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My Survivorship Road Map: A Plan In Hand
Posted by Anne Willis on September 2, 2010
This is the fourth and final part of a series that chronicles my latest attempt to get follow-up survivorship care. A few days after my appointment with the survivorship clinic I had a test done to look at my heart and had my blood drawn for analysis. As strange as it sounds, I had been waiting for this day for years, albeit anxiously waiting. I mentioned in previous posts that potential heart damage has long been my biggest post-treatment fear, and that is what significantly spurred me to make another attempt to get the survivorship care I need. Once I left the clinic after my tests I felt as if a huge load had been lifted of my chest, regardless of the test results. I would soon know for sure whether I showed signs of heart damage from my cancer treatment. When the nurse practitioner called a few days later it took all I had to patiently wait for her to get to the results. She started with the blood work. My thyroid was fine (another big concern of mine because of the radiation), and everything else in my blood word looked good. Whew. In the few seconds between the blood results and the heart results my mind was racing, trying to anticipate what she was going to say. I thought for sure that she was just starting with the good news and then had some bad news to deliver. Luckily, however, she said my heart looks great. I felt like I had won the lottery and immediately shared the information with my loved ones. After all these years of feeling like a ticking time bomb, I finally can relax a little bit because I no longer have to fear the unknown. Granted, the condition of my heart can change over time, but at least now I have a regular system in place to check on it. And some more good news…she was able to get my radiation records and my other treatment records, despite all of my treatment having taken place 12-13 years ago. She said she didn't really run into any problems trying to get the documents, which is better than my own attempt to get them. Now the nurse practitioner can go back and make me a personalized treatment summary and follow-up care plan. I had always kept a mental list of things my previous oncologist had told me to watch out for, but having something that's on paper, comprehensive, and tailored to me is much more useful, not to mention accurate. It turns out that some of the things I worried about were unnecessary and some of the things I had no idea about were never discussed with me. And that whole time I thought I knew what I needed to watch out for and keep in mind. All in all, getting my survivorship care plan took about 3 weeks from finding a clinic to getting my first round of test results back. I found a clinic and made an appointment, gathered all of the information I could on my treatment history, went in for the appointment and my tests, and received my own personal treatment summary and follow-up care plan. I still have other appointments to make and will need to get other tests, but it was pretty painless getting the ball rolling. Now I am all set – I just need to work with my new health care team and follow my survivorship plan.
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My Survivorship Road Map: My Survivorship Clinic Visit
Posted by Anne Willis on August 25, 2010
This is the third part of a series that chronicles my latest attempt to get follow-up survivorship care. I have never in my life been so excited to spend a morning in a clinic, and I've never seen clinicians so excited to spend the morning with me. It was the first day of the survivorship clinic and I was one of the first patients in the program. My friend graciously came with me and offered to take notes, which was a huge and unexpected help. She even typed it all up for me afterwards! The George Washington Cancer Institute's survivorship clinic, called Thriving After Cancer, started as a way to transition childhood cancer survivors from a pediatric clinic to an adult clinic. When I first started treatment, I was one of the oldest patients at a children's hospital and always felt out of place. When I tried the first time to get post-treatment care after I moved away, I also had to go to a pediatric clinic where I was very obviously out of place and a little uncomfortable being surrounded by children's toys and little kids. It was really nice to get away from that and be seen in a regular clinic. The nurse practitioner and pediatric oncologist first came in and introduced themselves to me. We chatted briefly and they explained that two psychologists were going to come in and speak with me first and then we would talk about my specific treatment. My friend left the room and the two psychologists came in. I've never spoken to a psychologist and one was never offered to me during treatment, so this was the first time in my life that someone actually asked me how I was doing – and really cared about that answer. It was not intimidating at all and I felt very comfortable talking about my story. It was an interesting opportunity to reflect on my experience in a way that I never have before, and I'm really glad this piece was part of the visit. When they left, a social worker came in to chat for a few minutes. She gave me a list of resources and let me know that if I needed any help with anything (coping, financial issues, etc.) that I could contact her. She also gave me the information for seeing the psychologists if I was interested, since they offer their services as part of this survivorship clinic at no cost to the patient. The oncologist and the nurse practitioner came back in and we went over the details of my treatment, or the ones that I could remember anyway. They explained their biggest concerns for me (heart damage and secondary cancers) and gave me the opportunity to ask questions I had (do I need to worry about my thyroid, bones, strokes, etc.). It was difficult for them to get too specific on possible late effects because they do not yet have information about the exact fields of radiation and the dosages of chemo that I had. But they definitely had enough to get them started. Luckily the nurse practitioner is going to contact the different places where I was treated to pull together a specific summary and follow-up care plan. As I mentioned in my last post, I received care from 4 doctors (not including surgeons) at 3 hospitals (not including the surgeries), so there is a lot of information to piece together. Luckily I don't have to be the one doing that. She also gave me a notebook that had a to-be-completed treatment summary, a partially filled-out survivorship care plan, and some resources on some of the issues that I need to know about based on my treatment. It also has the contact information for most of the people I saw.
After we went over treatment specifics, the oncologist left and the internist came in to go over other general health questions with me while the nurse practitioner was there. The doctor did a quick physical exam, asked some questions, and explained that I can see her (or another internist there) for my non-cancer health care, especially considering that I do not have a primary care physician right now. She also gave me referrals to a dermatologist and fertility specialist and gave me paperwork for getting my blood drawn and getting an echocardiogram to check my heart. When she was done the nurse practitioner wrapped up and I made sure I was clear on what my responsibilities were (schedule the echocardiogram and get blood drawn) and when that needed to be done (in the next two weeks). She said she would call me with the results from those and we would move forward from there.
It was a long morning. I was there for several hours and met with several different doctors, but the visit far surpassed my expectations and I'm so glad to have this opportunity. There are still some things on my end that I need to take care of, like following up on my referrals and making sure I schedule tests. But I can handle doing that as long as I know someone is there to help me navigate my survivorship care.
(Stay tuned to the blog for the final part of this series.)
