About Your Convection-Enhanced Delivery (CED) of Radioimmunotherapy (RIT) for Pediatric Patients With Diffuse Intrinsic Pontine Glioma (DIPG)

This guide will help you get ready for your convection-enhanced delivery (CED) of radioimmunotherapy (RIT) at Memorial Sloan Kettering (MSK). It will also help you understand what to expect during and after your surgery and treatment.

Read through this guide at least once before your surgery and use it as a reference in the days leading up to your surgery. Bring this guide with you every time you come to MSK, including the day of your surgery. You and your healthcare team will refer to it throughout your care.

In this resource, the words “you” and “your” refer to you or your child.

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About Your Surgery

About DIPG

DIPG is a type of tumor in your brain stem. Your brain stem is located at the base of your brain, near where your spinal cord connects to your brain (see Figure 1). Your brain stem controls things such as:

  • Your heartbeat
  • Your breathing
  • Your eye movements
  • Your face muscles
  • Your swallowing
Figure 1. Your brain stem and DIPG

Figure 1. Your brain stem and DIPG

DIPG is treated with radiation therapy, but the tumors usually come back within months after treatment. There’s no known chemotherapy that effectively treats DIPG.

MSK is doing a clinical trial (research study) for people diagnosed with DIPG. The purpose of the trial is to test a new way to treat DIPG with an infusion of radioimmunotherapy directly into your brainstem. This is called convection-enhanced delivery (CED) of radioimmunotherapy (RIT). If you have questions about the clinical trial, talk with your neurosurgeon, neurooncologist, or nurse practitioner (NP).

About radioimmunotherapy (RIT)

RIT is a type of treatment that combines radiation therapy and immunotherapy. With RIT, radiolabeled monoclonal antibodies deliver radiation directly to the cancer cells.

  • An antibody is a protein that’s made by your immune system and released into your blood. Antibodies fight against harmful substances, such as bacteria, fungi, parasites, and viruses.
  • A radiolabeled monoclonal antibody is an antibody that’s made in a lab and specially designed to attach to cancer cells. The antibody has liquid radiation attached to it. This radiation kills the cancer cells directly without damaging normal tissue (see Figure 2).
    Figure 2. Radiolabeled monoclonal antibody attaching to cancer cell

    Figure 2. Radiolabeled monoclonal antibody attaching to cancer cell

About convection-enhanced delivery (CED)

CED is a new way to use RIT to treat DIPG. With CED, a catheter (thin, flexible tube) is placed into your brain stem. A radiolabeled monoclonal antibody is slowly infused (dripped) through the catheter into your brain stem. The antibodies deliver radiation directly to the cancer cells. CED is a type of targeted therapy.

Catheter placement surgery

Your catheter will be placed during surgery in an operating room, procedure room, or diagnostic suite with a magnetic resonance imaging (MRI) scanner. You’ll get general anesthesia (medication to make you sleep) before your surgery. Once you’re asleep, a surgical nurse will shave the hair along your incision (surgical cut) line. Your whole head won’t be shaved.

During your surgery, your neurosurgeon will drill a burr hole (small hole) in the top of your skull. They’ll guide the catheter through the hole to your brain stem (see Figure 3). They’ll use MRI scans before and during your surgery to help them see your brain as they’re doing this. They’ll also use a special real-time MRI imaging system to help them guide the catheter.

Figure 3. Catheter in your brain stem

Figure 3. Catheter in your brain stem

Once the catheter is in the right place, your neurosurgeon will secure it to your head. They’ll usually also put a soft bandage or head wrap over the catheter. The catheter will still be in place when you wake up after surgery.

RIT infusion

Once you’re awake after your surgery, you’ll be moved to a monitored care unit for your RIT infusion. The radioactive antibody will be slowly infused into your brain stem through the catheter placed during your surgery. You’ll be monitored closely during and after the infusion.

Once your infusion is finished, your neurosurgeon will take out the catheter and close the incision with a few stitches. This will be done in your hospital room while you’re in bed.

Your treatment team

You’ll have many different healthcare providers working together before, during, and after your surgery and treatment. Your treatment team will include your:

  • Neurosurgeon
  • Oncologist (cancer doctor)
  • Neurologist
  • Nurse practitioner (NP)
  • Nuclear medicine doctor
  • Radiation safety officer
  • Pediatric nurse
  • Child life specialist
  • Social worker

A financial counselor is also available to meet with you to talk with you about any insurance issues. Please bring all your insurance information to your appointment. If you have any questions, call Patient Financial Services at 212-639-3810.

