Ellyn Ruthstrom: Breast Cancer Survivor

Ellyn Ruthstrom was diagnosed with breast cancer on July 6, 2005. She was 45. Close to a year later, Ellyn is almost finished with her last rounds of chemotherapy for this stage of the treatment. She will be returning from her close to three-month leave of absence as the editor-in-chief of Teen Voices at the end of June. And she’s ready to get back to publishing more kick-ass teen-written features for teen women everywhere. Here’s Ellyn…

Did you find out during a routine breast exam, or did you notice a lump in your breast?
I found out because of a mammogram. It took them a while to figure it out. It was kind of weird. I had the mammogram in April and then I had requested my baseline mammogram to be sent over to where I got my mammogram done, and they never did it. I had to call them again and have them send it over. And that took quite a while. Then in June they finally called me and said, oh, we see something on the mammogram, we want you to come in and get a biopsy. And then, when they did the biopsy, that’s when they diagnosed the cancer.

What stage was it in?
Stage 2. [Breast cancer stages are classified from Stage 0 (very early form of cancer) to Stage 4]

And what’s a baseline mammogram?
A baseline mammogram is the first mammogram you have. So, like when I was 39 or 40, I went in to get a mammogram. And so every future mammogram that they have, they compare it to that one so they can tell if there are any changes in your breast.
That’s why, usually, if you don’t have any reason to have a mammogram, or if you don’t have a history in your family, you usually have your first baseline around the time you turn 40. [If you have a history of breast cancer in your family, you need to discuss with your health care provider getting a mammogram at an earlier age]

What did you do after you were diagnosed with breast cancer? Where were you?
Actually, it was pretty weird. My general doctor called me and I was at work. She had called me, and I had called her back—we were playing phone tag—and finally she got me and she had to tell me right then on the phone that I had breast cancer. I was freaking, and just so crazed. Then I went outside of the office and I called my girlfriend and told her and she said, just go home and she’ll be there. And then I told my boss that I had to leave, and I did. Then I went home and crashed. [Laughs]
It was kind of weird though because it takes a while for you to really face it. At least I did. I talked to a lot of other women who say that it did for them, too.
I came home and was alone for a while before my girlfriend got here, and I was thinking and thinking about it, and I cried. But at the same point, I wasn’t deeply depressed. It was like settling in for a while. But I really feel like I was going on automatic for the first week. I really just kept doing the things that I used to do. I just didn’t take it in very quickly.
When do you think you did start taking it in?
[Laughs] I think probably when I had the first surgery. It was finally like, oh, my god, this is real. [Laughs] You’re really doing this to my body. And I think by then I had started doing a lot more reading and understanding what was going to happen to me during my treatment. I think at that point, when the treatment started, I was like OK, I guess I really do have cancer. [Laughs]

