Visiting the hospital for breast cancer treatment during the coronavirus outbreak
When Katherine O’Brien went for breast cancer treatment the week of March 16, the roads were still busy and the doors were still open. But soon her visits changed. As the country and her healthcare center took new measures to prevent the spread of the coronavirus, the people she saw along the way were no longer out, her routines were changed, and she had to take new precautions, inside the hospital and out.
Katherine, who has been living with metastatic breast cancer since 2009, spoke to Living Beyond Breast Cancer CEO Jean Sachs about how getting treatment has changed since the coronavirus outbreak, both the practical and the emotional.
Katherine, a resident of suburban Chicago, was diagnosed with metastatic, hormone receptor-positive breast cancer at age 43 in 2009. It was a de novo metastatic diagnosis, meaning the cancer was metastatic by the time it was first detected. She is currently on nab-paclitaxel (Abraxane), her seventh line of treatment for breast cancer. Read more.
Jean A. Sachs, MSS, MLSP
Chief Executive Officer, Living Beyond Breast Cancer
Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.
Jean Sachs (00:01):
Hi, everyone. It's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer. Today we are talking to Katherine O'Brien. Hi, Katherine, thanks for joining us.
Thanks for having me.
Jean Sachs (00:14):
Katherine is a long time breast cancer advocate. She's also been living with metastatic breast cancer for 10 years. She was diagnosed de novo metastatic when she was 43 years old in 2009. She has a lot of experience being a patient and being an advocate and now being a patient in a very different world.
I know everybody is interested to know what it is like, so Katherine, why don't you just start by telling us how long you've been on your current line of treatment and how things are going.
Katherine O’Brien (00:53):
Sure. I have been on Abraxane (nab-paclitaxel), IV chemo three times a month since October 2019. Things are going well. I had scans mid-March and am stable.
Jean Sachs (01:12):
That's good news. How often are you going in for treatment?
Katherine O’Brien (01:16):
I go once a week for 3 consecutive weeks and then I get a week off. So it's 3 weeks on and 1 week off.
Jean Sachs (01:25):
Tell us what that experience is, starting from when you leave your house to when you get to the clinic or the hospital and then coming back.
Katherine O’Brien (01:38):
Sure. I live in west suburban Chicago, so I take our commuter train to downtown Chicago where I go to an academic cancer center. At first — I remember it was St. Patrick's Day when I think the news really started to come in and things started to change a little bit — things didn't change drastically that week. I got on the train, it was a normal train ride. I think I might've even have taken the water taxi from the train station to Michigan Avenue, and then Michigan Avenue as per usual busy.
It was a little unsettling because in this appointment I was going on the heels of good news. I just had my scans and normally it would be a very upbeat appointment, things are going great, stay on the course. But with the news that was coming, especially at that time out of Italy and China, I was very worried. That was my main question for the nurse.
I guess I should explain. Usually when you go to the hospital or the treatment center, it's pretty standard. You get checked in, in my case you have a blood draw. And because I was starting a new cycle, seeing the nurses and the oncologists and going back for my infusion.
As I was starting to say before, I was meeting with the nurse practitioner, happy with these scan results but very nervous about the news, the COVID-19 news. My main concern was: What if I can't get my treatment? What if they redefine my doctor or my care team to infectious disease? The nurse was very reassuring, and she said that we haven't received any news of that. I think she pointed out that in Italy and China cancer patients continued to get their treatments.
That was week one and ensuing weeks, as we all had our shelter-in-place orders, it became very creepy. Even on March 17, typically my sister would come with me to an appointment and she said, “I’ll drive you.” And I said, we should minimize exposure, I'll go by myself. So I went by myself.
That then became mandated.
The cancer center will call you before the appointment and say no. First it was no visitors back to the infusion area or back to an exam room. Now it's come by yourself, don't bring anyone. This is an isolating disease anyhow, but now even that’s ratcheted up a bit.
Just the journey from my house to the cancer center, it's a ghost town. I will be on the Chicago commuter train and it's myself and maybe — total scattered through — six or seven [others]. We each have our own car. There's five people on the train, but they are still running. It's a reduced schedule. It's basically what we typically run on Saturday or Sunday, which works fine for me. Getting there has not been an issue.
It's also very much changed in terms of, as I said before, typically when you would come to the cancer center, there is a, it looks like a video camera, up high. As you walked down this carpet, there was a video camera and it's I guess taking your temperature or heat sensing and before you could go in you have to have a mask. The security guard will stop you and say, “How are you feeling today?” If you weren't wearing a mask, they would give you one.
The whole thing with the temperature sensing,. I didn't know because I'm wearing a hat. It was actually cold the last time I was there and I must've had it really down low. The security person was signaling for me to push my hat up and I didn't know what she meant. That was a little frustrating, it reminded me of being at the airport: What? Take my shoes off? Put them on?
Jean Sachs (05:58):
Is it somewhat reassuring to know that precautions are being made?
