Going Through Breast Cancer Together
March 11, 2019
By Brooke Lambard Kyle, MD, and Piper Lambard Norton Do, DVM
For breast cancer support resources, visit our Resources page.
Unfortunately, we have all been affected by cancer. It might be someone in your family, a close friend, or an acquaintance; maybe you’ve helped someone during a diagnosis, potential surgery, chemotherapy, radiation, more surgery and worse. There are survivors and there are those who are dearly remembered.
For those of you who don’t know, my sister Piper Norton Do was diagnosed with breast cancer last year. She was 37 years old when she found the mass while performing a self-breast exam, three weeks after her wedding day. On her 38th birthday, she had a double mastectomy, staging her cancer as a 1c. Piper then went through the next year of chemotherapy, radiation, and further reconstructive surgeries. Currently, we are hopeful for a cure, but as she says, “you live with the idea of cancer every day. You’re on meds with side effects that remind you, or your brain gives you worries every day.” She lives in Austin, Texas, and I have gone down to support her through each stage of this journey. Thankfully, my medical training has helped prepare me for giving patients the help they need to make clinical choices, but over this year I have learned a lot about what it means to support a person battling cancer each day.
Piper is an equine veterinarian with a specialty in internal medicine. She is the strongest, kindest person I know. She loves her clients, animals, humans, basically everyone around her with such vigor. She is funny and loves to find humor in dark scenarios. She is my closest friend and confidant. We recently lost our mother, so going through this cancer year together without our mom made it even harder.
Piper and I decided to relive the year and consider how one can be best supported through this process. We hope that by sharing our story, we can help someone else going through this challenge, or encourage you as you go through it yourself. I (Brooke) am asking the questions and Piper is responding.
How did you choose a doctor?
Initially, my local gynecologist referred me to a surgeon in town. I didn’t feel a connection with this doctor, so I sought a second opinion from another breast surgeon through the connections my sister (Brooke) had in my town. I’m so lucky to have had these connections from my sister! From there, my breast surgeon referred me to my medical oncologist and my plastic surgeon. However, I have since learned that local breast cancer groups are excellent sources of information to research the best doctors in the area.
Each of my doctors was important in their own way. My gynecologist was the first to tell me that I had cancer and she showed me compassion in a dark hour. My breast surgeon worked diligently during surgery to hopefully ensure that, despite my choice of a nipple-sparing double mastectomy, every cell of breast tissue was removed. A physical therapist is treating my lymphedema and my axillary web syndrome, so I still visit her office nearly every week over a year after my surgery. My plastic surgeon not only did most of my suturing, tissue expander placement, and drain placement during my double mastectomy but she also worked tirelessly to reconstruct my breasts with my fat (DIEP flap surgery). The process of selecting a medical oncologist is an important one. This doctor not only decides what your treatment will be but also performs your rechecks for the rest of your life. Trusting this doctor is important. The radiation oncologist, I feel, was the least important of my doctors from the standpoint of a connection. Although I was lucky to have found a wonderful one, the six weeks of radiation went by quickly and my rechecks with that doctor are not frequent.
It was important to me that the oncologist took the time to answer my questions, listen to my concerns, respond after hours, and is very knowledgeable. A good bedside manner is helpful as well. Most importantly, I wanted a doctor that gave me educated choices and had my best interest in mind.
How did you find information and support?
My breast surgeon gave me information on a local breast cancer group for women under 40. This was very helpful to guide my decisions and it offered me a support network. My oncologist’s office had a social worker on staff that helped me find a counselor who is also a breast cancer survivor. I felt like the best websites for breast cancer information were breastcancer.org and cancer.gov. Although some of the Facebook groups were helpful at times, there was a lot of frightening misinformation on them so I caution others about those groups. Advocacy groups like the “Susan Komen Race for the Cure” and “Casting for Recovery” helped me connect with other survivors and develop friendships. The book “Bald is Better with Earrings” is also filled with good information that can help you throughout the process.
What about supporting you at the time of diagnosis, how is that best done?
In the initial shock period, I needed to learn as much as I could about my particular tumor and my options as quickly as possible. Breastcancer.org and cancer.gov (searching for my specific kind of cancer) were excellent sources of information. It also helped immensely to be surrounded by my friends and family. Brooke also took the time to explain it all to me.
Starting at your first appointment, ask for copies of every test result. Start a Dropbox file (or other easily accessible file storage system) with all of your medical records as you see different doctors and get different tests. Having test results readily available expedited many of my appointments.
