This week on Real Pink we are hosting daily conversations about breast cancer that hides in the shadows: metastatic breast cancer (MBC).
In the US alone, MBC is expected to kill 42,000 people. This special episode, featuring Lynda Weatherby, is part of National Breast Cancer Awareness Month.
Lynda Weatherby is living with metastatic breast cancer. Lynda is the CoFounder/CoChair of NWMBC Conference and is a wife, mom of 2, and UW Huskies fan.
Adam [00:00] Metastatic breast cancer symptoms depend on the part of the body to which the cancer has spread, but sometimes metastatic disease may not cause detectable symptoms. It’s time we talked about breast cancer that hides in the shadows. Metastatic breast cancer is the last stage of breast cancer, when it has spread to other parts of the body. Joining us today to discuss metastatic breast cancer and her own personal journey is Lynda Weatherby. Lynda, welcome to the show.
Lynda [00:27] Hi Adam. Thanks for having me.
Adam [00:28] Well I’m really excited to talk to you. I know we’ve got a lot of things to share, so let’s start off by just tell me a little bit about your story.
Lynda [00:37] Well, I am an early stage breast cancer patient who had a recurrence, a delayed recurrence of metastatic breast cancer. That’s it in a nutshell. I was a 36 year old mom with a six year old and a three year old when I was diagnosed as stage zero breast cancer, no family history, nothing that we knew of that would have alerted me to a risk of breast cancer. I think it developed sort of after pregnancy and childbirth and I was told that I needed to have a bilateral mastectomy or a mastectomy that I opted to turn into a bilateral mastectomy after a summer of trying to figure out what else I might need to do. I did not do chemo or radiation because I was told I had a 2 to 3% risk of recurrence and the risk of doing chemo sort of outweighed the benefit.
[01:33] So I, I got through that summer, did the surgery and sort of went on my way, raised my kids, really put breast cancer behind me and 12 years later as my then kindergartner was graduating from high school, this breast cancer with a two to 3% risk of recurrence, roared back with life threatening tumors. I had metasticies all through my skeleton. I actually had a broken rib from metastasis. It had spread to my brain and it had also spread to a facial nerve that runs behind the cheekbone. It’s called the Trigeminal Nerve. And so far, I might be one of the only people out there who’s had breast cancer come back on her face. I joke, but it was really the most painful and threatening tumor because it was beginning to infiltrate the actual nerve and from there it could have gone into my central nervous system and that would have been very rapid fatality. So it was a pretty scary time and I’ve summarized it there. The lead up to it was not brief. It was a very long, lots of signs and symptoms along the way that I did not understand. I kind of wanted to share today of what I wish I had known as an early stage patient because it would have potentially, I could have potentially gotten in sooner if I had understood what was happening. And that would have really, really changed what I’m dealing with now.
Adam [03:18] Wow. That that’s a lot. And you said 12 years in between and a 2 to 3% likelihood of recurrence. Right?
Lynda [03:27] That’s what I was told at the time. When you speed forward to 2019, we know a whole lot more about these sort of cells that escape. And there’s great research going on now that is looking at a stage zero patient like me and what could possibly set them up for recurrence. And researchers are looking at how even a single cell can escape and be dormant for a period of time in the bone marrow and then wake up after a certain set of circumstances happens. So I know they’re looking at it. I’m sure the answers are on the way, but I don’t follow any of the textbook cases. My doctors kinda, laughed with me all the time that I just break all the rules. One thing that I’ve done through my journey with being metastatic is I’ve sought out other patients. I’ve gotten to meet a lot of other metastatic patients through metastatic organizations and I’d have to say, I might not follow the textbook, but I am not unique in the world of metastatic advocates. There’s a lot of people like me who have a similar kind of story.
Adam [04:41] Yeah. I think, I think a lot of times we like to think that like there’s this path that that always happens and I think the reality is that the path is an average, but that it’s always an individual journey. And it sounds like it’s been quite the journey for you. Now before we continue to dig in, let’s just stop for a moment and let’s just sort of define metastatic breast cancer. So just kind of give us that quick definition if you would.
