Barbara Bigelow Discusses her Journey with Triple Negative Breast Cancer

Barbara Bigelow, a patient advocate with METAvivor, spoke with CancerNetwork® about her journey with metastatic breast cancer during CURE®’s Educated Patient Breast Cancer Summit at the 37th Annual Miami Breast Cancer Conference, held March 5-8, 2020 in Miami, Florida.

Metastatic breast cancer currently has no known cure, and Bigelow was diagnosed with triple negative breast cancer, which is considered to be the most aggressive and have the worst prognosis. 

Transcription:
I was originally diagnosed in 2002, out of the blue, and I was 1 of 3 sisters within a 2-year period who were all diagnosed with breast cancer. And we had no family history of breast cancer and the 3 of us did not test positive for the BRCA genes. So, I don't know what that meant, but as I was finishing my first go around of treatment, which was chemotherapy and radiation. Surgery. I really had to think about that. I’m in surgery, I was just coming off of that when my oldest sister metastasized. And so, you know, we really didn't know anything about metastatic breast cancer. I mean, it wasn't talked about back in the day and we were just really focused on my sister, and so she ended up coming back home to my parents’ house and she died within 6 weeks of metastatic breast cancer. So, it was kind of a quick ending to that.

So afterwards, my oncologist who I was seeing at a big hospital in Boston, said, “You know, you really should have bilateral mastectomies with reconstruction.” And I said, “Why? You didn't say that to me before.” And she said, “Well, you know, now that your sister's died, you're ready to swim across the river, so we think we should do it.” I said, “okay.” So, in a way, it was good because I wasn't sick. I wasn't in treatment. I was, you know, just living my regular life with my husband and my 2 daughters, I should have mentioned them. And they were pretty young at the time. I mean, they were like in 6th and 8th grade, when I started this. So, I had the double mastectomy and the reconstruction, and it was a big 16-and-a-half-hour surgery and oh, it was forever, but the recovery wasn't bad. And I resumed my normal life and I continued to take an aromatase inhibitor for 10 years, because that was what was recommended. And saw my oncologist sporadically and she ultimately decided to go into research full time, so she left.

So, then I was, you know, kind of transferred over to a guy in the department, actually he was the head of the department. And so, he was my oncologist and things were going along fine. I was taking my medicine, going in once a year maybe, it was no big deal. And I had had back problems. I mean, they had been diagnosed. I had spinal stenosis and spondylitis, which is kind of like a disc that's bulging and, which I think is hereditary, my dad had it, and I was going for cortisol shots and you go like every 3 months and it helps with the pain but then it wears off. But then it got to the point where it wore off and it just wasn't any better. And I was frustrated with the back pain. So, I called the doctor and he said, have an MRI and then come in and talk to me.

So, I had the MRI, went in by myself. I was really not in any like, you know, red flags or anything. And he said, oh, you have all these back problems. You've  got a root nerve that's compressed, and that's what's causing this new pain. And you need a spinal fusion and a laminectomy, and all this stuff and in my head I was reeling. And by the way, there's a mass or something over by your kidney, I don’t know what that is, you need to talk to your oncologist about that. So, I called my oncologist and he said, oh, have a CAT scan and come in and see me. Meanwhile, I'm on the phone researching back surgeons at the best hospital in Boston with my sister-in-law because I think I'm going to have this back surgery, which shows you how naive I was. And I had the CT and again went in alone to see my oncologist and he kind of came in the room skirt, his coat flying, and said I just came back from the lab personally, I went down and looked and you have a tumor underneath in your peritoneum and it’s crushing on the ureter and there's something wrong with your kidney.

So, I was like, okay, I'm not really sure what all that means. So, he said we had to biopsy it, that was fine and have more scans and that was fine. And then he called me up at work and said you have metastatic breast cancer. It's a breast cancer met that's underneath your kidney. And you also have it in your liver and around the lymph nodes at the base of your spine. And I'm going to send you to a doctor to see about your kidney, but we have to start you up on treatment. And I was ER-positive the first time, so he was very hot to start me on the brand-new drug [palbociclib; Ibrance] that had only a month before been approved by the FDA. So, I started taking the Ibrance and letrozole (Femara) and I went to see the renal guy and he said the ureter was completely crushed, my kidney was gone, gone, gone and not coming back. And if it wasn't causing me any pain, there would be no point taking it out because if it ain’t broke don't fix it.

So, I was fine with that. And I was on the medication and I said to my oncologist, you know my husband and I have planned this trip for a while that we've already paid for it to Iceland and we really want to go in March. This was February when I was diagnosed. And he was like, oh, and he never he would never sign off on it. And so finally the, the week came before we were supposed to go and I just said, screw it, we're going. So, we went to Iceland. And while I was in Iceland, the oncologist called and said, I need to see you tomorrow, your white platelets are dead, you have to come in and I said, well, that's going to be really hard, I'm in Iceland. So, he was really mad at me. No sympathy from him whatsoever. So, at that point, I decided, you know what? He was my oncologist when I was well, not when I was sick the first time, and now I'm sick again. And I just don't feel like I'm getting what I need from him. And I even said to him, you know, like, what's my prognosis, which I think is a pretty standard question from someone who has been diagnosed with metastatic breast cancer, and his answer was, well, I hope it’s long after I'm in a nursing home in Florida. And I thought, this isn't about you, it's about me. I don't care about your retirement plans; I need to know what my situation is. And I just felt really offended by that. Maybe somebody else wouldn't have been but I took it really badly.

