“This is who we are. Cancer cannot define us. Our mastectomies and the bald heads, it can't define us. The cancer wants to try to beat us but we can beat it back.”
Name: Rachel Yasui
Invasive ductal carcinoma (IDC) or infiltrating ductal carcinoma
Delayed mammogram showed lump
Double mastectomy: removing all breast tissue
Chemotherapy: AC-T for 6 weeks
AC (Adriamycin Cyclophosphamide): 4 weeks
T (Taxol): 2 weeks (cut two weeks early)
Hormone therapy for 10 years
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I. Diagnosis & Tests
What were your first symptoms?
Actually, I had no symptoms. I went in for a routine mammogram. What was kind of odd about this mammogram is, I had put it off for six months. I had a reminder on my bulletin board, and every day I walked past the bulletin board and out my door, like, "Oh, I gotta call."
I put it off for six months and then as I was walking out my apartment door, I get a call from the Imaging department. They're like, "Hey, we noticed you're past due on your mammogram. We'd like to make an appointment for you." So of course since I'm on the line with them I made the appointment.
I think it was a week later I go in for my appointment not thinking of anything because I'm in shape, I had no symptoms. Just routine, until I got a call from my doctor saying that they found a lump or a mass.
How did you get diagnosed?
It was the mammogram, and I was scanned with that 3D imaging. Through the imagery, they found a spot. It was maybe like a quarter-sized spot that they seen. So just for precautionary measures, my doctor ordered an ultrasound. Then during the ultrasound, it was verified that what they saw on the mammogram was actually in concurrence with what they saw. So that was already two verifications. But just to make sure if it was benign or cancerous, that's when they ordered the biopsy. At this point, I'm a little freaked out because this has never happened to me before.
I think the biopsy took two days, and then I got a call from my doctor.
I think at that time I was just so shocked. I didn't even know. I had no emotions. I think I'm still not really processing everything yet. But yeah, it was just kind of devastating.I have to say that everything progressed really fast after that. From one minute being diagnosed to the next minute having a mastectomy, followed by chemotherapy.
Describe ultrasound you underwent before diagnosis
The technician just scans your breast and they're able to look on the monitor to see if there's any - I could probably best describe it as hollow spaces or dark spaces. If the breast is gray, the tissue is gray, and then there's a black spot, that's an indication of a mass, whether it's benign or cancerous. She just scans, or just scans over the breast, and is able to take a picture of all the different sides.
The ultrasound probably took about 15 to 20 minutes, because the technician was really took her time. She was just really going over each area, just kind of dissecting from one quadrant to another, and at the same time she was taking pictures. Whatever area that she stopped at, she would take a picture, and then she would just make sure that she had the best pictures for the doctor to be able to look at the scan and determine if it was indeed what they suspected.
Describe the biopsy after the scan
The biopsy, that's a little bit different. I really didn't know what to expect. But what the doctor does is, he or she has a long “rod,” but it's really thin. It's almost like a plunger. All I felt was a sting. It was very uncomfortable. What the doctor does is, he or she is taking out that tissue. Right in the office.
I think more the fear is what are they going to find out? The biopsy was really quick. Probably the same thing, about 15 minutes. The doctor took two samples of the tissue. Yeah, pretty easy.
How was the wait for results?
I waited less than a week but it was very agonizing because you want to know now. I guess for me, living in Hawaii, everything has to be sent to a mainland lab. I think that was what was painful. And during that week, I tried to not think about it. I kind of kept my mind occupied with other things. And then by the time I forgot about it is when my doctor called with the results.
How did you get the specific diagnosis?
My primary doctor told me that I had breast cancer. The following day, I had an appointment to see the cancer care team. It's in a multi-disciplinary clinic, and they had five doctors that came in to talk to me.
One was my oncologist, who was the one that told me that I had female breast infiltrating ductal carcinoma on my right breast. The oncologist told me about type, and then the plastic surgeon came in to tell me I could either opt for a lumpectomy or a mastectomy.