Katherine O’Brien (06:01):
It is, but also — as somebody that has gone to this cancer center is and, you pointed out, I've been treated for 11 years, I've gone to this center for the past 5 years, when we're all creatures of habit — any sort of interruption to your routine, whether you're a cancer patient or not, is unsettling. Particularly with metastatic disease, since you have so little control over things, the fact that you have absolutely no control over you can't pick what door you want to go in, which is certainly a minor thing, but you get used to your routine. So that's a little different. And, especially when you have gone there for 5 or 6 years, you're used to going on autopilot. I have to turn down this hall or whatever. Well, now with the security guards, honestly, it feels like mother may I, which is good, but it's, “Is it okay if I go here?” It adds to the whole unease.
Jean Sachs (07:07):
I hear that and I've heard from other women that it's very empty.
Katherine O’Brien (07:11):
It is. That is also, it's good, but unsettling in terms of, if you are the one who is the essential cancer patient, if you were the person who is required to be there, on the one hand, I'm certainly glad I can get treatment, but on the other hand, it's not a great feeling knowing that you have to be there. you don't really have a choice.
Jean Sachs (07:42):
Let me just ask you, did you talk with your doctor about possibly switching up your treatments during a period of time or was the decision that you should just keep going?
Katherine O’Brien (07:55):
I wondered if that would come up. with Abraxane on the schedule that I’m on, that isn't really possible, or that's my understanding. I had wondered if they would suggest where you could be on something else, but I really can't. The reason that I'm on Abraxane is I have been on all of the easier, I've been on all the oral options. This is my seventh line of treatment.
Also, [starting a new treatment] would confer its own challenges, because anytime you start a new treatment, typically you would have to be seen [by your oncologist], usually a blood draw would have to be made to get a baseline. Then there would have to be an instructional visit with the nurse to expect the symptoms.
The instructional visit could certainly be handled through a telephone or video, but a blood draw could not. And it would also, I don't know, maybe that's six of one, half-dozen of another, it would make me nervous. I have to switch to something. Especially knowing that my current treatment is working.
Jean Sachs (09:09):
I know that what I've heard is doctors are making really careful decisions about who they switch or who they delay.
In terms of staying in touch with your doctor, are you connecting via telemedicine or have you had any in-person visits with your medical oncologist?
Katherine O’Brien (09:25):
I see my oncologist once a month when I started a new cycle of this treatment. I would see the oncologist and then I would be in the cancer center for the next, that's the first of the next three visits.
I did ask about that and, but I haven't had any recent questions. But that's always been very effective, if it was a question that required an in-person answer, my doctors or nurse practitioner would get right back to me.
One thing that gave me reassurance on two fronts was my nurse practitioner is very good. I feel we have a good relationship. she is somebody that inspires confidence. My oncologist and the cancer center is an NCCN-designated cancer center, it's a National Comprehensive Cancer Network center and my oncologist actually is the guy that supervises the recommendations for breast cancer. I feel he's a person who has a leadership role in cancer treatment, in metastatic breast cancer treatment, but also has a direct line into how things are going with other leading cancer centers.
Jean Sachs (11:05):
That's great. I wonder if we just cover a few more things. When you think about the future, which now maybe is just the next few weeks, do you have concerns about being able to continue accessing treatment? Because it seems like right now you're able to get there and you're having the treatment, but do you have [concerns] about what might change?
Katherine O’Brien (11:28):
No, I don't think so because there's been more safeguards in place, but nothing that has changed the frequency or access of my treatment.
Jean Sachs (11:38):
That's great. And it's wonderful that your scans are good. That makes us all really happy.
We always like to end with this when we're talking to women: What are you doing just to take care of yourself in between treatments and stay positive and stay sane?
Katherine O’Brien (11:56):
Some of those issues are certainly ongoing from before this crisis, but I think connecting with others is important. I have many online friends, and also in terms of my family, it's a close family. We have been making use of Zoom. In fact we had an extended family reunion. My aunt had, it was her 80th birthday and that family is on the east coast. I was thinking, gosh I could have saved a lot of money because we had this reunion last year. I could have saved a lot this way. It was nice seeing people. And maybe that is a little bit of a silver lining. I certainly am in touch with family, but I think there's a little bit more of an effort to be um a little bit more face-to-face electronically, if that makes sense.
Jean Sachs (13:00):
Yeah, I think many of us have found that in some ways we are connecting in a much less expensive way and not as travel intensive.
I really appreciate you sharing your story. We know that going for treatment is very different than it was pre-COVID-19. We know for newly diagnosed women, they are walking into an environment where they can't bring someone with them and there's all these precautions. Hearing you as a real veteran I think will be reassuring to our community.
Again, I really want to thank you for sharing your story. We wish you well. Thank you.
And to everybody, as Katherine said, staying connected is so important. So remember, we have closed Facebook pages. We have one for all stages and all ages. We have another one for young women. Go to our website, if you want to join, we'll add you. We're also adding content to our website pretty much daily at LBBC.ORG.
Stay strong, stay state, stay safe. And we will be coming back soon with more information.