Fears arose as I was confronted with my own possible mortality. How could breast cancer affect someone my age? Would I ever be able to have children? Would I be put into menopause? I went through stages of shock, fear, and grief. Ultimately, I needed to fight and to find a team that would fight with me.
What’s your advice about going to doctor’s appointments?
I found that taking a less emotional scribe to every appointment was essential, as I didn’t absorb everything the doctors were saying. We started writing notes in a blank book that we affectionately call the “Cancer Book.” I would refer to those notes later. Also, going to the appointments with my list of prepared questions helped me get some answers, as I would easily forget the questions I had. I also asked questions to help me understand my tumor. No matter how silly the question, I thought that it was important not to be shy.
When you are confronted with choices, ask for the exact statistics of complications or survival rate with each one. Ask about the risks of each type of surgery and know that surgeon’s complication rate and how many of those surgeries he or she performs each year. Know the doctor’s background and make sure the doctor is an expert in his or her field. Ask to see pictures of other patients who had similar surgeries.
How did you prepare for the mastectomy?
I spoke to my friends who had already been through this surgery, and they recommended supplies that were helpful. The online Facebook group members were also helpful with suggestions. My surgeon supplied me with the special post-surgical bras. A friend bought me a robe that had drain holders in it. I was not prepared for how limited my upper body range of motion would be. Reaching into cabinets was very difficult for a few weeks, so putting essential stuff at chest height was important. It was very helpful to have about five sets of button-down pajamas to wear. I also got a nightstand with all of my medicine in it, so that I could medicate myself, and a step stool to get in and out of bed. A shower stool was also helpful.
For about 2-3 weeks, I needed a good deal of help. My family rotated spending time with me to be my caretakers. My sister and my husband stocked my freezer with food to ensure that meals were not challenging.
After surgery, a physical therapist that specializes in lymphedema was my lifesaver. My pectoral muscles were excruciating, and her treatment gave me relief. She also has been dealing with my lymphedema for the past year trying to ensure that mine remains a mild case.
What about tips for chemo?
One thing to remember is that every person’s treatment protocol and individual response to treatment is unique. For me, I had four cycles of TC chemo administered every three weeks. During the chemo infusion, I brought a friend or family member to support me each time. I also had a routine that I followed. I wore my Wonder Woman panties to every hard event to help give me strength. I also had some special bracelets that I was given that said, “Keep going,” and these were constant reminders to me to not give up. My sister made me a quilt with inspirational sayings on it, and it kept my body and soul warm during every chemo appointment.
I attempted to try cold capping to save my hair. I thought that if I saved it, my psyche would not be as affected. However, it didn’t work for me and, ultimately, I ended up shaving my hair. After losing hair for a few weeks and being so emotional about every clump falling out, shaving my head allowed me to regain my control. The hair was dead, but I wasn’t.
Each cycle of chemo was given on a Friday. The steroids that were administered during chemo and the meds to treat nausea kept me feeling decent until about the following Tuesday. After that day, I experienced tiredness, severe constipation, loss of taste (you lose your taste buds), mouth sores, runny nose, dry eyes, dry skin, folliculitis, severe thinning and bruising of my nails, loss of all of my body hair (and I mean ALL of it), severe chemo brain, and muscle and bone aches. I was tired all of the time and would nap daily. By two weeks after the infusion, I would regain strength and feel better just in time to get my next infusion.
I had a phone app to remind me to take my medicine and it was very helpful. I also recommend learning how to draw on eyebrows. I found some great YouTube videos on it. I also found it helpful to wear masks in public and use hand sanitizer. Also, remind your friends and family that your immune system is suppressed and, although you would love to see them, please stay away if you are sick.
What about wigs?
Some of the best advice I got was to not put on a wig or makeup to help someone ELSE feel more comfortable. I didn’t want to look sick, but when I lost my hair and eyebrows, I felt there wasn’t much I could do. At that point, I had to own it and decide the easiest and most comfortable thing for me. Most of the time, I wore colorful scarves or bamboo head covers to stay warm and festive. However, when the hot flashes set in, wearing head coverings or wigs was not possible here in the hot state of Texas!
What is it like to go through radiation?
The first day at my radiation oncologist’s, I was asked to lie on a bean bag on the CAT scan table with my arms holding bars above my head. After I was in position, the air was removed from the bean bag and it made a mold of my upper body to lie in each day. Then, a CAT scan was performed, and I was “mapped” for radiation. I had a total of 28 treatments. Each treatment was on a business day, as radiation doesn’t happen on holidays or weekends. The actual treatment lasted about 10 minutes, but I spent a total of about 45 minutes in the office each day. After the treatment, you apply the lotion of your doctor’s choice and proceed to reapply it numerous times throughout the day.
