What You’ll Learn

Life can be complex even without a cancer diagnosis. When cancer is part of the picture, day-to-day challenges, including existing chronic conditions, only become harder. A patient tells her story of illness, anxiety and, ultimately, resilience. Her journey brings to life the necessity of healthcare professions asking about and understanding a person’s whole story to ensure they get the best shot at recovery and survivorship.

Interviewee: I live in the Bay Area, San Jose. For the longest time, I’d get a mammogram done maybe once every three or four or five years because I was under the impression that you had to have masking tape put on your nipples. So they do put stickers. But this was in 2020, I was running to catch the light rail and I tripped on the tracks, fell, hurt myself really bad, and they took me to the hospital in an ambulance and they did a CAT scan on me.

So I said, “It’s okay, nothing’s broken. Can I go home?” And the lady asks the doctor, and she goes, “He needs to talk to you first.” And I said, “Well.” And he gets there, I said, “What? There’s nothing wrong with me.” He goes, “You need to see your doctor about these results of your CAT scan, because it looks to us like you probably have breast cancer.” So I took that piece of paper and put it in the bottom of my backpack and ignored it for about a month. Then I took it out and I thought, “I’ll get retested,” and it was positive.

VIVO : Before that, how long had it been since you’d had a mammogram?¬†

Interviewee: It had been about two years.

VIVO : And all your mammograms before that had been normal?

Interviewee: Completely normal. And this one, not one, but two completely different kinds of cancer in the same breast.

VIVO : So at that point, they did the CT. The doctor said, “You need to go do this.” What in your mind thought, “I’ll put this at the bottom of my backpack and not worry about it”? Was it more like denial or more like, “Oh, whatever, they’re not right.”

Interviewee: It was like, “Oh, that can’t be, I don’t want to think about it.” Then I was thinking, “Well…” And then I asked my sister, “I had this happen.” And she goes, “Do you know what happens if you don’t get it treated?” And she sent me some pictures and I said, that was part of what made me decide to go back. I didn’t know what end-stage breast cancer looked like.

VIVO: So you went back, and then you had a more in-depth mammogram?

Interviewee: They had to send me to the hospital to have that mammogram because that’s where they have the equipment for this kind of thing, and they did that. And they said, “Yes.” They showed me what they saw, and it looked like little kids holding hands, but it was the cancer cells. And then they said, “You have to have a biopsy.” And I said, “I’m afraid I won’t have a biopsy unless you put me to sleep for it, because nobody can cut me open.”

So the surgeon called me that night and said, “Let’s try to make a deal.” And I said, “Well,” he goes, “I don’t want to rip the whole operating theater out for a biopsy.” And I said, “I won’t have one done unless I’m completely anesthetized.” So he said, “How about if I really relax you?” So I said, “We could try what the dentist uses.” And that’s what we did, and it knocked me out.

And then from there, it was radical mastectomy two months later.

VIVO: Before that, what was the reasoning for you to want to be knocked out for this surgery as far as “being cut open,” things like that? Have you had a bad experience in the past ?

Interviewee: When I had my son, it was an emergency C-section, and I felt it when they cut me open, so then they had to knock me back out. But anesthesia, and that’s the twilight sleep they put because you put a drape over you, but you’re not knocked out. It was a spinal block. That’s what it was called. It didn’t work. So I was afraid anything that doesn’t knock me all the way out isn’t going to work, and I don’t want to wait around and see, “Oh, let’s try.” It really hurt.

VIVO: How long did it take for the results to come back after your biopsy?

Interviewee: Two days. They had said it would be up to a week, but then they called me and I was out walking and the lady goes, “Are you sitting down?” I said, “Is it positive?” And she said, “Yes, it is.” So I dropped the phone.

VIVO: Did they say it was two different kinds or what did she do on the phone at that point?

Interviewee: No, they didn’t stage it or grade it until they had sent it to pathology until they cut the whole thing off. And then they said it was two different kinds, and it’s metastasized in both cases. So it was in my lymph nodes.

VIVO: In that process, when did you go to the doctor? How were you told that this is the best course of action? What decisions did you make? I’m sure it was kind of a blur, but at the same time, do you have any specific things that stick out in that part of the process?

Interviewee: It was the surgeon who did the biopsy, and he did the mastectomy, but at the hospital, the HMO that I belong to, it’s a team of doctors. So I had a surgeon. They had a whole bunch of people. And it was the surgeon who called me and said, “I’m afraid that in this case it’s advanced. There’s two different kinds. We’re going to need…” He did say that. He said, “I don’t see we have an option, otherwise I would suggest lumpectomy. But in your case, because you’ve got at least two tumors, it’s got to be a mastectomy.”

