Jean Campbell Transcript

Jean Campbell Transcript 2016-10-12T17:57:24+00:00

Jean Campbell Interview

April 8, 2013

Amy Casher: Welcome to Symphony Sisterhood Breast Cancer dialogue. I am Amy Casher. We are talking today with Jean Campbell, executive director and founder of the nonprofit and affiliated blog, No Boobs About It. Welcome, Jean.

 

Jean Campbell: Thank you. It’s so good to be here.

 

Amy Casher: Today, we’ll be talking about navigating breast cancer and how this is changing with the increasing use of the Internet and with advances and personalized medicine and genomic testing. We’ll also be highlighting some of the wonderful resources that No Boobs About It offers to newly diagnosed women and men with breast cancer, as well as breast cancer survivors.

Jean, can you tell us a little bit about your own experience with breast cancer and what motivated you to start your No Boobs About It blog and subsequent nonprofit?

 

Jean Campbell: Surely. My first breast cancer experience was in 1999. A routine mammography picked up something suspicious for cancer. The subsequent needle biopsy was inconclusive, so it was time to do a surgical biopsy. I entered the procedure with the knowledge that it would be – whatever they removed would be evaluated while I was out on the table and if it was indeed, it was malignant, they would give me a lumpectomy, and they would not wake me up and talk to me about it.

So when I woke up, I saw this small little bandage and I said, “Oh, well, I guess it’s something benign.” Then I felt this pain under my arm and I found the second bandage, and that’s when I knew it was cancer because that’s where they did the

[Unintelligible].

So that cancer treatment was followed by 36 radiation treatments and then five years, once a day, on tamoxifen. About a year or so, two years, I suppose, after I had breast cancer, I became involved as a volunteer with the American Cancer Society. Then in 2005 or – yes, 2005, I began working for the American Cancer Society starting a patient navigator program for them in 14 city hospitals in New York. Then I was on the program, I think it was about 2009. In September of 2009, another routine mammography found something suspicious for cancer in my other breast. It was a second primary. So this one was extremely smaller, but it’s less than one centimeter.

I had opted that point in time after all the years of mammographies and all the tests and all of them, I just said, “I’ve had it. Take them both off.” So I had a bilateral mastectomy, no reconstruction, and did not require any further treatment after that.

So that was basically my two experiences with breast cancer. I think it was probably about three months after I had had my second bout with breast cancer. I was talking to my GYN and she said, “Between your two breast cancers and the fact that you had all that experience with working with the American Cancer Society and meeting thousands of women with breast cancer in the hospitals, why don’t you start a blog?” I thought, “I don’t know. In reality, there are so many women out there telling their story and sharing with people on the Internet, and I just don’t feel that there is anything I can contribute in that way.”

So she asked to think about it. I said, “Well, if I come up with anything that I feel would be worth my doing, I’ll think about it.” So then it was one of these things where people who knew people who were just diagnosed were saying, “Hey, can I call you?” Now that was pretty much doing patient navigation the way you just do it in the hospital via the telephone. I thought, “Well, maybe there is a need here.” I thought, “No, I’m not just going to tell my story and that’s it.” Basically, I want to provide resources because I was working on – when I knew personally I needed and when – during my two cancers, and certainly, what I learned from all of the women and some of the men that I met in the hospitals and what they needed when they were diagnosed, when they were going through treatment, when treatment was over.” So I’ve tried to pattern No Boobs About It after what I learned from those experiences with my years in the hospital. That was how I did it.

 

Amy Casher: How do you frame the different stages of navigating breast cancer?

 

Jean Campbell: I think the first one is just that sucker punch where you find out that you have breast cancer. You really need to be able to talk to people who’ve been there and who can kind of get you grounded for what lies ahead. So I would try it at the diagnosis and pretreatment. Then, of course, there is a whole treatment stage and all that you go through when that’s going on. Then there is that no man’s land where you’d go from active treatment to survivor and all of a sudden, you feel like you’ve been cut loose in space. So that’s kind of how I would look at it and then, of course, there’s that need in survivorship to reinvent yourself because once you have breast cancer, it’s pretty darn task to just pick up where you left off. You’re not the same person. You face a life-threatening illness and you don’t look the same to yourself. You don’t feel the same. Emotionally, you’ve been through hell and back. So it’s a very different place and time and it’s all about, “Okay, what do I want to do here? What’s important to me now? I’ve got to give myself permission to do that.” That’s basically how I would think of it.

 

Amy Casher: That certainly seems to be how you experienced it as well.

 

Jean Campbell: Yes, absolutely.

