Nikki Barclay just turned 41 when she learned she had breast cancer. “My doctor recommended I start having mammograms every year beginning at age 40. This was my second routine screening,” or so she thought. “I did not expect any issues at all, especially at my age,” she begins telling her story during The Breast of Everything podcast.
The mammogram showed suspicious-looking calcium deposits that required a biopsy. The results? Nikki had extensive DCIS (ductal carcinoma in situ), considered the earliest form of breast cancer. She didn’t feel any lumps in her breast, she didn’t feel sick, and she was so young. This was not supposed to happen to a young wife and mother of two children ages 2 and 5.
After extensive conversations with her breast surgeon, Ashley Richardson, DO, FACOS, of Comprehensive Breast Care, Nikki chose a double mastectomy. The results of her genetic test were the reason for her decision. Nikki didn’t realize how learning of her genetic mutation would benefit her as well as her family.
To hear Nikki’s story and the importance of genetic testing, listen to this The Breast of Everything episode, hosted by Dr. Ashley Richardson.
Welcome to the breast of everything podcast your trusted resource for breast health information support and encouragement. Your host today is Dr. Ashley Richardson of comprehensive breast care. Welcome.
Dr. Ashley Richardson 0:14
Welcome to the breast of everything podcast I am Dr. Asher Richardson of comprehensive breast care. Today, I'm very happy to introduce Nikki Barclay, a wife, mother of two boys and a breast cancer survivor. She is here to share her personal story in hopes of helping other women navigate their cancer journey more smoothly, and learn more about the importance of genetic testing. Nikki, thank you so much for joining me. Thanks for having me, Dr. Richardson.
So I think we should get started and discuss how you originally diagnosed or found your breast cancer because it was pretty interesting to begin with. Yes, so I'm at the end of October of 2020. I just went for a routine mammogram did not expect to have any issues whatsoever. The mammogram showed up calcium deposits. And after a biopsy, I was diagnosed with extensive DCIS.
Nikki Barclay 1:10
And from that point, I went and seen you and we talked about options there. And
we talked about since it was so extensive,
that I would need to have a mastectomy based on that. So I went from just going from a routine mammogram to your office.
Dr. Ashley Richardson 1:36
I think one of the important points is your age. Could you tell us how old you are when you went for that routine mammogram? I was 41. So you know, we often recommend mammograms to begin at age 40. And so you had had one mammogram at 40. Correct? Yes. And so this was just your second mammogram if I recall. That is correct. So like you mentioned, you were just going in for a routine mammogram age 41 expecting to kind of pop in pop out and keep going on. But unfortunately you cannot call back and like you'd mentioned there was some calcium deposits, and those looked a little bit suspicious on imaging and then underwent the biopsy. DCIS for some of our listeners that may not know is called ductal carcinoma inside too. And it's stage zero breast cancer. So it is the earliest we can find it. not considered invasive, but can turn into invasive breast cancer. So then yes, I met you in the office. And I distinctly remember the point of the conversation where I brought up mastectomy. Do you remember that? Oh, yes, I do.
And remember what happened? Would you like to share with our listeners, so we're having
Nikki Barclay 2:47
I cried a lot. At that point. It was all very overwhelming. Like I said, I didn't feel any lumps, I didn't feel sick, I didn't feel like there was anything wrong with me.