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My Survivorship Road Map: Preparing for the Survivorship Clinic
Posted by Anne Willis on August 17, 2010
This is the second part of a series that chronicles my latest attempt to get follow-up survivorship care. I got in touch with the nurse practitioner at the survivorship clinic and scheduled my appointment, instantly feeling relieved that post-treatment follow-up care was finally going to happen. I also asked my good friend if she would come with me, and her response really amazed me. "I'm so proud and excited for you about the Survivorship clinic! You're so brave to be one of their first patients…it's a very positive thing that you're doing when your instinct is to stick your head in the sand." I'm so thankful to have such good support because I personally find this whole process intimidating and a little scary. It's a lot harder when you alone, instead of with help from your parents or spouse, are responsible for your health care needs. When I spoke with the nurse practitioner, she asked just a few questions about my insurance and whether I had a treatment summary. I told her I had tried to get one but was not successful, but I would e-mail her all of the information I knew. This is what I e-mailed to her (with names/contact info removed for this post): I was diagnosed with Ewing's Sarcoma in June 1997, shortly after my 15th birthday. The tumor was in the soft tissue on the back of head, outside of the skull where my neck meets my head. I started treatment at [Hospital One] (see info below) but changed oncology teams halfway through because I was not getting the care I needed. I had 18 cycles every 3 weeks, I think it was 3 days of the first three drugs and 5 days of the next two drugs: Adriamycin, Cytoxan, Vincristine, Ifosphomide, VP-16. I also had 6 weeks of radiation somewhere in the middle of my treatment (before I switched oncology teams), and I had 3 surgeries to remove the tumor and clear margins and 2-3 surgeries to insert central lines (I went through 3 or 4 of them). The only real complication during treatment was a leak of adriamycin from my central line into my chest tissue above my heart. They diluted it with shots of saline and externally the only trace of it is my prominent veins. I have no idea if there is risk of other damage from that. I went regularly to my oncologist for about 9 years post-treatment until I moved away and changed health insurance. After about two years those visits consisted only of blood work and a few verbal cautions (get my thyroid checked and wear sunscreen where I was irradiated). I went to a local survivorship clinic 2 or 3 years ago but fell through the cracks for a lot of reasons and never felt comfortable getting that process going again. They never gave me a summary or survivorship care plan, and I never had any testing done. So, it's been a really long time since I've had any meaningful follow-up, but I do not have any issues that I am aware of.
I started treatment (maybe continued 6 months) with:
Dr. One, Practice One, (xxx)-xxx-xxxx
Dr. Two, Practice One, (xxx)-xxx-xxxx
Hospital One, Address, (xxx)-xxx-xxxx, patient number 123456
Half way through I changed treatment to:
Doctor Three, Practice Two, Address, (xxx)-xxx-xxxx
Hospital Two, Address, (xxx)-xxx-xxxx, medical records number 123456
My radiologist:
Doctor Four, Address, (xxx)-xxx-xxxx
Hospital Three, (xxx)-xxx-xxxx
My second opinion was at:
Hospital Four, patient number 123456 (Doctors Five and Six)
There was not enough time for the survivorship clinic to collect all of my records, but they decided we should still go forward with the appointment and they would work on getting my medical history. With my friend's commitment to come with me and the appointment officially scheduled, I took one important step closer to getting my survivorship road map.
(Stay tuned to the blog for more.)
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My Survivorship Road Map: Starting from Scratch
Posted by Anne Willis on August 5, 2010
This is the first part of a series that chronicles my latest attempt to get follow-up survivorship care. Over a recent unusually and unbearably hot weekend where I live, a local 20-year-old man was riding his bike, lost consciousness, and hit his head on a tree and died. The medical team said the heat and humidity likely contributed. I happen to be training for a big triathlon to raise funds to support young adults with cancer through the Ulman Cancer Fund for Young Adults. I also happen to be a survivor who had chemo known to cause heart damage years after treatment. I've always had a latent fear that my heart will give out while I'm exercising, and suddenly that fear became very palpable to me. I made the decision that day to take the weekend off training, and to renew my efforts to coordinate my survivorship care. After seeing my oncologist for about nine years post-treatment, I moved from Texas to Washington, D.C., and got new health insurance, so I needed a local survivorship team. I found one, but I fell through the cracks. The follow-up oncologist I saw had taken a new job and was leaving the next week. The nurse practitioner was on vacation when I came in and never followed up (and I never called). My original oncologist would not give me a treatment summary, and my attempt to get my records from my old oncologist led to me receiving only a small piece of what I needed, which wasn't readable or usable to me. I was new to managing my health care and was confused about what to do. All these factors contributed to me going without proper follow-up and to a lot of anxiety on my part. I met a doctor at the NCI Biennial Research Conference who mentioned a new program called Thriving After Cancer (TAC) at the George Washington University Cancer Institute. She said TAC is a survivorship clinic to help transition adult survivors of childhood cancer from a pediatric to adult setting. So I called a colleague there to get the details. She knew I'd been having trouble coordinating my care and said they would be able to help me. I instantly felt better. Then I realized I needed to pull together the little information I had so I can work with the nurse practitioner to piece together a treatment summary and follow-up care plan. I was 15 at my diagnosis, so I have to rely on my parents and my memory for everything. I had 2 different surgeons, my first oncologist from one hospital that I left part way through treatment, my second and long-term private oncologist who saw me at his clinic and at a different hospital, and a radiologist based in a different hospital. What were my doctors' names? How do we reach them? Where all did I receive treatment and what were my patient numbers at those hospitals? What is my family health history? What else is relevant?
To be honest, I was overcome by embarrassment. Why didn't I have this information already gathered? Why couldn't I get a treatment summary from my oncologist? How can my job be to help people coordinate their care when I am struggling so much with it? Why haven't I done this yet?
Luckily my dad kept really good records, even 13 years ago when survivors didn't know how important it was to have that documentation. Some quick Google searches by my mom found that some of the doctors had moved to other places. So now I have all of that very basic information, but I don't have the specific dosages from my treatment, which is really key (see my next Road Map posts). I've also asked my parents for a family medical history. We have bits and pieces of the history, but nothing that looks at both sides of the family and at all different types of health issues. Still, I don't even have a basic treatment summary to share with my new survivorship clinic.
I still feel embarrassed that I'm just now doing this, 12 years after treatment ended. My mom spent her entire career in health care and both of my parents have spent time in the medical system with various health issues. I just can't believe we didn't already have any info pulled together – even that basic info that would help me get a survivorship care plan or road map of my care. As I beat myself up about how this could happen, a thought occurred to me. We just didn't know. That's it. We just didn't know how important this was so how could we be expected to have this information at our fingertips? Certainly before I started working at the National Coalition for Cancer Survivorship no one said anything about needing to have your medical records to create a treatment summary and follow-up care plan. We just didn't know, and the only thing to do now is move forward.
With all of my doctor contact information and patient ID numbers, I picked up the phone to call the nurse practitioner at the survivorship clinic. She didn't answer so I left a message...
(Stay tuned to the blog for more.)