Then they had a radiologist, I'm going to say there was one more. The nurses. Yeah, it was pretty intimidating, in the sense that all this information is being thrown at you. They were very caring. [It happened on] the same day. What has happened in the past is, cancer patients would have to go from one appointment to another. I don't know if it's like this everywhere, but Kaiser decided to bring all the doctors to the patients.
So I sat in a room, and after one doctor came in to me, the next one would come in to see. They just were very passionate, very kind. In a sense, it's like I've never been treated that way, going to my regular accounts.
I think I'm still in disbelief, still in shock. But the only thing that brings me back into reality is when I look at my scars every day, when I'm getting ready. When I'm looking in the mirror.
How did you break the news to loved ones?
I remember, I had started a new position. And right before my start, I have a colleague, and his wife was going through cancer at the same time. And beforehand, I told him, "I think I may need to talk to your wife." He said, "Oh, nah, nah. It'll be okay. You'll be fine." And then once I found out, I told him, "I need to talk to your wife."
He was devastated; she was devastated. She actually came with me to my appointments, because for me, I'm single. I have family, but I never grew up with my brothers or my sister. I met them when I was 18, so our relationships are a little bit different, although I did tell them, and they were very devastated. It's just different. I went through this journey, really when I look back at it, alone.
Did you get a second opinion?
No, because I trust my doctors, and it would cost money for me to get a second opinion. [The diagnosis] was pretty straightforward. Again, I'm glad they caught it when they did. I think for me to get a second opinion, it would just prolong my agony.
How did you decide where to get treatment?
I was always at Kaiser and I decided to stay there. For me to have to change, it's just such a hassle, and it would end up costing me way more financially.
What did you like about going to your larger-size hospital?
I have to say that I had a great cancer care team. I think the problem is there's either not enough chairs or too many cancer patients, so they're always busy. But other women going through the same thing at other local hospitals [said] it's the same. There's either too many cancer patients, or you could still have more chairs, and still be out of room. But I think for Kaiser at least, they do their best. They're just very kind-hearted to people. I've never had a problem.
Did you undergo genetic testing?
Yes. I did the genetic testing and they did find something but it was inconclusive.
II. Treatment & Side Effects
How did you decide to undergo a double mastectomy?
I decided to do a double mastectomy, even though the cancer is on the right side. The reason why I chose both is because I think I would be more devastated looking into the mirror and seeing one breast. And also I don't want chances of cancer coming back in my left breast, and the doctor saying, "Hey, you have cancer."
What do you remember of the double mastectomy surgery?
No prep work. The only thing they did is scheduled my appointment, then I just went in, had the surgery. It was pretty upfront. (Full anesthesia.) I think it took the whole day and then I stayed a night. They wanted to keep me overnight, and I think that's pretty common.
My doctor was pretty upfront that this is what's going to happen. She left enough skin so when they do have my reconstruction surgery, she said it won't be a problem.
Did you feel any side effects from the surgery?
Not overnight. I think I was a little sore, having to ask for more medications. And I think most of it was because they require you to blow out of this breathing tube, and so anytime you inhale or exhale, I do remember I was a little sore. [It lasted] probably two days.
Describe the drain tubes post-surgery
It didn't last very long. It was just what I had to do every day for about a week is empty my drain tubes. They require you to empty the drain tubes, and then record how much fluid comes out. And then when I was about to start showering about four days after the surgery, one of my tubes came out. And of course, I'm freaking out. I called the doctor's office and said, "I don't know what happened, but the tubes have fell out." And at that point, they're like, "Ah, don't worry about it. It's okay." It's supposed to stay in for a good, I want to say, almost week.
So the tubes are really long and you [need to] pin them up. I've noticed just looking at websites, women make these little aprons to put the little tubes in. So women have made these aprons for the next women in line that have to go through this. Because otherwise, those tubes are hanging down, and I didn't know any better. I let them just hang by my side. And I think one of them just got a little too loose.
Have you had reconstructive surgery?
I have not. The reason why is because I've had a few other surgeries since then. I don't want to start the reconstruction until my other surgeries are done with.