Lynda [05:06] Metastatic breast cancer is the condition where cells from the original site of cancer in the breast somehow escape and migrate usually through the blood and lymph system, to other sites in the body. And the most common places where cells can go and start to set up housekeeping are in the bone, the liver, the lung, and then the brain. There’s three main types or sub sub types of breast cancer right now they are drilling down on those and some day there may be many, many subtypes as they learn more about them. But for now there’s basically three. And so it does depend on what subtype you have, where it might tend to go. My case is so unique, I have brain Mets, but type of the subtype that I have is oestrogen positive breast cancer. And that rarely goes to the brain, but mine went brain.
Adam [06:04] You’re! breaking the rules!
Lynda [06:05] Breaking the rules, yup.
Adam [06:08] So sometimes the recurrence of breast cancer may not have any symptoms and even when it’s spread to other parts of the body, but what are the most common signs and symptoms of metastatic breast cancer that somebody can be looking out for?
Lynda [06:24] Well, definitely anything that hurts. Either if you can kind of envision what bone pain would feel like. I mean, before you’ve had metastasis people really don’t understand bone pain, I think, but you know it when you have it. I had a long period with bone pain that I just did not understand. I would have a hip that hurt after I’d go running. And that had been the case for several years. And I had progressed, I had aged into my forties by that point. And just kind of thought, well, you know, maybe I should back off of the running. But to me, I know now that that was the very beginning of that metastatic growth and because later on we learned that that’s where my biopsy was. So it was absolutely involved. If I could just inject some of the personal story here, I think it’ll illuminate it for people.
[07:19] One of the first signs that something was really off was fatigue as the recurrence was sort of gathering steam. That was my son’s senior year in high school. And everybody who’s got high schoolers or teenagers knows how busy you are. I mean we were just doing sports and college applications and all of this stuff and I just basically put off all these signs of, “Gosh, I just don’t feel like myself. I really, Oh my gosh, I’m so tired”. And my husband finally said to me at one point before I was diagnosed, he said, you know, you just use the word exhausted all the time, what is going on? And I wasn’t aware of it, but he caught it. And that was one of the early warning signs. I have a sort of an emotional thing to share here where I remember my, my diagnosis was in May all that Fall I had been having this, you know, fatigue factor in January.
[08:19] I was putting some Christmas things away and I moved a chair and I kind of twerked my rib cage and my rib just lit up like so painful. And I thought, what the heck did I do? Oh my gosh. You know, I was used to moving furniture all the time. Right, so that was, that was a sight of metastatic growth and it just didn’t quite feel. And I actually in January that month, I had two physicals. I had my Well Check visit at the cancer center where I had been cared for in 2001 I was not being seen by an oncologist anymore, but I was in the wellness clinic there for all my just routine things. And I told them, “God, my rib really hurts. And oh, I did yoga the other day and man, everything just on my back just hurts.” And the provider, no offense to the provider, but you know, she said, well, how old are you now?
[09:16] You know, you’re 48 and things start to hurt. You know, there’s these muscles in between the ribs that they don’t feel the same at 48 as they do at 32 you know, and then I also had my physical with an internist and I told her, and she basically said the same thing. So I have a particular passion around helping women understand, and men that if you have had a breast cancer diagnosis and something hurts, you need to trigger a set of actions and investigate and not just assume that it’s nothing. And hopefully it is nothing for the vast majority it will be. But for a significant percentage, it really may be something.
Adam [10:01] And, and you know, I’ve talked to a lot of people that talk about how, because you know, it’s human nature to say, “Oh yeah, you know, your hip hurts. Well, you know, you’re, you’re getting older and you’re running. Of course you’re having…” But you know, it’s just common for us to think that way. And I’ve talked to several people that have said, “You’ve got to know yourself, you’ve got to know your body, and then you’ve got to be your own advocate” because you know yourself and other people don’t. And so don’t let them convince you that something’s not going on if you know you’re off. Right. Isn’t that kind of what you’re saying?
