Transitioning from cancer patient to cancer survivor

When patients end treatment, they often report feeling lost, abandoned, and unsure of what to feel and do next. End-of-treatment stress is often unexpected because patients anticipate feeling relief when active treatment ends and hoping they can “get back to their lives.” The transition from cancer patient to cancer survivor can be very challenging.

I am thrilled to announce the launch of our fall Cancer Transitions Program funded with the grant we won from LIVESTRONG (Lance Armstrong Foundation).

Check out the article I wrote on "Combating end-of-treatment stress" while I was in Austin for training.

This is a six-week program (Oct 10, 17 & 24, Nov 1, 7 & 14)) with a one month booster session Dec 12.  We will meet from 6 - 8:30PM on the Providence St. Peter Hospital campus.  Dinner will be served.

Please forward this information to anyone you know who has completed active cancer treatment and is looking for tools and resources to successfully transition to the next phase of survivorship. 

Please contact me if you have any questions or would like more information.  Thank you for your support!

Coping with cancer paranoia

As a cancer survivor, I worry about getting cancer again. But I worry even more about my kids getting it. When my first child, Will, was ten months old I noticed tiny red spots on his arms. In a panic, I rushed him to the pediatrician. (Red spots on my legs – which meant my blood wasn’t clotting properly – were one of the first signs of my childhood leukemia).

The doctor reassured me that Will’s spots were harmless. He also reminded me that cancer in children is really quite rare. Rationally I knew he was right, but I also knew better than most that – yes – it may be rare, but it does happen.

My next scare happened a few years later with Will’s younger brother. My husband and I noticed a lump on Jonathan’s lower left leg. I googled “kids, lumps and cancer” on the internet. Sarcoma came up – a cancer of the soft tissue. What I read about sarcomas in children was not good. My stomach started doing somersaults, and the rest of me felt like crumpling on the floor and pretending this wasn’t happening.

We took Jonathan to the pediatrician, who wasn’t as reassuring as he was with Will. Instead he referred us to a surgeon at Children’s Hospital. When we saw him, the surgeon couldn’t immediately diagnose the problem, so he recommended we bring Jonathan back for testing.

After a long week of waiting, an ultrasound showed no sign of cancer. The lump was, weirdly, caused by an “unidentified foreign object” – possibly a splinter of wood – that had lodged in Jonathan’s leg. Since there was no infection or pain, he would not have to undergo surgery or treatment…big sigh of relief.

With the latest kid crisis behind me, I was free to leave the hospital. But I wasn’t free of my cancer paranoia. My kids, unfortunately, aren’t the only recipients. My husband has been victim to it, and if my parents, brother and nieces lived closer, I’m sure they would be, too.

Not surprisingly, I also turn these fears inward and worry about getting cancer again myself. Any odd lump, spot or pain in my body can send me into high-anxiety mode. I went online and typed in “cancer paranoia” to find out if others experience this, too. Many results came up. Some were from people who’d never had cancer and were terrified of getting it; others were from survivors who’d had it and were terrified of it returning.

I couldn’t find anything about transferring cancer paranoia onto family members, but I’m guessing I’m not alone. Fortunately, in my own family, my husband (who’s known me for 23 years) has long since learned to deal with my random moments of paranoia. And my kids are still too young to notice when those moments occur. As for me, I’ve come to realize the paranoia is something I’ll likely deal with, to some extent, for the rest of my life. I try to keep it in check and not let it impact me or family members too much. It’s just a residual effect of having cancer and probably not something I’ll ever be able to shake completely.

How to make the most out of every patient visit

Editors Note: We met with Susan Covey and Pam Clay, Certified Medical Assistants who serve as Clinical Staff at the Providence Regional Cancer System Clinic in Lacey, WA to ask them, “How can patients make the most out of their visit?” Here are their top 6 …

1. Bring a list of your medications. See “I take one blue pill and three pink pills twice a day.”
2. Write your questions down. We find that it’s helpful for our patients and their support partners to keep a journal beginning the day they leave their last visit to the day of your next one.
3. Bring a support partner. It’s not only helpful to have a second set of ears listening to your care team’s instructions; it’s also beneficial to have a second person’s questions while the doctor is present.
4. Let us know if you’ve been to another doctor, or had tests done somewhere else. This information helps us to ensure the treatment plan we are creating for you is the most appropriate and complete.
5. Be a good patient. This means, don’t be afraid to give us the full picture.
   - Tell your doctor everything you tell your nurse. Often patients will share openly with their care team up until the point they see their doctor. Not wanting to look like they are “complaining to their doctor” they stop sharing and simply answer the doctor’s questions, painting an incomplete picture of their treatment.
   - Don’t ignore your side-effects! Every day we make more progress managing the side-effects that cancer treatment often brings … but we can’t address them if you don’t tell us about them. See “Cancer and pain: It’s okay to ask for help.”
6. Be yourself. We think our patients and those who support them are some of the bravest people we know … but we also know that you are feeling scared, confused, frustrated … the list goes on. When you come to see us don’t be afraid to tell us how you really feel. We’re here to help.

