[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink. A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Tamoxifen is a medication used to block estrogen, which is needed for some breast tumors to grow. Many survivors are prescribed tamoxifen to lower the risk of having a recurrence of breast cancer, usually after breast cancer surgery, chemotherapy, and radiation. Tamoxifen can also be used for breast cancer risk reduction in women who do not have breast but who are at higher risk, which was the case for today’s guest. 20 years after her mother passed away from breast cancer, Colleen Boraca learned she had two conditions that increased her chances of developing breast cancer. At the recommendation of her oncologist, she began her five year daily journey with tamoxifen and is here today to share about her experience.
What helped her get through the struggles and how she was able to work with her doctor Along the way to get the personalized care that was right for her. Colleen, welcome back to the show.
[00:01:10] Colleen Boraca: Thank you. Thanks for having me.
[00:01:12] Adam Walker: It’s good to talk to you again. It’s been almost three years I guess and I’m happy to have you back on the show to hear even You know more about your experience your journey.
So we talked a couple years ago and you had made the decision to take tamoxifen and the steps that you were taking to prevent the development of breast cancer since you were at higher risk. And you were in the thick of it at that time. So now you’re here and you’ve officially taken your last dose, round of applause.
And, first of all, congratulations. That’s a huge accomplishment. And I love that we’re talking about this because the decision to take Tamoxifen can be emotionally daunting to many people. And, first of all, I want to hear about how you feel since you’ve taken your last dose. And then I want to feel about talking about that emotional decision there.
[00:02:00] Colleen Boraca: Yeah. I feel great, it was interesting. I didn’t, I guess in my head, I thought that the day you take the last, it was 1,825 pills. I figured like the last day you take the last one, suddenly the next day, everything’s going to, you’re going to feel great. It’s all, but it would make sense that if you take a medication for five years. First of all, it takes about three
months to fully get out of your system, and that you go through some side effects coming off of it.
That it’s not just that you go from your last dose to being totally fine again, there was a little bit of a period of time where I did have some side effects, from coming off it, which I didn’t foresee. Big one was insomnia. Apparently I slept better while I was taking it. So that was interesting. But grand scheme of things now, I’m a little over three months since my last dose and I’m feeling really good.
[00:02:52] Adam Walker: Oh, congrats. That’s so exciting. I love that. Now, like we talked about Tamoxifen, it’s a difficult decision to choose to proactively take this. It’s an emotional decision. Why do you think it’s hard? Tell us about that process for you.
[00:03:08] Colleen Boraca: I think overall, it’s an emotional medication. For a lot of people who take it, they’re taking it because they’ve, just gone through a diagnosis, they’ve had chemotherapy, they’ve had radiation. And this is the medication that’s designated to prevent that from happening again.
So for a lot of people, it’s just inherently an emotional, medication to take. And in our case with my mother, she did, that. She had chemotherapy. She had radiation. She took tamoxifen and it did not prevent her from developing metastatic breast cancer. And in her case, it was something that she took with a lot of hope and then it didn’t work out.
And so I think that with people, they, at least for myself, I caught myself looking at this medication the first, like two weeks I was taking it thinking like, is this going to help me see more major life changes or milestones? Am I going to tell my daughter’s wedding because I’m taking this but then, after two weeks or so you’re like I have to take this every day for a long time and I can’t go through this every night and then it just becomes part of the routine. But I think it’s just it’s not like taking a vitamin B12 supplement or something like it’s just it’s very emotional and there’s a lot connected to it so I think that It’s involved in the mindset of everybody who takes it.
[00:04:19] Adam Walker: Yeah, I’d imagine every time you take it, it’s almost like that little bitty reminder of what if, right? And yeah, but I would imagine that would get better over time, but probably not totally erase either.
[00:04:32] Colleen Boraca: Yeah, I think that’s right.
[00:04:33] Adam Walker: Okay. So do you have any advice for women that might be on the fence about, continuing to be on the fence about starting this, and can you give them some advice on how to frame their perspective?
[00:04:46] Colleen Boraca: I think first of all, not everybody who takes it experiences side effects. So there are a lot of people who take it and they do pretty well. So you really don’t know how you’re going to respond to it till you give it a shot. For example, I had been preparing for a bunch of side effects. A lot of people experience hot flashes. They experienced things like that. I didn’t have a single one. I went out and bought all these cardigans. I was ready to go for it and, never had one. But I experienced some other stuff that other people don’t have. So you don’t really know how you’re going to respond and you may have a great response.
And so I think from that standpoint, it’s worth a shot. Also, so much can be done even if you do have side effects. I learned that apparently different manufacturers, there are multiple manufacturers of tamoxifen, and depending on who is manufacturing the dosage you’re taking, that can impact what side effects you have.
So there are things you can do with switching manufacturers, there’s so much that can be done. And also at the end of the day, five years, while it’s a long time, it’s not forever. And so I think even side effects are not pleasant, but anything I experienced paled compared to what I saw my mother go through, who had breast cancer.
So I think, certainly for me, it was not a hard decision. It did not take long to sell me on the idea of doing it, but I can certainly understand people who would be hesitant.
[00:06:09] Adam Walker: Yeah. Now, so let’s dig deeper into side effects. You mentioned side effects. What are some of the side effects that you experienced and how did you work with your doctor to circumvent those?
[00:06:20] Colleen Boraca: So I had two different types of side effects mood side effects and like muscle and joint ones Tamoxifen has a heavy link between depressive symptoms.
And so people who take it will frequently notice much more irritability, depressive symptoms and things. I worked with my doctor because I did not want to add more medications to the mix. Although a lot of people do, and that’s, a decision everyone needs to make. And so we made the decision, I cut out most sugar and alcohol from my diet.
