Category Archives: Patients


Oncology Care Teams

When someone is being treated for cancer, they will work with a team of medical professionals in the oncology department. This team approach ensures you get the best medical care possible. Who are some of the people on a care team?

Receptionist/Appointment Specialist

This will be the first person you talk to at the cancer center. They take your insurance information as well as your co-pay. When your appointment is done, they will make upcoming appointments that your doctor has ordered. These may include lab work, imaging, and future oncology appointments.

Lab Technician

The lab technician will take your blood, or urine and run any necessary tests on it.  If they are taking blood, they may access your port to do this. The results let your oncologist know a lot about your health. They can see whether you have signs of being immunocompromised. They can detect anemia and other issues such as low protein or magnesium levels. From this information, your doctor can make recommendations, including whether you will receive your treatment that day.

Care Coordinator/Patient Navigator

This may be a nurse, a social worker, or even a volunteer. He or she will be your “go-to” person. They will likely be one of the first people you will meet in the oncology department. Your care coordinator will learn as much as they can about you, your family, and your health. He/she will Find out what your needs are and then connect you to other people who can help with specific concerns. They may help you find financial resources, counseling and support services.

Our care coordinator’s name was Anne. She was so compassionate as she listened to our story. She even cried. Her kindness touched our hearts. We knew then, that to her, we were more than names on a chart. We were people with lives in the balance. When she learned that we had three young children at home, she told us about the Angel Foundation, a resource that helps families with a parent who has cancer.

Oncologist

Your oncologist is the person who pulls everything together. He or she had a goal of helping you live long and well. Communicating well with your oncology doctor. He or she will do their best to help you achieve your goals.

oncology care team

Palliative Care Specialist

This may be a doctor, a nurse, or a physician assistant. The palliative care specialist works with other members of your oncology care team to treat and symptoms of your cancer and the side effects of its treatment. They are especially skilled at pain control.

Oncology/Infusion Nurse

Asks intake questions about how you’ve been feeling since your last visit. It’s very important to tell him/her about any symptoms you’ve experienced, especially any changes. You will be asked to rate your pain on a scale from 1-10. Be honest about your pain so your care team can address it properly.

Tell the nurse about any changes in the medication you’ve been taking as well as any side effects you’ve experienced. Don’t forget about over the counter drugs. Something as simple as antacid can have interactions with your cancer medications. The medications you are taking also give your doctor clues as to your overall health. For example, if you are taking more pain medications than usual, it may indicate increased pain or the need to change to a more effective pain medication.

An infusion nurse will access your port, which is no easy feat, and they’ll administer chemotherapy. Nurses are trained to watch for side effects and other changes in a patient. I have great admiration for oncology nurses.

Physician Assistant

Physician Assistants do much of the same work that doctors do. In fact, it isn’t uncommon for people to think that a PA is an MD.  Often they will alternate appointments. This gives a patient another set of eyes to assess their health. It also allows the oncologist to see more patients without getting burned out. If you need an unexpected, last minute, appointment, it’s usually easier to get one with a physician assistant.

Every 3 months my husband gets a CT scan. A few days later, he sees his oncologist to talk about the scan results. The two monthly appointments in between scans, he sees a physician assistant. In his case, the PA is also a palliative care specialist. This is particularly helpful because he has a lot of pain.

Oncology Pharmacist

Oncology pharmacists are pharmacists who specialize in medications used to treat cancer. They understand how various drugs interact with one another as well as how to deal with the side effects of your cancer treatment. Oncology pharmacists regularly talk with patients about their treatment. They educate patients and caregivers about the cancer treatment and answer any questions they may have about their medications.

Chaplain

The chaplain in the cancer center does more than meets the eye. He or she is available to talk withOncology Care team patients and their family about spiritual matters. Having cancer makes faith a priority, even for people who haven’t given it much thought before. Chaplains who work in cancer centers are very good at supporting people when they are faced with life and death matters.

They not only serve the patients directly but also give counsel to the doctors and nurses who work in one of the most difficult medical fields. They are available to pray with patients and staff alike. Even though they will have a particular faith background, they are a valuable spiritual resource for patients and families from all faith traditions (or no faith tradition at all).

Oncology Social Worker

An oncology social worker is an expert in helping patients cope with life as a cancer patient. They can also help caregivers and the patient’s children. They can tell you about appropriate support groups as well as financial resources. If you have a non-medical question about living with cancer, an oncology social worker is a person you will want to talk to.

