Issues Young Adult Cancer Patients Face

M. D. Anderson Cancer Center
Date: March 15, 2010

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Issues Young Adult Cancer Patients Face

Anna Franklin, M.D., and Daphne Cercado, 22 year old non-Hodgkin's lymphoma survivor, discuss the problems teenagers and young adults face when going through cancer treatment, and offer suggestions on ways to cope.

Lisa Garvin:

Welcome to Cancer Newsline, a weekly podcast series from the University of Texas, M.D. Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment and prevention, providing the latest information on reducing your family's cancer risk. I'm your host Lisa Garvin. Today we're talking with two people in our studio: Anna Franklin who is the Director of the Adolescent and Young Adult Program here at M.D. Anderson and Daphne Cercado who is a 22-year old cancer survivor of non-Hodgkin's lymphoma. And we're so glad that you're both here, especially you Daphne.

Daphne Cercado:

Thank you.

Lisa Garvin:

Anna, tell us a little bit about first of all we have a children's cancer hospital here, how many patients do we treat between like the ages of 15 and 25 which I guess is the adolescent range?

Dr. Anna Franklin:

Well there's 15 to 25 is a group we treat in the children's cancer hospital but there's also patients in that age group that are treated outside of the Department of Pediatrics. In terms of AYA oncology or adolescent young adult oncology, we consider it between 15 and 40. And in terms of that we treat about 12 hundred patients a year here. We see an additional 18 hundred patients a year for consultations and 1 time procedures and things like that.

Garvin:

What are some of the big issues for adolescents facing cancer? I mean there's obviously body image for sarcoma patients and so forth. What do you tend to deal with the most in your program?

Dr. Anna Franklin:

I think one of the big issues is you have these patients that are at that age where they're learning to become independent and becoming their own person. And all of a sudden they become very dependent again both, emotionally, physically, psychologically and socially on parents and friends. So just like other cancer patients where it becomes a shock when you receive the diagnosis, adolescents and young adults have that additional immediate transition back or regression to where they were which adds another layer of complexity to their care.

Garvin:

And it's such a tough time being an adolescent and being an adolescent with cancer is just...

Franklin:

Absolutely! It's challenging. I've had patients that are frustrated because it's 4:30 on a Friday afternoon and they have to go home an shower and get ready because they have plans on Friday night and they don't understand the importance of staying for another hour or so to finish their chemotherapy. That sense of immediacy and right in the moment is where they're living and they don't understand that spending an hour in clinic and getting your chemotherapy will give you many more Friday nights to go out and enjoy your time with family and friends.

Garvin:

And don't you have to deal with the invulnerability that most kids feel? I mean they're like, "Oh this is no big deal. I can do what I want."

Franklin:

Absolutely! You know most kids and young adults have never had a serious illness before so they think they can take some antibiotics, they'll be fine. They don't understand that their life is being threatened. They don't understand that you know they're going to be changes in their body and so it's challenging.

Garvin:

Daphne, as a cancer survivor you've been through this very thing. You were diagnosed with non-Hodgkin's lymphoma at age 20. Tell us about that journey. How did you find out and how did you react?

Daphne Cercado:

At first, I had been having consistent pain in my left arm and it wasn't until a roomy of mine at U.T. San Antonio had noticed that 1 arm was swollen compared to the other arm, so she said, "You should probably get that looked at." And so I went to the campus clinic to speak with a doctor there and I told him how long the bone pain had lasted which had been on and off for about 6 months to a year. And then the doctor there took one look at it and said that he needed to refer me to a specialist. That specialist took an x-ray of my arm and said, "You need to be prepared. This could possibly be cancer." And at the time that I was told that, I just really brushed it off because I just believed that cancer didn't happen to somebody my age. And cancer never ran in my family so there was no reason for me to believe that, that could happen to me. And then when that specialist came back to me, he said, "I need to refer you to another specialist. This person happens to be an orthopedic oncologist and he could tell you what this is." And so that orthopedic oncologist was named Dr. Williams and he said that I needed to have a bone scan and a biopsy right away. And when he told me what the biopsy was and that it would involve surgery and general anesthesia, that's when I really started to panic and really stopped myself and said, "Well what's going on?" When I had my biopsy, it was the first day of final exams for the fall semester, so obviously I didn't do well on any of my exams. Had to skip a day of exams and then like right at the end of the fall semester I was told that I had cancer. And it was a really big emotional crash for me because I didn't want to be dependent on my parents again. And it sucked because I was living in San Antonio at the time and I was just so used to the college lifestyle of just living carefree and just you know staying up till 3 am studying and everything. And so for me to have to go back home to be treated was just so frustrating for me because I knew that I'd have to be around my parents again and they would always worry about me and everything. So, that was just a really, really frustrating time for me because I didn't want to have to depend on anybody.

