By Mandy Richardson
You’re too young. You don’t have a family history of cancer in women under 50—only postmenopausal. Cancer isn’t usually painful. You’re breastfeeding; you’re healthy. All of these thoughts and more are so reassuring as a 33-year-old mom with a 6 year old and a 7 month old who had been dealing with a “stubborn clogged milk duct.” So much so, in fact, that I leaned into these reassurances despite the lump getting bigger and more painful.
I saw my OBGYN in late June 2021 for what we determined to be a tricky little clogged duct. I’d noticed it about three weeks prior. I’d had clogged ducts before with my first baby. This one felt a little different, which led me to making the appointment. But after a manual exam, the nurse practitioner came to the same conclusion as me (that it was nothing to worry about). She gave me some suggestions to help massage it out and told me to call back if I got a fever. I never got a fever, so I let it go. But it kept getting bigger. I wasn’t having any issues with supply, so I wasn’t so confident that it was a clog.
I scheduled my annual exam early and made that my focus. My OBGYN put me on a round of antibiotics because the lump was now quite visible on the underside of my breast and very “angry” looking. It was a 10-day course of antibiotics, but I called back after eight days when I didn’t see any improvement. When I called, I was able to finally schedule an ultrasound. The nurse practitioner was confident they could aspirate it in the office. Except they couldn’t.
The image on the ultrasound showed what appeared to be a non-solid mass. I now know that it was likely just pockets of breast milk around the mass. Using the ultrasound, the nurse practitioner inserted a long needle into the mass in an attempt to drain it. The first attempt yielded only blood. So did the second. Rather than poke me full of holes, she deemed the procedure unsuccessful and decided to send me for further imaging.
I was sent for a formal ultrasound, which determined the lump was solid. Still, no one mentioned the “c” word. Lactating women get benign masses all the time, I was told. So I was still pretty unphased even as we scheduled the core needle biopsy.
Until four days later.
The results came through the portal application on my phone, before the doctor had a chance to call me. I didn’t know what grade 3 meant. I didn’t understand the percentages listed. But I understood the word “carcinoma.” The surgeon did eventually call. I don’t remember much of the conversation, other than I had a large, aggressive tumor and an oncologist would be calling me soon. I waited two days before calling the breast center, and was told everyone was just “very busy” and that someone would call me back soon. Deciding I had done enough waiting, I let a family member pull some strings and found a new doctor.
I met my new surgeon and medical oncologist the next day. They explained that my tumor was 5.7cm, and was slightly estrogen positive. They said it was behaving aggressively and more in line with triple negative breast cancer (TNBC), and they wanted to treat it as such. Because it was so large, the plan was to do chemotherapy first. The goal for my start date was two and a half weeks, right before Thanksgiving. I didn’t know then that in some cases, people wait multiple weeks to start treatment. I asked if I would be okay waiting that long. My oncologist said that two to three weeks would be okay; two to three months would not have been.
I had to schedule my PET scan, a mammogram (no one could believe that hadn’t already been done), another ultrasound, an EKG, and my chemotherapy port placement. Everything was still backed up from the pandemic shutdowns and most places were scheduling into mid-December at that point.
I called and called back.
I begged and cried.
My husband drove me to clinics as far as almost two hours in one direction, and then back an hour in the other, just to get all of the testing done. The ultrasound suggested possible lymph node activity, and the PET detected a mass in the area of my right ovary. My oncologist ordered bloodwork. The CA 27.29 blood test, which can potentially pick up breast cancer, came back high—as expected. But she ran another, one that could suggest ovarian cancer (CA 125), and that came back elevated as well.
My daughter was eleven months old at this point, and despite all attempts was still consistently refusing to take a bottle. My doctors told me that I could continue to nurse, but to be prepared to wean her. I occasionally leaked breast milk from my biopsy hole. Nursing from my left breast was painful, but I was repeatedly assured that it would not hurt my daughter. We ended up weaning her cold turkey the day of my PET scan, since my milk would not have been safe after that test.
The next day I was in an appointment with a gynecologic oncologist and scheduled
surgery for the following day to remove my right ovary and fallopian tubes. Because my
breast cancer was so aggressive, we could not afford to delay in order to test what could
possibly be on my ovary. I had my right ovary and fallopian tube removed the week before Thanksgiving. Somehow, everything came back benign. My surgeon couldn’t find a mass. No one had an explanation, though my blood work has shown normal numbers since then.
I started Adriamycin/Cytoxan (AC) chemo the day before Thanksgiving, and our wonderful neighbors brought us dinner so we didn’t have to cook. My hair started falling out 13 days later, the day before round two. I did four rounds of AC, followed by 12 rounds of Taxol.
After completing chemo, I was given a couple of weeks to recover and we completed new imaging in preparation for surgery. My next tests were completed at the end of April: another mammogram, ultrasound, and PET scan. My tumor had shrunk to 0.8cm! Because of that, my surgeon was able to suggest a lumpectomy, followed by radiation. During my lumpectomy the surgeon removed three suspicious lymph nodes from under my arm, and there was no sign of the cancer spreading beyond my breast!
The pathology of the remaining disease came back as triple negative, so I am currently
taking Xeloda, an oral chemo that is sometimes recommended for TNBC patients. It’s been a long road, but I am so glad I didn’t wait any longer than I did to get my symptoms checked out by my doctor. I have one more cycle of Xeloda and then I will hopefully be finished!
When I met with my new surgeon, Dr. Melissa Camp, at Johns Hopkins Hospital on November 5, 2021, she told me to give them a year. That I would look back at this whole experience as just a speed bump that I had to get over. We are a little over a year now, with the Xeloda regimen. The experience was everything her staff, as well as my medical oncology team, said it would be.
I have been able to stay mostly active, and I want to spend all of the time that I can with my husband and my girls. We have done some traveling and hope to do more. I hope to complete section hiking of the Pennsylvania section of the Appalachian Trail. But what I really want to do is pay it forward. I want young women to know that we are not immune from this awful disease, despite what statistics show. I want to provide support for women I know, as well as strangers, who are going through this, like others did for me. But I really want people to know that our best—and sometimes only—advocate is ourselves. And that we should never stop fighting for ourselves.
Thank you for sharing your story, Mandy. SBC loves you!
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