So, with that I called Dana Farber and said, I'd like a second opinion. And the woman on the phone said, oh, honey, this is where you need to be. And I said, well, I'd like a doctor, preferably a female one. But like someone really great. And she said, they're all great here or they wouldn't be here. I said, Well, that works for me. So, she set me up with an oncologist and my husband and I went and met with her and I can honestly say that it was love at first sight. And we had a really deep conversation, talked a lot about everything and what was going to happen, and she said, you know, I'm willing to take you on as my patient, what do you want to do? I said, oh yeah, I do I want to be your patient. And she said, do you want to tell your old oncologist, or do you want me to tell him? And I said, you're going to break up with him for me, that is awesome. Like, yay, go for it.

So, she told him and broke up with him and she's been my oncologist ever since. So, I was still on the Ibrance and letrozole and we did some new scans and I had progression. The tumors in my liver were getting bigger. And so, then she decided to switch me to [fulvestrant; Faslodex]. And so, I went on Faslodex for not long, I mean, a couple of months and I had progression. Now I had 7 tumors in my liver, and it wasn't getting better we were going downhill. So, she said you want to go on a clinical trial for immunotherapy combined with chemotherapy and it's not a blind trial, you will get both. And I said, okay, after a lot of deliberate, you know, saying like, oh, yeah, but I mean, it was a lot of deliberation.

So, in January of 2016, I started that, and I was doing it for about 3 months, I was working, I lost all my hair. Over the course of time I lost 42 pounds, I was really, really sick and I looked like what you would think a cancer patient would look like. And I felt myself internally regressing. I felt like I was pulling into myself in a way from everybody. I mean, I just, it was a feeling like I couldn't eat anymore, and I was not really telling anyone that and I was just withdrawing. And then I spiked a fever and my daughter took me to the ER. They thought my port was infected. And so, they put me on antibiotics and sent me home. And I went to work that day that week, and I don't remember working. But I got sicker and sicker and I was spiking fevers, vomiting, couldn't hold anything down.

So, they took me back, they took out the port. I continued to get sicker and sicker until I ended up in the ICU. And the decision was made to put me in a coma, because I had multiple organ failure. The immunotherapy had kickstarted my immune system, and it was it was going after everything. So, they didn't know what to do because these were early days. They didn't have a lot of experience with immunotherapy in that particular one at the time. So they were treating me with antibiotics which weren't working and you know, I was intubated and in the tumor and I had all these teams of people and everything and my kids who are now adults and my husband and they said to my husband, you know, you better get in here, it's not looking good. She’s just got less than 5% chance of recovering from this.

So, they decided at the last minute to treat me with high dose steroids. And they did and it worked. I woke up in the ICU, and I was catheterized, I was on dialysis, and I couldn't walk or swallow or talk or use my hands. So, I was well enough to leave the ICU and go to a patient floor and continue the dialysis, but I wasn't getting any better in that setting so I spent a month in the hospital there. And that was while they were weaning me down off the steroids and all that stuff. And I was getting slowly better. I mean, slow, and then they transferred me, but my daughter transferred me by ambulance to an acute rehab hospital. And things from that point got great. I loved being in the rehab hospital. Their focus was entirely on helping me and doing OT and PT and getting me out of bed. And they got me up and eventually they got me a wheelchair and then eventually they got a strap around me and I could walk a few feet, and I was still on dialysis. So they were working on that and I managed to wean myself off the dialysis, I was walking more and I got onto a walker and I was doing swallow exercises and having sip and swallow tests and they finally got to the point where I could eat thickened liquids. And then more and more things, got to the point where I could use my hands and wash my own face and brush my own teeth. And then I got to the point where I could eat like a peanut butter and jelly sandwich, which to me was like the most gourmet thing after this whole, you know, mess, but I got really strong there. I worked really hard like seven hours a day and I slept a lot, obviously. And then I went home from there after a month on home health services. And I had a PT and a nurse come to the house every week. And we would do more PT until I was well enough to go to an OT facility where we would continue the work there. 

So, it was months of doing that and rehabbing and eventually I was able to get back on my own feet and be mobile. The result of this whole thing that happened was that I have permanent adrenal damage and balance problems. And so, I have to take steroids every day for the rest of my life. And be very kind of aware of my surroundings. I can get really anxious when I'm not in familiar situations like if the if the road is uneven or whatever. So, I made kind of a miraculous recovery and went back for went back to work for a short period of time, but I really needed to sleep like 20 hours a day at that point because I was in recovery. So, I made the decision to retire early. And that was probably the best decision I made for myself and for work. So, I retired so that I could sleep the sleep that I needed and recover and just be home and do all those things. And the weird thing is that this happened four years ago, and in the time since I have no evidence of cancer and I'm not on any cancer medication.