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Before Your Surgery

The information in this section will help you get ready for your surgery. Read through this section when your surgery is scheduled and refer to it as your surgery date gets closer. It has important information about what you need to do before your surgery.

Write down your questions and be sure to ask your healthcare provider.

Within 2 weeks of your surgery

Before your surgery, you’ll meet with your doctor and NP. They’ll talk with you about the details of your CED surgery and antibody infusion. This includes side effects you might have and what to expect before, during, and after your treatment. They’ll ask you to sign a consent form. They may also recommend that you see other healthcare providers, such as a child life specialist or social worker.

You’ll need to have the following exams and tests to make sure it’s safe for you to have CED surgery:

  • Physical exam
  • Neurological exam
  • Blood tests to check your blood counts, blood type, blood clotting, and kidney, liver, and
  • thyroid function
  • Brain MRI scan
  • Pregnancy test (if you’re able to have children)
  • Electrocardiogram (EKG), if needed
  • Chest x-ray, if needed

It’s very helpful if you bring the following with you to your appointment:

  • A list of all the medications you’re taking, including prescription and over-the-counter medications, patches, and creams.
  • Results of any tests done outside of MSK, such as a cardiac stress test, echocardiogram (echo), EKG, or chest x-ray.
  • Programmable VP (ventriculoperitoneal) shunt information (shunt type and setting), if you have one.
  • The name(s) and telephone number(s) of your doctor(s).

Where to go

Your appointments will be at the Pediatric Ambulatory Care Center (PACC). The PACC is located at Memorial Hospital (MSK’s main hospital). The address is:

Memorial Hospital
1275 York Avenue (between East 67th and East 68th Streets)
New York, NY 10065
Take the B elevator to the 9th floor

Where to park

MSK's parking garage

MSK’s parking garage is located on East 66th Street between York and First Avenues. If you have questions about prices, call 212-639-2338.

To reach the garage, turn onto East 66th Street from York Avenue. The garage is located about a quarter of a block in from York Avenue, on the right-hand (north) side of the street. There’s a tunnel that you can walk through that connects the garage to the hospital.

There are also other garages located on East 69th Street between First and Second Avenues, East 67th Street between York and First Avenues, and East 65th Street between First and Second Avenues.

MRI scans

Before your surgery, you’ll need an MRI scan of your brain to make sure there’s no new or growing cancer. Your doctor will also use this scan to help map your brain and plan where the catheter will go.

Instructions before MRI scans with anesthesia

If you’re getting anesthesia (medication to make you sleepy) during your MRI scans, you need to stop eating and drinking for a certain amount of time before your scans. Your NP will talk with you about when you need to stop eating and drinking before your MRIs. If you don’t follow the instructions they give you, your MRIs may be canceled.

Note the time and location of your MRIs

A staff member will call you the day before your MRIs. If your MRIs are scheduled for a Monday, they’ll call you on the Friday before. If you don’t get a call by 4:00 pm, please call 212-639-7056.

The staff member will tell you what time to arrive at the hospital for your MRIs. They’ll also remind you where to go.

Arrange for housing, if needed

The Ronald McDonald House provides temporary housing for out-of-town pediatric cancer patients and their families. MSK also has arrangements with several local hotels and housing facilities that may give you a special lower rate. Your social worker can talk with you about your options and help you make reservations.

Tell us if you’re sick

If you get sick before your surgery, call the doctor who scheduled your surgery. This includes a fever, cold, sore throat, or the flu. Contact your primary care provider and schedule a sick visit.

7 days before your surgery

Follow your healthcare provider’s instructions for taking aspirin

If you take aspirin or a medication that contains aspirin, you may need to change your dose or stop taking it 7 days before your surgery. Aspirin can cause bleeding.

Follow your healthcare provider’s instructions. Don’t stop taking aspirin unless they tell you to. For more information, read the resource Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

Stop taking vitamin E, multivitamins, herbal remedies, and other dietary supplements

Stop taking vitamin E, multivitamins, herbal remedies, and other dietary supplements 7 days before your surgery. These things can cause bleeding. For more information, read the resource Herbal Remedies and Cancer Treatment.

