[Narrator]

During the extended survival stage, you may also need to deal with other health-related issues. Besides looking for signs of cancer, you may be living through lingering side effects from your original treatments. These side effects may include a lack of energy, weight loss or weight gain, or numbness in your fingers and toes. While these types of side effects are usually temporary and go away on their own over time, they might keep on reminding you that you have been sick. Although only time will tell, these lingering side effects will usually disappear within a few months. Some survivors, though, have to learn how to live with permanent changes in how their bodies look or function. These changes might include the loss of a breast, a leg, or other body part, or a change in body function, as with a colostomy. They could also include scars, radiation "tattoos," or damaged sexual organs. Some survivors may need extra help adapting to these changes. So, referrals from your oncologist to a rehabilitation specialist or mental health counselor may be helpful. Just remember that not everyone has the same side effects, nor do the side effects go away at the same rate. Your doctors and nurses can help you monitor your progress. And other cancer survivors can help you understand what life after cancer looks like.

With that in mind, let's hear from two survivors, Alisha and Kevin, who met in the waiting room during follow-up visits to their oncologists.

[Alisha]

When I was younger, I expected that my first couple of years out of college would be all involved in starting life as a real adult. You know, thinking mostly about really big things, like what kind of job I would get, where I would live, what it would be like to be for me and my friends to finally be on our own. But, first my diagnosis of Hodgkin's disease—it's a cancer of the lymph nodes—and then my treatment changed all that. I finished a full course of chemotherapy a while ago and had my last radiation treatment 3 months ago. So, now, I realize I'm a cancer survivor, and it's a whole new world.

[Kevin]

I'm proud to say I'm a 9-year cancer survivor. One thing I have learned -- and really come to appreciate so much -- is how important the bond between survivors can be. Sure, we're all individuals and our types of cancer and treatment histories may be different. But, we've all faced the same big life-and-death questions that most other people have not. Talking with other survivors is such a life-affirming experience for me. You connect on everything from major issues to pretty specific questions about treatment side effects. Since I got my diagnosis of Hodgkin's disease when I was 21, just like Alisha, I think I had a pretty good idea of what kinds of questions she might have. At that stage in life, you're concerned about how you look and how your friends and other people see you. Alisha asked me lots of questions like, how long did it take for my hair to grow back? Did it look and feel normal? Or, did it grow back a different color and texture? Another issue was weight. Was I really thin when I finished my treatment? How long did it take to put on some weight again, so I didn't look sick anymore? What did I eat? Could I exercise? Another question she had was about bruising. Did I bruise easily, and, if so, what did I do about it?

[Alisha]

Since I was planning on starting a new job, I needed to know what to expect. Would I keep on feeling really tired or would I get my energy level back? I asked Kevin if he had anemia from his therapy and whether he needed treatment to boost his red blood cells. I had experienced "chemobrain" and was worried that it might affect how I could work. How soon could I expect to start thinking clearly again? I knew that my white blood cell count was low, which could lower my resistance to infections. Since this new job would require me to work with a lot of people all day long, I wanted to know if I'd risk getting lost of colds. So, I asked Kevin if his doctor told him to stay away from large groups of people or children to avoid catching colds or the flu after he finished his cancer treatment. Had he gotten many infections? And, how long did it take for his white blood cell count to get back to normal?

I also wondered about the numbness in my fingers and toes. I asked Kevin if he had experienced that, and how long it took to go away. Finally, even though it's a personal kind of question, I wondered what Kevin's doctors and nurses had told him about the possible effects of his treatment on whether he could have children in the future.

[Kevin]

I really felt good talking with Alisha about her questions. It's perfectly normal to feel worried about these things. It's also important to remember that, though many of us face the same questions no matter what type of cancer we survived, we each recover at our own pace. So, I suggested other ways for Alisha to get answers from other people, too. For me, that starts with my doctors and nurses. I found that it really helps to write down your questions between checkups so you'll remember to ask them all your questions. I also told her about the books, listservs, websites, and specialty clinics I had either accessed or heard about from other people. Maybe these would help her, too.

[Narrator]

Simply talking to someone who's "been there"—a veteran survivor—helped Alisha deal with her anxieties, feel a bit more secure, and start visualizing a future beyond tomorrow. She's starting to see the world of the permanent stage of survival in which Kevin and other long-term survivors live. It's difficult to describe just when this stage begins. It tends to evolve gradually over a period of years. You eventually begin to think less about cancer and feel more secure about the future. You start feeling comfortable in your body again, or you feel like you have adapted to changes that you must live with.

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