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I Was Standing There on Capitol Hill
Posted by Linah Lubin on July 28, 2010
Re-posting Greg Frazee's blog post about his visit to Capitol Hill for a Breakaway from Cancer event. You can read more on Greg's blog: http://www.gregsalien.blogspot.com/ "I Was Standing There on Capitol Hill*" *With apologies to Dave Frishberg. Today is the one year anniversary of my last chemotherapy infusion. Somewhere around the very hour that I am typing this, was the "unhanging of the last bag." This Friday is the one year anniversary of the return of my stem cells. Some of the folks in the business call it "your other birthday." Next week (Friday, the 30th) starts the next round of tests, scans, etc. as part of the 5 year plan. Not a lot of anxiety about it, however since the CT scan is on the 30th, I will be a little edgy about waiting for a call from the doctor's office saying as a result of the CT scans, they want me to have a PET scan. That call would indicate there is something in the CT scan that concerns them. If I don't receive that call within a week, we could be clear sailing. The following Monday (August 2) is a bone marrow biopsy. The good news (for Annette) is that I have nothing diabolical planned for that appt. Last night, I attended a Breakaway From Cancer event at the Rayburn House Office Building on Capitol Hill in DC. I was invited by the good folks at National Coalition for Cancer Survivorship. I drew an arrow on the photo pinpointing the approximate location where the event was held. There were a couple of folks there from Congress. The purpose of the event was to highlight the needs of cancer patients and the tools and resources that the folks who sponsored the event provide to those affected by cancer. There is a wealth of great information available through the organizations involved and the discussion I had with some of the folks present, including survivors, was how to get that information out there at the right time. One of the survivors described her experience upon receiving her diagnosis as going into a tunnel and feeling the weight of the diagnosis envelop her. For some time, the ability to think rationally escaped her. I remember that I shut down from wanting to absorb any input about my diagnosis unless it came from a doctor or nurse. I allowed no one to have any credibility that wasn't a part of the medical team. There is only so much you can absorb at the outset. That's why I think it is important to get previous patients connected with newly diagnosed patients as soon as possible. It doesn't have to be a mandatory thing, but it could be a question that is asked by the medical team ("Would you like to talk to someone who has been through what you are facing?") or by the patient themselves ("Is there someone I can talk to who has been through what I am about to go through?"). Support groups are a good source, but not everyone (myself included) feels like interacting with a large group during the process. I will never forget the kindness of a gentleman from Williamsburg VA who I spoke to before I did my stem cell transplantation. He had been through the procedure and he spoke openly and honestly to me about the process. He also offered encouragement.
Wednesday, July 21, 2010 
I will be working with the Leukemia and Lymphoma Society to be trained as a volunteer "First Connection" resource. Honestly, I wasn't aware of this resource when I was diagnosed. It's the fault of no one, but the various agencies are aware that the information they have doesn't get into the hands of the patient or caregiver at the most opportune time. They are working on how to correct that.
I think to be successful in getting the word out, the effort has to be grass roots and word of mouth. As a result of a personal connection via friends or family of someone who has been newly diagnosed with cancer, I have talked, and am willing to talk, to both patients and caregivers as they go through the journey. I'd like to think I have been able to help.
If you have not personally experienced cancer, but are sharing the road with someone who is going through the cancer experience, the best thing you can do is not to offer advice, horror stories or medical assessments. All you have to do is listen and offer help for what you hear are the needs of the patient. It can be a trial and error process and it won't always be graceful.
However, you will experience grace.
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Taking the Hill
Posted by Melissa Glim on July 19, 2010
Tomorrow evening, I get to do one of the most fun parts of my job: I'm bringing cancer advocates to Capitol Hill. In this instance, we'll attend a reception, sponsored by the Breakaway from Cancer Initiative, to raise awareness about the importance of organizations that serve the needs of cancer survivors across the continuum, from prevention to survivorship. We'll be talking about how these services help people across the country who have already been affected by cancer, whether as a survivor or a caregiver or a loved one, and we need support to keep these services going and changes made to ensure that everyone has the best quality care possible. Our advocates are coming to share their stories and show members of Congress just who their laws and policies affect: real people like you and your own loved ones. It's the personal stories, the one-on-one meetings and experiences that make the difference on Capitol Hill. We at NCCS can present the facts and figures, but until our Senators and Representatives and their staffs meet cancer survivors in person and hear what they have to say, our data is just abstract. I'm so grateful for the super NCCS Super Advocates who will be joining us tomorrow evening, to use their own experiences to make cancer care better for the rest of us. And I look forward to hearing from you about your own interest in visiting your legislators or your own experiences in the past. P.S. For those of you who want to learn about holding effective visits with legislators, visit our guidebook, The Cancer AdvoKit™, or sign up for our upcoming Webinar, "How to Hold an Effective Meeting with Your Legislator," on July 29 at 12:30 ET!
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Survivorship Research Pt 2: Follow-Up Care
Posted by Anne Willis on July 8, 2010
When I finished treatment 12 years ago there was no clear transition. On my last day of chemo I rushed out to make it to work on time, and I had some vague instructions about coming back in a few months. The appointment every few months turned into every year and I moved across the country. I would go back and my doctor would warn me about a couple of things, like the importance of wearing sunscreen on my irradiated skin and having my thyroid monitored because it may have been damaged by the radiation. But I never had any sort of list or roadmap of what to watch out for or how to make sure my future health care team members were aware of my new health care needs. I asked for a treatment summary and my oncologist flat out told me no; he would not give me one because he said it took too long to create. And there's been no attempt by my oncologist to communicate with my current health care team about how to manage my care moving forward. It has been frustrating to say the least. Unfortunately, my experience is not uncommon; but things are definitely changing as evidenced in the final session of the 2010 Biennial Cancer Survivorship Research Conference that took place a few weeks ago. The last part of the conference was a fantastic panel on Follow-Up Care: Current Status and Future Perspectives (full disclosure – I was on the planning committee for the panel!). There was some interesting data presented from a couple of studies that looked at survivorship care planning and perspectives of how it should be managed. One researcher looked at attitudes and perceptions of oncologists and primary care physicians (PCP's) about who is responsible for follow-up care. PCP's said they have low confidence and knowledge about coordinating survivorship care, and they had different perceptions from oncologists about how to best manage this care. The oncologists wanted to keep on seeing survivors and be in charge of their continued care, but PCP's wanted a shared care model where they work with the oncologist to make sure the survivor gets followed. The two groups also differed in perceptions about communication and their role in everything. Mostly, though, it is clear that care planning is not being done enough and we need to figure out the best way to coordinate care for survivors. Understanding what is currently happening and why is crucial to figuring out how to improve the system.