5 days before your surgery

Start taking potassium iodide (SSKI®) and liothyronine (Cytomel®)

Start taking potassium iodide and liothyronine 5 days before your surgery. These medications will help protect your thyroid during your treatment. Keep taking these medications every day until 2 weeks after your surgery.

Your doctor or NP will give you a medication diary. Use it to record the potassium iodide and liothyronine you take. Write your initials in each box when you take your medication. Be sure to write any missed doses in your diary. Bring your diary to all your appointments.

‌  Take the potassium iodide (SSKI) and liothyronine (Cytomel) until the end date your doctor gave you. Read your medication diary for more information.

2 days before your surgery

Stop taking nonsteroidal anti-inflammatory drugs (NSAIDs)

Stop taking NSAIDs, such as ibuprofen (Advil®, Motrin®) and naproxen (Aleve®), 2 days before your surgery. These medications can cause bleeding. For more information, read the resource Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

1 day before your surgery

Note the time and location of your surgery

A staff member will call you, usually after 2:00 pm the day before your surgery. If your surgery is scheduled for a Monday, they’ll call you on the Friday before. If you don’t get a call by 4:00 pm, please call 212-639-7056.

The staff member will tell you what time to arrive at the hospital for your surgery. Your arrival time will be about 2 hours before your surgery start time. Please arrive on time.

The staff member will also remind you where to go. This will be one of the following locations:

  • Presurgical Center (PSC) on the 6th floor
    1275 York Avenue (between East 67th and East 68th Streets)
    New York, NY 10065
    B elevator to 6th floor
  • Center for Image-Guided Interventions (CIGI) on the 2nd floor
    1275 York Avenue (between East 67th and East 68th Streets)
    New York, NY 10065
    B elevator to 2nd floor
  • Pediatric Ambulatory Care Center (PACC) on the 9th floor
    1275 York Avenue (between East 67th and East 68th Streets)
    New York, NY 10065
    B elevator to 9th floor

The night before your surgery

Shower

Unless you’re given other instructions, you should shower and wash your hair. Use your normal soap, shampoo, and conditioner.

After your shower, dry yourself off with a clean towel. Don’t use any hair products (such as hair spray or hair gel).

Sleep

Go to bed early and get a full night’s sleep.

Instructions for eating and drinking

Don’t eat or drink anything after a certain time on the night before your surgery. Your NP will tell you when this is. This exact time is based on your age and any other medical problems you may have. Your NP will talk with you about what you can and can’t eat before surgery. If you don’t follow the instructions you’re given, your surgery may be cancelled.

The morning of your surgery

‌  Don’t eat or drink anything the morning of your surgery. This includes water, hard candy, and gum. Take any medication as instructed with a small sip of water.

Take medications as instructed

If your doctor or NP told you to take certain medications the morning of your surgery, take only those medications with a sip of water. Depending on what medications you take and the surgery you’re having, this may be all, some, or none of your usual morning medications.

Starting 2 hours before your surgery, don’t take any medications.

Things to remember

  • Wear something comfortable and loose-fitting.
  • If you wear contact lenses, wear your glasses instead. Wearing contact lenses during surgery can damage your eyes.
  • Don’t wear any metal objects. Remove all jewelry, including body piercings. The equipment used during your surgery can cause burns if it touches metal.
  • Don’t put on any lotion, cream, deodorant, makeup, powder, perfume, or cologne.
  • Leave valuable items (such as credit cards, jewelry, and your checkbook) at home.

What to bring

  • Your Health Care Proxy form and other advance directives, if you completed them.
  • Your cell phone and charger.
  • Only the money you may want for small purchases (such as a newspaper).
  • A case for your personal items (such as eyeglasses, hearing aid(s), dentures, prosthetic device(s), wig, and religious articles), if you have one.
  • This guide. Your healthcare team will use it to teach you how to care for yourself after surgery.

Once you’re in the hospital

When you get to the hospital, take the B elevator to the 2nd floor (If you’re going to the CIGI), the 6th floor (if you’re going to the PSC), or the 9th floor (if you’re going to the PACC).

Doctors, nurses, and other staff members will ask you to say and spell your name and date of birth many times. This is for your safety. People with the same or a similar name may be having surgery on the same day.

Get dressed for surgery

When it’s time to change for surgery, you’ll get a hospital gown, robe, and nonskid socks to wear.