Garvin:

How did your friends treat you? And this is true I think of all people with cancer, a lot of times your friends are like, "Oh my God!" You know, they're afraid to say anything or you know they're maybe overly helpful. How did your friends react to that?

Cercado:

My boyfriend at the time actually created a Facebook support group for me online which was very sweet of him. And a lot of my friends responded and say, "Hey we wish you well." But I think you're right. They didn't really know how to react to it. And so during my treatment I really lost touch with a lot of my good friends and my roommates back in San Antonio because they didn't know how you know how to say things to me, what to say to me, and just how to be in that situation because this doesn't happen very often for people our age. So I lost touch with some of them and I was kind of angry with them for awhile, but afterwards you know they really explained to me, "You know, we don't know what to say to you. We don't know if you're going to be mad about it. You don't know if you're going to be like sick all the time. We just don't know." And it's really scary for them. So I mean like I forgave them for it and you know we're just now touching base with each other and just trying to move on with our lives.

Garvin:

And I know that that's a big issue. And do you deal with that in AYA about the emotional and physical isolation from their peers?

Franklin:

Absolutely! You know, it can be very challenging and some patients even you know don't want to continue their treatment because they think that's what's isolating them from their friends and family. They think, "Well if I don't come and get the treatment, then everything will be back to normal and fine and my friends will be okay." I had a girl who was in college on a basketball scholarship and completely lost touch with her best friends. And so she didn't want to come to clinic for her appointments because that would solve her problem. So it is challenging. We try to get these patients together, but it's challenging because you've got a small group of patients in each clinic. You know there's some in the sarcoma department. There's some in the leukemia department. There's some in pediatrics. There's some in a whole other building and breast cancer and in gynecology. So it's challenging because they are relatively small numbers to get them together to provide support, but that's some of the programming that we are working on through our program.

Garvin:

And I do know that you are trying to normalize their experiences as much as possible while they're here.

Franklin:

Absolutely.

Garvin:

Which includes education I guess to keep from breaking their education?

Franklin:

Right, so in terms of high school we for patients still in high school we have a whole education program that makes sure they keep up with their classes. For those that are in college and other post high school training programs, we have vocational counselors that are excellent and have plenty of resources to make sure that these patients can keep up with their life goals in terms of completing degrees or training programs and other things.

Garvin:

And Daphne, did you have to take time off from school?

Cercado:

Yes, with that fall semester because I missed so much and most of those classes were pass or fail with midterm and final, well since I bombed all my finals I took 2 F's that semester: very upsetting. And then for the spring semester after, I was in treatment the whole time so I wasn't in school. And I didn't know that I could take a medical leave of absence at that time so basically UTSA has me as me skipping a semester and then dropping out of the school. I didn't know that I could have taken care of that beforehand but at the time of my diagnosis I wasn't thinking that far ahead. And so I spent 8 months in treatment and then I came back in the fall 2008 semester and my doctor recommended that I only take 6 hours this semester and then 9 hours and then 12 hours for a full time. And so I've been doing that now. It's been a struggle because all of my friends that I went to high school with are graduating this semester and I'm still a year and a half behind. So it's been very frustrating for me to see everybody move on and I'm still kind of dragging along.

Garvin:

And did M.D. Anderson -- well did your stay at M.D. Anderson kind of help you come to grips with some of these emotions and some of these issues?

Cercado:

Yes, my oncologist was very helpful towards me. She actually referred me to the AYA program here but I just never followed through with it. One of the things that was really hard for me was to sit in the lymphoma clinic and see that everybody else there was at least 20 or 30 years older than me. It was comforting to see you know just going around the hospital that there were people my age walking around without any hair as well. And it was comforting to know that I wasn't the only one here. I was you know 20 and just having to deal with cancer.

