Amber
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Amber was 32 years old, engaged, and had a nine-year-old son when she discovered a lump in her breast. With her fiancé’s encouragement, Amber went to her gynecologist, who was not particularly concerned about cancer in such a young woman. But the mammogram quickly led to an ultrasound and a biopsy and a look on the nurse’s face that “wasn’t carrying good news.” Hearing she had breast cancer, Amber recalls, felt like “an alien picked me up and dropped me off in outer space;” even her doctor was surprised. The oncologist and breast surgeon told Amber she had Stage 1 invasive ductal carcinoma, however treatment was delayed while waiting to hear that another area of concern was benign. It was an emotional “roller coaster ride.” One month after her diagnosis, Amber had a lumpectomy, but ended up needing a re-excision because the margins were not clean, and one node was positive. The tumor’s OncoScore came back “as borderline” for whether the risks of chemotherapy would outweigh the risk of recurrence.
Young and with a school-aged child, Amber decided to do “everything” she could, and she proceeded with four rounds of chemotherapy. Amber has long, dark, thick hair and says, “they notice that about me.” She paid out-of-pocket for a cold cap with its 50/50 chance of preventing hair loss, because her insurance didn't cover it. Losing only half her hair was not noticeable to others, and has since filled in. Yes, she felt awful, but she didn’t look like, “the image of a cancer patient.” She worked full time as a service manager and her workplace was very supportive while she went through thirty-three rounds of radiation. To reduce her risk of recurrence, she had her ovaries removed and takes an estrogen blocker, which put her into menopause. The loss of libido, muscle aches, and fatigue are better than the alternative. Partial breast reconstruction surgery marked the end of her cancer treatment phase.
Amber says her biggest fear was “dying young and leaving her son behind.” Describing him as “a whiz,” Amber recalls that he asked about the cancer searches that he had found on her phone. He was devastated when she told him she had breast cancer, but she emphasized that “being strong and remaining positive” was how they were “going to get through it.” The support of her son and fiancé helped Amber “remain positive” even when faced with the prospect of her life “being cut short.” Other support came from family, friends, other survivors, and her community. With Amber in mind, her son’s football team wore pink socks and put a pink ribbon on their helmets. While semi-annual imaging keeps the “fear of recurrence” very present, she is “praying it doesn’t come back.” Faith plays a big part in her cancer journey. She credits her inner strength to dealing with early life challenges. She doesn’t “fret the small things anymore” and appreciates “life and living” more than ever.
Amber wants her story to be heard and to encourage young women to examine their breasts and advocate for themselves. Having heard too many stories of doctors dismissing symptoms in young people, she says, “if something is not usual, push your doctor.” Amber found private online breast cancer support groups for younger breast cancer survivors to be very helpful. As other survivors did for her, she wants people to know early in their breast cancer journey that they can “be a survivor too,” and that “there is a light at the end of the tunnel.”
Amber's Oncotype DX® score led some clinicians to recommend for, and others against, chemotherapy, leaving her to make the final call.
Amber's Oncotype DX® score led some clinicians to recommend for, and others against, chemotherapy, leaving her to make the final call.
But modern-day now is the OncoScore, and a lot of oncologists read the OncoScore. So, we had that done, and they presented my case to the board of oncologists at [LOCATION]. And I believe it was four oncologists. And my OncoScore came at a 21, which is 0 to 19, I believe it is low. 20 and 20 to 30 is considered intermediate risk, and anything higher than 30 is high risk. So, of course, I fell just right on that borderline. And the oncologist-, so, two of the oncologists said, "Give chemo." She's, you know, 32 years old with a positive node. “Let's, you know, stick to what is usual.” And two of the oncologists said, "No, we don't recommend chemo," due to, you know if it was going to benefit me anymore.
Amber chose breast conserving surgery despite the finding of cancer in a lymph node.
Amber chose breast conserving surgery despite the finding of cancer in a lymph node.
Chemo was pending any lymph nodes being positive. And then looking at it, they weren't anticipating any lymph nodes to be positive. So she suggested just doing a lumpectomy. The areas that they found- she found it was a smaller area and I would be successful with just the lumpectomy.
