Shari’s Stage 4 IDC Triple-Positive Metastatic Breast Cancer Story

Shari shares her metastatic breast cancer story, which began with her finding a lump in her breast. She details undergoing a lumpectomy, chemotherapy, and radiation.

In her story, Shari also describes navigating life with cancer, from facing metastasis, dealing with scanxiety and hair loss, being a self-advocate, and how the diagnosis impacted her marriage.

Be able to accept the help of all the people that want to help you. Allow people to take things off of your plate.

Shari S.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Results of the lumpectomy

They took out the lump, and the margins were fairly clean. They said they had good therapies for triple positive and HER2, but then they wanted to check the lymph nodes. They did a PET scan.

The day I went back to the oncologist to start my chemo while waiting on the full diagnosis and staging, I found out it was metastatic and I was stage 4.

That was a lot to take in that day, but the treatment was still the same. My oncologist said it was a lot of information for me to take in on one day and was willing to reschedule my treatment, but I didn’t want to. We were treating it aggressively.

I was there and ready and wanted to get started.

How were you thinking and feeling after the diagnosis?

My original oncologist isn’t my oncologist now. His bedside manner isn’t the greatest. The day he gave me the diagnosis, he kept asking, “Do you have any questions?”

We didn’t know what to ask. Finally, my husband asked about prognosis. He said I had 2 to 10 years, depending on how well my body reacted to the treatment. 

By the time I got home, I’m Googling everything. I read that the next place it can go is to your brain, which the doctor didn’t even mention. I’m thinking, “Is it there, too?”

We hadn’t done any testing for that. My surgeon ordered an MRI for me, and at that point it was clear, so that made me feel better. 

My husband and I just thought of it as a chapter and something we were going to get through. It took a while to realize that this would be the rest of my life. We’ve definitely started living our lives how we want to.

There’s always a reason to not go on vacation or something, but now we don’t let those things get in our way.

»MORE: Processing a cancer diagnosis

How did you tell your loved ones about the diagnosis?

My husband was there with me. He’s always there with me. I have 4 adult boy children. I told them all early that I had cancer and thought it was early stages. I had to call them all back and tell them it was metastatic, and they all dealt with it like they do with Google and research. 

My parents had a hard time with it. One of my first thoughts was, “Am I gonna outlast my parents?” We told our closest family first, and then I had to tell work because I knew I was gonna start losing my hair.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment

What was the lumpectomy like?

It was same-day surgery. It was no big deal really. The biggest thing for me was after surgery and recovery and seeing the indentation in my breast on that side, because now it doesn’t look like the other one. 

The recovery was very quick. We were back in surgery the next week to look at my lymph nodes and to get my port put in.

The lumpectomy was no big deal. It was a couple of stitches, and that’s about it.

What was your chemo regimen like?

I had 4 rounds of Herceptin, carboplatin, and Taxotere. I had infusions every 21 days. I would get infused on Fridays. The first couple really weren’t too bad. They didn’t feel great, but it wasn’t bad.

After the first one, I went back to work on Tuesday, and I realized I had been walking around in a fog all day. We started working from home the week after the infusion. I would go to work when I was able to and just did what I could. 

Did you achieve NED (no evidence of disease)?

By the next March, I had another repeat scan, and I had no sign of any active disease. 

I switched oncologists. Nothing changed in my treatment, but now there’s a person I can talk to about anything. I went in for the results, and he says, “I understand you thought you got the wrong results.”

I asked him what no evidence of active disease meant. I asked if I was in remission, and he said no. I had to remember how much cancer was in my body and that it was stage 4 and metastatic. They don’t necessarily say remission, but they did say no evidence of active disease.

That didn’t mean there was no cancer left in my body, but it just means that everything that we’re doing is keeping the cancer at bay.

It was after that that I started wondering what the rest of my life was gonna look like. That’s when I started to go on Facebook groups and things like that. I tried to find other metastatic cancer patients. 

