During her professional career, Shirley Mertz was a political science teacher and high school principal. Before her retirement, Shirley was diagnosed with metastatic breast cancer, 12 years after being diagnosed with early-stage disease. After receiving targeted treatment, Shirley experienced a durable remission. She decided in 2005 to use her skills and intellect to advocate for research to end deaths from metastatic breast cancer; to lobby for access to affordable, quality healthcare; and to empower metastatic patients to make informed healthcare decisions to have the best outcomes. In 2009, to spread knowledge about metastatic disease, Shirley organized and led a group of patients to Congress, asking for a resolution to designate October 13 as National Metastatic Breast Cancer Awareness Day. The resolution passed unanimously.
In 2013, Shirley was a founding member of the Metastatic Breast Cancer Alliance and currently serves as its chairperson. She is also president of the Metastatic Breast Cancer Network, a patient advocate member of the Translational Breast Cancer Consortium and the AURORA USA clinical study, and a member of the board of directors of the Global Advanced Breast Cancer Alliance based in Lisbon. Shirley is often invited to speak at conferences about the challenges and needs of patients. Among her numerous awards, Shirley was honored at the White House in 2011 as a Champion of Change in Breast Cancer by President Obama.
In this podcast, Shirley talks about what it’s like to live with metastatic breast cancer during the COVID-19 pandemic.
Listen to the podcast to hear Shirley discuss:
- her personal journey with breast cancer
- the ways in which the stresses of COVID-19 and metastatic breast cancer are similar
- how people with metastatic disease are coping with treatment and scan delays
Running time: 38:31
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Show Full Transcript
Jamie DePolo: Hello, thanks for listening. Our guest is Shirley Mertz, president of the Metastatic Breast Cancer Network. During her professional career, Shirley was a political science teacher and high school principal. Before her retirement, Shirley was diagnosed with metastatic breast cancer, 12 years after being diagnosed with early-stage disease. After receiving targeted treatment, Shirley experienced a durable remission.
She decided in 2005 to use her skills and intellect to advocate for research to end deaths from metastatic breast cancer; to lobby for access to affordable, quality healthcare; and to empower metastatic patients to make informed healthcare decisions to have the best outcomes. In 2009, to spread knowledge about metastatic disease, Shirley organized and led a group of patients to Congress, asking for a resolution to designate October 13 as National Metastatic Breast Cancer Awareness Day. The resolution passed unanimously.
In 2013, Shirley was a founding member of the Metastatic Breast Cancer Alliance and currently serves as its chairperson. She is also president of the Metastatic Breast Cancer Network, a patient advocate member of the Translational Breast Cancer Consortium and the Aurora USA Clinical Study, and a member of the board of directors of the Global Advanced Breast Cancer Alliance based in Lisbon.
Shirley is often invited to speak at conferences about the challenges and needs of patients. Among her numerous awards, Shirley was honored at the White House in 2011 as a Champion of Change in breast cancer by President Obama. Today, she joins us to talk about what it’s like to live with metastatic breast cancer during the COVID-19 pandemic.
Shirley, welcome to the podcast.
Shirley Mertz: Thank you so much for this opportunity.
Jamie DePolo: So, if you’re comfortable sharing, just so people get a little bit more familiar with you, could you walk us through your personal breast cancer journey?
Shirley Mertz: Yes. I welcome doing that. First of all, I think it’s important to share that I had no history of breast cancer in my family, although I had many aunts and a mother who had no history of breast cancer. I followed, in the early ‘90s, the recommendations for mammography, and I think my third mammography, calcifications showed up. So a biopsy was done, and I was told that I had early-stage breast cancer that was being driven by hormones.
So, I was offered a lumpectomy followed by radiation or I could have a mastectomy of my left breast. I gave this a lot of thought, and I decided that I wanted to be cured, so I insisted that I have a double mastectomy because I thought that would allow me the opportunity to continue to raise my two sons and live a long life. So, I was given that surgery, and 12 years passed. I was regularly checked as the time went by, but in 2003, I reported to my doctor that I was having some pains in the chest bone.
After some imaging was done, there was nothing wrong with the chest bone, but what was discovered were spots on my spine. A biopsy followed, and the pathology report showed a cancer, breast cancer that was hormone-negative. My oncologist at that time chose not to believe that the disease had changed in its biological makeup and said he would start me on anti-hormone therapy and would scan me a year later.