I would change into my gown, and then when I was called, I would lie topless on the table as the machine rotated around me. One part of the experience that is burned into my mind was that few men had seen my mangled chest before starting radiation. All of my previous teams of doctors, nurses, techs, etc. were female. So, it was shocking to me to have male radiation techs. I grew more comfortable with these men as I got to know them and discovered what led them into this medical field. For many of them, it was that a close relative had breast cancer. Knowing this information made exposing myself to them less embarrassing.
My husband and I got to know the other patients at radiation each day. Most of our treatments were at the same time every day so the waiting room was a familiar support team of sorts. We ended up alternating who would bring breakfast each day. We were all there to cheer for each other. For those who don’t have a friend to attend appointments with you, the American Cancer Society has volunteers who will provide companionship.
How was your mental health?
Because I was a stage 1c and my cancer was caught early, mental health was not emphasized as much as it should be. No matter what stage you are, cancer is scary and affects so many parts of your life. Therefore, I think counseling for you and your caretaker or children is important. My oncologist helped me find a counselor who is also a survivor and truly understands what I am facing. Support groups or cancer retreats geared to similar age patients or similar professions are also helpful.
What can someone say to someone going through this process?
As a friend of a patient, don’t try to fix anything. Be there for support with a listening ear. Ask the deep questions and don’t shy away if the patient gives a real, honest (often times negative) answer about how he or she is doing. Send texts telling the patient that you are thinking of them. Check on them, regularly or call to touch base. Knowing that someone was thinking of me was so comforting. It’s okay to say, “I’m so sorry,” or “this sucks.”
There are also things to avoid. These topics include giving advice, especially if you haven’t been through it, comparing a 30-something year-old to your grandmother who was diagnosed at age 70, or that, “at least insurance will pay for your boob job!” None of these topics are helpful. If you don’t know what to say, just listen.
Losing your breasts and your hair simultaneously feels like a true loss of femininity. Make sure you are talking to your friends and partner about how you are feeling. Tell the patient she is still beautiful, as she needs to hear it more than ever right now.
What should you do if you feel like you’ve said something you regret?
If you feel that you have said something inappropriate, just apologize. None of us is perfect. Saying that you care is what counts.
Other ways to help cancer patients
- Set up a meal train during the diagnosis for a few weeks. Make sure you note that you would like bland food during chemo, and healthy food during times of surgeries, and/or radiation.
- Organize a gift Train: a friend came up with the idea and sent out an email with ideas of boxes to send. I got about 20 boxes, one in the mail every week from someone new. Here were some of the boxes: pink (everything in the box was pink) sunshine (everything was yellow) movie box with popcorn, a chocolate box, teas, so many great items!
- I recommend reading “Bald is Better with Earrings” it’s a book I wish I had started reading earlier in my treatment process. It covered every step along the way.
- Getting involved with advocacy: breast cancer walks, “Casting for Recovery,” etc. Walking the Race for the Cure was overwhelming as my first year walking it as a survivor, but it’s amazing to have friends and family around you to hear stories of those who survived as well as those who are remembered. Casting for Recovery was a free, weekend fly-fishing retreat with other survivors and medical experts. This retreat helped me understand my challenges and gave me helpful tips and tools to combat them in addition to a new network of friends.
- Texts, emails, and phone calls were great!!! I noticed that some people stayed away, as I’m sure it was hard to know what to say. I tried to leave my phone on silent, so phone calls wouldn’t awaken me from a nap.
- FACETIME was great because you could see people and feel supported without getting their communicable diseases during chemo!
- A hard thing for people to remember is it’s NEVER OVER. I’m still dealing with complicated reconstruction, effects from chemo, medication side effects, menopause, osteopenia, lymphedema, axillary web syndrome, fear of recurrence. There’s always something reminding you.
- Volunteer to clean the house, take care of the pets or children, do chores, and go to the grocery store.
- Offer to go on walks or take the patient to lunch.
- Emily McDowell makes the most amazing sympathy cards for people going through this.
Thank you dearly to Piper Norton Do, DVM for helping me (Brooke) share our experience for others, so they will know they are not going through this alone! Piper is an inspiration to all, and I really appreciate her sharing her experiences in this format. Also, it goes without saying that I also tremendously appreciate Piper’s community of support as I write this: her husband, our family, and our friends.