And due to it being so expensive, you did recommend you know that I had a mastectomy. At that point in time. It was just the right side. And the left side was clear. And so yeah, I do remember I cried a lot. I remember you continuously talking to my husband, he was there with me and telling him a lot of the stuff and you kept saying she's not going to remember this. So I'm telling you, and it was thankful for that because you were absolutely correct. It was so overwhelming. Yeah. And you know, I think that's one of the best things about having somebody come with you. Whether it's a spouse or a family member or a neighbor, anybody that's there's a second set of ears, because oftentimes there is a point in that conversation that I can recognize I've lost you. And obviously we never want to have to tell a patient that she may have to lose her breast. But as I was going through the details, and when we say extensive, that area of calcifications in your breast was quite large. And so the area relative to your native breast volume, just cosmetically really wouldn't be an appealing outcome. And then I led into mastectomy, and I could see that cloud just go over your face and the tears come. And at that point, I knew we weren't going to get much farther there. But eventually we did get there, right? We we spent a lot of time talking about surgical expectations and mastectomy. And can you talk a little bit about your discussion with plastic surgery for reconstruction? Yes, so at that point,
I decided to see a plastic surgeon and
I wanted to have immediate reconstruction if possible, just for the sense of
myself image I felt like at that point in time it was either one side or both. I was making that decision at that point in time and I was going back and forth. There.
And so you sent me to see a plastic surgeon. And I discussed it a lot with her. And I made the ultimate decision that I was going to have immediate reconstruction if possible.
Dr. Ashley Richardson 5:13
And when we saw for the consult, we talked a lot about the indications for genetic testing. I was so we mentioned you were 41, at the time of diagnosis. And given your diagnosis, we discussed the indications for genetic testing, and we did genetic testing at that first visit.
Can you describe your family history? Because I know a lot of patients will come into the appointments, like you said, I don't feel sick. I don't have a family history. How could this be happening to me right now? Yes, so um, my father's mother had breast cancer. And I actually found out after I was diagnosed, her sister also had breast cancer. And then my mother's sister also had breast cancer and ovarian cancer. So it was on both sides of the family.
Nikki Barclay 6:01
But not my mother, I guess, per se. So you kind of think like, super close to you, you know,
being a possibility, I never really imagined needing to be genetically tested. I guess at that point in time, I never really crossed my mind. Right. And obviously, you were taking in so much new information, not only the new diagnosis itself, the possibility of mastectomy, but then also thinking about maybe having a genetic mutation that would have implications for, you know, surgical options, as well as long term treatment plans.
Dr. Ashley Richardson 6:36
How did you and your family handle everything that was going on at the time of diagnosis, and after the console? Well, I was a complete disaster at first. And I'm extremely thankful that my husband was there with me, he's been there, from the very beginning, he is my biggest cheerleader, and has made sure that I knew that I was going to make it through it. Um, my children are young, so they didn't really fully understand. At the time of diagnosis, they were two and five. So really understanding exactly what was going on. I didn't tell them exactly so much. They were gonna watch me go through a couple surgeries. And then my extended family, my mom and my sister probably took it worse away from me, then around me, they tried to keep it together around me. And were extremely helpful with everything that I was getting ready to face. Yeah, I distinctly remember your husband at that consultant, he kept kind of making eye contact with me, like you said, I spoke a lot to him, knowing that I could tell he was going to be there for you. So I think that's been, you know, great throughout your treatment plan to have all of them by your side. And especially once we were getting underneath are underway with the treatment course we did genetic testing, and you were found to have a pathogenic mutation and carry the BRCA mutation. Yeah. How did you take that news when we talked about that, um, in a weird way, I kind of felt like,
Nikki Barclay 8:07
Ah, this is why it's happening to me, if that makes sense. Yeah.
And I didn't still, at that time, realize how important the genetic testing was going to be for not only my future, but the future of my family. Because everything was kind of a blur. It was happening so fast. I was diagnosed at the end in November, and I had had surgery by December. And I felt like I didn't really realize the how much it was going to affect me, I guess, or how much it was actually going to benefit me in a way knowing that I do have this mutation and not only benefit me, but benefit my family knowing that they could possibly have it, and they could be monitored for it as well.