Meet with a nurse

You’ll meet with a nurse before surgery. Tell them the dose of any medications you took after midnight (including prescription and over-the-counter medications, patches, and creams) and the time you took them.

Your nurse may place an intravenous (IV) line into one of your veins or access your central line (implanted port). If your nurse doesn’t do this, your anesthesiologist will do it later once you’re in the operating room.

Meet with an anesthesiologist

You’ll also meet with an anesthesiologist before surgery. They will:

  • Review your medical history with you.
  • Ask you if you’ve had any problems with anesthesia in the past, including nausea or pain.
  • Talk with you about your comfort and safety during your surgery.
  • Talk with you about the kind of anesthesia you’ll get.
  • Answer your questions about your anesthesia.

Get ready for your surgery

One or 2 visitors can keep you company as you wait for your surgery to start. When it’s time for your surgery, you’ll need to remove your hearing aids, dentures, prosthetic device(s), wig, and religious articles, if you have them. Your visitor(s) will be taken to the waiting area. They should read Information for Family and Friends for the Day of Surgery.

You’ll either walk into the operating room or be taken in on a stretcher. A member of the operating room team will help you onto the operating bed.

Once you’re comfortable, your anesthesiologist will give you anesthesia through your IV line or implanted port and you’ll fall asleep. You’ll also get fluids through your IV line or implanted port during and after your surgery.

During your surgery

After you’re taken to the operating room, your visitors should wait in the main lobby on the 1st floor of Memorial Hospital. The main lobby is located at the top of the escalator at MSK’s York Avenue entrance. Your visitors should check in at the information desk.

A nurse liaison will bring your visitors updates on the progress of your surgery. They’ll tell your visitors how you’re doing, what time your surgery started, and give an estimate of when your surgery will be over. They may also bring your visitors messages from your surgeon.

When your surgery is done, your visitors will be asked to go back to the 6th floor concierge desk. The staff member at the desk will tell you where to go to meet with the surgeon.

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In the Hospital

The information in this section will tell you what to expect while you’re in the hospital after your surgery. You’ll learn how to safely recover from your surgery and what to expect during your treatment.

Write down your questions and be sure to ask your healthcare provider.

Waking up after surgery

When you wake up after your surgery, you’ll be in the Post Anesthesia Recovery Unit (PACU) or one of the following monitored care units:

  • The Pediatric Intensive Care Unit (PICU)
  • The adult Intensive Care Unit (ICU)
  • The Neurology Advanced Care Unit (NACU)

As soon as you’re settled, a nurse will bring your visitors in to be with you.

A nurse will be monitoring your body temperature, pulse, blood pressure, and oxygen levels. You may be getting oxygen through a thin tube that rests below your nose or a mask that covers your nose and mouth.

It’s normal to feel very tired after surgery. Your nurse will make sure you’re comfortable and answer your questions.

Tubes and bandages

The infusion catheter will be in place and secured on your head. You’ll have a soft bandage or head wrap over your incision.

Managing your pain

It’s normal to have some pain near your incision after surgery. Your doctor and nurse will ask you about your pain often. They’ll give you medication to control your pain as needed. If your pain isn’t relieved, please tell your doctor or nurse.

You might be nauseous (feel like you’re going to throw up) or have a headache after your surgery. Your doctor and nurse will check how you’re feeling often. They’ll give you medication to help with these symptoms as needed.

You might have a sore throat after your surgery. This is from the breathing tube that was used during your surgery. If you have a sore throat, tell your doctor or nurse. They can give you lozenges or a cool drink to help soothe your throat.

Eating and drinking

Most people can start drinking liquids a few hours after their surgery. After you’re able to drink, you’ll slowly go back to your usual diet.

Moving to a monitored care unit

If you’re not already in a monitored care unit, you’ll be moved to one once you’re awake and comfortable.

Radiation safety precautions

A radiation safety officer will talk with you about the precautions you’ll need to follow during and after your antibody infusion. They’ll also give you written guidelines to follow. Tell us if anyone who’s caring for you is pregnant or if you’re staying at the Ronald McDonald House.

Depending on your antibody dose, you might be radioactive after your antibody infusion. Some of the radiation will leave your body through urine (pee) and bodily secretions. You’ll need to be careful so people near you aren’t exposed to too much radiation. Your radiation safety officer will tell you what precautions you need to take.

