PATIENT GUIDE

Managing the psychological effects of ACC

Tips for Managing the psychological effects of Adrenocortical Carcinoma

(or other rare cancers/illnesses) during diagnosis, treatment and beyond.

 

AT DIAGNOSIS

Being diagnosed with ACC or any other rare cancer/illness can cause a multitude of emotions including anger, sadness, fear, etc.  All of your feelings are valid. Our website has been created for this purpose, do not hesitate to explore it. 

  • Bring someone with you to your appointments to write things down for you-this helps you manage remembering the details that you may miss due to the emotions swirling around inside of your mind. More tips available here.
  • Write in a journal/diary to allow yourself the opportunity to express your feelings.
  • Don’t be afraid to ask for help. Be direct with your requests. “Can you drive me to my appointment?” “Can you pick up my grocery order?”. Giving friends/family specific tasks is a great way to get help and to allow people who care about you to feel like they are supporting you.
  • Seek out appropriate online resources for the diagnosis. Do not go into a Google rabbit hole! Be sure to vet any resources for their validity. Our website has been created to help and based on trusted information.
  • Give yourself grace. Your house is a mess because you’re so distracted with the news? That’s ok!
  • Accept the disease. Don’t ask “why me?”. Rather reflect on the positive things in your life and build on them.

DURING TREATMENT

Treatment for ACC or other rare cancers/illnesses can take a toll on your mental health. Some tips for this time:

  • Don’t be afraid to seek professional assistance for your mental health. Inquire with your medical providers or health insurance to find out what your options are.
  • Prioritize rest if it is needed. Pushing yourself to the point of exhaustion will only worsen your mental health. It’s ok to rest.
    Don’t be afraid to ask for help. Be direct with your requests. (check the examples above).Explore meditation/mindfulness. Some may find these activities grounding and soothing.
    If you are working during treatment, explore what accommodations your employer can provide you.
    Engage in activities that you enjoy. If your energy level is low, consider low impact activities like puzzles, board games, arts/crafts, etc.
  • If you are able to exercise, even a quick walk outdoors can be beneficial to your mental health. Contact us if you ever need to talk to patients on any topic. You can also consult our website to know about national associations and facebook groups you can join.
  • Create moments of happiness with your loved ones/ by doing the things you love to do.

BEYOND TREATMENT

 

The effects of treatment can last long past when treatment ends, both physically and mentally. Some tips for this part of the journey:

  • Post-treatment you may feel that you have more bandwidth to process what you’ve been through, seek professional assistance. Check in with your medical providers or health insurance for your options.
  • Prioritize your health. After treatment for adrenocortical carcinoma, you may be dealing with adrenal insufficiency.  Be sure to educate yourself about this condition and treatment.
  • Life will be different than before your diagnosis and all the treatments involved in surviving cancer. Based on what has happened to you, the experiences you made, and the physical/ cognitive restrictions you might have, shape your new life to the best you can.
  • Take notes about any symptoms you have, including emotional issues.
  • Try to focus on what you can control.  Returning to normalcy with schedules and routines can help you feel like you are regaining a sense of control of your life.
  • Consider joining a peer support group. Some people may find it helpful to talk to other cancer survivors.
  • Volunteer-giving back to others may help you channel your energy while helping others.You can join us by becoming an ambassador. Contact us if you are interested!

FINAL THOUGHTS 

No matter where you are in your journey, if you have concerns about your emotions or mental health, share them with your loved ones and your medical team!