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«University of Michigan Comprehensive Cancer Center Multidisciplinary Adrenal Cancer Clinic ii A Patient’s Guide to Adrenocortical Cancer ©2012 ...»

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• weakness or tiredness • patchy tanning of the skin or an all-over darker coloring of the skin • a craving for salt and salty foods

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Hormones produced by the adrenal medulla (adrenalin) are also produced at other sites in your body. Thus, they do not need to be substituted.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center What Can Be Done to Treat My Pain?

Why Does This Happen?

Patients who are diagnosed with adrenal cancer commonly have pain. Pain is described differently by each patient, but many describe it as a cramping, aching, and radiating (spreading) to your flank or shoulders. The most common areas of pain experienced by patients with adrenal cancer are the upper abdominal and back areas. There are many causes of pain including the cancer itself, which may cause pressure on other organs, nerves and vessels.

What Can Be Done?

Pain can be treated, but there are often barriers that prevent proper treatment.

Some of these barriers are a lack of understanding in how to take the pain medications, fear of addiction and a concern that pain may be uncontrollable later if medicines are used at the time of initial pain. These are all issues that should be addressed with your medical team. Do not let these barriers prevent you from keeping any pain you may have under control.

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There are many different medications used to treat pain. Narcotics are the most common. Other types of medications used to treat pain include antidepressants, anticonvulsants (anti-seizure medications), anti-inflammatory and steroid medications.

Narcotic medications come in several forms: tablets, liquids, skin patches and intravenously via a pump. These medicines are available as a sustained release or long acting preparation, and as an immediate release pain medication. The long acting and immediate release pain medications are often used together.

A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Sustained release or long acting pain medications

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Suggestions for patients on sustained release/long-acting pain medications

AND immediate release pain medications:

• Continue the sustained release medication on a regular basis whether you are having pain or not at that time.

Do not change this schedule without talking to your doctor.

• Use your ‘breakthrough’ pain medication as needed.

Do not wait until pain becomes severe or it will become difficult to get good control.

• Keep a record of the breakthrough medications taken over a 24 hour period. This information is helpful when you talk to your doctor about your pain control.

Rule of thumb:

If breakthrough pain medication is needed 4-6 times a day regularly

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The overall goal during treatment is to keep your weight stable. We will monitor your weight throughout your treatment.

Talk to your medical team about your symptoms There are medications available to reduce or treat pain, nausea, constipation or digestion problems you may be experiencing. Your doctor can order these for you.

Also, nutrition specialists are available at the cancer center to offer suggestions and guidance, and will prepare a dietary plan during your treatment. The nutrition clinic is open Monday through Friday from 8am to 3pm.

Appointments can be made in advance at your clinic checkout area or you can call (734) 647-8902.

There are some steps you can take to improve your diet and prevent weight

loss. These include:

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• Choose foods that are high in protein and calories • Try new foods regularly as taste can change from day to day • Limit fluids at meals and drink liquids in-between to avoid fullness at meals • Increase protein and calories by using supplements such as Carnation Instant Breakfast®. There are several flavors to choose from and you can add ice cream, whole milk, yogurt and fruit to increase calories.

• Take anti-nausea medications as prescribed by your doctor during your chemotherapy treatments.

• Appetite stimulating medications such as megestrol acetate (Megace®) or dronabinol (Marinol®) may be recommended by your doctor.

A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center There are many nutrition resources available to patients and families at the Cancer Center. The Patient Education Resource Center (PERC) has many recipe books and other information resources for patients with cancer. They also have a nutrition information guide available that lists websites, books, pamphlets and other resources for cancer patients seeking nutrition information.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center What Can Be Done?

There are a number of preventative things to do. These include:





• Increasing the fiber in your diet with foods high in fiber such as fresh, raw fruits and vegetables, whole grains, prunes, nuts and dates.

• Increase fluids in your diet (drink at least 2 quarts of noncaffeinated fluid daily).

• Avoid cheese products • Get regular exercise every day if possible…keep up your activity as much as you are able.

• Go to the bathroom whenever you have an urge to go.

For patients taking narcotic pain medications, we recommend a combination of

stool softener and laxative on a regular basis. Here are some suggestions:

• Take Senokot-S®, two to six tablets daily in divided doses to keep regular bowel movements every day. This can be decreased or increased according to results and your tolerance. Generic

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• If no bowel movement in any 24 hour period (1 day), take two tablespoons of Milk of Magnesia® (MOM) at bedtime with a full glass of water.