The radiation safety officer will give you a wallet card that describes your treatment. They’ll tell you how long you need to keep it with you. During that time, keep it with you at all times. If you need emergency medical care or are stopped by security, show this card.

‌  If you have any questions about radiation safety, call 212-639-7391 Monday through Friday from 9:00 am to 5:00 pm.

During your antibody infusion

You’ll get your antibody infusion in the monitored care unit. You’ll be awake during your infusion. If you’re very anxious, your nurse will give you medication to help. They might also give you dexamethasone (a medication called a steroid that lowers swelling in your brain) before, during, or after your infusion.

Your catheter will be attached to a special infusion pump. The pump will slowly infuse the antibody into your brain stem through your catheter. How long your infusion takes depends on how much of the antibody you’re getting. Your care team will tell you what to expect.

During your infusion, you’ll need to stay in your bed. You can eat and sleep as usual. You can have visitors, but they’ll need to follow your healthcare team and radiation safety officer’s instructions.

Your nurse or doctor will do neurological exams often during your infusion. During these exams, they will:

  • Ask you to move your arms, fingers, toes, and legs.
  • Check your pupils with a flashlight.
  • Ask you simple questions. For example, they might ask, “What’s your name?”

If your doctors notice any changes while they’re doing the neurological exams, they might decide to pause or stop your antibody infusion.

After your antibody infusion

Once your infusion is finished, your neurosurgeon will take out the catheter. They’ll close the wound with a few stitches. This will be done in your hospital room while you’re in bed. You will get an injection (shot) of a local anesthetic (medication to numb the area) before they start.

Imaging scans

Within 24 hours after your antibody infusion, you’ll have imaging scans. Your doctor will use the scans to look at your brain after the catheter is removed and check exactly where in the tumor the antibody went. You’ll have:

  • MRI and PET/CT (positron emission tomography and computed tomography) scans
  • A PET/MRI scan

Your nurse will tell you which scans you’ll have and what time you’ll have them.

Instructions before imaging scans with anesthesia

If you’re getting anesthesia during your scans, you need to stop eating and drinking for a certain amount of time before your scans. Your NP will talk with you about when you need to stop eating and drinking before your scans. If you don’t follow the instructions you’re given, your MRIs may be canceled.

Moving to the pediatric inpatient unit

You’ll stay in the monitored care unit for about 24 hours after your infusion. After that, you’ll be moved to the pediatric inpatient unit for the rest of your hospital stay.

You’ll stay in the hospital for at least 2 nights after your surgery. Exactly how long you stay in the hospital depends on your recovery.

In the pediatric inpatient unit

Caring for your incision

You can shower right after your surgery. For the first 5 days after your surgery, wear a shower cap to keep your incision from getting wet.

Medications

You can take your usual medications right away after your surgery. Your doctor may also give you 1 or more of the following medications after your surgery:

  • Steroids to decrease the swelling in your brain.
  • An antacid to protect your stomach while you’re taking steroids.
  • Pain medication to help manage headaches or other pain.

Keep taking potassium iodide (SSKI) and liothyronine (Cytomel) once a day until 2 weeks after your surgery. Remember to write each dose you take in your medication diary. Be sure to write any missed doses in your diary. Bring your diary to all your appointments.

Blood draws

You’ll have blood drawn as needed while you’re in the hospital. Your blood will be tested to make sure you’re recovering well after your surgery and treatment.

You’ll also have blood drawn to measure the amount of radioactivity in your blood. This blood draw is for research, not treatment.

Visitors

Your parents, other family members, and friends can visit you while you’re in the hospital, as long as they’re healthy. No one with any signs of being sick (such as a fever, cough, congestion, sore throat, or rash) can visit.

Visiting hours might be different depending on where in the hospital you’re staying. Ask your nurse about visiting hours and other guidelines for visitors. Visitors on the Pediatric Unit are limited to parents and 2 other visitors daily.

Parents can call the inpatient unit at any time. Ask your nurse for the phone number. Because of privacy concerns, staff can only give information to parents or spouses. Please tell friends and other relatives not to call the inpatient unit for information.

If your radiation safety officer gives you different instructions for having visitors, follow those instructions.

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At Home

The information in this section will help you care for yourself after you’re discharged from the hospital. It also explains what to expect during your follow-up visits after your infusion.

Write down your questions and be sure to ask your healthcare provider.