Dr. Ashley Richardson 8:54
Well, I think you're bringing up a good point that I often have patients say, Well, if I don't have a mutation, why did this happen to me? So when you said, you know, when you found out that you had it, it kind of helps you make sense of it. Only five to 10% of our breast cancer patients actually carry a genetic mutation. So it's actually rather rare for those diagnosed but and the younger population, that risk is the younger population that's diagnosed, that risk is a little bit higher. And you have a sense of maybe understanding why it happens sometimes, and I don't want to put words in your mouth, right? No, you're exactly right. And then once we found out about it, then we did discuss the elevated risk for additional breast cancers down the road when you have abraca two mutation, it can increase your risk for a new tumor in either breast and so at that point, we had already been talking about a right mastectomy and you elected to go forward with a contralateral left mastectomy as well correct? Correct. Yes.
So I guess I I think it'd be really helpful to talk a little bit about how did you do after surgery so we went in for mastectomy and
sentinel node biopsy, and then you'd like you mentioned elected for breast reconstruction immediately. So could you talk a little bit about the post operative course and how you did after surgery. After surgery, it was hard, not only physically, but emotionally. It was, I would say, the emotional impact of the surgery. And the whole process surpassed the physical pain is a temporary thing in the motion, it was extremely emotional, still extremely emotional. It was an extensive surgery. And the healing process took some time, I still am almost, you know, I'm nine months, almost 10 months out, and I still have effects, you know, after effects of not only surgery, but I ended up having to have additional treatment. So
So can you talk a little bit about how did you deal with your kids at home, you know, a lot of our younger ladies that diagnosis have young children. And now you are, you know, postoperatively at home and you have a two and a five year old.
Nikki Barclay 11:06
That was the hardest part. I felt like I could injure my mom duties, I couldn't have my kids on my lap, I couldn't pick up my kids. Again, I couldn't have done it without my husband. He had to take over everything in the house and the kids and I was also my kids went away and stayed with my mom, my sister, they were there the entire time. So just so they didn't have to see me, you know, you can't have surgery and you have drains coming out of you and you're swollen and you're just not Mom, I guess. And I didn't want them to see me like that in a way. So but I also needed my kids to because I seen them, I needed them as well for my emotional journey. And so it is a hard struggle. One thing I remember you telling me in the office, and you said there is light at the end of your tunnel, I can see it you can't yet. And you were absolutely right. At that point in time. I could not see the light. And you know, it's a journey that you take to get to the end and you do each step and you do each step. And you're exactly right. There is light at the end of my tunnel. And I see it now.
Dr. Ashley Richardson 12:32
And I think you know being part of this podcast shows how far you've come. And then I mentioned that at the concert. Listen, Nicki. And a year from now You and I are going to be sitting across the coffee table having a podcast you would have kept Craig, I think and thought I was crazy. But you know, you share so many emotional things that is lost on those that aren't part of the journey or part of that close circle. Those intimate daily things what like the not being able to pick up after the kids or not being able to lift them out of the bathtub when you're in that post operative period. And that describes a lot of what you go through not just the breast cancer itself, but what it takes away from you at certain points. Yes, absolutely. But now, on the end of this, you know, you also gain a lot and you realize how strong you are you realize what you've overcome the relationship with you and your husband. I think there's a lot to be said for that.
Nikki Barclay 13:30
Yes, absolutely. Absolutely. I would have never made it through this without him if I would have never made
Dr. Ashley Richardson 13:36
it. And you kind of briefly just touched on that you needed additional treatment. So going into surgery, we knew that you had right breast ductal carcinoma inside too. Can you share a little bit about how our treatment course change after surgery?
Nikki Barclay 13:51
Yes, so after surgery during pathology, they found seven millimeters of invasive cancer that did not show up on my mammogram did not show up on my MRI, and also to have the foresight in the lymph nodes that were removed, tested positive for cancer cells. So my additional diagnosis was now off the table. And I was waiting on my ankle score to come back to see if I was going to need chemotherapy. And so my whole course of treatment from the pre app was completely different post AP so as you're healing and you get these calls, it's again so emotional, you know you're just they found it now you're gonna wait and see what they say how if you're going to need a what kind of treatment you're going to need next.