 

Amy Casher: Jean, there are an increasing number of online support groups, including American Cancer Society, Cancer Survivors Network, Breastcancer.org, MyBreastCancerTeam, the Symphony Sisterhood and many, many others. No Boobs About It is launching an online peer-to-peer support group in 2013 as well. How and why do you think online support groups work?

 

Jean Campbell: I think that there is a number of answers to that one. First and foremost is that unfortunately, we have over 200,000 plus people being diagnosed every year with breast cancer. There is no short supply of people who need support. I think that more and more people are turning to the Internet to get information and to find resources and support. I would call at the middle of the night when I think – I know I myself and other people and it certainly happened to me, where I will find out I’ve got e-mails in the morning. Someone wrote me at 2:00 or 3:00 in the morning that they couldn’t sleep and they really needed to write to somebody or talk to somebody.

I think that there is a certain anonymity to a support group that might be online, in terms of you don’t have to be physically present. Of course, you would always use Skype if you so chose, but I think there is this opportunity to share with people, especially if you have a rare form of breast cancer such as inflammatory breast cancer, where there may not be anyone with that particular type of cancer in a support group anywhere in your state.

I think sometimes, it’s very hard with people to be able to get out to support groups. I have certainly witnessed that in my years of being with American Cancer. We have the same people coming over and over again, and you get a few new people and then life gets in the way. Either you don’t see well enough when you’re in treatment to go to a support group, or you go to a support group as I did after my first cancer at Sloan-Kettering and it’s time-limited. It’s one week – 10 weeks that you’d go one time a week, one time a week. I just think that sometimes people need more than that. My feature – I think we’re going to end up more on the end of survivorship workshop and how to reinvent yourself and launch. I would always offer the surveys if someone wanted to talk that it would be an opportunity to do so. [So I’m just kind of] ironing that out. I’ve been doing some focus groups with people and finding out, “What do you really want? What do you really need?” So that’s how we’re working there.

I think the biggest challenge for anyone who is a provider is reaching the women who are so – it takes a certain awareness to get on the web and find support groups and feel comfortable doing it. I think of the thousands of women I met and spent time with as a navigator, and most of them either didn’t have access to a computer or were not comfortable using a computer or culturally were not comfortable with the concept. These are women who are pretty much [unserved]. For a while there, I had the site in both Mandarin Chinese and in Spanish. Eventually, that dwindled off.

What I would do in terms of support groups is if there are women who need another language, well, the bottom line is I do have those kinds of connections from my days as a navigator because we’ve had seven staffed people and 75 volunteers, all of whom were survivors. So that’s a pool that I can draw from. I’m not quite sure yet. The biggest thing is, “How do you outreach? How do you get the word out to these women?” That remains the challenge. It was easier going into the hospitals because they were coming in for treatment. So it was a captive audience.

 

Amy Casher: Right. How do you think newly diagnosed breast cancer patients and survivors can get the most out of these online groups?

 

Jean Campbell: That’s a tough question. I think people shop online. They look around and I think they probably go to a couple of different sites and see how comfortable they are. If they feel they would like to get into it once again, it takes a certain awareness and a certain sophistication to know how to look and where to look and how to utilize it. I think that you almost need referrals from an organization that has the trust and the ear of newly diagnosed. I know when I was first diagnosed, I called the 24-hour hotline at Y-ME. Of course, unfortunately, Y-ME is no longer around. They were wonderful. They were positively wonderful. This woman spent 45 minutes with me and she talked me right down into reality again. She had a laundry list of places that I could call and Internet sites that I could go to, as well as some warnings about, “Don’t believe everything you read.”

So I don’t know how many of those organizations exist. I know the American Cancer Society, and I don’t know who else is maintaining a hotline anymore. I know that most of them are maintaining limited time hotline, alright? So to answer that question, that’s a challenge.

 

Amy Casher: Switching gears just a little bit, you’re somebody who stays on top of the latest research in breast cancer testing and treatment. I’m curious, what are your thoughts about recent advances in personalized medicine and genomic testing for breast cancer?

 

Jean Campbell: I think that is a wave of the future that hopefully will be successful because yes, chemo works, yes, radiation works, but it’s a heck of ride. The side effects are brutal in many cases. So being able to have our own bodies stimulated to work to either prevent or cure breast cancer would be a godsend.

I hear all the time from people who are working on different projects, and I know that there is a couple who were working in clinical trials now on that thing. There are others who are talking about using various ways of stimulating our own bodies to react and protect us. I just hope it works because it just sounds so much more humane than what we’ve got right now.