After discharge

Medications

Keep taking potassium iodide (SSKI) and liothyronine (Cytomel) once a day until 2 weeks after your surgery. Your doctor will tell you what date you should stop taking the medication. Remember to write each dose you take in your medication diary. Be sure to write any missed doses in your diary. Bring your diary to all your appointments.

Don’t take aspirin, products containing aspirin, or NSAIDs (such as ibuprofen). These things can cause bleeding. Your surgeon will tell you when it’s okay to take these medications. For more information, read Common Medications Containing Aspirin, Other Nonsteroidal Anti-inflammatory Drugs (NSAIDs), or Vitamin E.

Caring for your incision

  • You can leave your incision uncovered. When you’re outside, protect it from the sun by wearing a hat or scarf.
  • Keep your incision dry for the first 5 days after your surgery.
  • Don’t put any creams, ointments, or hair products on your incision while it’s healing. This may take about 6 weeks.
  • Don’t use a hair dryer until your incision is completely healed. This may take about 6 weeks.

You may have some mild swelling around your incision. Your incision may burn, itch, or feel numb as it heals. These things are normal.

Your surgeon or NP will remove your sutures about 7 to 10 days after your surgery, depending on how your incision is healing.

Showering

You can shower right away after your surgery, but don’t get your incision wet for the first 5 days after surgery. Wear a shower cap when you shower.

Starting 5 days after your surgery, wash your hair every day. You can let the shower water run over your incision. This helps loosen the crusting on your incision and will make it easier for your surgeon or NP to remove your sutures. When you wash your hair:

  • Use a gentle shampoo (such as baby shampoo) to clean the area around your incision. Gently massage the area to wash off any dried blood or drainage.
  • Gently clean your incision with soap and water. Don’t use a washcloth or scrub your incision.
  • After your shower, pat your incision dry with a clean towel.

Don’t let your incision soak in water until it’s completely healed. Avoid baths, hot tubs, and swimming pools for at least 2 weeks after your surgery. If your incision needs more time to heal, you may need to wait longer. Your neurosurgeon or NP will tell you when it’s okay to take baths and swim at your first follow-up appointment after your surgery.

Activities and exercise

You can go back to doing most of your usual activities right after your surgery. Your doctors and nurses will give you instructions on what exercises and movements you can do while your incision is healing.

Don’t lift objects heavier than 10 pounds (4.5 kilograms) until your doctor says it’s safe. This is usually 4 weeks after your surgery. Examples of objects heavier than 10 pounds include a large purse or bag, backpack, or briefcase. It may be helpful to use a wheeled backpack for heavy textbooks.

Don’t participate in gym class for 6 weeks after your surgery. It’ll take at least 6 weeks for your skull to heal. Check with your doctor or nurse before starting any exercise or gym activity, such as running, jogging, or lifting weights. You can exercise by walking.

Going back to school or work

You can go back to school or work as soon as you feel ready. If your job involves lots of movement or heavy lifting, you may need to stay out a little longer than if you sit at a desk. Talk with your doctor about when it would be safe to go back.

Driving

Don’t drive:

  • For 2 weeks after your surgery.
  • If you’re having problems with your vision or memory.
  • While you’re taking prescription pain medication. These medications can make you drowsy and make it unsafe for you to drive.

If you’re taking antiseizure medications, don’t drive until your neurologist gives you permission.

Follow-up appointments

During the first 4 weeks (about 30 days) after your surgery, your follow-up appointments and scans must be done at MSK. Bring your medication diary with you to all your appointments.

You’ll have appointments at least once a week for the first 4 weeks after your surgery. During these appointments, you’ll have detailed physical and neurological exams. You may also have imaging scans and blood tests during some appointments. About 4 weeks after your surgery, you’ll have an MRI scan of your brain.

More than 4 weeks after surgery

Starting about 4 weeks after your surgery, it’s best to see your MSK doctor about every month. If you live far away from New York City, it’s okay to see your local oncologist. If you’re seen locally, we’ll ask your local oncologist to send us updates about your health.

When to contact your healthcare provider

Call your healthcare provider right away if you have:

  • A fever of 100.4 °F (38.0 °C) or higher
  • Drainage from your incision
  • Shortness of breath
  • Severe swelling or redness around your incision
  • Increased pain
  • Seizures
  • Increased sleepiness
  • Severe worsening speech, strength, vision, or sensation
  • Change in your mental status
  • Lack of bowel or bladder control
  • Pain in your calf
  • Severe headaches, nausea, and vomiting
  • Any other concerns

Contact information

If you have any questions or concerns, talk with your doctor or NP. You can reach them Monday through Friday from 9:00 am to 5:00 pm. Call the office directly at 212-639-7056.