Dr. Ashley Richardson 14:47
One I think one of the things that when we sat down at that original cancer console, we kind of outline a treatment course and we say you know with DCIS there is no indication for chemotherapy, right mastectomy, likely no indication for radiation. And at the end of surgery, after we got all of your final pathology back, those initial recommendations took a curveball. And so you know, in your mind, you went into surgery thinking this is kind of the last shebang. And then after this, you know, once surgery is over, I'm good to go. And then like you mentioned, I called you with your pathology, because I never make you wait till you see me in the office and said, well, instead of just ucis, there was some invasive cancer, but a very small focus, right? You said seven millimeters, right? But then two of the lymph nodes, and so then the discussion shifted. And then chemotherapy was on the table, and radiation was on the table. So all of those emotions took a curveball. Oh, yes. Yeah. Do you remember how you felt when we talked about that?
Nikki Barclay 15:48
scared, I'm scared, because now not only was I waiting to go see oncology, you were sending me for scans, CT scans and bone scans to see is there cancer throughout my entire body? It's scary, it's emotional. And I think God that, you know, my scans came back clear. And then we waited on the onco score to come back. And that I got a call from you to tell me that my score was low. And that was probably the best call I had.
Dr. Ashley Richardson 16:29
I'm not always the bearer of bad news. But I you know, I do think it's important to outline that, you know, although we have the best laid plan, with breast cancer care, with most oncology care, those plans can take a shift and it can detour, you're in a different treatment course. And you have to be flexible, you have to be amenable to changing that treatment course. And that is hard. Believe me coming from a type a person like myself, not sticking to a routine kind of detouring off of what I have control over. That's hard. And I could certainly feel those emotions with you throughout that process. After we got that pathology back and most of your treatment was done, then we started to really delve into the braca two mutation. I know we talked about a genetic counselor, and you were able to meet with them to discuss what truly does the braca two mutation mean for you, as well as your family members? Could you touch on that a bit?
Nikki Barclay 17:19
Yeah. So with the braca, two, I have an elevated risk of also ovarian cancer, pancreatic cancer, melanoma, and I have a 50% chance of passing that on to my child, my children, um, and it also means that it came from one of my parents, so that plays in the part I have one sister, she could possibly have, she has a 50% chance, just like me that she could have it or not.
Dr. Ashley Richardson 17:51
And so then your sister was encouraged to undergo genetic testing as well as your other family members.
Nikki Barclay 17:56
Yes, so my daughter was encouraged, and my sister's test came back positive as well. So she is also braca, two positive, I was really expecting her not to be you know, a 5050 chance only one of us gets it. So we both are braca, two positive. And that puts her into she was already at an elevated risk based on my history, even without the braca two, but that puts her into a category of being monitored differently and, you know, alternating mammograms with MRIs and doing different things with her gynecologist as far as for the ovarian cancer
Dr. Ashley Richardson 18:40
Yeah, you know when once we know that you have a Brock me to mutation to elevate you into a high risk category. And part of our High Risk Screening protocols is an annual breast MRI and an annual mammogram, kind of alternating those exams every six months. The discussion also goes into prophylactic mastectomy. So now your sister is counseled about the indications for having both breasts off before a cancer diagnosis arises. So she does have options. And like you mentioned earlier, knowing a little bit more about the mutation and how it affects family members gives them an opportunity for more of a preventative approach as opposed to a reactive approach, right. And it's important to touch on like you said it could came from could have come could have came from either a family member mom or dad, a lot of folks have are misguided that it only comes from mom's side of the family, but in actuality, it can come from the mother or the father side. And you can pass it on to your children, whether they be male or female. So these are a lot of things that I counsel patients about when we see them in the office and there's been so much about your treatment, your diagnosis and then as well as the genetics that have been unique but also self helpful for our listeners that are going through something similar. Okay. Are there any other messages that you'd like to share with those listening to the podcast,
Nikki Barclay 20:00
Um, everyone get their mammograms so like I said, I didn't think twice going into that mammogram I just thought it was just a routine and I was just gonna you know the next day was Halloween and I was went home and I was sending out my stuff for Halloween didn't think twice about it and they called me that day and said, Hey, we found this if I would have never went there, um you know, who knows it would have just been continuously developing because like I said, I didn't feel lumps, I didn't feel anything like that. So
Dr. Ashley Richardson 20:36
I think that's a great point, especially given the current national pandemic You know, there are so many people right now that missed imaging last year that kind of missed appointments or preventative medicine and that is something right now that I could not stress enough so I'm so happy you brought that up.
