October: Breast Cancer Awareness Month

Vicki:

Welcome to an HMC HealthWorks podcast.

Vicki:

October is Breast Cancer Awareness month. Breast cancer is the most common type of cancer in American women, with the exception of skin cancer, and it accounts for one in three cancers diagnosed in women. Men can develop breast cancer as well, though it is much less common than women.

Vicki:

Today, I’m pleased that we are joined by Kate Deliso. She’s a breast cancer survivor, and Kate is the Chief of Vision Rehabilitation and Director of Externships at Massachusetts College of Pharmacy and Health Sciences in the School of Optometry.

Vicki:

So Kate, we’re so pleased to have you here to join us today.

Kate:

Thank you so much for having me, it’s my pleasure.

Vicki:

So when we were planning this month’s podcast, I wanted to reach out to you because I had been made aware of your story and experience with breast cancer, actually through a mutual friend of ours, and I remember being a bit surprised because of your age at the time I had heard about your diagnosis and treatment. And personally, I do have friends and family members who had breast cancer and most are survivors, but, unfortunately a few lost their battle with breast cancer. But the women I’m familiar with had breast cancer were most often 50 years or older, and as in my mom’s own case, she was in her seventies.

Vicki:

So I wanted to start by asking you, when were you diagnosed and at what age?

Kate:

Yeah, so I was diagnosed three years ago on August 7th, 2017. I was 35 years old, and it certainly is more common in women who are older and exponentially more common in women who are over 50 and 60 years old.

Kate:

So I think being 35 and diagnosed, it was a lot more difficult for me to find support and find women my age who were diagnosed, and almost more difficult to get diagnosed early anyway, because I was so young, they were just, doctors have a tendency to say, you’re so young, you’re so young, so it’s probably something else.

Vicki:

That’s interesting because I know that the American Cancer Society recommends the following early detection screenings for women: basically they say it’s optional beginning at age 40, and annual for 45 to 54 years, and then when you get a bit older, like me, they’ll say every two years if you’re 55, unless for some reason you push to stick to the early screenings. I know that they will go ahead sometimes and do MRIs and mammograms for some women who are identified as high risk.

Vicki:

But I think that it’s interesting because when you talk about age, what I just said for their guidelines, it says, optional beginning at age 40. And as you said, it seems like under age 40 there’s not guidelines and you

Kate:

Yeah.

Vicki:

…want an age where, like you said that they weren’t looking for it. So-

Kate:

Yeah.

Vicki:

…it probably was a little bit more of a surprise to you too, because of your young age, as you said, and it made me think about… We had not talked about this specifically, I knew a little bit about your background, but I was curious what stage were you diagnosed with?

Kate:

So initially, I had found a lump about four months prior to my diagnosis. And then the process, I was going through some medical issues where I was trying to figure out how I could get an IUD put in and some conception issues. And I really was having some hormonal changes, and within four months that lump that I had found sort of quadrupled in size, and I knew something was kind of wrong. And when I came in to… Because of my young age, it wasn’t a priority on the scheduling for imaging. And so it ended up being a few months later until I was diagnosed.

Kate:

And I think in hindsight, had I known what I know now about lumps and self-diagnosing, feeling for abnormal lumps, bumps, I probably would’ve gone in much earlier. But just as a young woman, I wasn’t necessarily aware of the risks, and not knowing my family history. I’m adopted, and so I didn’t really have that question of knowing someone in my family who had been diagnosed.

Kate:

So I was diagnosed initially at stage 2A and then I had some further imaging, which revealed another very large tumor, and so that changed my diagnosis to stage 3B. I think breast cancer is treatable and it’s treatable in every stage, but it’s certainly better if it’s diagnosed early.

Kate:

But the truth is cancer is cancer, and when you hear the diagnosis at stage 0 or stage 3, or even stage 4, some women are diagnosed at my age and even later, it’s definitely a surprise. I think anyone, even if you have a family history.

Vicki:

Yeah, that definitely makes sense, and you really touched upon something that was the next thing I was going to ask you about. I was going to talk to you about your initial detection, but you did a nice explanation in terms of that it was self-find, you found it yourself, which probably really reinforces the importance of self exams-

Kate:

Absolutely.