Psychiatrists in the Oncology Center

Living with cancer takes a tremendous toll on a patient, not only physically, but also emotionally and psychologically. Psychiatrists in the oncology center help patients with stress management, cognitive behavior therapy, pain management techniques, and counseling to maximize the quality of life for the patient and his or her loved ones.

Hematologist-Oncologist

This is a physician who specializes in the diagnosis and treatment of blood diseases including leukemia, lymphoma, hemophilia, anemia, and sickle cell disease. Your oncologist may also refer you to a hematologist if the effects of your cancer treatment are adversely affecting your blood health.

Pathologist

You’ll probably never meet your pathologist, but they are an essential part of your oncology care team. Pathologists are doctors. They are the people who look at cells, tissue, and organs, that are biopsied to determine whether a patient has cancer. Pathologists make the final diagnosis of cancer. They also look for mutations that impact what type of treatment a patient is given.

Registered Dietitian

While a lot of people tell their family and friends how they should and shouldn’t eat, a registered dietitian makes nutritional recommendations to patients based on science and the patient’s individual needs.

One of the first appointments Dan had after being diagnosed with cancer was with the dietitian who worked with the oncology department. She dispelled the myths of cancer nutrition and told us the hard facts. (1) 20% of people who die of cancer actually die of malnutrition. (2) She told us that best predictor of survival was maintaining or gaining weight. “If you feel like eating a Cinnabon, eat a Cinnabon,” she said. This ran contrary to what we had heard from a lot of people. She explained nutrition from the perspective of oncology. She said that Dan needed to concentrate on two things. He needed to keep his calories up and eat twice as much protein. That advice has served him well.

Ways to Offer Help when a Friend has Cancer

Radiologist

Radiologists are doctors who specialize in reading z-rays, scan, and other imaging technology. They help in the diagnosis process. You will have regular imaging throughout your cancer treatment, as well as follow-up scans to make sure you are still cancer free. The radiologist will read all those scans. Even though the radiologist is an important part of your oncology team, you will likely never meet him or her.

There is one exception. Interventional radiologists perform non-surgical minimally-invasive image-guided procedures. When my husband had the Gamma Knife procedure done to remove a brain metastasis, there was a radiologist as part of the team and we met him.

Physical/Occupational Therapists

These amazing people help cancer patients live as normally as possible. They teach you how to regain strength, balance, and skills that cancer may have tried to steal. They help with everything from therapeutic exercise to using tools that make life easier.

Dermatologist

Chemotherapy and radiation often have adverse effects on a patient’s skin. EGFR targeted therapies cause rashes and skin eruptions. Dermatologists will assess and treat these side effects. They also make recommendations for skin care in survivorship. In a survey of cancer patients, 84% said they had never been referred to a dermatologist and over half would have felt better if they had been. (3)

Surgeon

Before modern medicine, surgery was the only cancer treatment that had a chance of success. Surgeons work with your oncologist in a variety of ways. They often take the tissue sample for biopsies. They help diagnose and stage cancer. Surgeons help treat cancer when surgery is an option.

These are just some of the people who are part of your oncology team. There are so many people who affect your experience as a cancer patient. Often these team members overlap in what they do. They work together to give you the best, most complete care possible.

I am grateful to the people who have been a part of Dan’s care team over the years. They are special people who have always made us feel like he is in good hands.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. http://www.cancercenter.com/community/nutritional-support/tab/preventing-malnutrition/
  2. http://www.nbcnews.com/id/30812433/ns/health-cancer/t/push-fight-malnutrition-cancer-patients/
  3. http://www.mdmag.com/contributor/beth-mclellan-md-/2015/07/5-ways-oncologists-and-dermatologists-can-work-together-to-improve-cancer-care-

Neuropathy

Neuropathy is a set of symptoms affecting the nervous system. Peripheral neuropathy affects your nerves, or those on the periphery of your body: Skin, fingers, toes, etc. Chemotherapy-induced peripheral neuropathy is when these symptoms are the result of chemotherapy.

Symptoms of Neuropathy

  • Numbness
  • Pain This may be constant, or it may come and go like a sharp, shooting/stabbing pain.
  • Tingling, pins, and needles or electric shock type pain.
  • Muscle cramps
  • Muscle fatigue
  • Burning sensation
  • Lack of dexterity, trouble buttoning shirt etc.
  • Problems with balance
  • Sensitivity to cold/heat
  • Trouble swallowing
  • Blood Pressure changes
  • Decrease in reflexes

Symptoms tend to start farthest away from your head (toes and feet) and move closer to your head over time. They are usually bilateral, affecting both sides of the body at the same time.

