Living with cancer often poses new challenges and experiences that patients never expected. It may be difficult for patients to explain what they’re going through to people who don’t have the condition or have never been a caregiver to someone with cancer.
Recently, the online community Cancer Fighters, which unites people who are fighting the disease, asked cancer patients what they wished other people knew. This article shares five of their key takeaways:
- Not everyone with cancer ‘looks sick’
- Cancer patients aren’t attention seekers
- Cancer patients may get survivors’ guilt
- The battle doesn’t end when treatment is over
- Patients are seeking that ‘new normal’
If you or a loved one is concerned about possible signs or symptoms of cancer and would like an initial appointment or a second opinion, call us 24/7 at (877) 834-8941.
1. Not Everyone With Cancer ‘Looks Sick’
Some people believe that if a cancer patient doesn’t “look sick,” then he or she must be fine, one Cancer Fighters member said: “Friends and some family just don’t get how easily my husband gets tired or how some things are a struggle now.”
While some depictions of cancer patients in the media would imply that people with cancer often lose weight or experience hair loss, that isn’t universal.
“Cancer patients often look the same way they did before they had cancer, and appearance isn’t an indicator of health quality,” says Maurie Markman, M.D., president of medicine and science at City of Hope® Cancer Centers in Atlanta, Chicago and Phoenix.
2. Cancer Patients Aren’t Attention Seekers
Cancer patients may talk about cancer for a variety of reasons, but they don’t do it for attention, one Cancer Fighters member said: “We’re still trying to make sense of it for ourselves. And, quite simply, it’s just a significant part of who we are now.”
If cancer patients want to talk about their illness, it’s OK to just listen. They may not be looking for you to provide feedback and may just want to vent about their experience.
3. Cancer Patients May Get Survivors’ Guilt
“I’ve lost friends to cancer since my diagnosis, and I almost feel like I should apologize to their families because I’m still here and their loved one is not,” one Cancer Fighters member said. “I especially feel it if it’s a child or young person who does not win their battle.”
This patient’s experience isn’t uncommon. In fact, one study found that between 55% and 63.9% of lung cancer patients had survivors’ guilt after surviving their disease.
4. The Battle Doesn’t End When Treatment Is Over
While some people may expect a cancer patient’s life to go back to normal after cancer treatment ends, that’s not always the case. Some patients face new physical and emotional battles.
“The cumulative degradation of the body,” one Cancer Fighters patient said. “Pain sneaks up, stiffness … every new sensation flips a switch of worry about relapse or new illness.”
Another member agreed, saying, “I had more issues since chemotherapy ended than during. Recovery is serious work that takes time, intentionality and patience! Working with my providers helped, but I advocated a lot posttreatment.
“I think what’s not talked about, at least for breast cancer patients, is even though when we finish treatment and we have to proceed on to the next treatment with hormone blockers that everything is fine and it’s not.”
5. Patients Are Seeking That ‘New Normal’
Navigating life during and after cancer treatment means getting accustomed to the “new normal” of life, several Cancer Fighters members said.
“After diagnosis, my world and reality were different than as I knew them to be,” one member said. “Having a support system is VITAL and so necessary!”
Another member added: “I’ve had to grieve the old version of my life Just because we’ve found a new normal, doesn’t mean that this isn’t still hard every single day.”
If you or a loved one is concerned about possible signs or symptoms of cancer and would like an initial appointment or a second opinion, call us 24/7 at (877) 834-8941.