Vicki:

…but also you just emphasized to me, the message to send everyone is: even if you think, okay, I’m too young for this or this doesn’t seem like a lot, you’ve said trust your gut. Go ask and get some help, so-

Kate:

Absolutely. I like to say that cancer doesn’t discriminate, and it’s true. I’ve spoken to women, I’ve had the opportunity now… And that’s the thing is that the cancer has given me opportunities that I would have never had and, really some opportunities to seek meaning in things that I would have not searched for meaning in, you know?

Kate:

And so I’ve met some really wonderful people along the way, and the commonality is that cancer doesn’t discriminate. It doesn’t care what color your skin is, how tall you are, it doesn’t care what color your hair is, if you’re adopted, if you’re not adopted, and it doesn’t care how old you are. And so I think just trusting your gut is huge, and knowing the signs and symptoms really of any commonality, common cancer and common finding in cancer in women is huge.

Kate:

For me, it was a lump, but for some it’s discharge, for some it’s changes in shape, for some, they notice a lump in their armpit in one of the lymph nodes. My tumor, the one that I felt, was about the size of a pea, and it did not move. And that’s very important when you’re feeling around for those things. And the American Cancer Society has a really wonderful explanation of some pictures of dimpling and what to look for and what’s abnormal.

Vicki:

Yeah. I thought I’ve always found them to be a great resource for all types of cancers. And it’s interesting because when you were saying it doesn’t matter what stage a person finds themselves in, it’s still cancer, and when it first hits you… I can’t imagine because I haven’t gone through it, that there’s a lot of emotions-

Kate:

Yeah.

Vicki:

Do you mind sharing with us maybe some of the things that you felt?

Kate:

Yeah.

Vicki:

We’d love to have our folks hear this. So if they’re in that position that they understand, or if they have a friend that’s in that position, they’ll understand how to respond and help them.

Kate:

Yeah, of course. For me, I was and am still a young mom, and for me the first thought was that I didn’t want my children to grow up without a mother. And that’s kind of the first place that we all are inclined to go is to the worst possible complication that could happen, is that I would lose my life.

Kate:

But the truth is, this is a treatable cancer, and I’m not alone. And I found a lot of support and I found a lot of, just, needed resources from going online and from reaching out to other survivors. And the network of survivors that I just tapped into really, really helped me to feel like I wasn’t alone, and to recognize that I wasn’t alone. Because initially when I went into the cancer center, I was definitely the youngest one, and I still feel like the youngest one.

Kate:

But I do like to say that when you’re diagnosed with something like this, you suddenly realize that you’re a part of a club that nobody really wants to be a part of, but everybody’s so thankful that it exists. And I certainly am really, really thankful that the group of women that I’ve gotten to know through this diagnosis has been there to support me, and that I’ve been able to support some women who have come diagnosed after me. Just last week, I had one of my best friends, she was in my wedding, 37 years old, diagnosed with breast cancer last week. And so I’ve had the opportunity… She flew up here for me three years ago when I was undergoing chemo, and now it’s my turn to get to be a support system for her. So I think it’s really, really important to recognize that you’re not alone, but to reach out and seek out when you feel like that.

Kate:

We were so blessed to have a connection of friends out where we are that really rallied around us and provided meals. And I think sharing the fear with my most intimate circle was important to share how I was feeling and really not try to just tell everyone I was okay, because the truth is you’re never okay when you hear that. It’s just something that you don’t want to go through, but if you have to, you will. And so I think recognizing that it’s okay not to be okay is huge.

Vicki:

That’s really, that’s such important advice because I know when my mom, although she was much older, got her diagnosis and it happened to her twice and she ultimately did have a mastectomy, but it was the same thing. She said that, “I’m really scared and I’m scared for all these reasons,” and she said she felt like it was just a relief to not try to have to put on a brave face.

Kate:

Yeah.

Vicki:

She said, “I want to get well, but I want you to know that I am scared.”

Kate:

Yeah.

