Emotional impact when breast cancer returns: Helga Torres
About 18 months after her diagnosis with stage II breast cancer, Helga Nemarg Torres began having stabbing pains in her chest and abdomen, and bouts of extreme tiredness. Her medical oncologist told her those problems didn’t mean that she was having a breast cancer recurrence. They were side effects of her double mastectomy and breast reconstruction, he said.
“I guess because I’m younger, with no other health conditions, he saw me doing pretty good, so he was really not taking my complaints seriously. But I knew that something was off,” says Helga, who was diagnosed at age 35, in 2014. She lived in Stockbridge, Georgia, at the time.
The oncologist referred her to a psychiatrist, which Helga thinks was because of her anxiety. She liked her oncologist and had always followed his guidance before, but this time she didn’t. She went to her breast surgeon instead [of the psychiatrist], to see if the pain was caused by her implants. It wasn’t, but the surgeon offered a CT scan “so you can sleep at night.” When the scan results came back, he called and said she had a 5-centimeter tumor in her liver. Helga had metastatic, or stage IV, breast cancer.
Now 38 and living in Atlanta, Helga talks with LBBC contributing writer Robin Warshaw about the emotions she experienced after her metastatic diagnosis and how they differed from what she had felt when diagnosed with early-stage breast cancer.
Robin: Was anyone with you when you heard the results of the scan?
Helga: It was a Friday night at 6 p.m. I will always remember [the breast surgeon] stayed on the phone with me about 2 hours because I was alone. My husband was coming home and was stuck in Atlanta traffic. I [was] home alone and told I have metastatic breast cancer. It was devastating. There is no other word.
My surgeon said, “We’re just going to deal with it.” That was so helpful. I told him we planned to move to the city. He said, “You can still move.”
I did not want to go back and see [the oncologist] that kept dismissing me. I understand it was not his fault that it came back and metastasized, but it was frustrating that he would not take my concerns seriously.
When I said I did not want to see my doctor anymore, the surgeon referred me to another oncologist. He said, “I’m going to call her now so you can see her early next week.” He got me going. He helped me instead of hanging up on me and letting me suffer. He guided me into a plan of attack.
Robin: What were your first thoughts?
Helga: My husband got [home] and I called my best friend. I sat them down and told them and there was crying, of course.
I remember crying for days. I was 36, I was still working full time [as a highway engineer]. You worry about so many things. We’re very close with my family, you worry about loved ones. I was getting my health insurance from my employer, but you worry about health insurance. It’s overwhelming, all the worries.
Robin: Was the emotional experience different than it had been the first time?
Helga: With the first diagnosis, you think, “I just have to go through this really hard year or couple of years, whatever it takes, and we’re done.” I remember it was really hard, I was sick, but you had a goal and then you would be fine.
But with a metastatic diagnosis, I have a deadline now, I have an expiration date. This is terminal, it can’t be cured. And all these worries that come from it. Am I going to be very sick? Am I going to be in pain? How is this going to progress?
And there is sadness because we were hoping to have children. I pushed to have ovarian suppression during chemotherapy for my early-stage cancer, thinking that could help preserve fertility. With the metastatic diagnosis, we had to move on and focus on my treatment.
Robin: Did you talk to other people about your new diagnosis?
Helga: At the beginning, it wasn’t [an] embarrassment, but I was not open about it. It was hard to get support because I was not telling people what was going on, or I was telling them but only a little bit. I think it was because I was working and I wanted to work as long as possible. Now that I’m not working and I’m more open about it, I feel that I get more support.
Robin: What did moving on after the metastatic diagnosis look like?
Helga: That’s when I started doing more research and learning. It was completely different than with the early diagnosis, when I was [focused on], “When do I start treatment? When am I going to start chemo?” It was like a rush.
But for metastatic, it took me 2 months to get started on treatment. Because I said, “You know what? I’m gonna change doctors, I’m gonna seek second opinions. It’s not an emergency anymore, it spread.”
Robin: So you went to see the new oncologist?
Helga: She said we’re dealing with 2 to 2 1/2 years [expected survival]. I went to that appointment with my neighbor and I could see her melting into her chair. Then we came home and I told my neighbor, “We’re gonna find another doctor!”
I spent a lot of time online, looking for people with a similar diagnosis, what did they do, what treatment did they start with. I remember looking at their profiles and sending private messages because they were similar. Now I know it doesn’t work like that. They could be the same age, same diagnosis, same cancer type, and you might respond differently.
I went [from Georgia] to a large cancer center in Boston [Dana-Farber Cancer Institute]. The doctor there told me to go to a National Cancer Institute-designated cancer center in Atlanta. I did not know about that [NCI designation] before. He [also] said he would be happy to do second opinions when I need them.
When they told me I only had 2 years to live I was not in good shape mentally. My husband was with me in Boston and the doctor explained metastatic breast cancer to us. He said, “Those statistics might be outdated. We’re not curing you, but we’re looking at longer periods, maybe five years, and other patients are even seeing longer.” He was honest but he gave us a lot of hope. It was a good thing that we went up there.
Robin: Are you less emotionally engaged with your doctors now than you were with your early-stage diagnosis?
Helga: 100 percent! I’m very detached. I don’t wait anymore to have appointments. I email them with papers and questions. They need time. I do a lot of research, I go online to metastatic breast cancer groups, ask other patients how they’re doing, what they’re feeling with their side effects. It’s not that I make decisions based on that but I bring doctors the stories and say, “Hey, they’re doing this. Would that work for me?”
Last summer [after being diagnosed with brain metastases], I went for opinions in three cities to decide on treatment. It helps because you feel you’re doing everything you can to help yourself and advocate for yourself.
I’m in my fifth line of treatment and I’ve joined a clinical trial for the first time, the HER2CLIMB study.
Robin: Where do you get your support from?
Helga: Mainly from my husband, my family, my best friend, my neighbors and our beloved Chihuahua, Chico. My mom lives in Puerto Rico but she gets on a plane and is here when I need her. My brother is nearby. My sister in Puerto Rico sent my 9-year-old nephew with my mom because she says I need the distraction. She’s been doing that since my metastatic diagnosis.
Robin: Do you find support from other people with metastatic breast cancer?
Helga: The metastatic community is a big part of my support. I do not see how I could do it [without them] because nobody else understands it that well. Some I met for the first time in person at LBBC’s Conference on Metastatic Breast Cancer but I felt I already knew them from online.
We have a support group for metastatic breast cancer at [Winship Cancer Institute of] Emory [University, in Atlanta]. It’s about 15 people for 1 hour, so there’s only time to check on how you’re doing. That’s why me and a couple of the younger girls go for lunch afterwards. We need more support time.
There’s a local support group in Stockbridge, where I lived, but it’s mostly early-stage people. I went a few times after I was metastatic and had to stop. I remember one of the ladies was deciding whether to have a single or double mastectomy and someone telling her, “Well, you don’t want to have to deal with it again down the line, so you should get a double mastectomy.” It was hard to listen to myths such as having a double mastectomy to prevent metastatic breast cancer. There’s not a lot of understanding of the entire breast cancer picture.
Because of LBBC [advocacy training as a Hear My Voice volunteer], I went back in June to speak to the same local support group. There were people who were just diagnosed 2 weeks before. I tried my best not to scare them and shared little bits of my story. I’m glad that I went back but it took 2 years for me to do that.
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
Sign up to receive emotional support, medical insight, personal stories, and more, delivered to your inbox weekly.