One of the most important lessons I’ve learned being diagnosed with a rare cancer is that it is really important to be your own advocate. It is important to research and learn about your disease (as difficult as it may be to find information) and to seek out those physicians and oncologists who have treated many cases of your particular cancer. Many good oncologists and physicians may not have experience with rare cancers.
I have been in touch with 700 patients diagnosed with appendix cancer and am all to familiar with cases of misdiagnosis (one woman was treated for ovarian cancer for 5 years before she was correctly diagnosed with appendiceal cancer- she lost her battle). I have also communicated with many who received incorrect treatment initially and only sought treatment with rare cancer specialists when their cancer recurred, often in advanced stages; by then their choices were more limited than if they had sought specialized care initially.
One good resource is NORD, the National Organization for Rare Disorders, though that list of rare diseases is not complete (appendix cancer is not listed there, though Pseudomyxoma Peritonei (PMP), a syndrome caused by mucinous appendix cancers is listed). Other good web sources are the National Cancer Institute or National Institutes of Health.
Many rare cancers also have on-line forums, and while you need to be cautious of the information posted on these boards, often you can find good information about disease treatment and specialists from patients who share your diagnosis.
The best thing you can do is to arm yourself with good information and to compile a written list of questions to ask physicians when you seek opinions for treatment; often it is good to get more than one opinion on treatment protocols. You can self-refer for a second opinion, the request for a referral to a specialist does not always have to be made by your attending physician.
In my case, I sought three opinions before agreeing to treatment, and though it delayed my treatment for a month and a half, it was a good thing, as I in the end treated correctly for my disease. A great article to read about experiences others have had when diagnosed with a rare cancer is Cure Magazine’s Rare Cancer Survey, published in April of 2009. Being aware of the pitfalls others have faced may help you avoid your own as you seek treatment for your rare cancer.
I want to bring awareness to grants available for appendix cancer patients. I met a woman in Washington DC a few years ago after being in contact with her via phone and email for over a year. I liked her a lot.
She had been diagnosed with signet ring appendix cancer and had had cytoreduction surgery and HIPEC about a year and a half prior to my meeting her. We had lunch and talked for a long time in DC, she was doing well and wanting to get back in shape, we talked about health clubs and exercise programs. She passed just a few months after I met her; she had a sudden recurrence of her cancer that was not operable. She left behind a husband and two teenage children.
There were donations given at her funeral, and her husband wants to give a single grant from that fund to an appendix cancer patient yearly for 5 years. They are not very large grants, but are enough to help those going through tough times. I’ve been in contact with over 800 patients newly diagnosed with appendix cancer, and I know some are struggling with job loss and financial difficulties related to their diagnosis and treatment.
The husband wrote this for me to post on my blog/website in looking for candidates for the grants. For those of you who might be interested:
Grants for Appendix Cancer Patients
“An anonymous donor, whose wife had appendix cancer and survived for 20 months before dying, has a limited amount of funding available to help people and families who have received an appendix cancer diagnosis. Please contact Carolyn with your request for a small financial grant and be prepared to show proof of diagnosis.
The donor will provide the limited grants, which can be used for travel, information gathering, second opinions, help with food, babysitters, take a day off from work, whatever is needed.
The donor only requires that you allow him to speak with you and tell you about his wife and also that you keep in touch with him with periodic updates on how you are doing and how the grant helped you, so that he can share that information with donors to his wife’s Fund, and his wife’s family and friends.”
Hair 4 You
I received another email from a woman who is trying to establish a non-profit organization and who is asking for help…not monetary donations, just a vote! I love her idea, as I know how much kids and teens are affected by hair loss and changes in body image. My youngest daughter loves her hair, her greatest concern when I was diagnosed was that chemo might cause me to lose my hair. She couldn’t contemplate a person being bald! I am pasting here the email I received from Rebecca; it would be great if you could help her!
“My name is Rebecca and I am 24 years old, from Chicago. I’m currently in nursing school and I’m also a 2 time cancer survivor. I have set up a charity, called “Hair 4 You” to provide kids/teens with wigs due to medical hair loss. Please keep reading, I am NOT asking for money! I am currently in the running for the Pepsi Refresh Challenge to win $25,000 to get my charity off the ground and become an official non-profit 501(3)c.
The top ten organizations win money at the end of the competition and in the past week I have moved up over 90 spots but am still not in contention to win. Voting is absolutely free and requires a simple email address and password. I am wondering if you can do anything via your blog to help me spread the word and earn more votes. As well as earning more votes, I’d like to get the charity out there so I can start helping people once we hopefully receive money.”
Click here for Voting Site Hair 4 You:
Click here to Vote On Facebook: “