Vicki:

And you just hit on a really important point. I think with all types of diseases and cancers, or any physical frailty or problem someone’s having is, you just described really great support network.

Kate:

Mm-hmm (affirmative).

Vicki:

And from what I know about you and from what you’ve just said, it’s very full with friends, with family, but also women that you now have a very strong relationship with because of the shared experience of trying to support each other during the breast cancer, because even with friends and family supporting you, when they’re not actually going through the same thing, there is the need to have someone that… As you said, you don’t want to be a member of that club-

Kate:

Yeah.

Vicki:

But if you are, it’s definitely someone that has been in your shoes or in them.

Kate:

Definitely.

Vicki:

One thing that I was thinking about is, you talked about the importance of a support network. For people who don’t have that, say they don’t have friends and family nearby, or they’re new to an area, or for whatever reasons they don’t find themselves in a position where they feel there’s people that they know personally that are able to help them at a time that they really need it, how does one overcome that? Do you have advice as to where they can find it? Or it sounds like you have some great resources.

Kate:

Yeah.

Vicki:

What would those be?

Kate:

Yeah, so I was a part of a network out here. The Young Survivors Coalition is a larger network, a national network, but more locally, I really always suggest that women reach out first to the cancer center where they’re receiving treatment. Women and men reach out because… I’m outside of Boston and the network of people that are in the city obviously is going to be larger, but we’re able to tap into those resources as well. So when they have young survivor events, we’re able to do that.

Kate:

There are national events, though. There’s an organization called The Breasties that meets, they’ve started to do online meetings, but I also started attending… Initially I was really kind of, I don’t want to say I didn’t want to attend support groups but I felt like I was dealing with it okay.

Kate:

And then when I actually attended one, I realized that that’s not what it’s about. It’s really just hearing other women’s stories and being there for each other and getting the opportunity to tell someone else that it’s going to be okay. Because whether we like to admit it or not, when you say it, you’re more likely to believe it.

Kate:

So I really found an online community as well, for those who are engaged in social media, there are huge online platforms. Just searching hashtags helped me a lot, #youngbreastcancersurvivor, or #breastcancerhairloss, things like that. That’s where I discovered all of the resources for wigs, I ended up connecting with a foundation called 5 Under 40, and I ended up going to New York and getting a custom wig made, and it was just really pampered and loved on, and that was an amazing resource for me.

Kate:

There are so many organizations that you don’t know about until you go out looking. My advice would be to not stay still, this is your opportunity for personal growth because the world kind of stops when you’re diagnosed and it’s easy to get stuck there. So you just have to keep going and you have to push yourself in different directions that you would normally not do, because you can’t stay there. You can’t go stay there because then you spiral down usually-

Vicki:

Right.

Kate:

…and it’s easy to get in that situation where you feel alone and where you start to really think about the worst scenarios. And so for me, focusing on my blessings and what was positive in my life really, really helped.

Vicki:

It’s really a good point that you talked about seeking out resources, and I noticed two things that I’m going to point out.

Vicki:

One, you just mentioned about an online community. And also, I know with being amidst COVID, there’s been a lot of interruption for folks for in-person support groups or just the types of interactions. And I think it’s important that you pointed out how much there is for folks, even if you can’t, at that moment, be in person.

Kate:

Absolutely.

Vicki:

So I like that you mentioned that because that is something that people, if you can’t physically go somewhere, doesn’t mean that you don’t have a connection and there’s not resources.

Vicki:

And when you had talked about the group in terms of the wig, we just did in our October newsletter which is coming out, a small piece about hair loss and, and just how people just finding something to help themselves or deciding how they’re going to deal with it, whether it’s a wig, not a wig, whatever their decisions are, that that was just a big piece of comfort for them.

Kate:

Yeah.

Vicki:

And the people we spoke with said exactly what you said, that talking to others who are going through it, it helped guide them.

Kate:

Yeah. I had a lot of fun with my wigs. I had a lot of fun. I had pink care and purple hair, and I went through a lot of really fun hairstyles as well in the process of kind of growing my hair out. I had really long brown hair, really long brown hair, prior to my diagnosis. And I ended up with a blonde pixie cut, blonde Mohawk in the end.