 

Amy Casher: How are you finding access to new information about tumor biology and genomics, changing the way in which people are navigating breast cancer?

 

Jean Campbell: One of the ways is that I do subscribe to certain journals and I also am working with an organization out of Israel called [Medadvisor], alright? They do searches to find what’s going on. I am also very fortunate that now I’m getting phone calls from people who are in the field who are doing it. They are saying, “We are working on such and such. Would you consider allowing us to do a post?” I say, “Sure, I need to check it out, but absolutely.” It’s not as difficult and I am on a lot of the government feed, so that I do track that way. I track some journals, and I am getting responses from people working in the field.

 

Amy Casher: Yes. We hear about how some patients are more informed on the latest research than their doctor is. How does a patient deal with that? What advice can you offer patients when this happens?

 

Jean Campbell: I’m not sure I know what you mean.

 

Amy Casher: Well, let’s say a patient has been up all night doing research on the latest tests that exist and they’re not offered by their doctor. How do you advise…?

 

Jean Campbell: I think that – here is the bottom line. Unless you’re going to a cancer center which also does research, I don’t think that every doctor who is an oncologist or a surgeon is necessarily going to be as up on these things as a doctor who would be in a major treatment center such as John Hopkins or Sloan-Kettering or NYU or the hospital in Texas, alright? I think that the major cancer centers are the ones who hopefully would be the most current on these things. I think if someone goes in, the doctor doesn’t know about it, well, fine. It doesn’t mean the doctor is just out of it. It just means that he’s not up on that research. I think that a person, with the aid of the Internet, can certainly get the literature on it or probably give it to the doctor, and if the doctor is receptive to it. Some doctors are not, okay? If he’s not receptive, you might want to talk to another doctor.

 

Amy Casher: Yes, right, and get a second opinion.

 

Jean Campbell: Yes.

 

Amy Casher: So we know being diagnosed with breast cancer can feel very overwhelming and then one is faced with an overwhelming array of support services in the hospital, in the community, online and elsewhere. Are there different resources that you feel are more or less helpful at the time of first diagnosis?

 

Jean Campbell: I know what you’re saying, but I did not have the experience either time that I was overwhelmed with all these resources. Maybe it’s different where you are, but I’m sitting in New York City and my first time around, I wasn’t offered a resource once, alright, granted that was 14 years ago. I went to NYU four years ago. There were some wonderful things there in terms of making it easier for me to get through things, but I was not offered a support group. A social worker didn’t come see me and tell me about a support group. I used my own group of people that I knew through my navigator days. My fellow navigators were my support group. So I did not feel there was this cadre of support everywhere.

I did go on the web. Half of it doesn’t apply. Another quarter, you’re not too sure of, alright? So maybe there are a couple of sites that you’re comfortable with. No one has your specific type of cancer in your way, at your age, at your time, all these other things. So what you really need is a support group of people who are literally working [in the same task] so that you can identify, not compare, but identify. I also think that there has to be some guidance because I think that the level of anxiety that somebody has at the time of diagnosis and also I really don’t know how you can at that point in time screen out what’s suitable and not suitable for you. You don’t know.

The second time around was infinitely easier for me and much less stressful because one, I had been through it before, and two, because I had been with the American Cancer. I was an educated consumer. I had done navigation. I had lots of people I could turn to. If I compare my first to my second, my first, I didn’t know what was going on. I didn’t know where to turn. As I said, the woman from Y-ME just really was super. I think there is a tremendous need for hotline because when you need help, you need help. You can’t put meeting help on a schedule up. So I really, I don’t think I can answer that effectively for you because I haven’t had that experience and no one I’ve spoken to has had that experience.

 

Amy Casher: We have heard from a number of women who say that – especially the number of online resources or sources of information can be overwhelming. Like you said, not everybody has the same situation. In fact, no two situations are exactly alike.

 

Jean Campbell: Exactly.

 

Amy Casher: That is overwhelming because so much of the information, you’re not sure how relevant it is exactly to your situation.

 

Jean Campbell: Well, you don’t know where to turn. There is a lot of stuff out there, but how valuable is it? You’re not in the position to judge that. You really need some sort of a hotline connect with a viable organization that can steer you in the right direction, as far as I’m concerned.

 

Amy Casher: We are so grateful for your thoughts about how navigating breast cancer is changing with the increasing use of the Internet and advances in personalized medicine. That concludes our dialogue for today. We look forward to talking with you in the future. Thank you so much./span> 

 

Jean Campbell:You’re most welcome.

 

-End of Recording-