Most people know that “cancer” is a sickness that can hurt more than one organ in the body. The word “cancer” causes many other emotions. However, the majority of people are unaware of the fact that many people’s cancer journey begins with a diagnosis of an uncommon cancer. These are rare types of cancer that only affect a small part of the population. They can be hard to treat once they’re found, and they may be painful. Because of this, it is essential for the few people who have these cancers, their families, the people who care for them, and the support networks that include hospitals to learn more about them.
This blog will discuss what makes a disease rare, how to diagnose rare tumors, the medicines currently available, the support systems available, and how people who have survived rare cancers can go about their daily lives.
What Defines Rare Cancer?
It was considered necessary that you should be informed that the expression “rare cancer” is often employed to describe cancers with low rate incidence. The number of persons affected by orphan illnesses and the incidence of rare cancers does not usually extend beyond six per 100 thousand of the population per year. Although it is possible to express the opinion that it is quite a low percentage, it is essential to know that rare cancers make up approximately twenty percent of the total share of cancer cases worldwide—for example, such cancers as sarcomas, thymic carcinoma, adenoid cystic carcinoma, and several others.
These malignancies are uncommon, so many physicians do not know they exist. This means that the diagnosis is usually done at a reasonably advanced stage. In addition, medical research and clinical studies on uncommon cancers are limited because fewer people are affected by them. Therefore, this limitation will create a new set of challenges for patients and physicians to cope with, which makes the task of researchers even more complicated when it comes to developing effective medicines.
Difficulties in Identifying Rare Cancers
Another problem with rare cancers is that they require many follow-ups and are usually difficult to stage. The first conclusion is that these cancers aren’t prevalent, so doctors might not “flag them up” very well. Cancer precursor symptoms often look like other common illnesses, so they may not be spotted or given the wrong diagnosis. For instance, a person may develop gastrointestinal stromal tumors that look like less serious stomach problems but need to be addressed right away.
The diagnosis is even more complicated because no specific diagnostic screening tools exist, especially for a particular disease. Imaging studies, blood tests, and biopsies are some types of investigations that may give unclear results or need more information, which may mean that more invasive investigations or meetings with other specialists are required. Also, rare cancers may be both molecularly and clinically diverse, which means that different people with the same diagnosis may have very different symptoms.
Recently, genetic and molecular testing has become very helpful for some rare kinds of cancer. It has helped doctors learn more about how the disease works biologically. Some patients need these tests but are only sometimes available or covered by insurance. This makes things more complicated for people who need a correct evaluation.
Treatment Options and Approaches
Because these cancers only happen sometimes, the best way to treat them is complicated since the general approaches used to treat more common cancers don’t work well for them. Oncologists usually have to use surgery, radiation, chemotherapy, targeted therapy, and experimental treatment to treat less common cancers because there are few in-depth studies on them. Even though they are limited, clinical studies are beneficial for people with rare cancers because they offer new treatments that aren’t usually available.
For instance, some of the subtypes of sarcomas that may need surgical interventions may instead undergo multitarget modality treatment with specific treatments tailored to changes at the molecular level in cancer cells. Many types of cancer can benefit from immunotherapy, as has been demonstrated. It may be able to treat unusual types of cancer due to its ability to interact with the immune system in one way or another.
Many people, like cancer professionals, radiology professionals, surgical professionals, and genetic counselors, can help you determine the best action plan. Also, people with rare cancers may need to go to other medical centers because they are often the best at treating those diseases. So, hospitals known for their study and having access to these new treatments are usually better equipped to handle unusual cancer cases.
Support Resources for Rare Cancer Patients
Often, someone hears that they have a particular type of cancer that is very rare, and then it is difficult to determine how to go on living. Since chronic tiredness is not so frequent, it is typical for such patients sometimes to feel like they are the only ones suffering from the same. However, there are a lot of sources and opportunities that can support patients with rare cancers, and their close ones face special features of the disease.
Support groups for patients and organizations that work with rare cancers are beneficial. It generally helps people with certain types of rare cancer by giving them information, putting them in touch with doctors and other helpful staff, and giving them emotional support. The National Organization for Rare Disorders and the Rare Cancer Alliance are two of the groups. In this way, they support study projects and fight for better treatment, more funding, and more awareness.
Patients also share information and seek help and information from other patients in online communities, boards, and groups on social media sites. Participants don’t have to worry about being lonely because virtual spaces let them meet with others virtually, no matter where they are in the world.
As already said, financial help programs are another source because treating rare cancers can be pricey. Cancer patients with trouble paying for basic necessities like transportation, medicine, treatment, and housing can get help from various cancer care organizations.
Living with a Rare Cancer: Coping Strategies
Patients with rare cancer are equally as concerned not only about their prognosis but also about how effective their therapies will be. Coping behaviors assist in feeling good mentally and emotionally, which strengthens the cancer process.
One of the only things you can do for your condition is to stay in touch with your doctors. The patient must be able to question the physician, speak to other physicians, and weigh all the options. Therefore, patients do not have to be worried about attending the clinic. They should know that they have a rare type of cancer and what may be expected from the treatment.
It also involves helping and encouraging a cancer patient to cope with all the feelings. Of course, friends, family members, or even specially trained psychologists can assist a cancer patient in bearing the swings of the changed emotions caused by the illness. Asthma patients should hold their breath when breathing and avoid laughing or unnecessary talking during the treatment process. Mental health is also essential; one can benefit from deep breathing or meditation.
Worldwide, it has been proven that exercise, if well conducted, can boost mental health. For instance, exercise has been described as countering fatigue, reducing the signs of depression, and enhancing immunity. Nevertheless, these values may improve a person’s quality of life, even if they have cancer.
Cancer patients should also take complementary therapies like aromatherapy, yoga, and acupuncture if at all they have the resources to do so. The beauty of these therapies is that they create an opportunity for cancer patients to have peace and minimize the effects of standard cancer treatments.
Conclusion
The term’ can cancers’ encompasses many individual offerings; they are complex to diagnose and treat. But there is hope, thanks to new areas of oncology like genetic tests, targeted therapies, immunotherapy, and others on this list. People with cancer go through social suffering in physical, emotional, and mental ways. People with rare diseases go through social suffering when they have to deal with their symptoms and accept that they have a rare disease.
So, people who have rare cancer can take charge of their lives despite having the disease by learning more about it, getting help, and finding healthy ways to deal with stress. Also, more studies and advocacy are needed to find better treatments and get the word out about these rare but essential cancers.