now in Spain receiving treatment, far from family and friends due to COVID . It’s stage 2; and I’m 3 cycles in to my 6 months of chemo. Thanks for such honest advice.
Lots of love to you, Monica. You’ve got this!
Hi I’m a 36 year old that was diagnosed with breast cancer maybe 3 weeks ago. I have a triple negative diagnosis also and your post really made me feel better cause I’m really just beginning everything. I’m afraid to do chemo but I know I really need to do that to help my situation. My mood changes every day sometimes I’m happy then most of the times I’m sad because I have 4 children and I’m praying that God keeps me here for them.
So sad to hear about your diagnosis, my dear. Just keep putting one foot in front of the other, and you will get through this. Treatment is even better now than when I was diagnosed. I will be keeping you and those four kiddos in my thoughts. Sending you a big hug.
I am so thankful that I found your post. I am post-op day 5 from my lumpectomy, and diagnosed one month ago. What a three-ring circus of a train wreck this time is! But your post is soooo what I needed, it is clear and uplifting, and supportive. I’m 54 and never even saw this coming… I will be using your post as a guide to keep on moving forward, thank you so much. Bless you ❤️
Kelly, I am so glad that the post was helpful. Sending you lots of love as you battle this beast.
Thank you for this page! It is not only helpful but encouraging. I’m a mother of 7 boys, and just found out on my 41st bday last week that I have breast cancer. We are at our surgeons appt today and I’m just ready to take this head on! Of course, emotions are a roller coaster, but my Faith is stronger than my fear.
Any additional info is extremely helpful!! TIA
So sorry to hear this news, Kimberly. I am sending lots of love your way. Although this isn’t a breast cancer blog, I have several posts on the subject, which I’ve collected here:
https://mamagoesbeyond.com/sister-survivors
Hang in there—you’ve got this.
I just got my diagnosis this past Thursday. Unfortunately I read about it on the my chart site, as the report was posted a few hours after my doctor’s office closed for the day (and they are closed on Fridays). My doctor did call me Saturday morning, as that’s when she goes in to catch up on paperwork.
I have cried very little, which is very unusual for me, as I have struggled with depression and anxiety my whole life. I will be making an appointment to meet with the surgeon tomorrow, so I am absolutely positive the shock will be replaced with absolute terror (I can actually already feel it building, the more I think about it this evening).
I own and operate a fairly successful pet sitting business, and my schedule is absolutely packed the rest of the summer. I’m a one-woman show, so I’m not sure exactly what to do. I guess I’ll figure it out after speaking with the surgeon. Then I’ll know when I need to cancel house sittings. Thankfully I have mostly regular, long term clients, who are the absolute best people, but I still hate letting people down.
I’m going to pin this page, because you have some great advice. Thank you.
Oh, Lori. I just said out loud “oh no!” when I read that you saw the diagnosis all by yourself online. I love the my chart site when it’s good/interesting news like clear mammograms/blood test results, but what a challenging way to get those cold, hard facts.
I am a singing teacher and had to close my studio for a time while I was in treatment. I got many of the same clients back when I was well again. I have no doubt that you will do the same should you have to make changes this summer. Maybe you could partner with a college student home for the summer or something to make sure the contracts can be fulfilled. I know you will find a solution.
I was just talking this morning with a friend about feeling our feelings. She mentioned some research that said that if we truly allow a feeling, it burns out after 60-90 seconds. Most of us are terrified to feel the negative stuff, so we try to shove our feelings down and avoid them, and the stuff hangs around forever instead of being processed.
So let the terror and depression come up. They’re valid, and you can handle them. You’ve been beating back anxiety and depression your whole life, and you’ll beat them this time, too. I know you’re up to all of it, and I’m rooting for you. Feel free to reach out via email if you ever want to chat. XO
Hi! My name is Bernice, I got diagnosed with stage 2 breast cancer last October 3 rd 2022. This all came about as my daughter aged 22 was expecting her first baby. She her boyfriend and newborn baby live with us! My daughter was so overwhelmed of the news and got high blood pressure because of the stress she felt from my diagnosis. She wanted me to be in the delivery room when she had her baby. So after my first chemo treatment she was induced and with Gods grace I was able to be in the hospital with her and her boyfriend for delivery. I am so grateful for that experience with her. After she had her baby boy, I had my second chemo treatment and began feeling bad with it and completely lost all my hair. Fortunately my husband has been there through every treatment with me including my double mastectomy. I don’t want to scare anyone into not having their most needed surgery but I never in my wildest dreams thought to ask my Surgeon who performed my double mastectomy if she was going to give me pain meds! I just thought that a person who is getting their breasts removed would definitely have to have some good meds to get through at least a week of severe pain! I tried to wake up several times in the recovery room numerous times and finally my husband was called to the recovery room to see me because they could not get me up and out of the hospital as the surgeon said I should be released! She stood at the door of my room pointed at me and said “yes this is my patient, you can release her now!” Without trying to ask me how I was feeling or even notice I was passing out in the bed everytime the nurse tried sitting me up! I was white as a sheet! My husband saw me in this condition and said no I can’t take my wife home like this! Can’t you see she can’t even sit up? Then the plastic surgeon walked in to see me and saw I was not responding!Fortunately he made the decision to keep me in the hospital to get control of my pain! I hurt so bad and had to stay 3 nights in the hospital! I was being pressured every moment of my stay there at Rust Hospital in Rio Rancho New Mexico. By the third night I was so stressed and ready to run out of this damn hospital because of all the pressure I got from a few nurses there! Oh God! I just wanted to die! I’m sorry but what is it with these dr’s thinking that you just got your breasts removed and lymph nodes under my arms and expanders put in and not think that I would hurt? Dr Moore was the surgeon who did my double mastectomy and heartless dr I’ve ever met releasing me without trying to talk to me or my husband, released me with Tylenol and ibuprofen? I’m thinking to myself, really? I just got this painful serious surgery and very. And I gotta do my best with Tylenol? That’s so crazy? I’m sorry to everyone who has gone through it like I did! Thank God I have a wonderful husband who helped me with everything and supported me through it all. But because of everything I went through? He got bells palsy and recently got a stroke from all the stresses. He is slowly recovering and I’m finally done with radiation treatments but still have to undergo injections and then finally the chemo pills! I just have to say I’m sorry for venting but I think everyone should ask their dr if they believe in pain meds after a double mastectomy! Again I’m sorry but I don’t have anyone to talk to about this and I’m just so upset with what I went through and hope no one goes through what I went through! Ask! Ask about the pain meds.
Sorry to hear that you had such a hard time, Bernice! Thank you for sharing your experience. Sending you a big hug.