After 5:00 pm, during the weekend, and on holidays, call 212-639-2000 and ask for the pediatric neurosurgery fellow on call.

To speak with a social worker, call the Social Work department at 212-639-7020.

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Support Services

This section contains a list of support services that may help you get ready for your surgery and recover safely.

Write down your questions and be sure to ask your healthcare provider.

MSK support services

Admitting Office
212-639-7606
Call if you have questions about your hospital admission, including requesting a private room.

Anesthesia
212-639-6840
Call if you have questions about anesthesia.

Blood Donor Room
212-639-7643
Call for more information if you’re interested in donating blood or platelets.

Bobst International Center
888-675-7722
MSK welcomes patients from around the world. If you’re an international patient, call for help arranging your care.

Chaplaincy Service
212-639-5982
At MSK, our chaplains are available to listen, help support family members, pray, contact community clergy or faith groups, or simply be a comforting companion and a spiritual presence. Anyone can request spiritual support, regardless of formal religious affiliation. The interfaith chapel is located near the main lobby of Memorial Hospital and is open 24 hours a day. If you have an emergency, please call the hospital operator and ask for the chaplain on call.

Counseling Center
646-888-0200
Many people find that counseling helps them. We provide counseling for individuals, couples, families, and groups, as well as medications to help if you feel anxious or depressed. To make an appointment, ask your healthcare provider for a referral or call the number above.

Food Pantry Program
646-888-8055
The food pantry program provides food to people in need during their cancer treatment. For more information, talk with your healthcare provider or call the number above.

Integrative Medicine Service
646-888-0800
Integrative Medicine Service offers many services to complement (go along with) traditional medical care, including music therapy, mind/body therapies, dance and movement therapy, yoga, and touch therapy.

MSK Library
library.mskcc.org
212-639-7439
You can visit our library website or speak with the library reference staff to find more information about your specific cancer type. You can also visit LibGuides on MSK’s library website at libguides.mskcc.org.

Patient and Caregiver Education
www.mskcc.org/pe
Visit the Patient and Caregiver Education website to search our virtual library. There, you can find written educational resources, videos, and online programs.

Patient and Caregiver Peer Support Program
212-639-5007
You may find it comforting to speak with someone who has been through a treatment similar to yours. You can talk with a former MSK patient or caregiver through our Patient and Caregiver Peer Support Program. These conversations are confidential. They may take place in person or over the phone.

Patient Billing
646-227-3378
Call if you have questions about preauthorization with your insurance company. This is also called preapproval.

Patient Representative Office
212-639-7202
Call if you have questions about the Health Care Proxy form or if you have concerns about your care.

Perioperative Nurse Liaison
212-639-5935
Call if you have questions about MSK releasing any information while you’re having surgery.

Private Duty Nursing Office
212-639-6892
You may request private nurses or companions. Call for more information.

Resources for Life After Cancer (RLAC) Program
646-888-8106
At MSK, care doesn’t end after active treatment. The RLAC Program is for patients and their families who have finished treatment. This program has many services, including seminars, workshops, support groups, counseling on life after treatment, and help with insurance and employment issues.

Sexual Health Programs
Cancer and cancer treatments can have an impact on your sexual health. MSK’s Sexual Health Programs can help you take action and address sexual health issues before, during, or after your treatment.

  • Our Female Sexual Medicine and Women’s Health Program helps women who are dealing with cancer-related sexual health challenges, including premature menopause and fertility issues. For more information, or to make an appointment, call 646-888-5076.
  • Our Male Sexual and Reproductive Medicine Program helps men who are dealing with cancer-related sexual health challenges, including erectile dysfunction. For more information, or to make an appointment, call 646-888-6024.

Social Work
212-639-7020
Social workers help patients, family, and friends deal with issues that are common for cancer patients. They provide individual counseling and support groups throughout the course of treatment, and can help you communicate with children and other family members. Our social workers can also help refer you to community agencies and programs, as well as financial resources if you’re eligible.

