As soon as you are diagnosed with rare cancer, finding information and treatment can become extremely challenging. Travel may also be necessary.
Rare cancers often exhibit symptoms similar to more prevalent ones, prompting physicians to search for other possible explanations first – potentially delaying diagnosis by an extended amount of time.
What is a rare type of cancer?
People living with rare forms of cancer face unique obstacles. Finding information and having doctors that specialize in it might be more challenging, yet they shouldn’t feel isolated; many other people with rare cancers share a community. Just don’t see their stories often in the media or online!
Experts often disagree on what qualifies a cancer as rare, with some considering it uncommon if it affects less than 6 in 100,000 individuals per year while others consider cancer rare when it originates in an unusual part of the body for that type. Melanoma that starts in an eye is considered uncommon.
Research on rare cancers has long been underfunded due to their non-shared genetic markers or causes. But more recently, initiatives like Memorial Sloan Kettering’s Cycle for Survival have helped change that.
Cancer rates differ among populations, with most cases seen among young adults (Figure 1). Adulthood generally sees rare cancers decline faster than non-rare cancers until age 60 when they level off; then their ratios gradually shift towards being equal until around age 80 when both sides become almost evenly balanced.
Doctors typically recognize rare cancers based on their location and symptoms. For instance, lung or breast cancer could present with similar symptoms to common ones like backache, making it harder for physicians to recognize and diagnose it correctly.
Why is it hard to find information about a rare type of cancer?
As rare cancer types tend to be studied by only a select few researchers around the world, diagnosis can often take longer and treatments must first undergo clinical trials that require large numbers of participants – making life even harder if yours is one of only a handful.
Your doctor can give you information or refer you to someone who can. Similarly, ask your specialist nurse about patient organizations and support groups specific to the type of rare cancer you have; such groups can help manage practical matters like work and finances while helping manage emotions such as stress. Furthermore, our Support Line offers emotional advice as well.
Sometimes a rare cancer is actually just a subtype of something more prevalent; for instance, T-cell lymphoma is one of the rare subtypes of Non-Hodgkin Lymphoma; therefore when searching online information on T-cell lymphoma you might instead find information related to Non-Hodgkin Lymphoma instead.
A cancer diagnosis can be overwhelming for anyone, regardless of its rarity. When dealing with rare forms, however, family and friends may not understand what you’re facing and may not know how best to support you. Traveling for treatment could also prove challenging and cause unnecessary anxiety.
How do I get a diagnosis of a rare type of cancer?
Rare cancers may take longer and be harder to diagnose due to lack of experience treating them or unawareness of new developments in treatment, and symptoms often mimicking more common diseases – prompting physicians not to suspect cancer immediately as the source of an individual’s problems but instead explore alternative causes first.
Becoming aware of a rare cancer diagnosis can be emotionally exhausting and isolating; to make matters better, bring a friend or family member along to appointments when possible, especially if there are questions to be answered by your physician. They can take notes for you while reminding you what was discussed with them; also it’s helpful talking about both emotional issues as well as practical concerns like work or money that might arise as part of managing this illness.
If you decide to seek treatment, it’s essential that you choose a hospital with expertise in rare cancers. That way, you will gain access to cutting-edge care and research based on current knowledge. Though this might mean traveling farther for your care than usual, knowing you will receive care from experts familiar with rare cancer types can provide peace of mind.
Connecting with others who share rare cancer through patient organizations is another option, offering support, advice, and the chance to meet people in similar situations. You can find these groups either online or by reaching out directly to cancer centers in your area.
What are my options for treatment?
While any diagnosis of cancer can be frightening and frightening, rare or less common cancers can leave you feeling particularly helpless and alone. This might be because getting diagnosed takes longer or you must travel further for your treatments – but you don’t have to go it alone. Reach out for support today – there is someone there ready and waiting.
If you are living with rare or less common cancer, there are various treatment options available to you and it is essential that you discuss them with your physician. They may also help provide support and informational resources.
Your diagnosis could take longer due to symptoms being mistaken for more prevalent illnesses. While this may be frustrating, your physician must spend time conferring with other health professionals experienced in diagnosing rare cancers before determining the most efficient way to approach your case.
Rarer cancers tend to receive fewer clinical trials due to difficulties recruiting enough participants and due to lower overall rates, although progress has been made in this area; for example, the 100,000 Genome Project is providing us with insight into how genes impact risk for certain diseases including cancer.
At Cancer Council Australia, our mission is to support Australians living with cancer – even those affected by rare or less prevalent forms. Recently we developed content and resources for 10 additional less prevalent cancers to provide you with accurate evidence-based information about your cancer, how it’s diagnosed, and which treatment options may be available.