Sisters in Survivorship

It’s been months since I had the freedom to spend time with this beautiful friend and fellow breast cancer survivor. Yesterday, we had the opportunity to sit down at Niedlov’s, our favorite local coffee shop and bakery to discuss her cancer journey and, for better or for worse, how it feels to be a survivor.

Linda was diagnosed with breast cancer in April of 2019 after experiencing random nipple discharge that was spontaneous and unilateral. After a 3D mammogram and an ultrasound, she was told that her experience was normal for women experiencing a hormone shift (postpartum) and that she should come back for a check up in one year. That quickly changed after a procedure.

I was diagnosed in April 2019. It was after I randomly had some breast discharge that was spontaneous and unilateral. I went and had a 3D ultrasound and a mammogram and told that it was totally normal, not to worry about it, and to come back in a year for a check up. They said that’s what happens when hormones shift. I felt relieved initially, but then I didn‘t have a peace about it when I started looking into it. I wasn’t premenopausal, it didn‘t make sense to me given that I hadn’t nursed in many years, it felt off. So I pushed in the only way I knew how and asked my general doctor to test the discharge. The results came back inconclusive and abnormal. They could see my unsettled mental state, so they offered take out what was most likely a benign papilloma. It was up to me as if that would ease my mind. That was my first surgery. I thought I could breathe easier having done my due diligence. That was when I got a call from the nurse that it was cancer, grade 3, without clear margins. It was an aggressive form with extensive comedonecrosis (cell death) due to the rapid growth, and I needed a mastectomy. Two weeks later, they removed the breast with cancer. It was shocking and terrifying, and I wasn’t given another option in terms of what I could do given the size and grade of the cancer. I was in a state of fear and shock, and I wanted them both off. But, I listened to my doctor who recommended that we do the cancer side first because I wasn’t able to wrap my mind around if I wanted reconstruction, and he thought it was going to be traumatic enough to do the one side. It was hormone negative, all grade 3, even with mastectomy less than 2mm margins. I had lymph nodes taken out and I wanted them to pull out the big guns to tell me it wasn’t going to come back. After several opinions, I was not recommended for radiation or chemo, which was a relief because no one wants to go through those things, but you also want to feel that you have done everything in your power to not have hidden cells growing in your body.

Less than two years before Linda’s diagnosis, she lost her dear friend and sister-in-law to breast cancer. I asked her what it was like to receive this diagnosis in light of that experience and what she would say to anyone being tested for breast cancer or with suspicions about their own health.

I feel that walking through with Aimee, someone that I loved so much, is what God used that to save my life. Walking that path with her, she really had to push and advocate for herself that something was off, that it wasn’t just mastitis. Her decline was very rapid, so it gave me a very close view of the devastation of cancer. She was diagnosed and passed away in less than two years. That was extremely close to my mind in terms of advocacy, it was what was propelling a lot of people in our community to go ahead be faithful in their mammograms and do everything we could do on the preventative end. I don’t think I would have been as vigilant as I was terms of really having a peace about it. It’s why I kept calling and pushing. She was always in the back of my mind, her first symptom was also breast discharge. I think people look at us and think, “Well, you look young and healthy,” so oftentimes our worst fears are diminished. Having walked that with Aimee was really terrifying, because I found myself in front of her very same doctor, and I felt a desperation wondering if I was going to be facing imminent death and not being here for my children. It added a little bit in terms of how traumatic it felt because I knew what cancer could do. I’m thankful for that experience—we don’t always know how our hearts and lives will intertwine. The hardest thing was when I realized that Aimee’s experience is part of what helped to save me. I was just a flood of tears, weeping, because I wish she had had someone. There’s a guilt because her experience is what helped me find answers, but I would give anything in the world if she had had that person that would not let her rest until she got answers.

If it’s taught me anything, you have to advocate for yourself regardless of what professionals and doctors tell you. If you feel like something is off in your own body, if you don’t have an internal peace about it, then you do your due diligence—find another doctor, get a second opinion, you find anybody that will let you get the care you need for your own body, because nobody knows our own body like we do. I had felt off, slightly queasy in the mornings, tired—I think I chalked it up to age and stress, but I definitely knew something was awry in me, and only women can know that about themselves. It’s important to have a doctor who listens to you, and even if you get a negative result with scans or tests, it’s still worth it for the peace of mind.

After some discussion on the merits of hard won strength and wisdom, Linda and I finished up our time acknowledging the shroud of mystery around our diagnoses of DCIS—ductal carcinoma in situ. We both received the diagnosis, which translates “breast cancer in place,” or pre-invasive. But, we also both had a similarly aggressive, hormone negative form. If we’d been diagnosed just a few months later, our survivability could have been much lower. We hope to see more research on DCIS and a victory in the efforts toward a breast cancer vaccine. I can hardly imagine a day when that is possible! We owe a giant debt of gratitude to the cancer researchers out there determined to win this battle.

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