Did your body feel different after you were diagnosed?
No, and a lot of people don’t. In fact, I didn’t even feel anything in my breast. I’m going to throw out a statistic, and I don’t know if it’s going to be completely accurate, but I think that 35-40% of breast cancer cannot be felt. I remember my doctor telling me that. A lot of breast cancer cannot be felt when you do your personal exam, or when a doctor does an exam. [Breast cancer doesn’t usually cause pain in the early stages and there may be no symptoms early on]
There was nothing physical [for me]. Like some women have breast cancer, and there are a lot of visible signs. Like their breast is inflamed, and everyone knows about the lumps that you can feel. And sometimes there are visible things and you can sense there’s a change. But no, I felt perfectly healthy. I think that’s definitely why I was in denial for a while. They’re telling me I’m sick. They’re crazy. I didn’t feel sick.
But then when I realized that I would have to go through chemo and make myself sick, I was like, oh, this is screwed. [Laughs] It really didn’t make sense to me.
How did your family react?
My family has been really wonderful. My sister lives not too far from me in Massachusetts, so she’s been a good support for me. My father and my brother live in Connecticut, so they’re not as accessible for daily kinds of things. But my dad has come up to see me after some of the surgeries and has been really supportive.
My sister had a kind of reaction that was very much my sister. [Laughs] And I think some people have this type of experience, I’m not the only one, where at first it was almost like she had breast cancer—she was giving me all these resources, and all this, ‘You should do this. You should do that.’ And I really had to feel like I was making my own decisions. It was great to get resources. It was really helpful. But I really needed to feel that it was about me and my decision. I know that for her, her desire was to help me. And I know it came from a good place. But at first it was like, OK already. [Laughs] But she’s been really good.
And how about your girlfriend, how did she react?
Aw, man, she’s been like a rock. She’s helped me through the whole thing. Physically, through the chemo and the surgeries, she’s always been there. And I think [Laughs] she’s best when it’s been the real worst. She really comes through. And she’s allowed me to vent, and say what I need to say, and it’s been wonderful.
It’s been hard though. It’s really hard on a relationship. But it’s really been a growth experience for us, too. And that’s been really great.
And besides her, I have this incredible network of friends that I have been so blessed with. In fact, I said my sister kind of wanted to get more involved at first. But when she realized that I have this great network of friends who have been ready to step in and take me to chemo, and take me to appointments, and do stuff—she was amazed that I had that. And it still amazes me that I have that.
I have friends that call me to see how I’m doing. I have an email list that I send out and tell people how I’m doing. They send me cards saying, “Hey, I’m thinking about you.� I feel like when you have a little bit of connection going on with people, you don’t have to talk to people all the time. Because sometimes, especially when you’re going through chemo and stuff, you just don’t have the energy to do a lot of socializing and keeping up with people. So, it’s just so nice when people can feel they can give you support but not expect something in return. I found that really important.

Do you think your network of friends has been the most helpful thing so far?
Oh, yeah. Definitely. Definitely to keep my spirits up. And when I was able to socialize with people, to know that they were there, and that I could just call somebody up. One particular time I was pretty sick, and called a couple of friends and said, would you bring me over some soup? And they did! [Laughs] So, that kind of stuff is just so helpful.

What has been the least helpful thing?
[Laughs] I think people have to learn how to be supportive sometimes. I haven’t had someone close to me deal with cancer before, so this is a real learning experience for me, and I imagine that that’s true for a lot of people. Sometimes some people ask you a lot about treatment things. And you might not want to talk about it. For me, especially, I had a very strong response when I was going through the first half of my chemo. I would literally get physically sick if I was going to tell somebody about it. I had to start telling people that I couldn’t talk about it. I would physically get nauseous and would have to sit down. It was just so close to the surface for me. And nobody would have known that. I just had to say, “I know you mean well, but I just can’t talk about it right now.�
I talked to some other women, and they kind of feel that, too. Like, you’re going through chemo, you don’t want to keep revisiting it that often. So it’s great when people check in with you and make sure you are OK, but I guess what I’ve learned is that if the person themselves doesn’t bring it up, or bring up the details, don’t try to get a lot of details out of the person. They may need a time to talk about it: “Oh, my god, my last chemo was awful.� But if they don’t really offer it, try to be considerate that some people might not want to talk about it too much.
Have you joined any support groups?
I have started going to a support group now. When I was working full-time, I had looked into trying to find an evening group but I couldn’t find one that was convenient for me. So now that I have been on leave for a little while, I’ve been going to a support group that meets during the day.
It’s good. I’m the youngest person [46] in the group. I think it can sometimes be a common experience for women under 50. Thankfully it’s not as common in younger women, but it’s definitely not uncommon anymore either. I don’t know what the statistics are, but the majority of women affected by breast cancer are definitely over 50, and even over 60. [About 77 % of breast cancer diagnoses occur in women age 50 and older]
I would like to find a group that has younger women in it. And I’ve also been looking to find a support group for queer women. I don’t mind being in a group of straight women. But there are some different issues that come up. I’ve found that the whole body image thing is sort of different for straight women.…But I had looked into a local place—Fenway Health in Boston—it has different groups, but when I called about it they currently did not have one. They put me on a waiting list and said it’s very cyclical. They get a group and then people fall off, and then they get another group together. So I’m waiting to hopefully get into a group there.
My girlfriend goes to a support group at Fenway for partners of women with any kind of cancer. And that’s been a nice space for her.
So you mentioned body image issues come up in your group. How do you think body image issues differ between many straight women and queer women?
I guess one of the major things—and since I haven’t been to a support group with other queer women, I guess I don’t have a comparison. [Laughs] But I kind of have a sense from talking with Claire [girlfriend] because she’s been talking with a lot of the partners of women who share their experiences [with breast cancer]. One of the major things that I’ve found that’s different is the whole idea about breast reconstruction. There’s a loss of a breast if a woman has to have a mastectomy. But I have sensed that for straight women, that can be a much bigger thing. And like I said, I don’t know if that’s true or not. But I was really amazed by the ways the women were talking about their desire for reconstruction.
And reconstruction is a whole other thing. It’s a more complicated surgery. It’s painful. All these things that for myself, I was like, I don’t need that. I don’t need to have more pain and such in my life in order to feel whole.
Another thing I will mention, for me, it was so fabulous to go back and reread Audre Lorde’s The Cancer Journals. I had read it, probably 15 or 20 years ago, and then I read it before I had my mastectomy. It spoke to me so deeply the way she talked about her body, and the way she talked about societal pressures and all of that. It was really great.

