Things No One Tells You
What to Do When You Get Breast Cancer in Your 20s: The Playbook I Never Expected to Need
By June Sanregret
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When I first noticed that I had a lump in my breast last summer, I didn't really think too much about it. I’m in my late twenties, I’ve never had any health issues, and I don't have any breast cancer history in my family. Not to mention, we were in the middle of the pandemic, so going to the doctor was — in my mind at least — off the table. My partner and I had left New York for a period of time, and were in Denver, quarantining there with my partner's parents, so it’s not like I could schedule something with my own doctor.
By September, when we were back in New York, the lump had grown a lot. But my reaction wasn’t to think, “Oh, I must have cancer.” It was: “Oh wow, these weird cysts are really growing.”
Nonetheless, I knew it was time to see a doctor as soon as possible. I didn’t realize that “ASAP” has a different meaning when you’re dealing with the healthcare system: I called to make the appointment in October, which ended up getting me to the office in mid-December, which led to a mammogram in December.
To be honest, once I secured the appointments, I wasn’t having the greatest experiences with care in New York, so my mom, who lives in Santa Barbara, said to me, “Let’s just fly you out here so you can get the help that you need.” I packed my suitcase and said goodbye to my partner, thinking that it would be a quick trip and I’d be back to my New York apartment within a week. I had a biopsy right away. The next day, while home alone, I logged into the patient portal and the results were staring me in the face: it was cancer.
My boyfriend flew out to meet me the next day, and we waited to learn my “hormone status” that would tell us what type of cancer I was dealing with. I was officially diagnosed on New Year’s Day — with estrogen and progesterone negative/HER2-positive breast cancer. I’ve been doing chemo every three weeks, to shrink the tumor, and then in June I’ll have surgery. I’ll also need radiation and reconstructive surgery. And once that’s over, I’ll be taking pills that target the HER2 for an extra two years.
People ask me how I processed the news, and the truth is I don’t know. It’s like you get pushed into flight or flight — you’re basically forced into survival mode until it’s over. But then, on the other hand, I realize it’s never going to be “over”. It’s going to evolve and I’m going to learn how to cope, and hopefully it will get easier as time goes on. Here are some of the ways I’m navigating the challenges so far...
On when it's useful to go online — and when it's not
I'm 29 and I didn't really think of myself as being super young until I got cancer. A lot of the cancer resources out there are geared towards people who are older. That’s one of the reasons I turned to social media — so I could find younger people I could relate to more.
Angela Trimbur, an actress and breast cancer survivor living in LA, is someone I found myself gravitating toward a lot. (During the pandemic she started hosting breast cancer support groups on the Marco Polo app.) I think the fact that she’s younger makes it easier for me to relate.
In fact, while I’m the type of person who usually goes down the Google rabbit hole to research everything, that's not the approach I’m taking with cancer. I'm taking a step back and trusting that my doctors will give me the information I need when I need it. Everyone's cancer is so different, so it doesn’t feel helpful to try to search for answers about my specific case online. Instead, I use social media to learn about others’ experiences, but that’s about it.
On getting a port inserted
Getting my port was the first surgery I've ever had. It was so scary for me. If you need to have your veins accessed frequently, a port is basically a way to avoid poking your arm with needles all the time. After it’s inserted, it looks like there’s a little marble under your skin; it's a little weird. When you first get it done, you have to cover it when you shower. I felt really stiff and very aware of that area initially. I still do, but after a couple of weeks you kind of loosen up; now I can stretch and move my arms all around.
On managing through the chemotherapy roller coaster ride
The first week of chemo was by far the hardest for me. They gave me a bunch of steroids the day before and the day after the infusion, which kind of amps you up but at the same time you’re so physically exhausted. It’s a very weird juxtaposition that I can't really explain. I was having trouble sleeping, so I started taking this supplement called Insomnitol. My aunt is a pediatrician who is very informed about holistic, naturopathic medicine, and she recommended it to me. It’s been helping me so much. I’ve been sleeping really well.