I was a dutiful patient. I went along with this, but 6 months in, my primary care doctor urged me to have a scan to see how the treatment was going. And when finally my oncologist agreed to that, the scan showed that my skeleton had lit up like a Christmas tree. There were spots of metastatic disease throughout the skeleton, and there were even three spots in my liver. That certainly knocked me back on my heels.
Jamie DePolo: I bet.
Shirley Mertz: It was terrible, and [the oncologist] said, “Let’s come in Monday, and we’ll start you on chemotherapy.” I, frankly, Jamie, lost confidence in that oncologist. It was difficult, because I was raised to obey and believe what the doctor says, because that’s how you get well.
Jamie DePolo: Right.
Shirley Mertz: And so I decided to go to a teaching and research institution in the Chicago area where I live, and another biopsy was done, and it confirmed that, in fact, my molecular makeup of my disease had changed to hormone-negative, and it also showed it to be HER2-positive. So, with that new biopsy, I was given a targeted therapy and oral chemotherapy, and after 10 months on this regimen, scans showed that I had gone into complete remission.
Jamie DePolo: That’s wonderful.
Shirley Mertz: I was ecstatic. In fact, it was on April 1 I got the diagnosis...
Jamie DePolo: So, you asked for confirmation, right, because…?
Shirley Mertz: Yeah, but I was told, though, very frankly, that this did not mean I was cured, and that I would continue with the targeted agent but I would be taken off the chemotherapy. So, my durable remission lasted for 9 years, and then in 2014, I did have a spot of metastasis on my hip bone, and a couple months later, one lymph node had showed up on the scan.
And in both cases, I tried something rather new, and that was called stereotactic radiation therapy, which is kind of like a surgical removal of these two sites of metastasis, but not through a knife, but through very high-dose radiation. And so, since that time, I have been very blessed to continue on my targeted treatment. My scans have been very good, and I guess the last good news to share is that in this coming July, I will have lived 17 years with metastatic disease. So, I’m really very blessed.
Jamie DePolo: Well, I am giving you a virtual high-five and round of applause, because that is wonderful news. I’m very, very happy for you.
Shirley Mertz: Well, thank you. And I just want to say that when I got this good news, I said to myself, “There has to be a reason why this happened to me.” I believe that I was really being told to do something good for other people, and because of my teaching background and my love of helping others to learn new things and put them in effect in their life, I decided to become an advocate on behalf of metastatic patients.
And there were really four things that I try to share with people that I’d like to just pass on for listeners today, and that is the importance of paying attention to a biopsy and the pathology report, because the molecular makeup or profile of metastatic breast cancer can change, and that is very important. And I must say that Breastcancer.org does a wonderful job of explaining the pathology report and different subtypes, so I would urge listeners to check your website out.
Jamie DePolo: Well, thank you.
Shirley Mertz: The other thing that my experience told me was, I share with other patients the importance of getting a second opinion. It doesn’t hurt. It may be concurrent with what you’re being told now, but if it isn’t, then that should give you pause to think about what you’re doing.
And then two other quick points. A bilateral mastectomy, if you’ve been diagnosed with breast cancer, does not guarantee you a cure, and I thought that. But what is important is what type of breast cancer you have, because some may sleep for a while, as I call it. And then they wake up, and they can be of concern or deadly.
And then finally, I think the last thing I try to share with people is the importance of staying informed about your disease, new developments, new treatments. And again, I’m not paid to say this, but Breastcancer.org — I’m a fan of your website — does a wonderful job explaining new treatments that come out and how to talk to [your] doctor. So, that’s really my advocacy story, as well as my history of my journey, as you called it, with breast cancer.
Jamie DePolo: Well, thank you for sharing that, and I will add to your emphasis on getting a second opinion, because obviously, in your case, it was so important. I sort of shudder to think what would’ve happened if you hadn’t gone and had that scan at 6 months, if you had just waited for the year to be up on a treatment that clearly wasn’t giving you any benefits.
Shirley Mertz: Right.
Jamie DePolo: That would’ve been a little scary.