Do you feel like the only one in the group? Do they know that you have a girlfriend?
Yeah. As far as I can tell, nobody else has self-identified. So, as far as I can tell, they’re all straight. And they know I’m not. [Laughs]

So you had a mastectomy. How was that?
Yeah, I had the mastectomy April 7, 2006. I got over the surgical part of it, I think, pretty well. I definitely used the pain medication to get through the beginning part, and so I don’t feel like I had a lot of pain. I know that some women do, so I felt pretty lucky.
[Laughs] I had to really psyche myself up for it. I literally said goodbye to my breast, wrote a poem to my breast, and I had a ritual. [Laughs] My girlfriend and I took pictures of my breast. [Laughs] And so it definitely was a very conscious thing of saying goodbye.
The part that was hard sometimes for me was you have a drain after the surgery. I had never had drains before so this was new to me. A drain is like this tube that’s sticking out of your body. For me, it was right where my breast had been. And the tube comes out, and at the end of it is this kind of collecting bulb. Fluids come out of it and gather in the bulb, and you have to empty it. [Laugh] Yeah, it’s really gross. [Laughs] You have to kind of get used to it pretty quickly. I had the drain in for about 10 days. So that was the most difficult thing because I had to pin it inside my shirt, and it had to go everywhere with me. So that was pretty weird. But once I got the drain taken out, physically I just started to feel so much better. I just felt like I could go places again. I didn’t have this horrible thing under my shirt. [Laughs]
And then you have to deal with the whole experience of how you want to go out in public. They have different prosthesis that you can use. They have a bra you can put it in. In the beginning, they suggest you use this puff prosthesis that is very lightweight so that if your skin is still healing, it’s not going to irritate it. And since I’m in radiation right now, that potentially could irritate my skin, too. So I usually wear the puff. And then you can go in and get a more, I guess, realistic prosthesis. It has more weight to it like a real breast, and it feels more like a breast. And then you fit those into special bras that have pockets to it and you put them in there.

Wow, I never heard anyone talk about this before.
Yeah, there’s this whole industry that you wouldn’t know about. But as soon as you start looking it’s amazing what’s out there. I went and got a bathing suit that you can stuff a prosthesis into. Bras, little special camisoles, there’s all sorts of things. And there are different kinds of prosthesis made out of different material. It’s amazing. And a lot more of the more regular kind of clothing people are starting to make more things that have built-in pockets so that women with prosthesis can use their clothing.

Do you have to order all these things online?
You can. But some of it is covered by your insurance. With the insurance that I have right now, I can order two bras every seven months and one of the realistic prosthesis per year.