And I also exercise now every day. And if I do those things, the mood symptoms side effects really were, well controlled. And at the same time I lost 20 pounds, which I appreciated as well. And that’s something that I have, I’ve kept up even after stopping Tamoxifen. I don’t eat much sugar anymore.
I don’t drink very much and I still exercise. And so that was good. The second type of side effects I had were, related to like my joints and muscle stiffness. And so one day I was, it was about a month into the COVID lockdown. During the morning, everything had been fine. I felt great. And by the night I couldn’t move my legs very well.
I felt like I was walking in mud and I was having a hard time, bending my knees and things. And it was incredibly scary. And at a time where you didn’t run to the emergency room, if you had an issue going on. And so by the time I figured out what the link was and what was causing it, it had been a little while, but in that situation, I adjusted and took more vitamin D and magnesium.
My oncologist also recommended I drink tonic water every night, without gin. But, also I saw a physical therapist quite often who helped me with the stretches and things to get through all of that. But that seems to be, I’m on a Facebook page of individuals dealing with tamoxifen side effects and that seems to be a pretty common one with whether it’s in hips or joints or things. That really was very difficult. I have young children and it was very difficult to keep the boat afloat while not being able to walk, those resolve too. So there are things that can be done.
[00:08:40] Adam Walker: Yeah, that’s good. That’s it’s good to know. So apart from the side effects, do you have any other tips that you’d like to share that sort of helped you get through the process over the last five years?
[00:08:52] Colleen Boraca: I think certainly, being part of that Facebook group was really helpful. I always took anything that I read on it with a grain of salt and ran that by my doctor.
The first night I became a member of it somebody posted a question like, Hey, has anyone else lost their teeth while they’re on this medicine? And I’m like, what in the heck? Nobody said anything about teeth loss, like what is going on? And I said, I messaged my doctor and she’s I don’t know who you’re talking to on this, but I’ve been doing this a while and no one’s losing their teeth, so let’s all calm down.
So I think it’s important when you are learning things online or meeting people on Facebook or whatever, talking with them. Learn from it, but always, confirm
what advice is being given to you or run that by experts in the field. But nonetheless, it was a very helpful way to meet people who had gone through it or going through it.
Learn from them and also just be inspired by what people have gone through.
[00:09:56] Adam Walker: Yeah, that’s great. That’s great. We alluded to this earlier, but I’d love to dig a little deeper now. How are you feeling now? You’ve stopped how long have you been off a bit and how are you feeling physically and emotionally?
[00:10:09] Colleen Boraca: I feel great. I’ve been off it about three and a half months. Certainly my insomnia that I had experienced has been is no longer which is great, but no, I have not gone back to some of my pre tamoxifen habits of eating sugar and other things like that. Yeah feeling great.
[00:10:30] Adam Walker: Okay. Wow. I love hearing that.
That’s fantastic. Okay. Congrats to you. That’s a big win. that’s amazing. That’s a long journey, too, and you’ve gotten through it. Will you see your doctor now, as regularly? Or will you have appointments less often? And how are you feeling about that potential shift?
[00:10:49] Colleen Boraca: While I was on Tamoxifen, I would see my oncologist, two to four times a year, and it involved a lot of blood work where she was monitoring different things that could be impacted by the medication.
And I will not be seeing her anymore just because there’s no need to do the blood work since I’m no longer on it. I do still see the original surgeon who removed the mass that I had. And so I go see her once a year, she will be doing ultrasounds and mammograms. And certainly they’re available if something’s going on, but no, I don’t need to see them as often.
And I’m okay with that just because it wouldn’t make sense for them to continue to do frequent blood work if the medication that’s impacting my blood work is no longer. But, I suppose on some level it was always good to know that I was being watched very closely in case anything came up, but I’m okay with that.
[00:11:42] Adam Walker: Yeah. There’s a little extra freedom involved in that, right? You feel, do you feel lighter, right? A little lighter.
[00:11:50] Colleen Boraca: Yeah.
[00:11:50] Adam Walker: Okay. That’s great. Colleen, this has been great. do you have any final advice you’d like to share with our listeners about any part of your journey?
[00:11:59] Colleen Boraca: I think, what I was originally told five years, I thought that seemed like a really long time and it is. But I think that there’s never really a good time to start this; had I known that three months after starting it I would have been running the e-learning academy with my children during covid, I maybe would have put it off a little while because I have found also that some of the side effects I experienced were related to stress levels. The more stressed you were, the more likely it was to have joint stiffness and things like that. But I also know that breast cancer doesn’t necessarily show up at a time that works well for people.
And so I think, five years seems like a long time. It’s, in the grand scheme of things, it’s not. And my, risk now is certainly not zero. That’s why I’m going to continue to get monitored. But it’s certainly 50 percent lower than it was before, which is a huge thing. But, and even for people who do get it, it’s not my mother’s disease anymore.
People who get breast cancer now have access to treatments and things. A lot of, due to places like, or organizations like Susan G Komen, who invest in research, invest in different treatment options. And worst case scenario, I still get it. It’s okay. There’s a lot that can be done for it, but it is a lot to undertake to take tamoxifen.
But on the other hand, I would do it again in a heartbeat.
[00:13:26] Adam Walker: I’m glad to hear that. That is great. Great advice. Colleen, thank you for joining us again for sharing the final chapter of this story on our show. And, just appreciate having you today.
[00:13:38] Colleen Boraca: Thanks so much for having me. I love being here.
[00:13:45] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.