Rare Cancer Guide - A Concise Summary

A cancer is considered rare if it is diagnosed in less than 15 people per 100,000 each year. This comes out to a total of about 40,000 cases per year in the US. For example, ovarian cancer occurs in about 21,000 women each year, which means it is classified as rare. Most rare forms of cancer in adults are grouped together in a larger classification. For example, leukemia is a general classification of several rare types of cancers that occur in the blood.

The common cancers such as lung, breast, prostate, and colon cancer attract much more attention and get much more research funding than the rare types of cancer. Of course this makes sense because so many more people are affected by the common cancers. However, the common cancers may be caused by many different factors - only one of which may be a genetic predisposition. Many of the rare forms of cancer can't be easily linked to environmental and other factors. Rare cancer research may be able to help scientists unlock the genetic codes which explain how humans get cancer.

Getting Clinical Care For Patients With A Rare Cancer
The problem with a rare form of cancer is finding a physician who is familiar with its diagnosis and treatment. Because these cancers don't happen as much as the common cancers, most physicians don't have experience in diagnosing and treating these cancers. In order to get appropriate treatment for a rare form of cancer, you may have to continually ask your oncologist for answers. You may have to learn how to do the research yourself and even travel to see other doctors who specialize in an area of research similar to your cancer. Don't be surprised if the medical advice you get seems conflicting. Because these cancers are rare and the research may be limited, the science behind the treatments may vary widely.

Don't worry about offending your doctor by asking for a second opinion. Remember these cancers are rare, and most physicians will have little experience in dealing with them. It is OK to ask for a second opinion. Some insurance companies may even require a second opinion in the diagnosis of a rare cancer. Seek a referral to a nearby "major" cancer treatment center because this will increase your chances of consulting with a specialist who is more familiar with your cancer type. Major cancer treatment centers are usually located in large metropolitan cities. You can usually find out more about these centers by researching online. Take copies of your medical records with you and bring someone along to help you take notes of the your conversations. You don't want to miss any important details! Get someone you know that is skilled in Internet research to help you out with your online research studies.

How To Find Support For Rare Cancer Patients
Many people diagnosed with a rare cancer often feel alienated and alone because there are so few people who share their same condition. It is difficult to find others who can relate emotionally to these people. Most cancer patients find some sort of consolation in discussing their condition with others who have the same condition. Rare cancer patients have a difficult time finding others who have the same condition. In these cases, cancer patients may be able to find a sense of community through online means such as support groups and cancer forums or blogs. Enlist the help of someone who is skilled in Internet research to find these support groups and show you how to interact with them online. Rare forms of cancer may actually be easier to treat because they may have a single molecular genetic flaw that is common to them. However, the difficulty lies in detecting these rare cancers early, properly diagnosing the rare cancer and then seeking the appropriate treatment. Because the cancer is rare, it may be difficult to move through these phases quickly enough.

Consider a Clinical Trial
When cancers grow in spite of treatments such as chemotherapy, radiation therapy and surgery, it may be time to consider other alternatives such as clinical trials. Cancer treatments must go through clinical trials before they are approved for use with the general population. You can choose to be a clinical trial patient and help advance cancer research to find a cure. If you choose to become a clinical trial patient you will have to sign waivers for risk. Weigh the risks carefully!

Get Insurance Guidance
Rare cancer patients often face insurance hurdles. Ask about insurance issues when you visit your oncologist. Some insurance plans require pre-approval before they will pay for a treatment of a rare cancer. Without such pre-approval you and your family may be stuck with a huge financial burden as well as the burden of care.

Keep careful records of all interactions with your insurance company. Document the time, date, the representative(s) you spoke with and the results of the conversation. Request for written approvals and do as much communicating as you can in writing instead of verbally. Make audio or video recordings of your conversations (ask for permission first!) with insurance representatives.

If you can't afford treatments there may be patient assistance programs that can help you. These programs are often referred to as "compassionate care" programs. Ask about these with your oncologist. Be persistent and firm and don't give up!
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