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We hope that the Forums section and Quick Links on this website help you to find someone with your cancer. People with rare cancers need all of the support they can get. Many people feel isolated because they can’t find information on their condition. Our purpose in developing this page is to give you some tools and techniques to finding others with the same diagnosis. We will go through both traditional and non-traditional methods of tracking down others.
Because you have a rare cancer you need to think about finding others on a global basis. My daughter was diagnosed with a rare brain tumor at the age of six months. Her type of tumor had only been described since 1993. So far I have found 13 other families world-wide that have her type of cancer using these methods. Finding others can be beneficial not only for moral support but also to coordinate and compare therapies. Don’t give up, you can find others and make it easier for them to find you.
Rare Adult Cancer and Pediatric Cancer Forums - online forums by cancer type and other needs.
General Cancer Listserves - email listserves for cancers that are not rare.
Alliance of Information & Referral Services - AIRS is the professional association for nearly 1,000 programs throughout North America that provide information and referral on human services in their respective communities. Some organizations have matching patient programs. Read about the 211 initiative on this site.
American Cancer Society - The American Cancer Society uses local chapters to match people with similar diagnosis. I am told that each town has a "navigator" who helps cancer patients find whatever kind of help they need including other patients with rare diagnoses. Phone: 1-800-ACS-2345 to find your local chapter.
Beth
Israel Deaconess Medical Center - This center in Boston has a Patient-to-Patient,
Heart-to-Heart matching program for certain diagnoses. This
web page will allow you to fill out a questionnaire online.
Phone: Hester Hill at (617) 667-2661.
Dana
Farber Cancer Institute - Dana Farber in
Boston also has a One to One matching program; Susan DeCristofaro
runs it.
Phone: Susan DeCristofaro at (617) 632-4880 Social Work Dept. at (617) 632-3301
Massachusetts
General Hospital - They have a Network for Patients and Families that
matches people with similar diagnoses.
Phone: Sally Hooper at (617) 724-3876
MD
Anderson Support Contact Program - This patient and caregiver matching program will have a
member contact you in 24 to 48 hours with any matches that they
have found in their network.
This is an NIH Cancer Center so it is a very good bet for
rare cancers.
Phone: Houston (713) 792-2553 Outside Houston: 1-800-345-6324
Onco Chat - This is a real-time global support community for people whose lives have been touched by cancer. We don't offer medical advice or professional counseling. We do offer lots of hugs and understanding from people who share similar experiences and emotions. This is an internet relay chat format that uses stand IRC or mIRC.
Ovarian
Cancer Connection - Survivor-to-fighter matching service
available for patients with ovarian cancers.
Phone: (806) 355-2565 Fax: (806) 467-9757
R.A.
Bloch Cancer Foundation - This a service that
matches people who have the same diagnosis.
If you can’t find a match please volenteer to be a
representative. A
member of the ACOR rare Cancer list wrote:
"I called the Bloch Cancer hotline. They have a volunteer (patient) who
has gone through the same type of cancer give you a call to let
you know there is hope and share knowledge. They didn't have
anyone volunteers who had malignant schwannoma (aka
neurofibrosarcoma), so I volunteered myself. Now anytime someone
calls with my 'flavor' of cancer, I'm the one who calls them (they
give me a free number to use). So not only have I talked with 5
people sharing my cancer, I've helped Them emotionally and with
information. Plus, since my cancer is so rare, it probably only
takes 2 hours of my time a year. Granted, this option isn't for
everyone, but I'm in remission ( 5 years if my appt. goes well on
the 12th), so it's good for my soul as well."
Phone: 800 - 433-0464 Fax: 816-931-7486
Y-Me
National Breast Hotline - Callers can be matched
with a survivor, patient and/or supporter who have had a similar
experience with breast cancer.
Phone: English 1-800-221-2141 | Español 1-800-986-9505
Come up with a list of doctors and try making contact through them. At first I couldn't find anyone either. I tried the American Cancer Society, North American Brain Tumor Association, the Pediatric Brain Tumor Foundation, National Organizations for Rare Diseases, and pretty much ended up with nothing. My daughter’s type of tumor was only documented as of 1993 so most the journal articles that I could find were case descriptions, surgery reports and histologic findings presented at conferences, that sort of thing. I started a list keeping a list of the references that kept recurring in the works sited section at the end of the journal articles. From this I came up with a list of doctors who at least had experience with this type of tumor.
Then I started hunting the doctors down at their hospital or research institution through the websites. I found that if you call them and talk to their assistant/care coordinator or whoever sets their appointments, and explain the situation that you are trying to connect with others who also have this type of rare cancer. Definitely emphasize that you have read their journal articles or conference preceedings, so you know that they have at least one patient with this rare type of tumor. Ask if they can give you contact information, usually an email, which is not personal information like their home address. If they refuse to do that you can leave your email address or other contact information. I got one helpful receptionist to put a note in the patients chart explaining the situation and asking them if they would like to contact me at my email address. Some doctors even give their email addresses in their contact information on the hospital directory websites.
Get your Oncologist to be your advocate. I also got my oncologist to ask around with some of her peers at the annual Pediatric Oncology Group Conference, and see if she could find some other cases and patient contacts. My oncologist readily admitted that we needed to find a specialized pediatric-neuro-oncologist to deal with this rare tumor, and was great at helping us.
View these books at Amazon:
Cancer Talk by Selma Schimmel and Barry Fox.
Lessons Learned from Cancer by Marti Ann Schwartz
Magical Story by Leslie Bowden, Brian Bowden, Sonja Beal (Editor)
The Cancer Monologue Project by T Taylor (Editor), P Thompson (Editor), J Bull