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So we scheduled the lumpectomy, and that was August [DATE], 2017. So it was actually exactly a month after being diagnosed, and went through surgery. They removed five lymph nodes at that time. And I had to wait approximately a week, week and a half, for pathology to find out, A: if we had clear margins, and B: if any nodes were positive. And [NAME] called me on a personal cell phone, because I was freaking out, you know, how bad is this? First we found out that she did not get clear margins. So she said, “I have bad news. I did not get clear margins. We will have to do a re-excision.” And she said she was hopeful that we, she'd be able to just do a re-excision and not have to do a mastectomy. And then it was a few days later that came back that one lymph node was positive out of the five that was removed. So that's a little bit concerning because it is left the breast. When I went back for surgery, part of me was thinking, you know, "Do I just do the mastectomy and just be done?” [NAME] said, you know, “I don't recommend it. Don't put yourself through more than what you have to, because the reoccurrence factor doesn't change much whether you have a mastectomy or just a lumpectomy.”
Amber describes her exhaustion from the start of radiation treatment.
Amber describes her exhaustion from the start of radiation treatment.
I was tired. In the beginning, I was extremely tired. It was exhausting just because every single day you had to go drive to the cancer center and take your clothes off, have radiation, put the clothes back on. And so it was just, it was exhausting.
Amber describes how she coped with the side effects of treatment.
Amber describes how she coped with the side effects of treatment.
So, there's, you know, no libido, like, feeling anymore, unfortunately. But you still have it. You know, we've been together for 10 years. So, he has been a huge supporter. And the doctor I see and I can't remember her name up there.
She gave me some creams because vaginal dryness is also another side effect and that helped immensely. And so, there is still, you know, sex life is still there. You know, it may not be as often as what it was, but it works for him and I.
Amber took on a new position at work soon after receiving her diagnosis.
Amber took on a new position at work soon after receiving her diagnosis.
So, I'm a service manager at [LOCATION]. And actually, I took that position on right as I was getting, right after I got diagnosed with cancer. So, it was, I moved up in the company,and I said it was something that I was interested in. And I said, "Well, you know, I would take the position if I wasn't going through breast cancer." And my boss said, "You can do it," you know, "I have faith in you." And I go, "Yeah, but it's a lot of stress," you know, "and going through this." And he goes, "I think you'll be fine." So, I took on this new role in November, and my first chemo was in October. So, I was literally going through a whole new job, new position, and going through a new journey in life as well. But the company I work for, they're extremely—it's a family-owned business, and so, they're extremely understanding. And they always told me, "Take the time you need. You don't have to be here. If you need to be off, you need to be off." I could work from home if I needed to be. And my colleagues as well, like everybody was completely understanding.
Amber says hard experiences in her past prepared her for cancer.
Amber says hard experiences in her past prepared her for cancer.
My parents divorced when I was very young. My relationship with my mother, it's pretty much nonexistent. So I didn't have the support system as far as mother, father, unfortunately, going through it all. But all of the struggles that I went through in my younger years has made me who I am today, and strengthened me to go through what I went through. I thought losing my dad was one of the hardest things I had ever gone through in my life, and then I was diagnosed with breast cancer and going through that. That is, that was by far the most difficult thing to go through in life. But everything leading up to that prepped me for that. And so I feel like it, it made it, made me go through it a little bit easier, just going through other struggles in life. I was, I was strong for it. I was made for, you know, I hate to say it, but yeah, made for it.
Amber sometimes imagines the worst when she’s not feeling well.
Amber sometimes imagines the worst when she’s not feeling well.
It's the fear of reoccurrence. So, I had my last mammogram in July, and it turned out good. But at first, they found a spot that was suspicious. So, I went through the emotions again of, “Okay there's something there.” But we did an MRI, and everything came back clear. But the, the fear of the reoccurrence. You're not feeling well, or you have a side effect, you think, “Is this cancer?” And I've never been a hypochondriac. If I was not feeling well, I'd wait to go to the doctor. I would never think that something was bad. And now your mind goes to the worst. It stinks, you know, because it is on your mind, and it's never gone for good.