You might also like:

• Expert response: Healthy control now and later
• Have you considered acupuncture?
• Lynn's #1 lesson: There are no stupid questions

Being your own best advocate

I recently agreed to write a short item for a Web site highlighting issues that impact adult survivors of childhood cancer. I was asked to come up with something for the Web site’s “Advocacy” section. I said, “Sure, I can do that,” without really thinking about it, but later found the topic a little challenging.

I realized that advocacy to me meant writing letters to legislators or visiting the state capitol to lobby for a particular issue – neither of which I’d done for any cancer-related causes. As I was struggling with what to write, I started broadening my definition of advocacy. I decided it could also mean just getting the information you need to make good decisions about whatever cause you’re supporting – including your health.

Here’s what I wrote:

I ended treatment for leukemia in 1983 when I was 16. At the time there weren’t many longtime survivors of childhood cancer, and there wasn’t much research about future health problems I might face as a survivor. So over the years it’s been up to me to figure out how new research findings about late effects of treatment might impact my health.

For instance, when I heard that female survivors of childhood cancer might be at risk of second cancers like breast cancer, I got pretty anxious. And when I decided to have kids, I wondered if I’d have fertility problems. But after reading and talking to oncologists, I learned that neither issue was likely to affect me based on the type of radiation therapy and chemotherapy drugs I had received. (Plus I now have two beautiful boys to prove that, fortunately, fertility wasn’t an issue.)

Many resources exist today for people (kids and adults) who are ending cancer treatment – including follow-up plans with information about what to monitor in the future. But I still believe it’s up to each person to be their own advocate, to seek out the experts and information that will keep them in-the-know about their health needs after cancer. For me, making sure I’m informed about medical issues that could impact me has helped me feel proactive about my health and calmed my anxieties about it.

Special Note: Soon after writing the above entry, I stumbled across a great resource about self advocacy from the National Coalition of Cancer Survivors (NCCS). It’s called Self Advocacy: A Cancer Survivor’s Handbook. You can download or order the book for free: NCCS believes that cancer becomes a much lesser foe when faced by informed and knowledgeable health care consumers who know how to communicate their needs to those who can be helpful to them as they experience cancer. This handbook focuses on self-training steps and tools to assist and empower individuals dealing with cancer.

Expert response: Healthy control now and later

In a recent post, "Tales of a cancer control freak," Marci McNaghten shared how her cancer diagnosis as a teenager led to extreme efforts to control her environment, her weight and her life - all while undergoing chemotherapy. Thank you Marci for your honest and moving account of a very challenging, frightening time. What Marci described is not unusual.

A diagnosis of cancer, especially when there seems to be no clear cause for the disease, can make you feel that you have no control in life at all. Concerns about what is happening to you, how your family will cope, how you will handle side effects of treatment and whether you will survive can be overwhelming. And as I noted in an earlier blog entry, "Combating end-of-treatment stress," ending treatment is unfortunately not the end of the challenge of cancer. Indeed, as Marci notes, while there may be initial relief that treatment is over, previously unacknowledged fearful feelings and anxiety may erupt at unexpected times.

In addition to the surgery, chemotherapy, radiation and other treatments, it is helpful to take proactive steps to lessen and/or prepare for the potential emotional consequences of cancer:

• Find a health care provider who is knowledgeable about cancer and is someone you feel you can easily talk to about treatment and other concerns (e.g., anxiety, depression, sexuality, family issues, etc.)
• Learn as much as you can about your cancer and the available treatments for it. Talk to experts, go online, read books. But make sure you seek information from reputable sources! See "4 pitfalls to avoid when researching on the internet."
• Ask lots of questions – especially when you don’t understand what your doctor or nurse is trying to explain to you. Take a friend or loved one with you to appointments.
• Look for psychological support, as Marci did. Experts such as psychiatrists, psychologists and social workers can meet with you one-on-one. And, for some people, support groups facilitated by a trained leader can be valuable.
• Reduce stress whenever and however you can. There are many ways to do this -- whether it’s through eating better, exercising more, journaling, intimacy with a partner, learning to meditate or taking up yoga. Just breathing deeply and focusing on this moment is calming.
• Take advantage of the survivorship services Providence Regional Cancer System offers: New Patient Orientations, Living with and Beyond Cancer Evenings, Cancer Transitions Program, Integrative Care services, Cancer Survivor Celebration Day (June 4), support groups, social worker services, etc.
• Know that you are not alone on this journey.