When You’re Given a Rare Diagnosis

Being a rare jewel is one thing, but being diagnosed with a rare health condition is another. Especially when it’s cancer.

It doesn’t matter how often your oncologist says:

• You don’t have the typical risk factors.

• Your type of cancer is rare.

• You shouldn’t have had recurrence.

A lot of good those words do. You don’t like this kind of special. In fact, you don’t want to be special at all.

You’re left with a lot of questions and you don’t understand why it’s happening to you. Rare or not, you have cancer. How are you going to be able to move forward?

It’s tough, no doubt about it. But you can go on.

No matter how discouraged you feel, keep up with your follow up appointments. You’ll be watched closely, so there may be a lot of them. But catching and treating things at the earliest possible stages helps keep things in check.

Talk to your doctor about his recommendations and get a second, third, or fourth opinion. Another doctor may have some additional experience or suggestions that might be beneficial for your situation. Consider traveling to a specialist who has experience treating others with your diagnosis.

Find out if you have any risk factors that you can control; then make any changes you can. Do all you can to support your health and well being – like eating healthy, exercising regularly, not smoking, and making good lifestyle choices. Instead of feeling helpless, taking control of what you can let’s you make a difference in your physical, mental, and emotional health.

And for all the things you can’t control, look outside yourself for help. Draw on a higher power. Seek counseling. Keep a journal. Get out in nature. Surround yourself with positive friends and family.

As long as there is breath, there is hope: So don’t give up. You may have to dig deep to find your strength, but it’s there. You have options, so work with your medical team and keep on fighting. Prove you are rare by beating your diagnosis.

This content was written by staff of HysterSisters.com by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.  Reprinted with permission: When You’re Given a Rare Diagnosis