Amber believes that everything happens for a reason.
Amber believes that everything happens for a reason.
I can't say that I faithfully go to church every Sunday, but again, I believe. I'm a believer that everything happens for a reason. And you might not know what the reason is when you're going through it, but for some reason, there is a reason for it all. So, as far as why I got diagnosed with breast cancer, why I went through this, I couldn't tell you. I feel that it strengthened us as a family and as a whole, and that is a huge thing; is it just really made us strong as a family, and it made other people see the bigger picture also. So, it was an eye-opener. And I think that's what, why maybe I went through it.
Amber connects with other young women with breast cancer through social media.
Amber connects with other young women with breast cancer through social media.
So, I just searched; well, ‘young women with breast cancer’ and lo and behold, there's a page: young women with breast cancer. And then, I also searched for ER/PR positive groups because that was my cancer. And I found the pages and I just joined the groups. And again, you don't have to say anything in the groups. You can just read what other people are saying, or you can ask questions. So, that's how I found them and just joined them. And I, still to this day, I am part of the groups, because, I don't know, something tells me not to, I don't want to delete them, so I keep them. And if I can be the help of somebody else that asks a question as well, every now and then, I'll answer questions on that too.
Amber acted as her own advocate, pushing for an MRI right away after her mammogram came back with “unusual” results.
Amber acted as her own advocate, pushing for an MRI right away after her mammogram came back with “unusual” results.
I feel that it's important as young women, screen ourselves. If something's not usual, push your doctor. You, you have to be your own advocate, and that's extremely important as well.
Yeah. I mean, this, did, did you run into a situation where you had to be an advocate in your, in your medical journey?
You know, I always pushed for additional, so for instance, you know, I went in. And what it was, I requested in [LOCATION]. I had imaging done. And then I said, “You know what, let's follow up with more imaging in [LOCATION].” And then I also, when I just had my last mammogram and it came back unusual, they wanted to wait to do a follow-up MRI. And I said, “No, I can't wait. You know, I'm not going to wait three months or four months. Let's do it now, because you don't know if it's something.” I wanted to take care of it. I’m not, I don't want to sit around and wait. So, I pushed for it. And it turned out that it was, you know, it was thankfully, it was nothing. But again, so I did push for it. But being knowledgeable and knowing what cancer you have and doing your own research. Then when you're talking to the doctors, you know what to expect. So, talking to a lot of my doctors, they're like, “You know a lot about this.” Yeah, absolutely. This is my body, and this is my journey. And I don't want somebody to be dictating what I'm supposed to do and me have no idea what I'm going through. So, I've always been kind of my own advocate for it of just having the knowledge so that way I can make the best decisions that I'm comfortable with.
Amber says she never asked for help but really appreciated what her co-worker did for her.
Amber says she never asked for help but really appreciated what her co-worker did for her.
I had so many people that told me, “I'm here for you. If there's anything you need from me, just let me know.” Well, I don't ask people for help. So, I was never going to ask anybody for help because that's not who I am. And so, what I noticed though, is the selfless people that, I had a co-worker, and him and his wife, they're just a co-worker, and they brought me a tray of like frozen meals from Sam's Club and said, “here you go.” They didn't ask if I wanted it. They go, “Here you go. This is for you, [NAME], and [NAME], so with the days that you don't feel like cooking.” I didn't ask for it. And like I said, I wasn’t, I would not ask anybody for help. And so, I tell people, don't just tell people you're there for them and you'll be there for them. You know, stop by, let them know that you care. If you-, as far as the meals, yeah there were days that I did not feel like cooking so those meals did come in handy – that we could just pop it in the oven and they were done. So yes, being an ear to listen, but also showing up when it's least expected, that helps. That really reinforces that somebody is really there for you. Because it's very easy to say, “I'm here for you. If you need anything call me.” But if you're not a person that asks for help, you're never going to utilize that.