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Breast CancerPatient Stories

Reimagining My Future After Beating Breast Cancer at 27: Does Survivor Anxiety Ever Go Away?

October 2018 Vol 4 No 5
Tziporah Newman, BSN, RN
Middlesex County, New Jersey
Tzippy

My grandmother had ovarian cancer in her 40s and breast cancer in her 50s. Since her cancer involved a BRCA gene mutation (genetic abnormality), some of my aunts and uncles decided to have genetic testing to see if they also carried that genetic mutation. At that point, however, my parent opted not to get tested. I found out the hard way that I carried that gene mutation when I was diagnosed with breast cancer at age 27.

A Life Turned Upside Down

On Christmas Eve 2016, I felt a lump in my breast when I was taking a shower. My first thought was that it was something else. A couple of years before that I had an inflamed lymph node that I thought was cancer, but it turned out to be nothing significant, so this time when I felt the lump, I didn’t immediately think the worst.

Initially, my doctor also didn’t think it was cancer, mostly because of my young age. Thankfully, he didn’t simply dismiss it. So I had an ultrasound on January 16, and knew right away that what I was looking at on the screen was cancer. I have a medical background—I’m a nurse by profession—and I just knew.

My doctor was about 90% sure it was cancer, so I had a mammogram and an MRI that same day. Even with those additional tests, my doctor wasn’t 100% certain, so I returned 2 days later to have a biopsy. I took the slides in a shopping bag to NYU Pathology Department, and they determined that the cells were indeed cancerous. This was a 2-day whirlwind. I also had a genetic test, which showed that I did have the same BRCA gene mutation and the same type of cancer that my grandmother had.

From the initial biopsy, my oncologist thought the breast cancer was probably stage I. I decided to get multiple opinions from several oncologists, breast surgeons, and plastic surgeons. Almost every day for a month I was meeting with a different doctor. I also had another biopsy done under my arm, because they found that some lymph nodes were involved, so within a month my diagnosis changed from stage I to stage II cancer.

I started chemotherapy at Memorial Sloan Kettering Cancer Center the last week in February 2017 and had several rounds of chemo until July. At that time, I felt another lump, and it took the wind out of my sails. I thought the last 6 months had been nothing. My oncologist sent me for a PET scan. But to my surprise, the PET scan came back clean and showed that my cancer had a complete response to treatment. The initial tumor was gone.

Tzippy

I had a mastectomy at the beginning of August, and then I was eligible to take part in a clinical trial related to radiation therapy (to study the effects of different types of radiation on the heart of patients with left-sided breast cancer, like me). I enrolled in a clinical trial and luckily was randomized to receive proton therapy, a type of targeted radiation, which I received until the end of November 2017. The last step in the process was breast reconstruction surgery. I had the first surgery in June and am scheduled to have the second surgery in January 2019.

The Aftermath of Treatment

For 11 months, my world was turned upside down while I battled breast cancer, but through it all I had unrelenting strength and support from my family and my community. Everyone from my aunts and uncles to distant cousins, high school classmates, and friends I had made studying abroad in Israel rallied around me. They truly helped me out on a day-to-day basis.

When people tell me, “We’re thinking about you, we’re praying for you,” I tell them that without them I wouldn’t be standing here in remission, strong and healthy. I attribute my success and my progress to God and to the support system I had, and that I still have. However, the support I now need is a little bit different.

Survivors’ Anxiety: Going It Alone

Reintegrating back into society as a survivor has been hard. When I saw my oncologist in January 2018, she said, “I’ll see you in 3 months.” And then it went, “I’ll see you in 4 months,” and “I’ll see you in 6 months,” and as doctor visits slowly get further apart, this anxiety builds up. For 11 months I had somebody holding my hand every step of the way, and now it feels like they say, “You can do this on your own, you don’t need me, you’re healthy.”

That gives me a lot of anxiety. These days I think that everything is “something.” If I feel a little bump somewhere, or if something is hurting, I immediately think, “cancer.” I definitely had a harder time acclimating back after treatment than after my initial diagnosis, or even during treatment.

Based on my talks with my social worker at Memorial Sloan Kettering, it seems that this kind of anxiety is very common with cancer survivors, especially with young survivors in their 20s.

Cancer never truly goes away. There are follow-ups, scans, and this and that. Once you have cancer, you essentially have cancer the rest of your life, even though you may be in remission. I am working on finding support groups for women who are in a position similar to me.

This Ends with Me

People often ask me if I would have liked to have known in advance that I was at an increased risk of getting breast cancer. I think it would have given me more options. If I had known, I could have had prophylactic bilateral mastectomy to minimize significantly the risk of getting breast cancer, or I could have had biannual testing and monitoring to catch anything early on.

But the past is in the past. I wouldn’t wish the 11 months of treatment or the anxiety I feel now on anybody, but I also don’t regret it. I don’t have any feelings of anger about not knowing I carry the BRCA gene mutation.

The hardest part for me is knowing that since I carry the BRCA mutation, I could pass it down to any future children. I was able to do fertility preservation before I started treatment, so I do have eggs stored, and having children is an option. With new advances in technology I can get a biopsy done when they fertilize the egg to see if there’s any genetic abnormalities.

A big part of me would love to go through that option, because I don’t want to have to worry about my kids having the same gene. I want that genetic mutation to be done with me. But I would also love to just be carefree for a moment in my life.

I recently spoke to someone who went through a similar situation; she is years out of treatment and has 3 beautiful children who were conceived naturally. She pointed out that there’s been so much progress in terms of breast cancer research and BRCA mutations.

It is true. I trust that in 20 or 30 years, when my children are at the testing age, there will be so many more advances in treatment, they won’t have to worry as much as I did. I’m not sure which route I will go just yet, but regardless, I certainly hope that this cancer, linked to the BRCA gene, ends with me.

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Last modified: October 27, 2018

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