VIVO: How did you react to that? 

Interviewee: I think at first it went in one ear and out the other. I didn’t think about the full impact it would have on me until I woke up from the anesthesia and saw what it looked like. Then you have drains and stuff, and I couldn’t deal with it. It was a mess, and then I got infections.

VIVO: Did you have a double mastectomy, or did you only have the one breast removed?

Interviewee: I had the choice of having a double, but I didn’t want that much cut off of me.

VIVO: Did you opt for reconstruction?

Interviewee: No, it wasn’t an option, really. They didn’t even give me the option. I am guessing it’s because I have such a problem with anything medical, and that requires a whole bunch of expanders and more surgery. So I was okay with that.¬†

VIVO: You said that you dealt with infections after the surgery?

Interviewee: I had something called a seroma, which means it was a lesion inside where the breast in the incision, but way in by my chest wall, and it expanded and it hurt really bad. So I had to keep going back and have it drained, and then they would put me in the hospital for a couple of days. It happened twice. And part of the reason was the drain kept falling out because I couldn’t stand the drain, and I wasn’t handling it properly, I guess.

VIVO Strategist: Did you feel like you were educated about doing that the right way? 

Interviewee: Before I left the hospital, we had gone over it and over it. I knew what to do, but I have such a thing about touching something like that. It’s yuck. Now I’m even worse than I was then.

VIVO: Were there any surprises about how you felt after your mastectomy that you weren’t expecting?¬†

Interviewee: It had a huge effect on me. I think it caused depression. It’s ruined my self-image. I wouldn’t go out on a date if anybody even asked me. I’m old too, but still, it had a negative effect on me. And I’ve even thought, “But it was worth it because at least I’m still alive.” And I guess that’s true in a sense.

VIVO: Are you undergoing counseling?

Interviewee: I see a psychiatrist and a psychologist.

VIVO: When you were recovering, what happened? You had the mastectomy, and then what happened?

Interviewee: When it turned out it was cancer, I was renting a room. Let me back up. I had lived in a city about a two-hour commute, but then I was living in an apartment there, and I fell down a flight of stairs carrying the laundry and shattered my ankle. And it was so bad I had to be in a nursing home for three months. So I lost my apartment out there, moved back to this area because this is where I work, where my job was, and rented a nice room from a nice retired nurse. But when she found out I have cancer, she told me I had to move because she didn’t want to… I said, “I don’t want you to take care of me.” But she said, “I’m sorry, I can’t go through it with somebody.”

So that happened like three weeks before my surgery. So I went to a motel. It’s really hard to find a place around here, but when I got out from the surgery, I had no place to go. But thankfully, in a way, it was during COVID and they were putting people my age with all my chronic conditions in motels. So they put me in a motel for a year. I lived in a motel for a year. I went through the chemo and the radiation in a motel.

An organization called The Pink Ribbon Girls. They provided me with meals every night in a week, transportation to and from my radiation and my doctor’s appointments, which was really nice.

VIVO: So, after the mastectomy, did you go through any chemo first or did you go straight to radiation?

Interviewee: No, there was no chemo first. There was straight to radiation. And then I had the option of having chemo, but I didn’t want it.¬† He said, “You got an 18% chance of it coming back without it. Without chemo, it’ll be like a 25% chance.” And I didn’t want to go through that because it makes you really… Then he put me on Arimidex. It made my hair fall out anyway. That’s what I’m taking now.

VIVO: So you did radiation. How many treatments of radiation did you do?

Interviewee: Two weeks. So, 10.

VIVO: And then what’s the follow-up for that now if you’re on Arimidex, where are you now with everything?

Interviewee: I have another year to be on it at least they said. I don’t like the fact that it’s made me bald, I look like I have mange or something.

VIVO: Well, you have gorgeous eyes, so that’s helpful.

Interviewee: That’ll go next. I have glaucoma too.¬†I’ve got everything you can think of chronic wrong with me, except for I still have a brain.

VIVOt: Follow up. So you’re on the Arimidex. How often do you go to the doctor now?

Interviewee: Anytime I get worried about something, I’ll go and get it checked. I’ve had two biopsies since, and I have to go every six months to see the oncologist to see how I’m doing. And then every six months, I have a mammogram on the remaining breast.