On spending over $1,000 on cold therapy to combat chemo-induced side effects
My care team told me that neuropathy, the loss of feeling or tingling in your fingers and your toes, is one side effect of chemo that can be lifelong, which would really suck. They said I could ice my hands and feet to try to block off the blood flow so the chemo won't reach them, so I've spent well over a thousand dollars on ice packs and cold therapy.
Cold caps were another option I considered for my hair. The idea is that they’re supposed to narrow the blood vessels under the scalp, so that the chemo can’t reach the hair follicles and your hair is less likely to fall out. When I went to try them on, the cold caps didn't fit my head. They came in small, medium and large. And I was somewhere in between a small and a medium, so I didn’t get one.
I found out through Angela Trimbur’s Instagram that you could use ice packs on your eyebrows to help prevent them from falling out during treatment. And I was like, “Well, if I'm going to lose my hair, I'm going to keep my eyebrows.” So I’m doing that and also using a serum two times a day on my eyebrows and my eyelashes.
I have about 40 ice packs for my eyebrows, another 20 or so for my feet, and I also invested in a chemo mouthpiece to help with mouth sores. The mouthpiece stays cold for 30 minutes and then you rotate it out with another one; they’re pretty big and you have to hold them the whole time, but they fill your entire mouth. Mouth sores were my biggest side effect. They were horrible in the first round of chemo, but I haven't gotten them again because I use the mouthpieces.
On nutritional changes after cancer
It was recommended that I avoid gluten, dairy, sugar, and alcohol. I’ve been following this advice for the most part, except for the occasional chocolate fix. I have such a big sweet tooth! It hasn’t been that bad transitioning to this type of diet because in November, a couple of months before I was diagnosed, I knew something was up with my body, and I started using Parsley Health. Interestingly, I had a lot of acne on the left side of my face, my left shoulder, and on my left breast (my tumor was on the left side), and cutting back on sugar and dairy was one of the ways I tried to get the acne under control.
On intimacy and relationship changes during cancer treatment
I don't know if he would agree, but in a lot of ways I feel my partner and I experienced a role reversal after my diagnosis. I'm normally very focused on another’s needs. I’m like, “How are you doing? How do you feel? What do you feel like doing for fun tonight?” And now I'm so focused on myself and everything's so focused on me. My partner has been taking care of me, cooking for me, etc.
Cancer does take a toll on you physically, so our intimacy has taken a hit. But there have been positive aspects. We used to bicker about things and now we don't at all just because life gets put into perspective so quickly when you get cancer. So our relationship has been really great in that way — we’re really in it together. I mean, when someone flies across the country to come live with you and help you survive something like cancer, that can really make your relationship stronger.
On “cancer warrior” gifts — and what to buy instead
The whole gift thing is so funny. Let’s just say we’ve done a lot of recycling — we've gotten so many gifts, and while I appreciate every single one, we donate half of them. Things like a large pink blanket that said “warrior” or a magnet that said “everything is going to be okay” went into the giveaway pile.
When I was first diagnosed, I’d be on Instagram and see so much language around being strong and being a warrior and being a superhuman when you’ve got cancer. And I thought, “I'm not that like, I don't identify as being super strong.” So that was really daunting to me at first — the idea that I’d have to take on a superhuman role even though I never wanted that identity. But the truth is, I’m giving myself permission to be myself, rather than a “fighter.”
As for gifts I’ve received that have been super helpful, I’m very lucky because I have a bunch of really great friends and they’ve been amazing this whole time. They've set up a Google document and ask me to check off the things I want or need. Some of my favorites have been hats, lotions, face masks, and a tea kettle. At first I felt guilty about it all, but they were like, “We’re getting you this $45 face mask — enjoy it!” It might be an escapism in some ways, but surrounding myself with little luxuries, small things that make me feel good, has been helpful.
This article is for informational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please keep in mind every individual’s situation is different, and you should not take any actions concerning your body and well-being before consulting with a healthcare professional.
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