Vicki:

That’s good because you kept it colorful, and-

Kate:

Yeah.

Vicki:

…on days you’re feeling down, that would lift your spirits.

Vicki:

The other thing I wanted to ask you about, so I wanted to discuss treatment options. I know from my mom and my other friends who’ve battled breast cancer, that breast cancer treatments typically have two main goals: they want to destroy as much of the cancer as possible, and then also to prevent tumors from returning. And some treatments remove or destroy the disease in the breast, and then the nearby tissues or, as in my mom’s case, the lymph nodes as well. And I know some of the treatments include surgery, radiation, chemotherapy, the targeted therapy, which the person that I knew that did it basically told me it was prompting the body’s immune system to help destroy the cancer. But she did have an anomaly, a little bit of different type of breast cancer, so I don’t know if that’s something that works for everyone. I also know that sometimes they’re using hormone therapy to prevent hormones from fueling the growth.

Kate:

Yep.

Vicki:

Most of the folks I knew typically had chemotherapy in that targeted type of treatment and augmented things to kill cancer cells that were left behind by the other treatments.

Kate:

Yeah.

Vicki:

So tell me a little bit about your treatment process.

Kate:

Yes. So my treatment was… I didn’t necessarily have a choice in some of the treatment, and I’ll explain that, but the advancements in research… And this is why research is so important because the advancements in research have found that women who have very early stage breast cancer, they have equal results if they do a mastectomy and no radiation, or a lumpectomy and radiation following. Many people that have breast cancer in the early stages do not have to have chemotherapy.

Kate:

And so that’s something that without research, we wouldn’t know. And to be honest with you, going through chemotherapy left me with some changes in my body that I hopefully won’t be dealing with forever, but I certainly am dealing with now. And so if we can forego that part of the treatment and be equally as effective, it’s a huge advancement. And so I will say that that has come out from the later studies.

Kate:

Unfortunately with the size of the growth that I had and the multiple places in the breast and different types of cancer, I did have to have chemotherapy first, and then a double mastectomy with radiation afterward. And the radiation is really, they say it’s kind of sweeping up the crumbs, getting everything that’s the very microscopic cancer cells that may be… I had it in my lymph nodes as well. So that’s really part of the reason that I had radiation. And then because my cancer was hormone driven, I also had an ovariectomy, so I had my ovaries taken out as well, my fallopian tubes as well.

Kate:

And then for 10 years, I’ll be on a medication and that medication, it’s called an aromatase inhibitor, and everybody is kind of different as to what they’re on, whether it be Tamoxifen, and that kind of depends on whether your peri- menopausal, pre- or post- menopausal, and no treatment is the same for everyone, I should say, even the chemotherapies that we get are all a little different. And the targeted immunotherapies now, some of the studies that are coming out that those are really, really very effective.

Kate:

And so just when I think that the cancer therapies can’t get any more advanced, they do. And that’s the about the research, yeah. It’s really, really… I’m really pleased with where cancer research is going.

Kate:

I would say that the one thing that lacks though in cancer research, is research for metastatic disease. The funds that are dedicated toward cancer research, many of them are not dedicated toward stage 4 metastatic disease. And so I often recommend that people, if they want to make a huge difference in metastatic research, that they go to METAvivor and they look there because the funds there go directly toward stage 4 research.

Vicki:

That’s a great observation on-

Kate:

Yeah.

Vicki:

…your part and a good recommendation. I wanted to ask you a personal question because one of the other things that we did just a little blurb on in our newsletter, it was a book or a guide provided by the American Cancer Society to give people some direction with talking to children. And I know that you’re a mother and I just wanted to ask you a little bit about how you were able to communicate with your children and your family. And do you have advice for others as how to approach that for comfort for everyone, for the kids, but also for you, or just, what was your experience and what would you recommend?

