Patient guide

First, take a deep breath

A referral to a hematology and oncology specialist does not necessarily mean cancer. An abnormal test result has many possible reasons, and many of them are not cancer. Some conditions need only follow-up. The first visit is for the doctor to get a clear picture of your situation, not for a final decision to be made that same day.

What documents should you bring?

The suggested documents are based on established medical guidance. If you are not sure what is needed, ask the office before the visit.

• The referral note or the doctor’s letter that sent you
• All your test results, even old ones, especially the complete blood count (CBC). If tests were done at several laboratories, bring all of them, because the normal range differs between laboratories.
• Biopsy and pathology reports, the surgery report (if there is one), and the pathology slides or blocks if requested
• Imaging: the report and, if possible, the disc or image files (CT scan, MRI, PET scan, ultrasound)
• A list of all the medicines you take, with the name and the time of day, plus supplements, vitamins and herbal products. Be sure to tell the doctor about these, because some may interact with treatment.
• Medicine allergies and your history of illnesses and surgeries
• Family history of blood diseases, clots or cancer
• Your ID and insurance card and the contact numbers of other doctors who should receive the visit report

Who should come with you?

It is best to bring a friend or family member: someone who listens well, takes notes and respects your decisions. Many patients cannot remember everything that was said after leaving the office. You can ask whether it is acceptable to record the conversation.

Write your questions in advance

Write down your list of questions and bring it. Some examples:

• Why was I referred to you, and what do my test results mean?
• What other test or check is needed to reach a diagnosis?
• Where and when will each be done, and when will the result be ready?
• If a problem is found, what is the next step? Might only follow-up be needed?
• Which symptoms mean I should call quickly or go to the emergency department? What is the contact number during working hours and after them?
• Whom should I ask my later questions?

Before leaving, make sure all your questions have been answered. If a follow-up appointment is needed, book it there and then.

What happens at the visit?

The doctor talks with you about the disease and the possible options. Before a treatment plan, a blood test, an X-ray or other checks may be needed. The treatment team may include several specialists.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Know this first

This page is for understanding what the test means, not for interpreting your own result. A single number outside the range is not a diagnosis, and only a doctor can weigh it against your symptoms and your other tests.

What does the complete blood count (CBC) measure?

• Red blood cells (RBC): they carry oxygen from the lungs to the rest of the body.
• Hemoglobin (Hb): the iron-containing protein inside red cells.
• Hematocrit (Hct): what part of the blood is made up of red cells.
• White blood cells (WBC): they fight infection and disease. In a test with a “differential”, the types of white cells are counted separately.
• Platelets (PLT): they stop bleeding by helping the blood to clot.

A CBC usually needs no special preparation. If another test was requested on the same sample, fasting may be needed.

What does “normal range” mean?

The reference range comes from blood tests of a large group of healthy people. Laboratories use different methods and may print different ranges. For this reason:

• Look at the range printed on your own test sheet.
• Do not compare the results of two different laboratories directly. To follow a trend, it is better to repeat the test at the same laboratory.
• The normal range also depends on age, sex, pregnancy and health status.
• Sometimes healthy people also have a result outside the range, and on the other hand, a result inside the range is not always a guarantee of health.

One medical reference (ASH), for example, gives anemia as hemoglobin below 13.5 in men and below 12 g/dL in women who are not pregnant, and says it differs in children and in pregnancy. This number is only an example and does not replace your laboratory’s range.

What might a high or low number suggest?

These are general possibilities, not a diagnosis.

• Low hemoglobin or red cells: anemia, one common cause of which is iron deficiency. High values can also go with, for example, dehydration.
• Low white cells: causes include some medicines (including chemotherapy), autoimmune diseases, bone marrow diseases and sometimes cancer.
• High white cells: usually an infection or a reaction to a medicine, but sometimes autoimmune diseases or blood cancers.
• Low platelets: causes include a viral infection, an autoimmune disease, vitamin B12 deficiency, a bone marrow disease and sometimes blood cancers. A mild type is seen in pregnancy.
• High platelets: infection, inflammation, anemia or heavy bleeding, and less often some cancers.
• Ferritin: it shows the body’s iron store. A low level is linked to iron deficiency; a high level has several causes, including inflammation.

Things like diet, activity, medicines, periods and dehydration can also change the result.

What questions should you ask?

