Kerry
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At the age of 35, Kerry felt a lump in her right breast—just six-months after a “clean” exam. The local clinic said it was probably a fibroadenoma and told her to wait a year to see if it had grown, adding “you're young. You're healthy. You don't have any family history.” But Kerry’s partner insisted, and they agreed to do a biopsy. The doctor who called to tell her she had breast cancer was shocked and Kerry thinks he knew he had made a big mistake. But the quality of care did not improve. The follow-up MRI found two other spots—and they refused to biopsy them, saying it was unlikely to be a different cancer. Appalled, Kerry’s partner insisted she get a second opinion at an academic comprehensive cancer center. Despite wanting to trust her doctors, Kerry is grateful she followed her partner’s instinct. The comprehensive cancer center biopsied everything, and indeed discovered a separate cancer. Genetic testing found she tested positive for a mutation on her ATM gene (read more about Kerry’s experience with inherited cancer risk here). Kerry notes she is rare—at such a young age to have not one, but two different kinds of breast cancers and a rare genetic mutation.
Kerry notes being in a high sense of urgency with so many unknowns was “beyond scary.” She is grateful that the information was given in a respectful manner to help them make an “informed decision.” Ultimately Kerry wanted to live. Everything else came down to, “does this really matter?” Chemotherapy side effects—losing her long beautiful blonde hair, gaining weight, chronic fatigue—were minimal compared to living long enough to raise her small children. Treatment started with a chemotherapy cocktail containing Taxotere and pertumuzab to shrink the tumors. It was rough and exhausting. A double mastectomy with reconstruction made sense given her genetic risk and young age. The symmetry of having a bi-lateral mastectomy with reconstruction helped her to feel beautiful in the face of so much loss. Currently, Kerry does immunotherapy every three weeks and she just started tamoxifen.
Kerry counts her blessings. Had she “not had that second opinion,” the local clinic would have treated just one cancer and left the other one to spread. With good insurance and her partner’s income, Kerry was able to close her daycare center and fully focus on her health. In the midst of divorcing her husband of more than ten years, Kerry had a loving partner, who became her fierce advocate. Their kids, living in a blended family, were loving and resilient during her tough treatment and recovery. She has a big family with lots of love. Kerry struggled to accept help from friends and family until she realized that by accepting others’ help, she in turn helps them. Giving support to others with breast cancer is her way of paying it forward. She is now wrestling with some post-treatment loss of self-esteem. Being bald with 20 pounds chemotherapy-induced weight gain makes her feel less beautiful. But her partner says, “you're beautiful all the time, and you can pull off any look.”
Kerry says she has “always known that life is short,” and thus has loves unconditionally. She has said, “I love you” to everyone she has loved and it was important that someone love her in the same way. So, she got a divorce and found that kind of love. Cancer, she says, was a wake-up call. She knows that “life is short,” and she is more likely to “preach it,” appreciate the sun shining, or her kids’ laughter. She focuses on being brave and positive and fighting for her kids.
Kerry is grateful her partner insisted she get a second opinion when the first clinic she went to didn’t fully investigate her lumps and lymph nodes.
Kerry is grateful her partner insisted she get a second opinion when the first clinic she went to didn’t fully investigate her lumps and lymph nodes.
So, March of 2018, I went in for a well woman exam. And there was nothing that brought up any red flags or anything. Everything seemed normal and okay. I was given a breast exam, a physical breast exam. But she, the physician didn't feel anything. So then less than five months after that, I felt a lump on my own.
So, I went to [LOCATION], which is where I was going to the doctor at the time. And they did a biopsy. But the doctor assured me that I was young, and it was probably a fibroid. I forgot what they’re, fibroadenoma. And he was actually trying to tell me that I should probably just wait 6 to 12 months and come back and see if it had grown or anything. And my partner said absolutely not. She had lost her mom to cancer. And she said just, you know, it's better to just check anyways. They were saying I was too young to get cancer. So anyways, I had that cancer biopsy right away. So, then they found out it was cancerous. And shortly after that, they, they did the MRI, and then they discovered that there was more than one spot in that same breast. There were two other spots. And they weren't going to biopsy them to find out if it was the same cancer, which I thought, I mean, I don't know anything about cancer. I didn't at the time. But I was very trusting of the doctors. So, I thought it was different, but I wanted to trust them and just go with what they said. So, the oncologist in [LOCATION] had already decided what they were going to treat me with, not even knowing the full extent to my situation. And that was very alarming to my partner. And she said we should get a second opinion. So, we decided to go to [LOCATION]. Which at the time, it was very scary because all I knew was that I had an aggressive cancer.
So, they actually were opposite on everything in [LOCATION]. They said, you need to be biopsied. Everything needs to be biopsied, down to your lymph nodes. So, they went in and surgically removed I think three or four lymph nodes right away. And there was a micro bit of a cancer in one of the lymph nodes. And they then discovered that that cancer that they found in the lymph node was a separate cancer from the one that they found in [LOCATION]. So, at that point, I was told that it was odd that I had cancer because I was so young, that it was probably not cancer. And I was also told that it was very odd that it would be two cancers, which it was.
Kerry describes the big and small decisions she faced.
Kerry describes the big and small decisions she faced.
