I am a nurse, an advanced practice nurse. I currently work as a Clinical Nurse Specialist and Clinical Educator in a hospital, and LTAC, a long term acute care hospital. Those are very difficult places to work! I recently joined the Oncology Nursing Society, as I do also work with oncology patients and am the president of this non-profit. They have monthly meetings, usually hosted by drug companies. Of course good food is provided. Some of what I’ve learned in these meetings is discouraging. We are learning about new and better cancer drugs just approved by the FDA. But I was kind of disappointed, one of the new drugs for lung cancer prolongs stage 4 lung cancer survival from 9 to 15 months. So without the drug, you might live and average of 9 months, with the new drug 15 months. I want years! Don’t we all?
But I have met great people and have been able to educate physicians and nurses about appendix cancer and this non-profit. I’ve met doctors who are oncologists who are truly caring and looking for the best new drugs for their patients.
I also talked to a nurse who worked in cancer research, she said most of their clinical trials involve immunotherapy, helping your body’s own immune system kill cancer cells. I want to learn more about these new immunotherapies.
Last night I met one of the drug reps who herself was a 24 year breast cancer survivor. She didn’t look old enough to be a long term survivor, so I asked her at what age she was diagnosed with breast cancer.
She was diagnosed at age 22 and her breast cancer was advanced, stage 3B. I assumed she was BRCA…had the gene that causes breast cancer as usually those patients are diagnosed at a young age. But no, her cancer resulted from another cancer she had been diagnosed with years before her breast cancer, Hodgkins Lymphoma. That cancer was treated with radiation to her chest, which caused her breast cancer. She’d had a bilateral mastectomy, chemo and radiation when she was 22, but is now a 24 year survivor of 2 cancers! She was married and spoke of her children. It’s great to hear stories like that, and being part of the Oncology Nursing Society will probable introduce me to more encouraging stories that I hope to share with you!
I hope to learn more about cancer research and new targeted therapies. I will keep you posted with what I learn!
I really think there is a need for community in cancer survivorship. Especially in our own appendix cancer community. I did for a very short time join a cancer support group, but I didn’t last long there. The community was mostly women diagnosed with breast cancer. And while I know cancer is cancer and we all shared that, I kind of didn’t fit in. And I’m sorry, but sometimes I have resented the breast cancer community. They have so much publicity and education, have so many fundraising events, have so many research dollars. We with appendix cancer see very little of that for our disease. For breast cancer patients, when one chemotherapy doesn’t work, there is always a new one waiting in the wings. My sister-in-law had stage 4 breast cancer, but her life was extended many years by new drugs that had just come off the pipeline. When one drug stopped working , there was another one that helped. You can also be screened for breast cancer, and breast cancer caught early has an almost 100% 5 year survival. There is no screening for appendix cancer, and if there was, it probably would be hard to get and not covered as our disease is so rare. And our surgeries are much more difficult than mastectomies.
The Heat it to Beat It walk is the closest I’ve felt to being in an appendix cancer support environment.
I would like all of you reading this to think about taking one step further in becoming part of an appendix cancer community. I will speak to and support anyone who calls or emails me, I do that whenever I can. But I also have forums on this site, and they can become an on-line support group for us (we are so rare we will never really find an in person support group). There is one other appendix cancer support group on line, the PMP Belly Button Club. I know those who have liked to be a part of that but sometimes get discouraged at hearing of so many struggles with this disease.
But we can start a support group here and maybe make it a bit different. Maybe we can talk about and support each other in our cancer struggles, but maybe we can also do something constructive. Search for opportunities to educate the public and medical community about our disease, support each other in coming up with ideas for events to support and educate about our cancer. Maybe we can even make it part book club! In my many years as a cancer survivor, I’ve heard of the book Emperor of all Maladies, a “biography” of cancer. I finally ordered a copy. I usually read on my Kindle, but this I ordered hard copy as it may be something I want to highlight. Anyone want to read it with me?
So maybe come aboard and join the forums, introduce yourself and lets have our own unique support group for just us!! Maybe we can even find a way to all meet in person some day! I can rent a shelter at my local fairgrounds and we can have a picnic! I really care about all of you.
And lastly, remember, we are ALL cancer SURVIVORS if we are still living even one day past diagnosis!