• Which number is outside the range, and what is this laboratory’s range?
• With my symptoms and history, what does this mean?
• Should we repeat the test, or is another test needed?
• Might a medicine, food, my period or exercise have affected the result?

Tell the doctor about the medicines and supplements you take.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Before the first session

Medicine-based treatment is different for each patient. This page is only a general list of tasks and questions. Your own treatment team gives the details.

Ask the treatment team

• What is the goal of treatment: to destroy the disease, to reduce the chance of it returning, or to control or reduce its symptoms?
• Where is each session, and how many hours does it take? Is a hospital stay needed, or is it outpatient? How many sessions, and how far apart?
• What tests are needed before a session or during treatment?
• What side effects are likely? Will I be given a medicine to prevent nausea? Will my treatment cause hair loss?
• Which symptoms mean I should call quickly, and on what number? What about after working hours? Which symptoms mean I should go straight to the emergency department?
• Do the medicines, supplements and herbal products I take now cause any problem with treatment?
• Can I work, drive or travel?

Note: do not stop or start any medicine on your own, even the medicines you take for earlier conditions (for example blood pressure, diabetes or an anticoagulant). Any change must be on the doctor’s advice.

At home and in daily life

• Getting there and back. Chemotherapy may make you tired. Arrange for someone to take you and bring you back on the day of the session and the day after.
• Rest and help. Tiredness is the most common side effect. Plan rest for the days after a session and ask the people around you for help with food and housework.
• Food. Arrange meals in advance so that eating is easier when you are tired. Simple foods you can tolerate, small meals, with protein.
• Mouth and teeth. Some treatments cause mouth sores. Check your mouth every day for sores or white patches and clean it with a very soft toothbrush. Tell the treatment team early about any change.
• Hair. If your hair is expected to fall out and you want a wig, it is better to buy it before the hair loss so that it matches your own hair color. A scarf or hat is also an option.
• Work. Many people can work during chemotherapy, as long as they fit the schedule to how they feel. Talk with your employer.

On the day of the session

• Your list of medicines, a notebook or the sheet of questions, and the treatment team’s contact number
• Comfortable clothes, a blanket or shawl, water and a light snack (unless the doctor has said otherwise), a book or headphones
• A companion, if possible
• If you have a fever, cough, diarrhea or any new symptom before the session, tell the treatment team before you come.

After the session

Keep the contact number within reach. If you get a fever of 38 degrees or higher, call at once. Read the guide “When should I call urgently?” and keep it next to your phone.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Before anything else

Not everyone has all of these side effects. Which ones are likely for you depends on your type of treatment; ask the treatment team. Tell the team about every side effect you notice, even a mild one. Many side effects improve with medicine and care, and the doctor adjusts the plan if needed. Do not start any medicine, even a painkiller or a medicine for diarrhea or constipation, without asking.

Tiredness

• It is not relieved by full sleep and rest and may come with the slightest activity. It is the most common side effect.
• Anemia can also be the cause; a blood test will show.
• Plan your rest times. Keep a daytime nap under an hour so that night sleep is not disturbed.
• Leave the important tasks for when you have energy. Light exercise such as walking helps.
• Eat smaller, more frequent meals and drink enough water.

Nausea and vomiting

• Anti-nausea medicines can prevent or reduce nausea. If you have nausea or are worried about it, tell the treatment team.
• Five or six small meals instead of three big ones. Cold, plain, starchy foods. Stay away from fatty, fried, sweet and spicy food if it bothers you.
• Sip water or clear fluids during the day so that you do not become dehydrated.
• Avoid strong smells, and rest for about half an hour after a meal with your upper body raised.
• If you cannot keep fluids down, or you feel dizzy or confused, call at once.

Hair loss

• Some chemotherapy medicines cause hair loss and some do not. Ask the treatment team.
• Scalp hair usually grows back about 2 to 3 months after chemotherapy ends; it may at first be thin, or differ in texture and color.
• Use a wide-tooth comb or a soft brush, a mild shampoo, and wash your hair less often. Set aside hair dryers, straighteners and damaging products.
• Protect your scalp from the sun with a hat or sunscreen.
• Hair loss can be sad or embarrassing. Talking with family or with someone who has been through it helps.