Shirley Mertz: Right, and you know, a tag to that, Jamie, is that I believe that metastatic patients should not just rely on their oncologist for their medical healthcare or their healthcare. In my case, it was my primary care doctor who saw me and asked how I was doing. I shared what I was going through, and then he said, “What? He’s going to wait a year to see if your treatment is working?” And had he not intervened, I probably would’ve continued to be a dutiful patient and waited for that year scan.
And so, I think primary care doctors, internists, should be part of the healthcare team for metastatic patients.
Jamie DePolo: Yeah, that’s very important.
Since we’re kind of living in this time of COVID-19, I’ve heard you speak and say that the stressors that people are under because of COVID-19 is really similar to the stressors that people diagnosed with metastatic breast cancer, or really any metastatic cancer, are under every day. So, could you explain that a little bit further and tell us what you meant by that?
Shirley Mertz: Yes. You know, when things started to happen in February, then particularly in March in the United States, and we heard through the media that people were being diagnosed with this strange new disease, COVID-19, I think one of the similarities I saw there was that people receiving such a diagnosis didn’t understand why did they get this and then, what is this? You know, what does it mean to them to have it?
And I think that’s certainly a parallel to people who receive a metastatic breast cancer diagnosis, whether it’s de novo, meaning a woman or man receives that as their first diagnosis right out the box, so to speak, or whether they get a diagnosis like that, as I did, years after having an early-stage [diagnosis].
So, that’s one comparison. And then, as we went along and people were expecting, “Well, what’s the healthcare community going to do about this,” and they heard through the media, again, that people needed to have two things. They needed either treatments, certainly, to help the people who were diagnosed with COVID-19 and vaccines to prevent other people from getting the disease. And when I heard that desire for a treatment for COVID-19, I thought to myself, “That is such a wish, an ongoing desire of metastatic breast cancer patients who may be going through a treatment that’s working, but they know that because of the nature of the disease, metastatic breast cancer is going to find a way to develop a resistance to that treatment.”
And so they hope for the next treatment to be there, and what we’ve all discovered, whether we are worrying about COVID or worrying about metastatic breast cancer, is that treatments are not easily discovered nor are they quickly discovered. When we listen to our president have a press conference or Dr. Fauci describe the process, it’s a long process of finding an agent that might show promise and then putting it through the clinical trial studies that involve humans.
Something that we, people who have metastatic breast cancer, learn, it’s not like something that can be done in 2 months or 6 months. It takes usually 18 months, or in many cases, the treatments that I’ve had took years to develop. And so I think that’s a stress. People want an answer. They want a new treatment, and it’s just ongoing. And then, we have to also hope there will be support for this research, and I think there definitely is support for research for COVID-19.
For metastatic breast cancer, we — the community and those who have joined me as advocates — have had to really work hard to explain to our policy-makers that more money needs to go to find new treatments, and ultimately, hopefully a cure for metastatic breast cancer. And sometimes we run up against a view from policy-makers, “Well, I thought breast cancer was taken care of.” And that kind of goes back, Jamie, to in October, where, rightfully so, we celebrate those who have gone through a treatment and have been declared done with their treatment.
They’re survivors — and let’s applaud them, because that’s an arduous process — but there is a portion, nearly 154,000 of us in the United States, who can’t just be done with treatments. Our treatments are ongoing, and we need research money. So — and I guess the last point I would make — is that with an incurable [disease], we’re dealing really with two incurable diseases right now, and we all have to struggle, “Well, if I got that incurable disease, how would I handle it? How long will I live?”
I mean, we see stories every day on the news of a mother, say, who just finally, after 7 weeks or 10 weeks of being in the hospital, finally is allowed to go home and see her children. I mean, what a heart wrenching story, and for those of us who have metastatic breast cancer… You know, when I was diagnosed, my boys were 7 and 12, and I thought, “Will I ever see them graduate? Will I ever attend their marriage?”
It’s a feeling that you can tell people when you address them, as a metastatic patient to the public, which I’ve done, but I think now, people who understand what we’re going through with COVID will better understand people who are facing an incurable disease.
So, those are some of the stresses and the commonalities that I see, and hopefully things will be better for COVID with time. We will help people live longer. The current median number of years for living with metastatic breast cancer is 2 to 3. When I was diagnosed in 2003, the median was 1 to 2, and so it depends on your subtype, it depends on how you respond to your treatments, and lots of complex, and your comorbidities, of how well you do.