Tobacco Treatment Program
212-610-0507
If you want to quit smoking, MSK has specialists who can help. Call for more information.

Virtual Programs
www.mskcc.org/vp
MSK’s Virtual Programs offer online education and support for patients and caregivers, even when you can’t come to MSK in person. Through live, interactive sessions, you can learn about your diagnosis, what to expect during treatment, and how to prepare for the various stages of your cancer care. Sessions are confidential, free, and led by expert clinical staff. If you’re interested in joining a Virtual Program, visit our website at www.mskcc.org/vp for more information.

For more online information, visit the Cancer Types section of www.mskcc.org.

External support services

Access-A-Ride
web.mta.info/nyct/paratran/guide.htm
877-337-2017
In New York City, the MTA offers a shared ride, door-to-door service for people with disabilities who can’t take the public bus or subway.

Air Charity Network
www.aircharitynetwork.org
877-621-7177
Provides travel to treatment centers.

American Cancer Society (ACS)
www.cancer.org
800-ACS-2345 (800-227-2345)
Offers a variety of information and services, including Hope Lodge, a free place for patients and caregivers to stay during cancer treatment.

Cancer and Careers
www.cancerandcareers.org
A resource for education, tools, and events for employees with cancer.

CancerCare
www.cancercare.org
800-813-4673
275 Seventh Avenue (Between West 25th & 26th Streets)
New York, NY 10001
Provides counseling, support groups, educational workshops, publications, and financial assistance.

Cancer Support Community
www.cancersupportcommunity.org
Provides support and education to people affected by cancer.

Caregiver Action Network
www.caregiveraction.org
800-896-3650
Provides education and support for people who care for loved ones with a chronic illness or disability.

Corporate Angel Network
www.corpangelnetwork.org
866-328-1313
Offers free travel to treatment across the country using empty seats on corporate jets.

Gilda’s Club
www.gildasclubnyc.org
212-647-9700
A place where men, women, and children living with cancer find social and emotional support through networking, workshops, lectures, and social activities.

Good Days
www.mygooddays.org
877-968-7233
Offers financial assistance to pay for copayments during treatment. Patients must have medical insurance, meet the income criteria, and be prescribed medication that’s part of the Good Days formulary.

Healthwell Foundation
www.healthwellfoundation.org
800-675-8416
Provides financial assistance to cover copayments, health care premiums, and deductibles for certain medications and therapies.

Joe’s House
www.joeshouse.org
877-563-7468
Provides a list of places to stay near treatment centers for people with cancer and their families.

LGBT Cancer Project
http://lgbtcancer.com/
Provides support and advocacy for the LGBT community, including online support groups and a database of LGBT-friendly clinical trials.

LIVESTRONG Fertility
www.livestrong.org/we-can-help/fertility-services
855-744-7777
Provides reproductive information and support to cancer patients and survivors whose medical treatments have risks associated with infertility.

Look Good Feel Better Program
www.lookgoodfeelbetter.org
800-395-LOOK (800-395-5665)
This program offers workshops to learn things you can do to help you feel better about your appearance. For more information or to sign up for a workshop, call the number above or visit the program’s website.

National Cancer Institute
www.cancer.gov
800-4-CANCER (800-422-6237)

National Cancer Legal Services Network
www.nclsn.org
Free cancer legal advocacy program.

National LGBT Cancer Network
www.cancer-network.org
Provides education, training, and advocacy for LGBT cancer survivors and those at risk.

Needy Meds
www.needymeds.org
Lists Patient Assistance Programs for brand and generic name medications.

NYRx
www.nyrxplan.com
Provides prescription benefits to eligible employees and retirees of public sector employers in New York State.

Partnership for Prescription Assistance
www.pparx.org
888-477-2669
Helps qualifying patients without prescription drug coverage get free or low-cost medications.

Patient Access Network Foundation
www.panfoundation.org
866-316-7263
Provides assistance with copayments for patients with insurance.

Patient Advocate Foundation
www.patientadvocate.org
800-532-5274
Provides access to care, financial assistance, insurance assistance, job retention assistance, and access to the national underinsured resource directory.

RxHope
www.rxhope.com
877-267-0517
Provides assistance to help people get medications that they have trouble affording.

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Educational Resources

This section contains the educational resources that were referred to throughout this guide. These resources will help you get ready for your surgery and recover safely after surgery.

Write down your questions and be sure to ask your healthcare provider.

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