I think everything's on a timeline. So, you know, the doctors, the surgeons and everybody needs to know what your plan is. And, so, they kind of just throw some information at you and say, "Make a decision." Because they want to be respectful of you and how you feel and. But at the same time, they want to make help you make an informed decision. So, there were decisions being made the whole time. You know what I mean? Everything you do is a decision. Like, should I get a second opinion? You know what I mean? Which was a big decision that was made. The second breast, you know, being removed, that was a big decision. To me, everything is just, it's like life or death. So, it's, all the decisions are kind of like, is this, does this really matter?
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So there, were decisions that were made for me and decisions that I got to make on my own. And they did a good job of trying to make me feel like I had more choices, probably, than I really did. But that's like the important thing, like you said earlier, is either having an advocate for you or being your own advocate and saying, you know, a second opinion. That's critical. That's a big decision. Maybe life-altering. So that's probably the biggest decision.
Kerry wanted lower cancer risk and also to be symmetrical.
Kerry wanted lower cancer risk and also to be symmetrical.
When they told me I had a choice, then it was like, I wanted to do the right thing. And they did tell me that the chances of it coming back into your left breast, if you leave it, I mean, if we're constantly checking you, it’s pretty small. You know? But I still, I think I wanted symmetry, and I wanted to feel beautiful. And I knew that they do less scans on me if they just remove them both. And, so that was another thing. You know, the idea that, I mean, and then with the implants, you think about, like are they going to still be able to see stuff with the implants in there? You know, that was a question that I had. There are so many things that you don't know, and you just have so many questions. But so, I think there wasn't anything medically that was, that said, you know, for sure you need to do this. So, it just really came down to my personal feelings on it.
Kerry found the nurse navigator helpful in some ways, but not in others
Kerry found the nurse navigator helpful in some ways, but not in others
Well, I was going through a divorce. And so, there was a time period that I was still on my ex's insurance in [LOCATION]. And so then, yeah, I had to have everything switched over. The nurse navigator in [LOCATION] took care of everything as far as switching everything. And I didn't have the greatest experience with the nurse navigator in [LOCATION] because it was like she wanted to be helpful, but it was also like she said, "Trust your doctor." Which I get, but at the same time, it's like you are supposed to be listening to the patient's concerns. And I get that, probably, a lot of cancer patients are frantic, worried and concerned. And your job is to ease their mind, but at the same time, you really need to listen to what their concerns are and talk to the doctors.
Kerry describes her struggle between light and dark feelings.
Kerry describes her struggle between light and dark feelings.
There were times where my mind would go to the negative. What if I do die? And my partner would say, “Stop. Don't go there.” You know? “That's enough.” Like, we’re, you're going to fight. And my sister said the same thing. Like that's just not even an option. I would say, “Well, what if it is? I mean, what if that does happen? We need to talk about it.” Or I wanted to like have something planned out just in case. But at the same time, you just don't want to go there, because you can't let yourself go there. Because if you do, then what if it does happen? You know what I mean?... I'd rather just stay in the positive and stay in the light and think that way.
Kerry is grateful her partner insisted she get a second opinion when the first clinic she went to didn’t fully investigate her lumps and lymph nodes.
Kerry is grateful her partner insisted she get a second opinion when the first clinic she went to didn’t fully investigate her lumps and lymph nodes.
So, March of 2018, I went in for a well woman exam. And there was nothing that brought up any red flags or anything. Everything seemed normal and OK. I was given a breast exam, a physical breast exam. But she, the physician, didn't feel anything. So then less than five months after that, I felt a lump on my own.
---
So, I went to [LOCATION], which is where I was going to the doctor at the time. And they did a biopsy. But the doctor assured me that I was young, and it was probably a fibroid or fibro-, I forgot what they’re, fibroadenoma. And he was actually trying to tell me that I should probably just wait 6 to 12 months and come back and see if it had grown or anything. And my partner said absolutely not. She had lost her mom to cancer. And she said just, you know, it's better to just check anyways. They were saying I was too young to get cancer. So anyways, I had that cancer biopsy right away. So, then they found out it was cancerous. And shortly after that, they, they did the MRI, and then they discovered that there was more than one spot in that same breast. There were two other spots. And they weren't going to biopsy them to find out if it was the same cancer, which I thought, I mean, I don't know anything about cancer. I didn't at the time. But I was very trusting of the doctors. So, I thought it was different, but I wanted to trust them and just go with what they said. So, the oncologist in [LOCATION] had already decided what they were going to treat me with, not even knowing the full extent to my situation. And that was very alarming to my partner. And she said we should get a second opinion. So, we decided to go to [LOCATION]. Which at the time, it was very scary because all I knew was that I had an aggressive cancer.
---
So, they actually were opposite on everything in [LOCATION]. They said, you need to be biopsied. Everything needs to be biopsied, down to your lymph nodes. So, they went in and surgically removed I think three or four lymph nodes right away. And there was a micro bit of a cancer in one of the lymph nodes. And they then discovered that that cancer that they found in the lymph node was a separate cancer from the one that they found in [LOCATION]. So, at that point, I was told that it was odd that I had cancer because I was so young, that it was probably not cancer. And I was also told that it was very odd that it would be two cancers, which it was.
Kerry wants clinicians to hear her message of gratitude.
Kerry wants clinicians to hear her message of gratitude.
Also, thank you to the doctors that have helped me live and found the cancer, the second cancer. And thank you for being very confident in what you're doing. And we need more confident people like that. It's not arrogance, it's confidence. You know, that's very important. They're not blindingly medicating, but they're actually looking at all of the puzzle pieces and putting it together and saying, this is what's best. Thank you for that.