Garvin:

Did you find solace in some of the other patients your age that were going through the same thing?

Cercado:

I never had the opportunity to talk to any of them because you know there was no common ground. There was no place to meet all at once for just adolescents and young adults so I never really met anybody that was at my age and had cancer.

Garvin:

Well I know that we're trying to do things in AYA in the program to kind of help that. I know Kim's Place is kind of meeting place for them but...

Franklin:

Right and we've recently increased the age to patients and family and friends up to age 30. But we're still working to find a way to get these patients connected while they're here rather than after the fact like Daphne. And some things we're working on are potentially a social networking site, particularly for in-patients so that when somebody feels up for company, you know you're not always feeling like having company when you're in the patient in the hospital getting chemotherapy. So if somebody feels up for company they can just put a message on the networking site saying you know, "I'm in Room such and such. If you want to go grab a coffee, send me a message."

Garvin:

And let's talk about social media. I mean there's been a precipitous rise in social media in just the last few years and it seems like the patients you deal with are the ones most likely to be using social media.

Franklin:

Definitely!

Garvin:

Have you found that to be a big help and support?

Franklin:

We have. We have a Facebook page called Young Cancer Connection and we communicate with quite a few patients that way. And our patients even find out about our programs that way. But also a lot of my patients bring their laptops when they're in the hospital so they can stay connected with their friends and family through things like Facebook and other instant messaging and texting.

Garvin:

And Daphne, as you are now a cancer survivor and moving on with your young life, is there anything you can say to people who may go through the same experience as you that may help them get through it?

Cercado:

There is no reason for a patient to believe that their life will not move on after cancer. I think that's what really got me through the whole thing was I set high goals for myself and I have a lot of ambitions that I want to take care of. And I have a lot of goals that I want to achieve. And for some reason, I just never acknowledged the fact that there's no reason I shouldn't be alive 5 years from now. Five years from now, there isn't any reason why I won't be going to France and Italy and all the trips that I want to go on. And there's no reason for me to not be in law school. Cancer's just one speed bump in the road. You don't have to stop for it. You don't have to lose your life over it. You can just move on. It's okay.

Garvin:

That's pretty good advice. Can you add any advice to that as a professional Anna?

Franklin:

I think you know again maintaining some sense of normalcy. You're not going to be able to do everything you want to do while you're actively being treated, but you can still go out. You probably shouldn't go to the big crowded areas when your counts are low because of the risk of infection but you can have a few friends over. You can go to the park. And you know doing what you feel like you're capable of doing while you have cancer to keep moving forward. I think also maintain a level of hope and it helps you get through treatment rather than sitting at home by yourself, wallowing in self pity. I think patients that keep some sense of their normal activities tend to have a better experience.

Garvin:

So try to be as normal as possible even though you may be bald or not feeling good.

Franklin:

Yes, and even though your parents may want to treat you like you know you're 10 or 11 even though you're 20.

Cercado:

Oh gosh.

Garvin:

I didn't even think about that yeah because they treat you like you're just a China doll.

Franklin:

Right, they just want to protect you but I think one of the conversations I have with parents and patients is, "Yes, you are a cancer patient however you're still a young adult and you should still do the things that young adults do." Go out with your friends. Go to church. If you can keep up with some school, keep up with some school. If not, you can pick that up again later.

Garvin:

Daphne any final thoughts about handling your social interactions with your friends?

Cercado:

Facebook is okay and even if you know your friends don't know what to say, you can still reach out to them and you know just say "Hi" and what's going on in their lives. And they're going to ask what's going on in your life. And it's okay for them to ask questions and it's okay for you to answer them. If you feel like, answer them. Like answering them, it's okay. And instant messaging and text messaging works the same way before you had cancer. So it will still work when you have cancer and you can still use it to stay in touch with people.

Garvin:

Excellent advice, from the professional, and the cancer survivor. Thank you ladies for being here today!

Cercado:

Thank you.

Franklin:

Thank you.

Garvin:

If you have questions about anything you've heard today on Cancer Newsline, contact Ask M.D. Anderson at 1-877-mda-6789 or online at www.mdanderson.org/ask. Thank you for listening to this episode of Cancer Newsline. Tune in next week for the next podcast in our series.

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