VIVO: I would imagine it’s quite a different experience now with one breast and then going in to have the mammogram. You said about the self-image, things like that. Is it more difficult to do the process, the disrobing and the squishing and all that than it was before?

Interviewee: Not really. I’m used to it now. It’s not scary. So that’s okay.

VIVO: Looking back at it, did you have anything like that where maybe before your fall you thought, “I did have this and I didn’t notice”? Was there anything odd going on?

Interviewee: There was nothing. I did the self-exams every few months. I didn’t feel sick. That’s why it was hard for me to believe that I had something wrong with me, I mean something else wrong with me. But it was, yeah. It blindsided me. I had no idea.

VIVO: When they did the diagnosis and the staging and all that, what did they tell you? So you said two different kinds. Do you know the two different kinds that you had?

Interviewee: It’s invasive duct and invasive lobular.

VIVO: Did they stage it? Did they tell you anything like that?

Interviewee: After I had the breast removed, yeah. He came in when I was in recovery, it was the surgeon that helped me through the whole thing, told me, “Well,” he said, “It’s not that bad.” He said, “It’s not the best news in the world, but it’s not that bad.” And I said, “Oh, okay. Tell me what.” And he told me, and he said, “You still have life.” I’m like, “Oh, gosh.”

VIVO: That’s a tough thing to hear in that moment, isn’t it?

Interviewee: Really. It was a shock.

VIVO Strategist: Anything that was happening at the same time as this process? You said with the glaucoma, or did anything else come up at the time?

Interviewee: During this time, I was under treatment for glaucoma. I still am. And for coronary artery disease, diabetes, those things were going on. And I was starting to get sciatica. Since then it’s been diagnosed. I’ve got a herniated disc and spinal stenosis, both in my cervical and my lumbar spine that hurt.

VIVO: That’s quite a bit to be going through. What’s your treatment right now for your glaucoma?

Interviewee: I take four different kinds of drops every day. I have to see a specialist, a glaucoma specialist, because my pressure runs high, but I don’t want to have the surgery and get the drains put in my eyes unless I really have to. So I see him every three months and he tests the pressure.

Interviewee: Mine’s pigmentary dispersion, which means the colored cells in my eyes clog up the ducts, so the pressure goes up.

VIVO: How long have you had that?

Interviewee: Probably 20 years. Since my cataracts.

VIVO: You said that you were in the motel for that year, and then that organization helped you and all that. Are you okay now? What kind of situation is it now as far as-

Interviewee: I was forced to retire because I had been at the same place for 23 years but I was out for a year with cancer, and then I had to keep going to the doctor, so I was pretty much forced. They kind of push you out. But it was like, “Either do this or you’re going to get fired.” Okay.

So it was a blow. It was a really big blow. It’s been a huge change not to work. That was two years ago this month, and since then, the thing is, I live in the most expensive place in the country. I’m living in the back of a garage and I have a tiny bathroom and no kitchen, and it’s $1,300 a month. And when I retired, my pension is half of what I was making so I can’t afford anything more, anything here. Nothing, just this place. But I’ve looked at other places in other cities,¬† but other places I could live on what I make, but not here.

The thing is, my son lives here, so it’s a real toss up. And he’s my only remaining family. He calls me almost every day, and I see him at least once a week. He’s a really nice man. He’ll be 37 this next month.

VIVO: Was he a good support when you were going through treatment?

Interviewee: He did. We had gotten distant from each other when I moved to the other city, but we’ve grown much closer since I got back. My dad died in 2019 and my mom a long time ago of cancer and it runs in the family, I guess. And my sister moved away. So my son’s the only one.

VIVO: What kind of cancer did your mother have?

Interviewee: Bladder cancer.

VIVO : When you were in the middle of the process, did you ever feel like one of the people giving you care gave you extra care or maybe didn’t give you enough? Did you ever feel like you were taken care of or not well taken care of anywhere in the process?

Interviewee: The surgeon, he really took good care of me. I think he’s the reason I got to stay in that hospital, I mean that motel for a year. And I still see him. I still am in contact with him. He’s a nice, nice man.

VIVO: Any not-so-great experiences?

Interviewee: I’ve had a couple of bad experiences with doctors where… I have recently. They have a problem with, I have severe pain from sciatica, and so my previous doctor and my discs and my spine, he had given me an open prescription for Vicodin, which is an opiate. And he knew me well enough to know I only got it filled when I had to because it really hurt and it’s all documented and everything.