• If no bowel movement in any 48 hour period (2 days), take three Senokot-S® tablets twice a day (total of 6 tablets per day) plus two tablespoons of MOM at night before bedtime.

• If no bowel movement in any 72 hour period (3 days), add one of

the following:

1. Magnesium Citrate 8 oz (1/2 bottle) now then repeat in 6 hours.

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center For this reason, you may want to reach out in different ways than patients do with common cancers. You may find it difficult to locate resources in your community, but there are many resources available to patients through the internet, national organizations, and the American Cancer Society. You may try an online support group or a telephone group hosted by one of these organizations. You can also participate in lectures online or via the telephone and can receive information about cancer related issues.

These resources are listed in the last section of this booklet. We suggest you connect with others during your cancer treatment. Research has found this to be helpful in reducing anxiety and depression, improving your knowledge, and your overall quality of life.

A person who cannot adjust to the diagnosis after a period of time, and who loses interest in usual activities, may be depressed. Mild symptoms of depression can be distressing and may be helped with counseling. Even patients without obvious symptoms of depression may benefit from counseling;

however, when symptoms are intense and long-lasting, or when they keep coming back, more intensive treatment is important. These are often signs of

MEETING OBSTACLESwhat is called “major depression”.

Major depression is not simply sadness or a blue mood. Major depression has been found to affect about 25% of cancer patients and has common symptoms that can be diagnosed and treated. Symptoms of depression that are noticed when a patient is diagnosed with cancer may be a sign that the patient had a depression problem before the diagnosis of cancer. Anyone experiencing these symptoms, or who has a history of depression should talk to their healthcare team.

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• Having a depressed mood for most of the day and on most days.

• Loss of pleasure and interest in activities that you usually enjoy.

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It is important to us that every patient receives the right support at the right time. However, resources specific to adrenal cancer are uncommon in the general community. Adrenal cancer affects 500 Americans annually, but they are spread throughout the country.

Therefore, you will find adrenal cancer resources most commonly on the internet and in large academic healthcare centers that have specialized adrenal cancer clinics.

Web Resources

• University of Michigan Endocrine Oncology Program www.umadrenalcancer.org • Adrenal Gland Tumor – on the People Living With Cancer Website

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A Patient’s Guide to Adrenocortical Cancer ©2012 University of Michigan Comprehensive Cancer Center Pheochromocytomas Fast Facts • Pheochromocytomas are tumors that arise from the adrenal medulla or inner layer of the adrenal gland • They are rare and occur in about 5 persons in every million.

• Pheochromocytomas have been clearly associated with several hereditary disorders including Type IIA and IIB MEN (multiple endocrine neoplasia), von Hippel Lindau syndrome, Neurofibromatosis Type 1 and the Familial Paraganglioma Syndrome. Therefore, physicians regularly recommend genetic testing in patients younger than 50 years.

• SYMPTOMS:

Cardinal symptoms are paleness, high blood pressure, fast heartbeat, headache and high blood sugar. Symptoms can be episodic, of sudden onset or constant and persisting.

• DIAGNOSIS:

Diagnosis is made by measuring hormones that are secreted by the pheochromocytoma in the blood or urine. Once doctors know a pheochromocytoma is present they proceed with further radiological and nuclear medicine imaging to find out more about the localization and extent of the tumor.

• TREATMENT:

Surgery is the treatment of choice. Before surgery the blood pressure needs to be well controlled with special medications. There are also treatment options for advanced pheochromocytomas, such as chemotherapy. They are mainly available through clinical trials.

• PROGNOSIS:

Pheochromocytomas have a 98% cure rate with surgery alone. Patients with a history of a genetic mutation or whose pheochromocytoma was outside of the adrenal gland have a higher risk of recurrence (the cancer returning).

• FOLLOW-UP:

Patients with pheochromocytomas are followed annually for the rest of their lives.

Follow-up involves imaging and blood tests to evaluate presence of recurrent disease.

RESOURCES

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RESOURCES

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Patient & Visitor Lodging and Accommodations Program www.med.umich.edu/hotels.................... 800-544-8684

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