If I could have just gotten a treatment summary of what happened to me and a plan for what to expect in the future from my oncologist, my life would have been so much easier. If, instead of having to repeat my story over and over to every doctor that I see for any reason, I could have something written to hand over for them to keep in my records, I would feel so much better about my care. And since survivorship care is all about survivors, it's important to know what we want and expect after treatment. Another study looked at what we as survivors think about follow-up care coordination. It seemed like most of the people in the study were not even aware of the need for better coordinated care. Most of the survivors interviewed thought that screening was the only follow-up they needed, which is actually only one part of post-treatment needs. Cancer treatment can impact survivors' health in many ways and can lead to long-term or late effects that may not show up until many years later. For some reason, the study participants reported getting screened appropriately, but that perception was not consistent with their health records. In other words, people thought they were getting the right care but did not seem to actually be having the screening tests they needed. The survivors in the study also wanted to have their oncologist be in charge of their follow-up care, though 10% weren't really sure who should be coordinating everything. So not only do the doctors not have a clear idea of how care is being coordinated, but survivors do not either and are missing out on getting the care they need.
The panel was interesting and helped shed some light about how we can move forward and do what's right for survivors. As someone who is still struggling to coordinate my post-treatment care, it was great to be part of the conversation about what survivors want and need. It seems like everyone is in agreement that having a survivorship care plan would be beneficial, but we just need to get them in use more widely. It would be great if you knew upfront that there was a plan to take care of you through and beyond treatment.
(If you're interested in learning more about these cancer care plans, visit the Cancer Care Planning section of our website.)
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How Well Planned Was Your Care?
Posted by Melissa Glim on July 7, 2010
"I'm a survivor since 1994. I don't even know how many meds I've had—my doctor said I've probably had the lifetime maximum doses, but we're not really sure. One of my doctors is dead and half my records are gone. When I was discharged, I was handed a bottle of Vicodin and told they would see me in a couple of weeks. That was it."—Sean, cancer survivor and oncology nurse, California "It's all been up to me. I have six different doctors right now, but no one directs me from point A to point B."—Pam, lung cancer survivor, Iowa "When I was diagnosed, there wasn't much info on anal cancer. I was one of only two people in my state to be diagnosed with it in 2004. I wish that my radiation oncologist had explained to me about dilators during my radiation treatment; perhaps if I had known then what I do now, I possibly could have sexual relations with my spouse. I also would have liked to have known about having a full bladder while undergoing radiation treatment to prevent burns. I wasn't told about any of these things until it was too late and already caused major damage to my internal organs. I didn't know then that radiation is the gift that keeps on giving."—Claudia, anal cancer, Michigan "I used to walk around with reams and reams of paper – my doctor gave me a copy of everything – and I would carry it to all my doctors outside of Sloan-Kettering. Now I have a treatment plan and summary that is concise and easy. It's like having someone go through my medical record and extract all the most pertinent information and translate it into an easily readable packet. It's especially helpful to me when I'm outside Sloan-Kettering."—Marian, breast cancer survivor, New York Last May, I spent 12 days attending meetings and events about cancer and cancer survivorship. I spend most of my day working on building support for NCCS issues like cancer care planning and talking about how care planning could have made going through treatment and transitioning to survivorship a lot easier. So while I was out among survivors I asked them, "What do wish you had known?"
Like the people quoted above, many cancer survivors didn't get much planning or explanation with their treatments and follow-up care. They took things one step and a time, maybe dealt with symptoms as they came up, and looked for resources after they needed them. Survivorship was even less known territory – just some follow-up visits at monthly or yearly intervals, without a lot of guidance for what to expect or how to deal with it.
It doesn't have to be that way. Cancer care planning is a way of ensuring that survivors and their health care providers sit down and talk about all their treatment options, how they'll manage symptoms and side effects before they set in, and what to do about issues like depression, stress, and balancing treatment with the rest of their life. It's a way of planning for the "new normal" – so survivors can feel more confident knowing what's a symptom that requires a call to the doctor and what isn't, where to go for help or support, and how to avoid or lessen late effects of their treatments.
To make cancer care planning a standard of care, we need your help to get the medical community on board. The Comprehensive Cancer Care Improvement Act would encourage doctors to spend the time it takes to do comprehensive cancer care planning.
We're collecting stories from survivors, caregivers, and providers across all 50 states to illustrate what surviving cancer looks like today and inspire policymakers to make surviving cancer easier in the future. Please share a short note about how knowing what to expect ahead of time (or not knowing at all) has affected your health and well-being. You can use this form to upload your story and pciture, if you want to represent your state and share your story with your member of Congress.
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Survivorship Research Pt 1: Advocates in Action
Posted by Anne Willis on July 1, 2010
Two weeks ago I attended the 2010 Biennial Cancer Survivorship Research Conference, which brought together researchers and advocates from across the country and world to discuss the latest news on survivorship research. Sometimes it's easy to tune out when you heard the word "research," but this conference had a lot to teach beyond statistical speak like p values and standard deviation. The topics included exercise and nutrition, the role of communication, young adult survivorship issues, and intimacy and sexual issues, just to name a few. And, most of the sessions included survivors to really frame the work that the whole community is doing. I was invited to speak on a panel entitled "Challenges and Lessons Learned in Research with Young Cancer Survivors." My job was easy – I got to talk about me. I spoke first on a panel of 5 presenters where we talked about quality of life, adherence to medications, and some general observations about young adults. One surprising thing that came out of the session was that young adults seem, at least up until recently, to prefer to take surveys in hard copy instead of online. Who knew that the technology generation would revert back to the basics of pen and paper? I tell my story a lot, but usually it's in the context of talking about the work we do at NCCS. This was one of the few times that it really was just about me. After the presentation I was surprised by how many people came up to thank me for telling my story. It was clear that the simple act of me telling my story meant something to at least some of the people in the room, which was pretty cool. I think sometimes its easy to take for granted the impact that a survivor's voice can have on many levels. Another neat part of the conference was the Survivor Advocate program that provides travel scholarships for 20 advocates to attend the conference, learn first-hand about key research in cancer survivorship, and to interact with other advocate leaders and survivorship researchers. While I was not one of the advocates in the program, I was able to sit in on their debrief after the conference, and it seemed like they all got a lot out of it. They came from across the country (and a few from other parts of the world) to participate in the conference. There were several networking opportunities with both the advocates and the researchers, and the participants were acknowledged several times throughout the program. The researchers seemed to be receptive to including advocates and learning from us. Overall, I was happy to be part of the conference and happy to see that survivors were so much a part of everything. Maybe we'll see you there in 2012?