That’s good. Are they pretty expensive?
They’re very expensive. Some of the realistic prosthesis are like 300 bucks for a boob. [Laughs] The puff is a lot cheaper. The place that I go to is the Friends Boutique at Dana Farber. A lot of the hospitals that cater to breast cancer patients have these breast cancer boutiques where you can go in and they have volunteers who talk to you and help you get fitted for different things. They also give you these free kits very often. Like when I first went in, I was about to do chemo and I was losing my hair—they have different scarves and hats. They give you this free little kit that explains all the different things you should know about chemo. And then this time when I went in, they gave me a free bra, and the puff, and more information about the different aspects of having a mastectomy.
And the people there are wonderful. I had been fitted for a wig, which I didn’t really wear. I just wanted the experience of one. There was this wonderful woman there who had been doing this for quite a while. And the woman who had fitted me for the prosthesis, she had been doing that for about 20 years. They just have this great sensitivity with what you’re going through. It was really helpful.

How was it telling your employer that you were diagnosed with breast cancer?
It was kind of weird. The day after I heard, I did go in and said, I have something to talk to you about. And I told her I was diagnosed with breast cancer, and that I didn’t know everything yet about what my treatment would be but that I knew that it was something that was going to be affecting me and the amount of time I was going to be able to put into my job. I have a really demanding job and I was used to putting in a lot of overtime. But I was like, well, that’s not going to happen anymore.
She was supportive, and said that obviously I needed to do what I needed to do, and find out what I was going to be doing. And just that I had to deal with it. At other times during the process, I would say that I have felt less supported. But I think the organization as a whole, and the people in the organization, have been extremely supportive.

Did you find it difficult afterwards to balance your work and your health?
It’s kind of a strange thing because I really got a lot out of it, having to keep working. I think it helped me psychologically to keep working. And especially since I work with teens, and I work with college women, I get a lot out of their energy. And it was helpful for me not to sit at home and think about myself. And not think about, oh god, I feel awful. So I definitely think it helped more than it hurt. But certainly at times it was physically demanding. After the diagnosis, I had gotten a laptop because I thought it would be really helpful. So a lot of times I got on my laptop and worked from home when I had to.
At different times I was blessed with some great interns who really helped with certain things. I had an intern last summer who was just so great, and who just helped me get through the beginning part.
Hey, did you watch “The L Word� last season?
I did.

So what did you think about Dana, and the show’s portrayal of her battle with breast cancer?
I had some really bad reactions with the way they dealt with Dana and being diagnosed with breast cancer. I personally feel that the producers just wanted to get rid of Dana. They just wanted to kill her off and they decided to do this dramatic thing with breast cancer. I think it was really cheap and cheesy, and really did a disservice to our community in dealing with breast cancer.
And I heard a couple of people say, “Oh, Dana died from breast cancer.� No, she didn’t! They don’t really tell you what she died of. It was all done in this mysterious way where she has chemo, it appears she comes down with some infection, ends up in the hospital, and dies. And it’s not to say that never happens. You could get an infection during chemo and you could die. It’s not very common. Especially if she was getting good care, [her breast cancer] would have been managed much better than that. So the whole thing that she died from breast cancer was crazy.
I also didn’t like the way they had her react to the diagnosis. And I know that lots of people can have lots of different reactions to a diagnosis. But I just found that with the kind of character that she was—a highly competitive, athletic woman who is very much about her body—I have found from my experience, from hearing and meeting women who are like that, they’re very much about fighting it and getting back to feeling strong and better as soon as possible. I just thought it was very odd how they chose to make her be in this kind of victim-mode. And that she got all depressed and angry at people and went into this retreat kind of mode. I think some people kind of do that. But it just didn’t fit with the type of woman that she was.
And I didn’t like the way she was secretive. She’s got this great network of friends, supposedly, and yet they kind of didn’t show that. I felt like, man, if that was my group of friends, I would be really out of luck.
But I just felt like they were doing it for dramatic reasons. And I thought that was really awful. So I was extremely disappointed in the way they did it, and I don’t think they got much of an educational purpose out of it.

