Pheochromocytoma Support Foundation

  Shining the light on pheochromocytoma awareness through education, early detection, and support. 

What do I do now?

A pheochromocytoma can be a scary experience for the patient, as well as family and friends of the patient. This page was designed to help you understand what the patient is experiencing, what you can do to help, and to understand what you might be feeling.  Scroll down to see some Q & A.

Feel free to explore the links to the left. We also suggest you check out our Pheo Info page for more information on what a pheochromocytoma is, the treatment process, and what happens after treatment.

Also, visit our Facebook page to connect with other family members, friends, patients, and survivors.

Have a question? Ask us.

Q & A

Is it ok to hug my friend? I don't want to hurt her.

Human touch can be the greatest thing in the world. It's proven to help heal.

Your friend's body is releasing something called catecholamines. These are released by the tumor in response to almost anything: hugs, walking, laughing and anything that stimulates the body, really. They are the source of what causes the severe headaches associated with pheos.

If your friend is in good spirits (or on some good pain medication), a hug should be fine. Just ask, "hey, can I give you a hug before I leave?". Most of the time, the patient welcomes the hug. Just don't mention being afraid to hug your friend, and don't squeeze too hard.

Why are they waiting so long to operate? I don't understand why they won't remove the tumor this week.

Pheochromocytomas are tricky buggers. When the tumor is being removed, the tumor is being touched. In response to being stimulated (by touch, in this case), the pheo is releasing catecholamines. This is what causes the blood pressure spikes. To keep the blood pressure at a safe level during surgery, they have to prepare the body to maintain low blood pressure. This can take two or more weeks. Be patient, it is worth the wait.

I'm afraid my anxiety about the pheochromocytoma is showing. Can this negatively affect my son (the patient)? What can I do to cope?

Pheo patients are prone to anxiety and stress-induced "episodes" (high blood pressure, headaches, and sweating, among other symptoms that are brought on by the catecholamines released by the pheo). By reducing the stress and anxiety to a patient, you can help keep them calm and reduce the amount and/or severity of these episodes.

When you feel yourself getting anxious, breathe. Count to ten and focus on deep inhale and exhalation. If you need a few moments to pull yourself together, excuse yourself to the bathroom or take a moment to walk the halls. Go outside and walk if you can. Exercise is great for releasing tension and anxiety.

Our Facebook page is a place to connect with other family members who are experiencing or have experienced what you are going through

How soon will I feel better?

Healing is different for everyone. We've met patients who felt fine a week out of surgery, and others who took two years or more to feel "normal". Part of it seems to depend on how long you lived with the tumor and how great an impact it had on your life beforehand. Everyone agrees you do feel better right away, as the blood pressure stabilizes and the headaches go away. See After Surgery for more information. 

I'm post-surgery and scared with every headache that "IT" is back...

This is normal. Every patient seems to experience this. You live with headaches for so long (and enjoy it when they go away!), that the instance one pops back up you automatically may panic or feel the same "sick" feeling you felt with the pheochromocytoma. This is typically a psychosomatic response, and goes away over time. If your headaches continue over a period of time, or you have other pheo symptoms, check in with your doctor. A peace of mind is worth it.

What is adrenal fatigue?

Adrenal fatigue is, well, an exhausted adrenal gland. According to the Mayo Clinic, "The term often shows up in popular health books and on alternative medicine websites, but it isn't an accepted medical diagnosis...", however, it is something we hear about a lot. We have more information, including a list of symptoms, on our After Surgery page. 

The Pheo is gone- why do I feel so weird? I feel like I'm going emotionally haywire, and I'm emotionally numb at other times. I feel shaky all over sometimes. I feel like I'm un-level? What's wrong with me?

Almost every pheo patient we talk to has experienced this, and it's caused by dopamine withdrawal. It's scary and confusing for any patient. See After Surgery for an in-depth look at dopamine withdrawal and the side effects you may experience or be experiencing. 

If you feel suicidal or like you are a danger, you should call 911 (in the United States) or the National Suicide Prevention Lifeline 1-800-273-8255.

Is a pheochromocytoma really cancer? Do I have to have chemo or radiation?

A pheochromocytoma is considered a form of neuroendocrine cancer (NET Cancer). However, most pheochromocytomas are removed via surgery and few need chemo or radiation. Your doctor will be able to provide more information about this topic for you.

My wife had her pheo and adrenal removed 8 months ago and now her teeth are cracking, and her fillings are falling out. Is this related to the tumor?

Most likely, yes. Many patients complain of dental issues afterwards, even if they did not undergo chemo or radiation.

Your wife needs to visit a dentist and inform him/her she is a cancer patient (give them the details they need). A good dentist will be able to take care of her.

I can't come to terms with the words, 'Cancer Patient'.

Cancer patient is the hardest two words to come to terms with. You're a zebra. You're a fighter. You're a survivor. You have a unique bond with other zebras in this world. Coming to terms with the words takes time, but focusing on the words that matter, "fighter", "survivor" is what's best.