Jamie DePolo: Right. Right, right. Thank you for that, Shirley.
When COVID-19 caused various levels of quarantine around the country, because all the states seemed to have different rules and regulations, I know that many breast cancer surgeries, some other treatments, a lot of scans were postponed because they did not want people potentially be exposed to COVID-19 at various treatment centers.
So, now, depending on where somebody lives, things are starting to open up. I know at least in Austin, Texas, because I talked to two surgeons there, they’re starting to do surgeries again. So, can you share what you’re hearing in the metastatic community about treatments or scans resuming? What are people experiencing from your viewpoint?
Shirley Mertz: Well, first of all, I think many of us were rather shocked, as I was, in that they would receive a call either from their research nurse or their oncologist to say, “You know what, I’m going to cancel your upcoming appointment with me because of the virus. I don’t think you should come to the hospital or to where I’m located, because you’ll be waiting in a room with other people, so let’s just put that off for a while.”
And then, some of us, and I was one who was told, “Well, you know what, rather than continue your infusions —” I get an infusion every 3 weeks — I was told, “Let’s put your infusion on hold for a while.” And it was like, am I really hearing this?
Jamie DePolo: Right. Right.
Shirley Mertz: You know, it was, it was like, what? And I remember, I didn’t have anything to say on the phone, and I’m not short of words, but when it came to that, I thought, “Okay, this is my doctor. She’s telling me I need to do this, so, I’m going to listen,” but then there’s lots of worry. And then we found out that, in the case of early-stage people, people who might have had a biopsy of a lump in a breast, normally that might be removed, and then, let’s say, if they were a hormone-positive pathology, they would be given an anti-hormone agent.
We were hearing from some of our people in the community that the surgery was put off. You’re given an anti-hormone agent, but told that once things open up, we’ll then take out your lump, and that’s very nerve-wracking, and even screening mammograms were being put on hold. So, anyway, this was all the stress. And then the good news is that there have been some changes.
First of all, like in the case of appointments, many of my friends who have metastatic breast cancer have had, and I have, too, had a telemedicine appointment, where the doctor calls you at a given time and discusses how you’re doing. You can report whatever is going on, and that becomes your way of communicating. I’ve listened to a couple calls of oncologists who have used this, and they feel there’s a lot of merit to this.
And I think from the patient point of view, if you travel far — it takes me about an hour to get to my oncologist, so I'm saved that travel time, and that’s good. And so, I think in some cases, or many cases, the telemedicine appointments will continue.
My heart goes out, though, to the newly diagnosed patient who hasn’t yet established a relationship with their oncologist. Hopefully each of you grows to understand each other and your values, the doctor understands what’s important to you, and that’s really crucial when you pick out treatments and the toxicities. My heart goes out to newly diagnosed, because sometimes you need that little... if you’re hearing bad news for the first time, you need that little pat on the knee, pat on the shoulder, or looking into their eyes. I think that is missing.
So, then, to lead to your question about opening up, I live in the Chicago area, as I mentioned, and we’re still having cases being diagnosed, and we’re not at whatever that crucial point is to open up.
But even in places where they are, metastatic breast cancer patients that I have talked to are still concerned about going out and doing things that they did before, because they’re very concerned about also getting impacted by someone who might not have any symptoms. I think they call that asymptomatic. But they could get the COVID virus.
And people who are metastatic right now are giving more thought to how they want to die, when I get to the point that my disease no longer responds to treatment, and I’m told that’s all we can do, and I have to face my death. I always imagined that my death would come when I have a loved one by my side, my husband or my sons. I could hold their hand. That’s how I envisioned it, and… I’m sorry to get emotional, but it breaks my heart when I hear on television that people who, once they’re in a hospital with COVID disease, they can’t have anyone visit them. And I can’t imagine a more terrible way to pass away, to die, without being close to those that love you.
So, I guess I only bring that up to say that I’m still not — even if they opened up the shopping center near me or a restaurant that my husband and I enjoy — I think I would be hesitant to go, because I don’t want to get COVID.