I've had various injuries before cancer and before chemo. And right after chemo, it just did something. It just made my bones really weak, and it has exasperated a lot of my old injuries. So I've had two shoulder surgeries. I've had a back surgery.
How long after surgery did you start chemotherapy?
I started a month after. They had to give me time to heal from the surgeries.
Describe the chemotherapy regimen
[The infusion] lasted like an hour, hour-and-a-half. I had two [chemo] bags.
I had four rounds of chemo, and it's every three weeks. So the first week, I have chemo. Towards the end of the week, I started feeling kind of ill. The second week I had to give myself injections [Neupogen]. I was really in a lot of pain, just like muscle ache, joint ache. and it just helped regenerate the white blood cells. And then the third week, I was fine. Then it would start all over again.
Can you describe the chemo side effects?
The side effects were I just felt real cloudy. My mind was real cloudy. I just felt like my body was hallucinating. I don't know if you can understand that. Then just sometimes feverish and just the body aches.
Then just my taste, everything changed. I had certain cravings, and then wanted to eat, but then I didn't want to eat. It was just very frustrating. I had nausea, yeah. It wasn't as bad as some people. I think I had more stomach pain, stomach issues than anything. Like stomach pain instead of like nauseating feeling.
Did anything help prevent or reduce the side effects?
I think sometimes the medicine. They had me on oxycodone. That helped a little bit. And then, not sodas, but drinks that were fizzy.
I tried to eat because I didn't want to get weak or sick, but it's just different how the body reacts. I remember one week I had cravings for chocolate donuts and french fries, and I never eat that stuff. But then when I start eating it, it's like it doesn't taste, it's bland.
Any advice to others on what can help with side effects?
Keep ginger chews handy. Just try to eat what you can, whatever it is, just whatever you can hold down. Part of the problem is if you don't eat then you get sick, and then you can't do your next treatment.
Were there follow-up scans after the surgery and chemo?
I didn't do any scans after. What happened is just office visits with my oncologist. And they felt that they had taken all of the cancer via the mastectomy.
Describe Tamoxifen, the hormone therapy prescribed after chemo
My oncologist just said most women do really good on tamoxifen, which I thought was for five years, but for me it's ten years. He said that women have a greater chance for the cancer not coming back.
However, there is that side effect of cervical cancer, and then he named a few other side effects: weight gain, early menopause, and side effects as that. And that's it. He didn't really say too much more.
It's a pill. Every day I take two tablets, and I hope the cancer doesn't come back. [I take it for] ten years.
Are there day to day side effects to the hormone therapy?
Joint muscle pain. It seems like I've already gone through menopause. And then weight gain. I have not been able to lose weight. So my doctor mentioned to me to try two weeks of getting off of tamoxifen or stopping tamoxifen to see if it helps, but it didn't.
Any advice to others who are about to go on hormone therapy?
I think just be prepared. If weight gain is an issue, just prepare to maybe change the lifestyle, more healthy eating whether it be plant-based or vegetarian or whatever it is that you can do to not gain weight, if it is an issue.
For the joint and muscle pain, I don't know, because as I'm dealing with it now, it's like I just don't know. No matter how much I have to tell my doctors, there still isn't a solution yet. I know some women, they do the CBD. For me, I can't because I'm subjected to random urinalysis, so I can't do it. So I guess whatever works for them. My doctor recently recommended that I try red light therapy. And I've done two sessions and I can't really tell you if it works or not.
III. Quality of Life
What got you through the toughest times?
Everything happened so quickly and then I started a new [work] position right when I found out that I had breast cancer. There was the stress of my boss [who was] very unsympathetic. I don't even know how to describe it but just some of the things that she would say. It's like do you understand I'm going through chemo right now? I don't think that's really, I was just numb. I think it's bad because I'm sure it's going to hit me.
What’s your advice to others on how to deal with the stress?
I think for me I'm more sympathetic and I can understand. And when I see somebody’s hair's coming back or they're bald and wearing a cap, I can reach out to them or say something to them because I know exactly what they're going through.
Describe the hair loss
I have pretty long hair and I have a lot of head shots because I'm a background actor so my hair was my identity. And then I was told 14 days after chemo you will lose your hair.