Mouth sores

• Look inside your mouth every day.
• After meals and before bed, clean your teeth and gums with a very soft toothbrush or a cotton swab. If you are prone to bleeding, ask the doctor whether you should floss.
• Rinse your mouth several times a day with a solution of lukewarm water, baking soda and salt. Ask the nurse for the exact recipe.
• Avoid crunchy, salty, spicy and sweet foods and drinks. Eat soft, moist food. No alcohol or cigarettes.
• If mouth pain makes eating, drinking or sleeping hard, or you have a fever of 38 degrees or higher, tell the treatment team. They may give a numbing medicine.

Diarrhea

• Drink plenty of clear, lukewarm fluids so you do not become dehydrated. Ask the treatment team how much a day.
• Small, frequent meals. Low-fiber foods such as white bread, pasta and stewed fruit. Soup and banana to replace sodium and potassium.
• Alcohol, dairy, spicy and fatty food, caffeine and fruit juice may make it worse.
• Before taking any anti-diarrhea medicine, probiotic or fiber supplement, ask the doctor.
• Tell the treatment team about blood or mucus in the stool, dizziness, fever, or severe or continuing diarrhea. Severe diarrhea (seven or more times a day above your usual) can be serious.

Constipation

• More fluids and daily movement (walking or light exercise) help.
• Eat at set times and note how often you pass stool.
• Take only the constipation medicines the doctor has told you to take. No suppositories or enemas without the doctor’s advice either, because they may cause bleeding or infection. A lot of fiber can also make it worse for some people.
• If you pass stool twice a week or less, or the stool is hard and painful, let the team know.

Bruising and bleeding (when platelets are low)

• Brush your teeth with a very soft toothbrush. Wear shoes at home too. Use an electric shaver instead of a blade. Be careful with sharp objects.
• For bleeding, press firmly with a clean cloth for a few minutes.
• Many medicines sold without a prescription contain aspirin or ibuprofen and raise the risk of bleeding. Read the labels and ask the treatment team for a list of medicines to avoid.
• Report right away: bleeding that does not stop after a few minutes, bleeding from the mouth or nose, vomiting blood, red or pink urine, black or bloody stools, very heavy periods, or a severe headache with changes in vision and confusion.

Trouble with concentration and memory

Some people have trouble thinking, concentrating or remembering after chemotherapy. A notebook or planner, writing important numbers in one place, enough sleep and light exercise help. Tell the treatment team.

When to call

• A fever of 38 degrees or higher
• You cannot keep fluids down, or vomiting and diarrhea continue
• Unusual bleeding
• Mouth or throat sores that do not let you eat and drink
• Any new symptom that worries you

See also the guide “When should I call urgently?”.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Why does infection matter during this time?

Some treatments, such as chemotherapy, lower the number of white blood cells. White cells fight infection. At certain points in each course of treatment, an important type of white cell called the neutrophil becomes very low (neutropenia) and the risk of infection goes up. The treatment team monitors this with blood tests and sometimes gives medicines to prevent infection or to raise the white cells. An infection during treatment can be serious and need urgent action, so learn its signs.

Signs of infection

• A fever of 38 degrees Celsius or higher
• Chills
• Cough or sore throat
• Diarrhea
• Earache, headache, sinus pain, or a stiff and painful neck
• Pimples or a skin rash
• Sores or a white coating inside the mouth or on the tongue
• Swelling or redness, especially where a catheter enters the body
• Bloody or cloudy urine, or burning when passing urine

If you see these signs, call the treatment team at once. Do not bring a fever down with a fever-reducing medicine unless you have first asked the doctor or nurse; these medicines lower the fever but may hide a sign of a more serious problem.

Prevention in daily life

• Hands. Wash well with lukewarm water and soap, especially before meals. Ask the people around you to wash their hands as well.
• Mouth. Clean your teeth every day and look inside your mouth for sores or signs of infection.
• Catheter. If you have a catheter or port, keep the site clean and dry.
• Contact with other patients. Stay away from people who are sick or have a cold, and from crowds. Also stay away from people who have just had a live vaccine (such as chickenpox, polio or measles). Before any vaccine, ask the treatment team.
• Sleep, food and stress. Stress, poor nutrition and lack of sleep also weaken the immune system.

Food safety

Some treatments make contaminated food more likely to make you ill. For this reason:

• Cook meat, fish and eggs thoroughly.
• Keep hot food hot and cold food cold.
• Wash raw fruit and vegetables well; the treatment team may tell you to eat them peeled only.
• Use separate dishes and tools for raw meat and for vegetables.