And I think what I would be waiting for, and most likely other metastatic patients would agree, though I don’t pretend to talk to everybody nor can I talk to everyone, but I think we’re waiting for a treatment that really works, and most of all, a vaccine so that we can be protected against the COVID virus.
Jamie DePolo: Yeah. I completely understand what you’re saying, and that it does have to be very scary, especially if someone with metastatic disease, perhaps, is being treated with something that compromises their immune system, which would put them at higher risk of the virus. If I can be a little intrusive, have your infusions resumed yet, or are you still waiting?
Shirley Mertz: No, they have not. I’m hopeful that by the end of May they will. And the other thing, if, to be honest, is I have not had a PET scan in over 7 months.
Jamie DePolo: And that’s a long time, isn’t it? Yeah.
Shirley Mertz: That’s an enormous amount of time. I mean, normally I’m anywhere from 3 to 4 months, and so it’s been an anxious situation.
Jamie DePolo: I bet, and you have to weigh so many things, because of course you want the scan and of course you want the treatment, but of course you also don’t want to become infected with COVID. So, it’s this weighing all these various things, where you don’t have enough information to really make a completely informed decision, which must make it so frustrating and anxiety-inducing, I guess.
Shirley Mertz: Yeah, and I heard a discussion that was led by Dr. Eric Winer, who I have great respect for, he’s a champion of metastatic breast cancer patients, in my view. He said the sad thing is that patients are associating hospitals with disease. We may not like the hospital, but we usually think of the hospital as a place either to get our infusions, our scans, or if we had to go in for some type of procedure, you know, all of this leads to hopefully a better outcome for us.
Jamie DePolo: Right, a place of hope.
Shirley Mertz: A place of hope. And so, it’s very difficult. We have to change our mindset, and yet that’s going to be a slow process.
Jamie DePolo: Yeah. Now, not to sort of stay on a somewhat depressing note, but I have friends who have metastatic disease and have passed away, and I know they talked about living for specific events like a wedding, a graduation, the birth of a grandchild. But now, those events aren’t happening, because people can’t gather. I guess they’re still happening in some cases, but not quite happening in the same way.
Shirley Mertz: Right.
Jamie DePolo: And so, from your perspective, how are people with metastatic disease coping with that? Are they finding ways to connect and live for these hopeful things?
Shirley Mertz: I think they always have tried to find ways, even before the virus occurred, which makes this all so much more complex. It’s two ways. I wanted so badly to see my sons graduate from high school, and I thought that would be an amazing accomplishment if I could, because I think I mentioned, they were 7 and 12 when I got my metastatic diagnosis. So, I was, “Okay, I’m hopeful my treatments will work,” but then I said to myself, “But what if they don’t?”
And one thing that I thought I would do is to write them something about how proud I would be that they graduated from school, and what it meant, what I hope it meant to them, and what it meant to me, and to put that away, and then, if I wasn’t here, someone would give that to them. I think in many ways, patients look to either writing a letter or making a recording of a message. Those are two things that, in some ways, are very long-lasting.
They probably, to me, come as close as you can to being there, in the chair. But then, when I see how people — I saw a lady who was in a nursing home, she didn’t have metastatic disease, but her granddaughter was getting married. And through the window — maybe you saw this on television — but through the window of the nursing home where she was, her granddaughter came in her wedding dress, with her new husband, and they touched the glass together.
So, I mean, people do find ways. But all we can do when we have an incurable disease, I believe, though it’s not always easy to do, is to live in the moment, to make every day the best that we can. There are times when I resort to awful-izing, as I call it…
Jamie DePolo: What is that?
Shirley Mertz: Okay, well, awful-izing, like right now, I haven’t had a scan in 7 months, and sometimes I think, “Oh my, this could be really bad,” because it’s been so long. You know, what if something is growing, and when you have metastatic disease, things do not always impact you physically. You could have something growing in your liver, and you don’t even know it, depends where it is.
Jamie DePolo: Right.
Shirley Mertz: But then, if I let myself go down that road of thinking awful about whatever could take place, I have to punch myself out of that, and say, “You can’t do this, because it doesn’t get you anywhere, and it robs you of the time that you have each day to do something positive, or to do something that you enjoy, talk to someone that you value.” I get great satisfaction out of my advocacy work, and I think that’s part of my background as a teacher. My motto with my students was that knowledge is power, and I still use that with the women I meet, that their knowledge is power, and you need to know about your subtype. You need to know about what new treatments are coming, and keep your doctor informed of how you’re doing.