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Ghosts
Posted by Greg Frazee, Guest Blogger on June 23, 2010
(Ed. note: Greg Frazee is a guest blogger. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) Without question, the day is Thursday, July 23, 2009. That's the day my stem cells came back to begin the "rescue." As my caregivers and others who were present in the room (including a newly appointed assistant pastor at my church who I met for the first time that day) will attest, adrenaline was moving through my system during the infusion of my stem cells. This was it, this was the day that recovery would start. This was the first day of survivorship after a 7-month regimen of chemotherapy and an autologous stem cell transplantation treatment. "Look out world, I'm on my way back." During the infusion, which took less than an hour and a half, I don't think I sat still in one place for more than 5 minutes. The excitement and anticipation was high. As I approach that date this year, some "ghosts" come back to visit. The heat and stickiness of the approaching summer remind me of the days of consultations, examinations, port insertions, stem cell mobilization shots, stem cell collection days and sleepless nights. Even though, physically, I am light years ahead of where I was last year, mentally, I drift back to those days. In addition to anniversaries being a celebration of a milestone, they are a celebration of the events that get us to that milestone. I am surrounded by a "holy host of others"(thank you, James Taylor) to bring me back to the present. Last September, on my personal blog, I wrote of the skill and compassion of the nursing staff I encountered in every phase of my treatment. It was the nurses and their assistants that were there to alleviate nausea symptoms, to monitor my mental and physical well being, and most importantly, administer my treatment regimen. When I became aware that CURE magazine sponsored an Extraordinary Healer Essay Contest that honored oncology nurses, I submitted an essay about my Nurse Practitioner. We were excited to be one of the three finalists that were recognized at the CURE Magazine event held during the Oncology Nursing Society Annual Congress in San Diego. The evening was a celebration of the work that oncology nurses do for patients and it was an honor to be an active part of that celebration. It is the recalling of the dedication and compassion of the nursing caregivers that chases the "ghosts" away when they come to visit. In addition to my own desire to be a survivor, I realize that they are pulling for me and share in the celebrations that take place in my journey. They are sacred and holy gifts to me.
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My 13th Cancerversary
Posted by Anne Willis on June 3, 2010
It's funny how I can remember so much about the day I was diagnosed, yet I can't remember the actual date. I know exactly what I wore (new grey tank top, my favorite Levi's, and my Doc Martens); when I realized the doctor and my parents weren't kidding (when my mom suddenly blurted/screamed, "You're not going to die!" and the doctor actually offered me a drink); what the ceiling looked like that I stared at for hours as we talked with the doctors and I tried to hold back the tears (pretty standard office ceiling); and how I felt for over an hour getting my first MRI late that night (terrified and alone as my dad tapped out the remaining time on my feet). I do remember that I had a surgery to remove what everyone agreed was a benign cyst from the back of my head on May 15, 1997 and went back to see the surgeon about 2 weeks later to have the stitches removed, either on or the day after Memorial Day. So, that's when I consider my Cancerversary to be - Memorial Day-ish. As far as Cancerversaries go, my 10th was a big one (You can read more about that on my Cancerversary page). It was a special milestone that I marked in several ways with a lot of different people who were important to me. My 13th Cancerversary, which I consider as June 1st this year, doesn't quite have the same ring, and the past couple of years the date has come and gone with little thought on my part. Maybe in 7 more years I'll throw another big bash, but for now I'm fine with some more subtle acknowledgement. Ironically, this year I received some personal cancer news on my Cancerversary. I've previously written about my family having the breast cancer gene. At first I did not think much of it, but once my dad scheduled an appointment to see the genetic counselor, I couldn't stop thinking about it. There was a lot running through my head about what that would mean for me and my new baby niece. As much as I tried not to dwell, I couldn't get away from it. Once my father went to the genetic counselor we had to wait two agonizing weeks for the results. Every day closer to knowing was harder than the previous day. I couldn't really talk to anyone about it because I just didn't have the words. And I didn't want to unnecessarily freak out about it. On my Cancerversary I was on pins and needles waiting for the word. I went to a meeting at work and came back to see a message on my work phone and a text from my mother - "BART negative. No possibility you could have the defective gene." Immediately I checked my voicemail, just to make sure that what I read was right, and it was the same message. My reaction was a few giant breaths as I spent a several minutes staring at the text. To say that I was relieved is a huge understatement. Later that afternoon I realized it was my Cancerversary and made the connection with my new cancer news. I guess, in the scheme of things, the universe was giving me a nice Cancerversary gift. While I'm happy to accept, I hope that next year will be so uneventful that I completely forget about my Cancerversary. Nonetheless, I'm grateful for another year of my survivorship and, with this news, feel a renewed excitement for this year's milestone. It looks like a belated and very small Cancerversary party is in order!
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Celebrating Survivorship
Posted by Anne Willis on June 1, 2010
For about 9 years after my diagnosis I did not meet anyone who seemed to understand what I had been through. I might have met a few people here and there who were survivors, but I had never really connected with anyone. It never occurred to me that I really wanted and needed to bond with someone over cancer, but looking back it was clear that I felt very different from my peers who had not had cancer. When I began working at NCCS, something revolutionary happened through a conversation about, of all things, rashes. One of my colleagues, Dan Waeger, was in active treatment for lung cancer and his medication left him with an awful rash on his face and body. He brought it up one day in conversation and my eyes lit up. I quickly responded, "I know exactly what that's like! I had a really gross rash all over my body and (I'll spare you the details)…I've never met anyone else who had a rash. I thought I was a freak!" Suddenly another co-worker came out of his office and chimed in about his rash that he'd had during treatment. Although the topic was a little gross, it was an amazing moment for me personally. For the first time since my diagnosis, I felt like I was not alone as a survivor; I felt relieved, validated, and comforted. I'd been a card-carrying member of the survivorship club, and this was my first official meeting. June has an opportunity for other survivors to connect with each other and to take an active role in their survivorship – to come to a club meeting. The month of June kicks off a time of celebration for cancer survivors across the country where survivors can come together, recognize the shared experiences of cancer, and acknowledge survivors and survivorship. National Cancer Survivors Day is officially June 6th this year, but many hospitals, clinics, community organizations, and individuals will honor survivors throughout the entire month. Some places are holding special education conferences, some organizations are providing special services and programs, and some people are taking the time to pause and reflect on their survivorship. And somehow, somewhere, some survivors will find solace in having a conversation about rashes. I'll be spending Survivors Day with thousands of oncologists from across the country and world. For the past several years I have attended the American Society of Clinical Oncology Annual (ASCO) meeting, which is where the latest cancer research is presented. This year I will be giving a presentation on survivorship to other cancer advocacy organizations and discussing how we can fill in the gaps, helping NCCS and ASCO honor the outgoing ASCO president, providing free resources and materials at our booth in the conference exhibit hall, and attending presentations on a wide variety of topics. Hopefully I can also take a little time to chat with my fellow survivors who are also at the meeting, which is one of my favorite parts of going. What are you doing for Survivors Day? Leave a comment and let us know if you or your community has plans.