Metastasis

Metastasis to the brain

In July, I was out for a walk after work, and I started having this really weird thing go on with my ears. It was more on one side than the other, but it was like my ears needed to pop. I knew that wasn’t what it was, though.

It concerned me. It wasn’t going away. The next time I had my regular visit, my oncologist wasn’t there. I talked about it, and I felt like they just brushed it off. I paid attention to it. It didn’t go away.

The next time I saw the oncologist, I told him I was having an issue, and sure enough, I had mets in my brain. I had stereotactic radiation. It was pinpointed to the spots.

How do the brain mets affect you mentally and emotionally?

The brain stuff scares me more compared to anything else. I’ve always worked, and I wonder if this is going to eventually take that away from me.

I worry about my memory. I’m always really paying attention to that, and so far it hasn’t been an issue.

Once I went in and had my first radiation, I found out it wasn’t that big of a deal. I had a headache later on that day, and I was tired until the next day, but other than that, it wasn’t really hard.

After that, I started having an MRI every 3 or 4 months. Before, I was like, “Oh my gosh, what am I gonna do when it goes to my brain?”

Well, now I can go in and get treated with pinpointed radiation, and I know what that’s like. It’s not scary anymore. 

When I hear whole-brain radiation, that freaks me out, but I’m not to that point yet. When I do get there, I know I’m probably done working.

That’s what I gather from other people’s experiences I’ve read about. I try to not get too tied up in it. It can be pretty scary when you read how bad it can get. 

The next time I did it, it wasn’t scary anymore. You just have to go somewhere else in your mind to get you through it, and then it’s over.

It’s weird how you get used to all these things you have to do.

We do a couple of things that help a lot. We tend to plan our vacations around the time of the scans. Sometimes, we’ll go right before a scan. I might be on a 2-week cruise, and 2 days later, I’ll have a scan. Other times, we’ll schedule a trip for right after a scan. 

We do that because we figure if I get a really bad scan result and I have to change my treatment, it’d be really nice to have a break from life beforehand.

We have gone on a 2-week trip every year since my diagnosis and a bunch of little ones in between. I would rather look forward to the next trip than dread the next scan. That’s helped both of us. It’s always in the back of your mind, but that helps. 

Another thing that’s helped is control. With cancer, you’ve lost control. When I have my PET scan, I have it early in the morning and early in the week.

That way, I know I can get my scan, go to work, and that day after work, I can go pick up my results. That way, I know right then whether I need to be freaked out or let it go. 

So far, things look good, and I don’t have to worry. Same thing with my MRI results. They usually pop up on my portal the same day if I get them done early.

»MORE: Dealing with scanxiety and waiting for results

I’m optimistic, but I’m realistic. I never know what the next scan holds or where I’ll be in the next 2 years.

If I go into remission — if someone wants to say it that way — fine, but I know it’s coming back. Don’t tell someone they’re cured, because the percentage of recurrence is so great.

Anybody who tells someone that they’re cured and their cancer is 100% not coming back is a liar. They can’t stop cancer yet, and there will be a cure when they can.

Before I got sick, I don’t think I had much empathy for someone who was going through a chronic illness of their own. That included my own mother.

Once I went through chemo, and even since, I realize now that life changes drastically because of illness. I’m much more empathetic now towards people because of that. 

Do you have advice for other people who are going to lose their hair?

Your hair is nothing. It doesn’t make you who you are. It’s what’s inside that makes you who you are. Your hair does grow back, and mine has actually grown back thicker. It grows back a lot quicker than you would think.

If you’re comfortable with a wig, wear one. If not, don’t. I had baby-fine hair and used to hate that. I have a video of the night we shaved my head. I have another one where I’d been without hair for 8 weeks or so, and I said something like, “I always talked really mean about my hair.”

Now, I’m like, “Hey, whatever you want to look like, go for it, hair. Whatever you’ve got.”

Can you talk about self-advocacy?

I didn’t really advocate for myself with the first oncologist much. I did ask about my brain stuff, and he said, “No, we don’t do an MRI unless you’re having symptoms.”