I don’t know how soon this will all change, but I think we just have to be creative and try to leave a lasting legacy of some kind, a memory — handwritten better than typed, is my motto, because I think really, when you get a handwritten note, that part of the person is right there, that cursive or printing, as opposed to something that’s just typed. I just think there’s a big difference.
Jamie DePolo: No, I agree. I agree. Shirley, finally, to wrap up, we did talk about the country opening up a little bit, but do you have any advice as things become more available for people with metastatic disease? Perhaps if they’re fearful or really anxious, even in your case,say your doctor called and said, “We’re going to restart up your scans, we’re going to restart up your infusions,” but there’s still no vaccine, and there’s still no real treatment for COVID.
So, do you have any advice for people on how maybe to think positively about that, and maybe lessen that anxiety?
Shirley Mertz: Thinking positive is good for the mind, but I’m also a believer in the action.And I think, still, wear a mask. I believe that is very important. Wash your hands regularly. When I go grocery shopping, I do that once a week, I wear plastic gloves as well as my mask. And while I like to interact with people, I feel like I’m a friendly person, I try not to do a whole lot of that, and if I’ve got to talk to someone, I do maintain the distance.
Now, this is kind of a mundane thing to talk about, but my hair is getting long, and it needs a cut, and then if I really want to expose myself, my hair needs another color job, okay? My roots are showing. So my beautician did call me and said, “We think that we’re going to open up in June. Would you like an appointment?” So, okay, I set a tentative appointment, but I did ask my beautician, “What steps are you taking to protect yourself and to protect me?”
So, what I’m saying there is that if you decide to go somewhere, use your head and think about what can you do to protect yourself, and then what is the, say, restaurant doing to protect its visitors or its clients? And then, if it doesn’t sound really good, then put it off for a little longer.
I’m confident that with time, it may take another 6, 9 months, but we will get through this. I’ve read stories about the 1918 pandemic with the flu. My mother was born in 1918, and her family got through that. So, I think we’re hardy people, and we just have to use our heads and support science.
And then the other thing, one thing I could’ve talked about is the importance of following treatments that are really scientifically based, like not believing that you can put bleach on your skin and that’s going to take away any COVID-19 that you have in your body.
Jamie DePolo: Oh my gosh, yes.
Shirley Mertz: In metastatic disease, there have been women who’ve said, “Well, I’ve read that if I consume lots of supplements,” whatever that supplement might be, that’s alternative medicine. I believe in following standard medicine and maybe some use of complementary things — you know, yoga, meditation, those kinds of things, prayer.
Those kinds of things can be very supportive to a metastatic patient. So, I think I’ve kind of gone around the block here, but a lot of things started flooding my mind!
Jamie DePolo: Yeah, no, Shirley, thank you so much. From the people I’ve talked to — and granted, it hasn’t been hundreds, but just a few — they’re really kind of struggling with balancing, “Okay, I need this treatment, but I’m also a little afraid to go out because I don’t know what other people are doing. I know what I’m doing,and I know that my treatment center is doing things, but I don’t know about the other people in there, and that’s what’s concerning me.” So, that’s always hard, because you can’t control what other people do.
Shirley Mertz: There’s nothing wrong with asking your oncologist, or, when you do schedule that scan, to say to the department where you make that appointment, “What are you folks doing to protect me when I come for this PET scan, or this MRI,” or whatever it might be. And I think reputable places, cancer centers, will share, “We’re cleaning equipment. We will have you in a room where there won’t be other people,” whatever that might be. I think it’s fair to ask, so that you can kind of calm yourself, because living with the anxiety day by day is not good for anyone, and certainly not for people who are dealing with a very complex disease.
Jamie DePolo: Absolutely. Shirley, thank you so much for sharing everything.
Shirley Mertz: Thank you.
Jamie DePolo: It’s been so, so enlightening and so informative. I really appreciate your time.
Shirley Mertz: Well, I can’t tell you how much I appreciate the opportunity to speak with you, and keep up the good work.
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