My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, November 27, 2008

Frontiers in Cancer Prevention Research

I recently returned from an American Association of Cancer Research conference held in Washington DC, Frontiers in Cancer Prevention Research. I was very grateful for the invitation. I attended the conference as part of the AACR's Scientist-Survivor Program. The program is a wonderful one, I am very privileged to be a part of it. I am able to learn what is new in cancer research directly from the scientists who have dedicated their lives to curing cancer. Attending these conferences and being exposed to new advances in cancer research gives me such hope that the answers will one day be found.

So many presentations are offered at each AACR meeting that I am usually attending programs and presentations at the convention center from morning until night. I knew that before going, so arrived in DC a day early to site-see. Also, very cool coincidence, a signet ring appendix cancer survivor I met via my web site and have communicated with for about a year lives in DC, so I was able to meet her for breakfast downtown the day before the conference. We had a great time and talked for a few hours. I was kind of proud of myself, I used a bus to get to the Metro station and from there navigated two subway lines to get to the location where we met. The DC subway system is wonderful and very similar to the Chicago subway system I've used.

DC is not a place I'd ever planned to visit. I've never been interested in history or politics so DC was never on my list of "places to see", but it turned out I loved the city. After meeting with my friend, I took a 4 hour bus tour of the famous sites. I was able on the tour to see the Capitol Building, the White House, the Washington Memorial, the Jefferson Memorial, the Lincoln Memorial, the Vietnam and WWII Memorials. I didn't have time after the tour to go to see any other sites, but I hope now to go back again as a tourist someday to see what I couldn't see this trip. I'm thinking it might be a nice family vacation next summer! I want to see the botanical gardens, the Smithsonian museums, Arlington Cemetery and the Art Museum.

I took lots of notes and listened to many scientific presentations. I will share what I learned here soon.

Thursday, November 20, 2008

All or nothing?

It's interesting. Since my own diagnosis, my view of cancer and cancer treatment has changed. I think many of us have thought of cancer as an "all or nothing" disease for a long time. We are either cured or we aren't. We survive or we don't survive. Our cancer is either gone or it's there. The only good outcome is that our cancer is gone and we move on with our lives intact cancer-free.

We feel having cancer means we are on a path to death, and having no detectable cancer means we might have a chance of staying alive. All or nothing.

But I met a woman when I was in chemo who had been receiving chemo weekly for 4 years. She was not cured and she was not dying. She had a tumor that could not be removed surgically, but the tumor had not grown or spread or threatened her life in 4 years. She tolerated chemo well, and aside from living 4 hours of her life weekly in the oncology chemo room, her life was pretty much normal.

I've since been in contact with 2 long term appendiceal cancer patients who have never really been cancer free. They have been eight years and twenty years with appendix cancer recurrences. And in the meantime, between treatment, they have valiantly lived their lives. Productive lives. Meaningful lives. Lives that aren't just about cancer. They have survived in spite of cancer. Raised kids, pursued careers, lived lives...with appendix cancer.

I got to thinking about that. I was in chemo for about 4 hours once a week for many months after I was diagnosed. Not bad, but not how I would have chosen to use my time under other circumstances. But I'm a nurse. For years I've seen dialysis patients. Patients who live their lives hooked up to dialysis IV pumps for as long as we are hooked up to chemo pumps....but three days a week...for years. And they live long and productive lives in spite of that. Their lives are altered, but they still live. They still contemplate a future; they tolerate dialysis as they await a possible transplant and a new normal life.

I have now been exposed to many scientists involved in cancer research. They are so close to so many breakthroughs. There may come a day in our lifetime when there is a cancer cure...if we just wait and stay in treatment. Just like dialysis patients remain in treatment while they await a kidney transplant. The day when they can live without being in treatment.

That day that may come for us. The day cancer is defeated.

I want to be here to celebrate that day.

Saturday, November 8, 2008

Your Input Needed: The Abdominal Cancer Connection

Sometimes I feel the stars were kind of aligned...in my being diagnosed with cancer and my advocacy efforts since.

I'm in a kind of unique position. I started nursing school in the late 1970s. CT scanners were new and not every hospital had them. The word cancer often still not spoken aloud; it was still the "C word"....the "big C".

When a patient came in with symptoms of problems in their abdomen, CT scans weren't available then. If an x-ray showed a possibly abnormality, the patient was taken to surgery for an "exploratory". They had to surgically open the abdomen with a big abdominal incision to see what was inside, to "explore" the abdomen and make a diagnosis. When an abdomen was opened and metastatic cancer discovered, no attempt was made to remove the cancer or to even determine its source. Metastatic cancers into the abdomen (peritoneal surface malignancies) were considered untreatable and fatal. The family (and maybe the victim) was told that the patient was terminal and had 3-6 months to live. End of story. It was irrelevant whether the cancer originated in the ovaries or colon or appendix. The prognosis was the same, terminal.

In the end I was one of those abdominal cancer patients. Interesting that even two decades later when my cancer was discovered I was told I was untreatable, not much had changed. Now it was to my benefit that I was a stubborn person, a rebel, and that I had the ability because of my education and experience to locate and read the published medical literature. That combination, that alignment of the stars, helped me to in the end survive my terminal diagnosis by 7 years now. I couldn't take "terminal" for an answer, I wanted at least a chance, I wanted to try something, to at least give it a shot. My kids were 10 and 11 years old. I needed to stay alive.

I truly hope the Abdominal Cancer Connection will help connect those diagnosed with these cancers to the resources needed to help them deal with all of the issues involved in obtaining treatment and surviving abdominal cancers. I want everyone to have a chance. I want the Abdominal Cancer Connection to serve those diagnosed with these cancers, to be a place where they can find answers and support, to be a beacon of hope.

I need the help and input of those of you reading this blog and my web site. I want to prioritize and identify needs my organization can address for patients struggling with this diagnosis. I hope to soon put together an online survey, but in the meantime, please tell me what your greatest needs have been since diagnosis. You can email me at carolyn@appendix-cancer.com or add a comment to this blog. Thanks so much in advance for your help!


A list of needs I have compiled based on the 500 appendiceal cancer patients I have communicated with to date include:

•Education for the lay public about these diseases and available treatment options. Possibly the creation of published pamphlets that could be available in oncology or medical offices, libraries etc. Public media venues promoting education and awareness.

•Education about peritoneal surface malignancies (appendiceal cancer and other advanced cancers of the abdomen) and about newer available treatments directed towards the medical community, especially education directed towards oncologists, general surgeons and nursing professionals.

•An international referral list of surgeons and facilities offering cytoreduction surgery and hyperthermic peritoneal chemotherapy along with a listing of nearby housing facilities for patients and families along with lists of insurance companies that have agreements with these hospitals and physicians

•A database of information to assist those who must travel for treatment (Angel Network etc.)

•Emotional support networks or resources for those diagnosed through all stages of illness and treatment

•Support communities and information/referrals to help those with young children cope with the consequences of this diagnosis and treatment.

•Support and information for those who live with colostomies/ileostomies as a result of treatment

•Support and information for those who go home on total parenteral nutrition (TPN) or who will go home with PEG and gastro tubes. Also nutritional support information for these patients.

•Support and information for caregivers.

•Work to increase the number of insurance companies who view this treatment as “Standard of Care” and provide coverage

•Possible future fundraising activities with funds directed towards disease research and patient support