Then I saw my surgeon at a follow-up, told him what he had said, and he said, “I’ll order one for you.” The radiation oncologist said the same thing. 

When my oncologist saw the results, he had a very “I told you so” attitude about it. I just said, “Yeah, it sure is nice to have peace of mind.”

I was going to worry, and then I didn’t have to because it came back clear. I was taking control of a situation that was going to keep me up at night. 

Months into it, I started thinking, “Can I fire my oncologist?” I knew I was going to be seeing him for the rest of my life. The only reason I was going to see my oncologist was because I couldn’t get in to see the other one for 8 weeks. 

I thought since I was going to be seeing him forever, I’d like to be able to see someone who cared about me and knew me. Every time my new oncologist walks in, he has something kind or helpful to say to me.

I consider him a friend. I’m a patient to him, and I understand that, but I see him as a friend. I never felt that with the first guy. I made the right choice.

»MORE: How to be a self-advocate as a patient

What advice do you have for other patients on advocating for themselves?

It’s all about how you ask questions. For example, I was on a Lupron shot. That medicine caused me so much pain in my joints. I couldn’t get down on my hands and knees to do yoga to try to stretch things out. 

It took me a while to figure out that the Lupron was the culprit. My quality of life was declining because of it. I started reading up on it and what to do.

I asked my current oncologist one day, “Can’t we just take my ovaries out so I don’t have to take the shot?”

He said, “If you had a genetic mutation, then I would say yeah, but since you don’t, no, there’s really not a point.” 

I didn’t get the answer I wanted. A while later, I was still having pain. I said, “What do we need to do for me to get my ovaries taken out?” He said, “You’ll need to do X, Y, and Z.” 

Cancer & Relationships

How do you and your husband lean on each other?

If I need to talk about something, I tell him I need to talk. He may not want to talk about it, but if I need to, I let him know I need to.

I talk, and I make sure he hears me because both of us are going through it, and that’s that.

I think it takes a while for the patient to realize that the caregiver is dealing with just as much. It might even be harder for them sometimes.

I’m the one that’s going in for everything, but he’s just as scared of losing me as I am of dying. The fact is the person that’s dying is gone, but the person that stays is the one that has to deal with everything. 

You don’t figure that part out for a while. When you realize there’s 2 sides to all the crap you’re going through, it helps put things in perspective. 

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

The other thing is when I feel sorry for myself, I think of how much worse it could be. I would see people in the chemo room who were sicker than me, younger than me, or older people would be talking about hospice. 

As soon as you have a story, somebody else somewhere already has a worse one than you. It’s a lot of wasted energy to sit there and feel sorry for yourself when it could be so much worse.

I took care of funeral arrangements and a will, which is something we had never had to think about doing, but now it’s taken care of. I don’t have to worry about it anymore. Dealing with those kinds of things and knowing now that they’re done helps, too. 

»MORE:  What kind of support cancer patients say helped the most

Being a parent with cancer

If my kids had been little and at home, I don’t know what I would’ve done. I was grateful that my kids were all out of the house. They’re all boys, and I think if they had been girls, they would’ve been more consistently involved. Whereas, with boys, they opened the door, asked questions, and then shut the door again. 

My heart goes out to women whose kids are younger. I’ve already got to see one of my kids get married. I have a grandkid. I’ve gotten to experience these things that other women might not get the chance to. My heart goes out to them. 

Last Christmas was hard because all my kids came home for the holiday. They’re all adults and have their own lives, but it worked out that they all got to be there. I was able to have all 4 boys home. 

I did every single tradition we’d ever done, and I did it on purpose because I don’t know for sure.

I was thinking, ‘Am I going to have them all home again? Am I going to feel up for it again? So, I made the most of it.

Sure enough, I heard from each one of them how much they enjoyed it. It was the little things they appreciated so much. Other than that, things are the same. They’re boys. They don’t call their mom as much as they should. 

»MORE: Parents describe how they handled cancer with their kids

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