Do you think they showed the complexities around Dana being a queer woman living with breast cancer?
Well, I definitely got confused. Like at first, they have her family—this again I think was just done for the plot line—because I thought her family from the previous season had come to terms with her being a lesbian because when she was going to marry that other woman, Tonya, they were all, oh, isn’t this wonderful. And that was the end of it. So it was very strange to have them all of a sudden walking in and saying you can’t see my daughter. It made no sense!
I think maybe they were trying to show that this does happen in some hospital situations, where the family has more power over the person and that they can do things that maybe their partner can’t. But it didn’t make sense with her character again. And where was her brother [who is also gay]? [Laughs] It made no sense. And then her family just disappears, and they’re not even there when she’s in the hospital with an infection. I just think the whole thing just fell apart. They did a really bad job.
I’ve been really lucky with the doctors, and even the people working in the hospital. And it was really great when I first went to my oncologist and I introduced my girlfriend to the doctor and she was just so accepting of her, that she was going to be the primary person getting me through my treatment. I remember this one day, it was really cute. Claire was nervous about this certain feeling that I had in my side. She was pestering the doctor and asking her if she would look at it. And I kept saying, “I’m fine, I’m fine.� And the doctor, she said to me, “Oh, it’s alright, Ellyn. Family is like that.� It was just so sweet, you know. And the same thing with my surgeon, she was just very accepting that Claire was this person that was going to be with me all the time, when she needed to be. I am very glad that I don’t feel that I had bad experiences in healthcare.

Do you think there’s a good amount of breast cancer awareness in the US?
I do think there’s a lot more, certainly than in the past. But unfortunately, the statistic is that 1 in 8 women at one point in their life will experience breast cancer in this country. That’s a huge statistic. So I think it’s really necessary for women to be aware of things. In fact, in the support group today, we were talking about the fact that some women really want to figure out, “How did I get it? Why did I get it?� That hasn’t really bothered me as much. Because there’s so many different ways you can get it right now. There seems to be some genetic thing for some women. But then there’s this whole theory that there are a lot of environmental factors that might be increasing cancers through food or pollution. Stress is also often talked about as a factor. One of the women said she heard there was a high incidence of women who were thin when they were younger and gained weight in middle age. She said it was a higher rate than obese women. Depending on what you read, some people say that with obesity, there is a connection with estrogen. It’s not that you have extra weight, generally. It has to do with the production of estrogen in your body.
There’s a lot of different theories, and so you don’t really know how to live. I mean, here I am, I’m a vegetarian, and I haven’t eaten red meat or poultry in over 30 years. And some people relate it to the stuff that is put into meat. Well, that doesn’t have to deal with me. So there’s so many different things.
I think the more you hear about it, possibly the more you can do to prevent it. But at the very least, you could increase the fact that women will get mammograms, will get seen by a doctor quickly if they think there is a problem, and hopefully get treatment quickly.

What advice do you have for women who just found out that they have breast cancer?
Talk about it and be fairly open about it with different people. And really try to read a lot to find out more about breast cancer. In the beginning, I found it was good to feel that you’re knowledgeable.
Also, somebody had suggested to me to bring somebody with me to my doctor appointments because you’re still freaking out in your mind. I found that to be really helpful. The person can help you ask questions, and definitely have the person take notes. Also, it’s really important to feel comfortable with your doctor. There are a lot of doctors out there and if you don’t feel comfortable with this one, get another one. That’s so important. And get information about the doctor. Don’t feel bad about asking them questions like how many surgeries they have done. They need to share that information with you, and you need to know it. And if you feel like you need a second opinion, get one. I did wonder if I did but I felt really comfortable with the doctor I had and needed to get into treatment really quickly. But if you hear something that doesn’t sound right to you, you should get a second opinion.
I’m at the half point of my radiation now—the last major part of my treatment. I’ve heard that you get an odd let-down feeling after treatment is over. It’s like during treatment you feel really good about doing something about the cancer. But then after the treatment is over, it’s like you’re waiting for bad news of a recurrence, and you can’t do anything but wait.
I definitely want to get back to feeling like I want to lead a regular life again. It’s definitely changed my life, and I don’t expect to or want to get back to the life I had. But I do want to enjoy the things I enjoy.
I had surgeries between the chemo and the mastectomy, and after finishing the chemo, I just wanted to feel better. I felt like I couldn’t get back to the rhythm of my life. But now, I want to get back to feeling strong physically, and open up things in my life that I haven’t been able to. What it comes down to is breast cancer is a life-and-death thing that comes up for you, and you have to figure out what you want to do with the rest of your life. It makes you face a lot of things that you didn’t face before about your life.