Eating well

• Good nutrition helps you stay strong. If you can, plan meals in advance.
• If your appetite is low or you feel full quickly, eat five or six small meals.
• You may need more protein and calories at this time. Eat the protein first in the meal.
• If eating has become hard or you are losing weight, tell the treatment team and get help from a dietitian.
• With mouth sores or a sore throat: soft, moist food, and avoiding crunchy, salty, spicy and sweet foods and alcohol.
• With diarrhea: plenty of fluids and small meals (see the side effects guide).

Supplements and herbal products

Tell the treatment team about every supplement, vitamin or herbal product before you take it. Some of them can change the effect of treatment. So far no study has shown that a diet, food, vitamin or supplement can cure cancer or prevent it from coming back. Herbal or alternative treatment should never take the place of the treatment the doctor has prescribed.

Every patient’s treatment plan is different; ask your doctor about your own situation.

Before anything else

This list is for your awareness and does not replace the guidance of your own treatment team. At the start of treatment, ask the doctor or nurse:

• With which symptoms is a phone call enough, and with which should I go straight to the emergency department?
• What is the contact number during working hours and after them?

Keep the number on your phone and on paper next to your file. If you are worried, call; you are not a bother.

Iran’s emergency number is 115.

Call 115 at once or go to the emergency department

In these situations do not drive yourself; ask someone to take you or call an ambulance.

• Sudden or severe shortness of breath, chest or back pain, a very fast heartbeat, or fainting. It may be a sign of a pulmonary embolism (a clot that has reached the lung). Coughing up blood is also a sign.
• Signs of stroke: one side of the face drooping and trouble smiling, being unable to hold both arms up, slurred speech or confusion. Call even if the symptoms go away after a while. Also weakness or numbness on one side of the body, sudden blurred vision, confusion, dizziness or a very severe headache.
• Severe bleeding that will not stop, or vomiting blood.
• Sudden confusion or fainting.
• Sudden numbness or weakness in the arms and legs, being unable to stand or walk, losing control of urine or stool (in patients with myeloma it may be a sign of pressure on the spinal cord and needs urgent treatment).
• Chest pain or shortness of breath together with pain and swelling in one leg.
• After a blood transfusion: severe shortness of breath, swelling or tingling of the mouth and throat, or chest pain.
• A fever of 38 degrees Celsius or higher during treatment, when you cannot reach the treatment team or you feel unwell.

Call the treatment team at once

Fever and infection. Treat a fever of 38 degrees Celsius or higher during chemotherapy or other cancer treatments as an emergency. An infection during treatment can be life-threatening and need urgent care. Do not wait. If you cannot reach the treatment team, or you feel unwell, go to the emergency department. Ask before taking a fever-reducing medicine, because it may hide the problem. Chills, a cough or sore throat, burning when passing urine, and redness or swelling at the catheter site are also signs of infection.

Bleeding and bruising. Bleeding that does not stop after a few minutes of pressure, bleeding from the mouth or nose, red or pink urine, black or bloody stools, periods heavier and longer than usual, bruising without a reason or tiny red spots on the skin. Likewise, if you take an anticoagulant: a blow to the head, or a sudden severe headache with confusion, trouble speaking, weakness of the arm or leg, nausea or vomiting.

A clot in the leg. Throbbing pain, swelling, warmth and redness or color change of the skin in one leg (most often the calf or thigh). See a doctor or go to the emergency department the same day, because the clot can travel to the lung.

Vomiting and dehydration. Vomiting that stops you from taking fluids or medicine, dry mouth, little urine, dizziness or weakness and confusion.

Diarrhea. Severe, continuing diarrhea (seven or more times a day above your usual), bloody diarrhea, or diarrhea with fever and dizziness.

After a blood transfusion. Fever or chills, muscle pain without a reason, nausea or vomiting, a change in the urine, bleeding from the mouth, nose or anus, yellow eyes or skin, or back pain. Mention that you have recently had blood.

Tell your care team the same day

Constipation. Passing stool twice a week or less, or hard and painful stool. If it comes with severe belly pain, vomiting, a fast heartbeat, confusion or dizziness, go at once.

Mouth. Mouth or throat pain that makes eating, drinking or sleeping hard.

What should you say when you call?

• What symptom do you have, and when did it start?
• What is your body temperature?
• What medicines have you taken?
• When was your last treatment session, and what treatment was it?

Every patient’s treatment plan is different; ask your doctor about your own situation.