He retired and the new doctor doesn’t believe in that. He wanted me to go to a pain specialist. And I called the guy and he said that, “Yes, pain’s all in your head and we can take care of it by giving you yoga and retraining your mind not to feel it.” And I said, “Oh, no, thank you. I’m not interested.” So I deal. I really think it’s terrible the way they’ve come down on opiates where somebody really is in pain and needs them, they won’t get them, and that is not right.

I think that’s awful. Like my mom, her death was horrendous from cancer. If she didn’t have morphine, she would’ve killed herself. I know that because she’d have no choice. The pain is unthinkable and the spinal pain is horrible. But for some reason, this is going on in this country a lot. I think it’s really, really bad because sure. But look at this, alcohol’s addictive, alcohol kills people and these things have a legitimate medical use and they can weed out the druggies. It can’t be that hard to tell who’s real and who’s not. I don’t understand. I don’t know. I’ll get off my soapbox.

VIVO: No, this is the time for your soapbox, please. I really appreciate that. I keep on coming back to this time period where you happen to fall and then you happen to have a CT scan, and then you have this biopsy. How long after your mastectomy did you have the radiation? 

Interviewee: The mastectomy was done in June, and I started the radiation in November.

VIVO: And then you did that radiation, and then after that, what happened right after the radiation was done?

Interviewee: I started on the Arimidex.

VIVO: And the Arimidex, like you said, your hair’s fallen out, but other than that, are there any-

Interviewee: I haven’t had any. I’ve been fortunate. Some people have really bad joint pain and so forth, but I haven’t. None of my pain’s related to Arimidex. I’d rather be bald than dead, I guess. So I’ll take the Arimidex.

VIVO: That is true.Is there anything that you would say to a patient who is going through what you had to go through?

Interviewee: Prior to that, I would say everybody needs to get an annual mammogram. That is so darn critical. But this cancer, you don’t know you have it, and there it is. If you caught it early enough, it doesn’t kill you. Mine was a little bit late and it may well kill me, but something’s going to anyway.

I would suggest that people look at pictures of what a masectomy is going to look like. So you’re not shocked when you see it for the first time. You have to be prepared for it because I’ll be honest with you, it’s hideous. You can imagine it’s a big scar. But get yourself used to it. Get in touch with your feelings and get a therapist if you need one. It is a rough road. It really is. And the surgery itself doesn’t hurt that much. It’s not that bad. And the recovery was, well, because I had all those infections, the seroma, it was worse than for most people. But it’s not that bad. It’s the result. It’s your physical consequences that are hard to take.

VIVO: I’m so sorry. What about for doctors who are treating patients ? Any thoughts as far as education they should give or attitude they should have or…?

Interviewee: I think they should spend more time with the patient explaining what… I mean, they give you this thing, “Here’s what you got.” I’m like, “Huh?” So they should explain what it is. And I think it’d be good if they went more in depth into what your options are in terms of reconstruction and that kind of thing. And so you know, at first, you’re going to be able to wear a cotton thing in your bra or go braless, whatever you want to do. If you’re large chested, you probably want to wear something and then you can wear a prosthesis later on. But while the scar is still healing, all you can wear is cotton things. And so you’re prepared, possibly have some of the supplies and talk to people about it, because there’s a lot to it, a lot more than you would…. You don’t walk out the door with one. It’s not that simple.

VIVO: Anything as far as your hair loss goes, any advice you’d give about that?

Interviewee: It’s really hard on the ego, especially when you’ve already lost a breast. And my front teeth are missing too, from when I fell on the tracks that time. So I have a denture. But I don’t know. Carry on, I guess. Get a good support system, that’s essential. And know where you’re going to go to. Well, I couldn’t have known. If you can make arrangements for what you’re going to do after the fact.

VIVO: What inspires you? 

Interviewee: I like to help people. I really do. And I believe in living by the golden rule. And I think that anything that I can do to help somebody in any way is probably the most important thing in life. But it’s a rough road. It’s really hard. My little dog has helped me so much. He keeps me company. He loves me. And I think he’s kept me alive in that sense.

Participant Profile

• Female breast cancer patient in her late 60s/early 70s
• Located in San Jose, California (Bay Area)
• Retired network technician (forced to retire due to illness after 23 years at same company)
• Multiple health conditions including breast cancer, glaucoma, coronary artery disease, diabetes, and spinal issues
• Lives alone in a small rental with limited financial resources
• Support system includes her adult son (37) who lives nearby and her dog
• Notable challenges: financial constraints due to high cost of living, pain management issues with healthcare providers, body image concerns post-mastectomy