Nikki Barclay 20:52
And I also want to say to anyone who's newly diagnosed or those going through treatment that I know it's hard, but you can do it. I went from an initial diagnosis of stage zero to finding out I was braca, two positive, opting to have a double mastectomy ending a final diagnosis of being staged to what through 33 rounds of radiation had a full hysterectomy to prevent ovarian cancer since I was bracket to positive and I am okay I did all of that in less than a year. So anyone who is having an emotional struggle right now know that you will keep fighting and days are hard but you will make it through it when I found out I work with all women at my job and I called all of them I didn't know I was going out on leave but hey, do you get your yearly mammogram and and then two of them hadn't had mammograms and they did go get mammograms because I you know was advocate telling them you have got to go do this so
Dr. Ashley Richardson 22:06
well in just by being an advocate and speaking up for other people you will help others you know and adjust time sometimes it takes that divine intervention or that subtle push for other people to really make it happen and especially right now with everything going on people need a little push
Nikki Barclay 22:21
yes I agree and with the genetic testing as well um, at first I doubted it like I wasn't really sure do I really want to do this do I really want to know um, but I am so happy that I did because I do have that opportunity to you know have my sister tested and you know she is my best friend she is now braca positive as well and if I wouldn't have got tested she wouldn't have got tested and I don't want her to have to go through what I went through
Dr. Ashley Richardson 22:57
and I know she certainly has been there by your side throughout the whole thing so she'll be going into this with a different mindset that those that may not have had a close relative experience the breast cancer treatment
Nikki Barclay 23:08
absolutely I completely agree with that because I think if I wouldn't have went through what I went through then I think if I would have tested positive I kind of you don't really think much of it I guess I don't know if that is I don't know if I would have you know that Oh, much of it, I guess um, but after going through what I went through and finding invasive cancer that didn't show up on imaging, and then having to I fortunately I didn't have to have chemotherapy but I went through 33 rounds of radiation which I still feel you know, I'm still healing from that and Jesse emotional struggle of everything that happened. I just don't want her to have to go through that.
Dr. Ashley Richardson 23:55
Yeah, I think that there's so much to be said for that. And you can certainly hear the emotion in your voice when you talk about that. You have hit so many important topics today and I think your story will certainly resonate with those with our listeners. And I am truly so thankful for you joining us on the best of everything.
Nikki Barclay 24:10
I am thankful that you have me. Thank you Dr. Richardson,
Dr. Ashley Richardson 24:14
of course. Well thank you for listening to the rest of everything. I am your host Dr. Ashley Richardson of comprehensive breast care. We want to hear from you. If you have a topic that you'd like us to talk about. We welcome your suggestions. You can send your topics to cop breast care.com that's c o MP br E a s t care calm.
You've been listening to the best of everything podcast with your host and board certified breast surgeon, Dr. Ashley Richardson of comprehensive breast care. If you have a subject you would like the surgeons to discuss, please email your suggestions online at comp breast care. com. That's co MP. br EAST ca Our e.com the doctors want to hear from you. The views thoughts and opinions shared in this podcast are intended for general education and informational purposes only, and should not be substituted for medical advice, treatment or care from your physician or healthcare provider. Always consult your healthcare provider first.
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