That was on a Sunday and I had to go to work on Monday so I called my friend. She was going through chemo at the time and I asked her if she could come over and shave my head. I didn't want it to happen but I didn't want to go to work with just patches of hair.
I think I'd be more devastated if my hair started falling out at work. She came over and she shaved my head. It was different but I think what really hit me is when I lost it all. She had shaved it short but then, I think it was like a few weeks later, it was in patches like I had to get it shaved like shiny, bald head.
What was the hardest part about the hair loss?
I think because it changed my look and I just felt like people were looking at me or staring at me. I don't know, I just felt really vulnerable.
And then having to go to work. I wore a baseball cap for the most part. Then I'm at work and my head is just burning up wearing this hat, then I take the hat off. Yeah, it was a vulnerable feeling.
What helped with the hair loss?
I think some of my colleagues just kept encouraging me saying that, "You look good. You have a nice looking shape for your head." Sometimes I would go without my hat. I think, in a sense, of me being vulnerable I still wanted to please others I guess, if that makes sense.
Did it feel good to go out without covering your head?
It felt good. I'm free. I think it's just funny how people are because after my mastectomy, no breasts, people would, I would catch them looking at my chest. That was before all my hair came out and then my hair came out and the same thing. I think then they would put two and two together and then others were like, "Oh, nice haircut." Yeah.
Any advice for others on how to manage the hair loss?
Just embrace it - the new you. And just know that it comes back and it'll come back curly.
People that know me, they're really shocked, and then others are like, "Oh, nice haircut. Oh, nice perm." I said, "No, this is my chemo curls," like I would get a perm this short!
Were there moments you had to advocate for yourself in and out of treatment?
No. I feel like I'm having to speak up for myself now which is pretty odd.
Just with some of the side effects that I'm experiencing. I don't know, it's really hard. I remember talking to my oncologist, great guy, he took time out in the lobby to talk to me and he answered every question that I had. He gets it but it just seems like because what I'm feeling with my side effects, that's really not his lane, it's now pushed over to another doctor in their lane and they don't get it. They don't understand my side effects and what I'm going through. I just don't know really what to do anymore.
Describe the transition to survivorship
There are some people that I've noticed, mainly people at work, they say that my hair's growing back so you're fine. But they don't understand that I still feel a certain way or I get tired during the day or maybe I can't think clearly. I think it's great that the hair grows back but at the same time it's like a person forgets that you just went through a life-altering experience.
What’s your advice to others on how to get support?
Everybody has different circles but I also feel that it's important to get involved in a cancer group because I can be honest and open with somebody who's been through cancer. They know exactly what I'm going through. We can help each other on that because my issue may be different than yours but it's the same whereas if I talk to somebody at my work they can agree but they don't really understand.
What got you through the toughest times?
It was difficult because when you have faith in God to get something like this happens, it's almost like, "Why, God, did you put me through this?" At the same time, I think without that faith in God I don't know really where else I would be.
Were you able to work through treatment?
I had to take a break in my second week, so the first week after chemo I worked, and then the second week when I was administering my shots I had to take a break because I started getting really sick and other people in my office were always sick. I ended up going to the emergency room a few times with temperature like a high fever.
If I had to do this all over again, I probably would've taken more than just a week off but at the time, my circumstances were a little bit different because I just started a new position. It was temporary but I was also competing for it. I felt like I had to be there otherwise I wouldn't have gotten this permanent job.
Did you get any financial assistance?
No. I am very fortunate because I have insurance. I was able to get medical financial assistance and then I had used all my leave, all my sick leave, all my annual leave but my employer has a voluntary leave. So what other members have done is they've donated hours and hours of sick leave to me so I could stay home on sick leave and still get paid. Without that I don't know what I would do.
What’s your advice to others?
Get checked out first. Don't miss those mammograms. Don't put it off. I've been preaching to people to get their mammograms. It's funny because some people don't want to do it because they don't want to get the bad news but I'd rather be for certain because look at me: I was healthy, athletic. I didn't think I was going to have breast cancer.