Lynda [10:33] I am and I think through nobody’s fault. I mean where the discussion around breast cancer has kind of ended up is that, you know, for a very long time we used to kind of celebrate five years and five years is a kind of a research threshold where, you know, researchers need something to measure, right? So five years pops up as, as something they look at for survival statistics and that’s okay. But for the patient, that’s really not the threshold. And for breast cancer it’s, it’s one, one milestone, but it is not the last milestone and the dialogue with your doctor, you know, breast cancer, metastatic advocates would say the dialogue needs to shift too for anyone who’s had breast cancer, when something comes up, you don’t dismiss it, you evaluate it and maybe you watch it for a while, but if something’s been bothering you for more than a couple of weeks, like bone pain or shortness of breath or dizziness. And there, I do have a pretty extensive list here I can go through if you want to hear more signs and symptoms, you absolutely insist with your doctor that you need to look into it.
Adam [11:50] Yeah, let’s do that. Okay. Could you give me kind of that list of signs and symptoms?
Lynda [11:53] Yeah, definitely and these are all available. I know komen.org is putting this up. The signs and symptoms of metastatic breast cancer is on their website. The majority of people are usually oestrogen positive breast cancer and the signs of that are frequently bone pain. So bone, back, neck or joint pain, bone fractures or swelling, anything involving the lung, it would be hoarseness or constant dry cough, shortness of breath or difficulty breathing. Symptoms of liver involvement would include itchy skin or rash, yellowing of skin or the whites of the eyes, which is jaundice, pain or swelling in the belly and digestive problems. Like a change in bowel habits or loss of appetite and then much rarer, but certainly the most important are signs of spread to the brain. The symptoms for that would be headaches, nausea, vomiting, seizures, weakness or numbness down an arm or something like that. Imbalance, falls and loss of coordination or changes in vision. And then just overall that early warning sign for me was severe fatigue weight loss, difficulty urinating, and increased lymph node size are also sort of overall signs.
Adam [13:11] Okay, wow
Lynda [13:12] Again, I, you know, I really want to make sure that we’re sharing this so that people feel empowered to go talk to their doctor if any of this exists for the vast majority, it will not, but for a sizeable group of survivors, they may encounter symptoms like this and experience recurrence.
Adam [13:33] Even if it’s just for peace of mind, right? Like if there’s a symptom, it doesn’t hurt to check it out, so just for peace of mind, go check it out.
Lynda [13:41] Right and so this is this is a really important thing for us all to start to focus on and just change the dialog that it isn’t getting to five years and saying, “Okay, well I’m done with that.” It’s changing the landscape of breast cancer where we all kind of go, “Okay, hopefully it will never happen.” But if it does, you recognize it earlier. You’re smarter about what it looks like, feels like, and you can go to your doctor sort of armed with information and insist on follow-up and you have follow-up and there’s nothing there. That’s great. We would all celebrate that if it is allowed to progress unchecked, that obviously is not what we want. And in my case, I think ultimately in my case, if we had found it earlier in that year of my son’s senior year of high school, it might have been just a bone only disease and now I’m managing it in my brain. And that is a whole lot tougher than a managing bone only disease. So that’s part of why I tell my story and try to arm early stage patients with what they need to know.
Adam [14:52] Yeah. Well Lynda, this is great. So if I can just, if I can just summarize, I think what I’m hearing you say is be vigilant about your health and when something’s off, even a little off, be vigilant about your health because you can’t always assume you’re going to be the average. So be vigilant about your health. Is that, is that what I’m saying? And do you have any final thoughts you’d like to share with our listeners?
Lynda [15:14] Well, yeah, and don’t be afraid to insist if your doctor isn’t hearing you for some reason or they think differently. I’ve heard an awful lot of stories from an awful lot of patients. It’s your job to insist and say, “I don’t feel good about this.” And it’s always a good idea to get a second opinion just for peace of mind.
Adam [15:40] Give yourself permission to insist. I love that. I love that. Lynda, this has been really great. Thank you for everything that you shared that you, for the advocacy that you’re doing in this space, and thank you for joining us on the show.
Lynda [15:52] All right. Thanks, Adam. Very much.
Susan G. Komen launches the MBC Fund!
Susan G. Komen is proud to launch the “MBC Fund” specifically designed to spur scientific discoveries and support those women and men living with Metastatic Breast Cancer, building on Komen’s $210 million investment in metastatic breast cancer research. For more information on the MBC Fund and how to support it, visit www.komen.org/MBC.
Intro and outro music is Into Thy Heart by Ivan Chew. Ad music is Blue Skies by Silent Partner. The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec and owned by Susan G. Komen.