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Single with Cancer
Posted by Tracy Maxwell, Guest Blogger on May 20, 2010
(Ed. note: Tracy Maxwell is a guest blogger. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) May 23rd is my four-year cancerversary. I was diagnosed at age 36 with a rare form of ovarian cancer, but I was lucky. We caught it early, and treatment was successful. Approximately 10 months after my initial diagnosis, I was declared cancer-free, and all of the follow-ups have been positive ever since. While the physical symptoms of cancer and the side effects from treatment have left my body, the emotional and psychological impacts likely never will completely. Even though I am among many survivors who have declared cancer one of the best things that ever happened to me, there are still psychological downsides that arise when I least expect it – sometimes I recognize them and their source immediately, and other times, they are completely unconscious, and yet, the impact is still there. My story is not unique, and one aspect of it has resonated for me, and also with others who are part of this club none of us chose to join. Cancer is tough, and I believe that even when surrounded by the best team in the world made up of friends and family, a significant other, great doctors, a supportive workplace, etc. etc, in the end, each person still goes through cancer alone. No one else can ever really understand what it feels like. When you are single, that lonely feeling can be exponentially greater. Even with all the supportive elements above, not having someone there 24/7 to support you during the darkest hours can be really hard. Just being single can sometimes bring up feelings of unworthiness or despair. Adding a life-threatening illness on top of that can be a big double whammy! A recent survey of single cancer survivors highlighted some common themes: The top needs expressed by this population were: For more than three years now, I have been talking about finding a way to serve this segment of the cancer survivor population. Even before I finished treatment, people who read my regular online updates suggested that I write a book, and I have been writing a monthly column about my experiences as a single survivor since 2007. You can see the archives and read them each month.
I have also immersed myself in the cancer community attending summits and the Livestrong Young Adult Alliance meetings, participating in cancer camps and retreats from kayaking to meditation, serving as an “Angel” for two different organizations and becoming particularly involved with groups serving young adults. The people I have met along the way have been amazing. They have helped me feel WAY less alone, and been so supportive as I try to figure out how best to serve singles with cancer.
After three years of talking, I am finally beginning to gain some momentum, and I am thrilled to report that three events are in the works: Canoeing & Connection: An Adventure for Singles with Cancer August 27-29, 2010; Singles with Cancer: Bootcamp Date and Location TBD (possibly November 2010); and Love and Power: A Relationship Retreat for Singles with Cancer Valentines 2011. Please contact me at asinglecell@gmail.com to learn more about single survivorship and the events I'm planning.
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Surviving Multiple Primary Cancers
Posted by Rebecca Esparza, Guest Blogger on May 12, 2010
(Ed. note: Rebecca Esparza is a guest blogger and NCCS advocate. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) Ovarian cancer changed the course of my life at the age of 30. A routine surgery to remove fibroid tumors quickly turned into a life-saving radical hysterectomy and tumor debulking. The psychological trauma of possibly not seeing my 31st birthday was sometimes as bad as the physical pain of my intensive chemotherapy treatments. So imagine my elation when almost a year later, I was in remission! Although the chemo left long-lasting effects on my body, as the years progressed cancer was slowly becoming a horrible nightmare more easily forgotten as time went by. There are still physical side-effects, like neuropathy, joint pain and shortness of breath (one of my chemotherapy agents attacked my lungs). And then there are the cancer advocacy volunteer activities I propel myself into: giving back has helped me feel like my suffering at the hands of cancer was not all in vain. Throughout the years, I've always believed in celebrating my cancerversary, which for me, was the day I was diagnosed: Thanksgiving Day, 2001. How ironic that a day of giving thanks has since meant suffering and pain to me. Consequently, my fiancée Robert and I have always tried to take a trip so I could forget about everything. One thing I had been hearing from my doctors following my remission was how crucial it was to make it to the five-year mark -- being cancer-free this long meant the chances of recurring were almost nothing. All of a sudden, five years had come and gone! We decided to celebrate in Las Vegas so I could scratch one more item off my bucket list and finally see the Grand Canyon. The trip was amazing: fine dining, a luxurious spa day and of course, having fun at the many casinos. Seeing the majesty and beauty of the Grand Canyon took my breath away and was the highlight of the trip.
On the way back home we decided to extend our vacation with an evening in San Antonio. That night, I was horribly sick. Robert said later he knew something was wrong. The next few months raced by and I was quickly deteriorating. I was tired all the time, had frequent dizzy spells and little energy for everyday tasks. Never in my wildest dreams could I ever imagine what was about to unfold.
In April 2008, I was at a Relay For Life event for the American Cancer Society when I tripped, hit my head and passed out. I was transported to the hospital and evaluated for a brain injury. A head CT showed nothing, but nodules appeared in my thyroid. When I read the radiologist's report, my heart sank. It mentioned "calcification" of some nodules in my thyroid. I had heard that word used by some of my breast cancer friends and was so concerned I followed up with my oncologist. She ordered a fine needle aspiration "just to be on the safe side" and the next day I learned I had papillary thyroid cancer.
I was beyond inconsolable. The shock of hearing I had a second primary cancer is almost too overwhelming to explain. I couldn't get past the tragic irony of evading a recurrence of ovarian cancer only to have a second primary cancer five years after my first cancer diagnosis. Surgery to remove my thyroid was done two months later. Today, doctors say I have "reactive" lymph nodes throughout my neck that could turn cancerous at any moment. I try not to think about it too much and live my life to the fullest everyday.
Having cancer once taught me how fragile life is but having it a second time made me realize everything isn't always about me. My disease is also taking its toll on my fiancé, parents and those that love me. My oncologist said people with two primary cancers seem to have a higher risk of getting additional cancers in the future. I'm trying not to worry about that. My theory is after everything I've been through; I'm ready for whatever God has planned.
But for me, there will only be one cancerversary. I tell my friends jokingly that I simply can't spare anymore major holidays.