Kate:

So, when I was going through cancer treatment, I had a social worker approach me and wanted to talk to me a little bit about it. And I really had already sort of made up my mind that we were going to be very honest with our kids. We weren’t going to try to tell them that anything other than the truth. And the truth is that it’s nothing that Mommy did, it’s nothing that you did, because oftentimes kids will go there, they’ll say, “did I do something?”

Kate:

And a lot of it has to do with physical change for kids. They don’t necessarily know that cancer is something that can kill you, but they do know that you’ve lost your hair, and so addressing what’s in front of them rather than answering questions that they may not have yet was huge. So we tried to focus on sort of what was in front of them.

Kate:

I did have a friend that was going through treatment right around the same time that I was, who actually ended up writing a book. She has written a few books now for kids dealing with changes in their lives, and so now I recommend that for any of my friends with children. And it’s What to Do When Someone You Love Has Cancer. The first book that she wrote was called Cancer Party, and it talks about how the cancer cells don’t want to be alone, and so they start to replicate and they create what’s called a cancer party.

Kate:

And so simplifying the words and the concepts was really huge for us in dealing with… My son was very, very particular in the questions that he would have, and I think now, as we’ve gone further out and as they hear about people who have passed away and the cause was from cancer, I think that they ask me more now probably than they did when I was going through it. “I’m so glad that you didn’t die,” or, “what if you had died,” things like that, and I just have to keep reminding them that we have blessings all around us, and so not to waste a day because we never know what’s going to happen. And so I think just reminding kids of a beauty that’s around us and the good things around us can kind of shift attention, and I think that goes for us too.

Vicki:

Yeah, yeah. You’re definitely right about that. And it’s such a positive thing for you to be really candid and say, “keep it age appropriate, don’t sugar coat it, but also be able to comfort them.” And obviously you all achieved at the fact that they’re reflecting back-

Kate:

Mm-hmm (affirmative).

Vicki:

…to see and feel safe and glad [inaudible 00:26:42] for you and your family but also, like-

Kate:

Yeah.

Vicki:

…you said, to not get consumed by it.

Kate:

Right.

Vicki:

So Kate, I really wanted to thank you so much for sharing your personal experience with-

Kate:

Yeah.

Vicki:

…breast cancer and some of-

Kate:

Thank you.

Vicki:

…your thoughts and advice. But one thing I’d like to close with is, if there was one message that you could give to people about breast cancer or the importance of mammograms, just anything that would be your final thought and takeaway for us, what would that be?

Kate:

My advice would be not to put it off. I can’t tell you the number of women, close, close women that I know to my family and close to me that said, “I’m going to go schedule my mammogram because I’ve been putting it off for way too long. I’ve been putting it off, because you know it’s just so uncomfortable, and I don’t… The unpleasantry of going is why I’ve been avoiding it.”

Kate:

And I would just say, don’t put it off anymore, there’s really no reason. Be proactive about your health, if there’s something that’s not right, seek guidance because waiting another day and pushing it off your to-do list doesn’t do anything but prolong your anxiety. And so just deal with it, and if it’s nothing, then it’s nothing, but you would want to know. You would want to know earlier.

Vicki:

Wise words, very wise words, because the discomfort of a mammogram, which every woman knows that-

Kate:

Mm-hmm (affirmative).

Vicki:

…is just a small bit of discomfort to have the comfort-

Kate:

Right.

Vicki:

…of knowing that you’re well, or also if you’re not, to be able to address the problem. And as you said, get on it quickly.

Kate:

Exactly.

Vicki:

So I wanted to once again thank you, and wish you and your family the best. And I’ll definitely have you check in with us another time if you’ll agree to do that-

Kate:

Of course.

Vicki:

…because of the uniqueness of your situation with being younger and because of the adjunct therapies that you’re doing now, I would like to check in with you in the future and see how you’re doing and how you’re progressing.

Kate:

Yeah, of course, thank you for having me.

Vicki:

That that would mean a lot to us. We’re really glad.

Vicki:

I also want to remind all of our listeners to stay tuned for future HMC HealthWorks podcasts, and you can go to HMCHealthWorks.com for a lot more information on breast cancer and other physical and mental wellness information.

Vicki:

Stay healthy, happy, and safe.