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Survivorship and Science
Posted by Jasan Zimmerman, Guest Blogger on May 7, 2010
(Ed. note: Jasan Zimmerman is a guest blogger and NCCS advocate. If you are interested in being featured as a guest blogger, e-mail Anne Willis, Director of Survivorship Programs, at awillis@canceradvocacy.org.) I was jetlagged, sleep-deprived, and overwhelmed, but I completely enjoyed it. The 2010 annual meeting of the American Association for Cancer Research (AACR) in Washington, DC was more than I ever could have expected. I was accepted as a survivor advocate into the 12th Annual Scientist-Survivor Program at the meeting. Survivor advocates were placed into working groups and matched up with research mentors to help us understand the science and how we can add to the research. It helped the scientists put a face on the disease and understand that their research in the lab has the potential to impact a whole group of people in the real world. We attended special interest sessions that were specifically designed for us, where scientists explained various aspects of research in layman's terms. We were also able to attend whichever scientific sessions were of interest to us. I'm a scientist in my day job, so I'm very interested in the basic science research and how to exploit cancer pathways for treatment. As a survivor, I'm interested in how the research translates from the lab into the clinic. When I first heard about the Scientist-Survivor Program, I wanted to apply so that I could indulge both aspects of my curiosity. I knew I would be exposed to an immense amount of science, but an unexpected highlight of the program was learning about the other advocates. There was incredible diversity among us—advocates from as far away as New Zealand, Hungary, and Tanzania mixed with advocates from across the United States. Some represented large, established national organizations, while others represented small, grassroots, regional non-profits. Several research advocates worked to recruit survivors for clinical trials, raise money for research grants, and provide survivor input into research. It was empowering and inspirational for me to be around other passionate advocates who spend so much time fighting cancer on so many different levels. It made me want to work even harder on my own advocacy efforts. Networking with my fellow advocates was fulfilling, but research was the focus of the conference. Everybody associated with the program, as well as the scientists that I spoke with, were very welcoming. The scientists were very interested in hearing about the opinions and experiences of survivors so that they have a better understanding of the effects their research might have on patients. Learning about the cutting-edge research and the plans for the future was exciting and illustrated the importance of research and research advocacy.
I was overwhelmed by the amount of information at the meeting. The schedule was non-stop; I often had to choose between sessions I was interested in that overlapped. Thanks to my science background, I had a better understanding of the research than most of the advocates in the program, but not enough for me to fully comprehend everything. I compensated for that lack of knowledge by taking a big-picture view instead of trying to understand the intricacies of the research.
One of the key concepts that came from the meeting was collaboration, not only with other researchers working on similar projects, but also cross-disciplinary collaboration. It's a way to think outside the box and give a fresh perspective to current research. The more brilliant minds we have working on understanding and treating cancer, the better. Collaborating with other advocates is also beneficial, since we can share information about what works and what doesn't work so that we won't be constantly re-inventing the wheel.
I've been sharing the information I learned at AACR with fellow survivors and I will continue to do so. I'm especially interested in bringing more young adults into the advocacy world. Young adult patients and survivors are an underserved population, so we need to be more involved to increase attention and research for our age group. But all survivors, regardless of age or diagnosis, can and should be involved in research advocacy. We all have unique stories, and sharing them can bring more awareness to the importance of cancer research. You can hear some of my story and what I'm involved with in the video below from a presentation I gave at the meeting.
What can you do if you're interested in research advocacy? Get involved! It's easier than you think. The AACR Scientist-Survivor program is a great place to start. The Congressionally Directed Medical Research Program also has opportunities for cancer survivors, caregivers, and family members to get involved. Large cancer non-profits often have research advocacy programs. The more advocates we have, the more influence we have. Don't get overwhelmed by the research, but look at the big picture—understand how the research will affect patients and whether or not it will be better than the current options. Take that information back to your networks and empower more survivors and advocates to learn about research and advocacy. Keep sharing everything you learned with other survivors and advocates so that we can create a worldwide network of knowledgeable and empowered advocates to bring about positive change.
It was humbling to be at the epicenter of cancer research. Some researchers had personal experience with cancer, others didn't, but they all shared an intellectual curiosity and drive to unravel the mysteries of this dreaded disease. As the research continues and more progress is made, more people will be as fortunate as me to become cancer survivors.
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Facing Fear
Posted by Anne Willis on April 21, 2010
Living with, through, and beyond cancer can lead to feeling many different emotions, one of which is fear. Most people who know someone with cancer understand the many levels of fear about the disease. There's fear of the unknown; fear of loss; fear of change; and fear of recurrence, to name just a few. As I approach my 13th Cancerversary, I've moved beyond fear of recurrence (not likely after 10 years for my cancer) to fear of secondary cancers or late effects. I don't think about it every day, but it's in the back of my mind. My cancer-related fears do not rule my life, but they are real and they do affect me. In this situation, my response was to take the lead on gathering information. How do you deal with fear? Take our poll, leave a comment below, and see how others handle their cancer-related fears.
This week I encountered a new and unexpected fear. In her early 30's, a family member of mine was recently diagnosed with breast cancer. Her mother was treated for the disease several years ago, and her grandmother died from it many decades ago. We suspected it might run in the family, and that hunch was just confirmed through genetic testing. She notified us family members and immediately fear took over. Some people began blaming themselves for possibly passing on a gene that could hurt their children; someone is in denial about what that means for her; some people are angry; and the person with cancer has accepted the news and is moving forward. But everyone is afraid.
It's hard not to feel helpless and paralyzed by the fear, especially as a cancer survivor. I have already lived through cancer and already worry about the possibility of a new cancer caused by my treatment, but now I have to worry about a possible genetic predisposition to yet another cancer? It's overwhelming to think about that, not to mention to think about how this news could affect other loved-ones of mine. The what-ifs began taking over. What if I have this gene and have to make a huge decision about what action to take (like actress Christina Applegate's decision for a bilateral mastectomy)? What if I have this gene and no one will want to date me when I tell them? What if my life will never be back to this "new normal" that I worked so hard to create? What if more of my loved-ones have the gene?
But then it sort of it me. What if I was too scared to do something with this information? Despite the urge to dwell on the what-ifs and have a breakdown, I did what I've learned and what I teach others to do - I began empowering myself with information. I called the company who made the test that my cousin took to better understand what they tested for, and I contacted the people and organizations that I knew had information that would be helpful. I asked questions and did some initial research. Some of the answers were not what I wanted them to be, but overall it is comforting to be informed. At this moment my what-ifs are clearly premature and unnecessary since I have no idea who else, if anyone, in my family carries the gene. Now that I know more about the topic and the situation, I have clear next steps to take that get me closer to reducing my fear.
Am I still scared? Sure. But at least I have a plan and feel more in control of the situation. I will add the information to the list of things to talk with my doctor about, and I will file it away with my other cancer-related fears so that I don't let cancer take over my life. And, of course, I will continue to support my family as we deal with this diagnosis and any others.
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Celebrate Your Cancerversary in the Big Apple!
Posted by Linah Lubin on April 1, 2010
Everyone acknowledges a Cancerversary differently. Some people send letters to members of their health care team, thanking them for their help and support in years past. Some people go on trips or have parties. And others, after going through as life-altering an experience as cancer, vow to live each day to the fullest. If you’re looking for something different to do, grab your friends and celebrate your Cancerversary with us! Join NCCS staff and thousands of cancer survivors as we participate in the EIF Revlon Run/Walk for Women in New York City on May 1st! This event is about empowering people that have been affected by cancer, and we look forward to celebrating survivorship with all of you! To learn more, visit the NCCS Team page (we’re team 3562). If you can’t join us, leave us a comment and let us know what you do to celebrate or acknowledge your Cancerversary.
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Celebrating Dan Waeger
Posted by Anne Willis on March 18, 2010
This week NCCS staff got together to mark a Cancerversary of our own: March 16th marks the one year anniversary of the death of Dan Waeger, a young lung cancer survivor who not only worked at NCCS but taught us and everyone he met how to truly live. Dan continually beat the odds and did it all with a huge smile on his face. When Dan was around there was never a bad day for any of us, despite what he was going through. We all watched as Dan lived with cancer, whether he was off giving a moving speech, dating the woman he would eventually ask to marry him, or hitting the driving range to play the sport he adored. With his heart wide open, there was no way you could not love him. Others who loved Dan marked the day in different ways. Many people wore green, his favorite color, and other groups of people got together to tell their favorite Dan stories. Dealing with reconciling the sadness of his loss with Dan’s message to turn that sadness into something productive, his fiancée Meghan spent the day at the University of Maryland Greenebaum Cancer Center visiting young adults with cancer. Dan and Meghan started a blog that she continues to update, and Meghan poignantly and eloquently discusses Dan’s impact on her life, with several particularly insightful posts as this anniversary approached. You can read more about their story at www.waegerwillwin.blogspot.com. 
Marking Dan’s death was very tough on many people, especially those of us who were privileged enough to spend nearly every day with him at the office. Dan was part of our family and we are devastated by the loss. But we needed to do something to acknowledge how important he continues to be in our lives. It probably would have been easy for each of us to stay home and feel miserable. However, one of Dan’s rules (or Waegerisms as we call them) is that it is ok to be sad 10% of the time, but after that you have to do something about it. While this milestone is difficult for us all, we listened to Dan’s advice and took the time to share our best stories and celebrate the inspiring young man who we all feel grateful to have known. We sat together reminiscing as we passed around photos of Dan (smiling, of course) and decided to make a collage of our memories and the photos that captured Dan’s essence to hang in our office as a lasting tribute to him.
To some people, it may seem strange to consider the anniversary of someone’s death a Cancerversary. But that is what Cancerversary is all about - acknowledging that, as survivors, friends, family, and health care providers, cancer changes us forever emotionally, physically, and spiritually. Cancerversary is about knowing that you are not alone, and, as people affected by cancer (in whatever way), we share a common experience. That commonality may be something we feel positively or negatively about, but it’s helpful to know that we are not the only ones going through it; we are a community of people who have been touched by cancer in many ways and understand the fear, anger, joy, relief, and other emotions that people feel at different times. By giving survivorship a voice and sharing our stories as a community, we have the ability to come together to make a difference in the lives of many while finding some comfort for ourselves. We will forever miss Dan Waeger but hope that telling his story will inspire and empower others in our community who are affected by cancer.
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Getting the information you need
Posted by Linah Lubin on March 8, 2010
A few weeks ago I was contacted by a non-Hodgkin lymphoma survivor who completed treatment including chemotherapy and bone marrow transplant within the last year. He wanted to learn more about our resources and see how he could help get materials and information into the hands of cancer survivors sooner in the treatment process than he received them. He came to the NCCS office and met with a few members of our staff, and talked about his experience – what it was like to be one of the only men in the infusion room; how anxious and uncertain he felt about receiving chemotherapy; how his sense of humor helped get him through. This conversation got a few of us wondering – how often do people diagnosed with cancer receive the information, materials and support they need at the right time? When is the “right” time to receive resources that can help someone get through cancer – physically and emotionally? When someone hears the three words “You have cancer,” they probably don’t hear much else, so it might not be the best time to overwhelm them with information right at diagnosis. But people may make treatment decisions before having time to do the right research and ask the right questions of their doctor. They might have been able to wait a few more days or weeks to make a decision that might have better met their needs. Of course, there are so many factors involved in the way people receive and process information, and it is different for every individual. That’s why we want to hear from you: Did you get the resources you needed at the right time? Weigh in by leaving a comment below or taking our latest poll.
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"Shades of Survivorship"
Posted by Anne Willis on February 24, 2010
Cancer is so personal, and we all experience cancer differently as survivors, caregivers, and healthcare professionals. For some people, especially minorities, finding support that relates to their culture and circumstances can be challenging, confusing, and isolating. We recently posted in our News and Reports section an article from CURE magazine on "The Many Shades of Survivorship," which does a great job of explaining cultural impacts on survivorship. As people like Joyce work tirelessly to address the needs of the underserved, NCCS is also working to provide resources to people who often don't have culturally appropriate or relevant information, and we have been working over the past several years to reach several underserved groups. Our Cancer Survival Toolbox® has always included survivor stories from different backgrounds and cancer types. The conversations with healthcare professionals, family and caregivers, and other survivors in the program represent real interactions that affect all types of survivors. In 2007 we received funding from the Centers for Disease Control and Prevention to build out our Cancer Survival Toolbox by adding new disease-specific programs focused on blood cancers. This funding enables us not only to develop new programming, but also to reach out to African Americans and Latinos with these and other resources. Like Joyce in Louisiana, we are working to use our national scope to improve the lives of people with blood cancers, especially those who are disproportionately affected by the disease. Our Living with Multiple Myeloma program of the Cancer Survival Toolbox is targeted to African Americans, who are impacted more by this disease than other groups. To help us spread the word about our free resources, sportscaster James Brown filmed a Public Service Announcement. See the video below and stay tuned for more blogs about our underserved outreach. If you are interested in learning more about what we're doing, feel free to e-mail me at awillis@canceradvocacy.org.
This weekend I heard the story of a Louisiana woman named Joyce Ivery. A 19-year cancer survivor, Joyce realized that there was not much support that she could identify with, so she and her family started a support group for African Americans. Fifteen years and a devastating hurricane later, the group is still successful and provides much needed support to African American women and their families in New Orleans and other cities in the state (she had to leave New Orleans after Katrina but still runs a group in the city). She described the organization's model as "Faith + Love + Knowledge + Empowerment = Wellness," which I thought was particularly insightful. Since creating her organization and providing services to people who otherwise would not have found support, Joyce has improved the lives of hundreds, if not thousands, of women. It's these acts of advocacy, whether at the community level or nationally, that create positive change for all of us affected by cancer.
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