If Neuropathy Comes Knocking

If you notice symptoms of neuropathy (or any change in your health and well-being) tell your oncologist immediately. They need to know as soon as possible how your body is reacting to the treatment you are on. Then, your doctor can make any necessary changes in your treatment plan and address your concerns when side effects are more easily managed.

Also, see a neurologist to rule out any underlying neurological problems that might be causing your symptoms. If you haven’t had a recent brain MRI, talk to your doctor about getting one.

Consult an orthopedist. They can check your musculoskeletal structure for problems that could be affecting your feet and legs.

Chemotherapy and Neuropathy

Chemotherapy is used to kill cancer cells. It can also affect nerves that connect the spinal cord to the patient’s muscles, skin and internal organs.

Whether a patient develops chemotherapy-induced neuropathy depends on many factors, including the type of chemotherapy used, and at what doses it’s given. And, of course, the individual patient’s health also plays a part.  It can begin at any time after treatment starts and often gets worse as treatment goes on.

Chemotherapy-induced neuropathy may go away after treatment is completed, or it may be a long-term or even permanent problem.

Preventing chemotherapy-induced neuropathy.

Before beginning any treatment plan, discuss the risks of chemotherapy-induced peripheral neuropathy and the ways you can work with your medical team to prevent it.

Is the potential neuropathy from any given treatment usually temporary or is it often permanent?

Find out what side effects to should watch for.

Ask your doctor their preferred way of receiving messages is. Many doctors are moving to electronic charting. Some still prefer to get a phone call.

Your doctor might change the way he or she gives you your chemotherapy. He/she might:

  • Reduce the dose of the chemotherapy
  • Administer smaller doses more frequently
  • Deliver chemotherapy as a slow, non-stop infusion over a longer period of time

Medical Treatments for Chemotherapy-Induced Neuropathy

Oral medications:

  • Steroids (short term)
  • Low dose antidepressants
  • Prescription pain medication (opioids)

Medical Marijuana (in states where it is legal) (1)

Topical Creams:

  • Steroidal creams (short term)
  • Lidocaine, which is a numbing cream or ointment
  • Capsaicin, which is made from the capsaicin oils of hot peppers

Occupational Therapy

  • To help with fine motor coordination (Buttons and shoelaces etc.)
  • To decrease the risk of falls

Alternative/Complementary Therapies:

Relaxation Techniques:

  • Meditation
  • Visualization
  • Hypnosis
  • Biofeedback

Research has proven that these, and other relaxation techniques, can greatly reduce pain levels in patients. (2)

For more information, read this article from the Foundation for Peripheral Neuropathy. (3)

 

acupuncture for neuropathyAcupuncture

Research has shown that Acupuncture improves nerve conduction in peripheral neuropathy. (5) Be sure to use a licensed acupuncture specialist. More and more chiropractors are learning acupuncture.

I have been receiving acupuncture at a pain clinic for the pain in my feet. I was skeptical of the practice until I experienced its benefits.

My doctor told me what led him to become licensed in acupuncture. His father in law is a veterinarian. One day he said, “Grant, I want to show you something.” He then proceeded to perform acupuncture on a dog who was suffering from arthritis in her hips. After the acupuncture session was over, the dog could walk with no problems. “There’s no placebo effect in animals,” he pointed out. Seeing was believing, and my doctor went back to school to learn an additional way of helping his patients.

Manual Lymph Drainage

Because manual lymph drainage is contraindicated in the presence of metastatic cancer, and its benefits have not been well established, I will not go into detail on this alternative treatment for neuropathy other than to say that the reason this is potentially harmful is because of the way the lymphatic system can be used to transport cancer cells around the body with metastasis. You certainly don’t want to help the process out. If you don’t have metastatic cancer and would like to investigate further, check with a reputable massage therapist.

ExercisePool therapy for neuropathy

Exercise to improve your circulation. Consider pool therapy or swimming if pain makes “regular” exercise or walking too painful. Check with your doctor to make sure that the pool is safe for you. Some people need to avoid the chlorinated water because of its effects on their skin. There is also an increased risk of infection. Your doctor will be able to help you weigh the benefits and risks.

Some Additional Suggestions

Avoid alcohol, since it can cause and/or make nerve damage worse.

If you have neuropathy in your fingers, be careful when handling sharp objects. Wear protective gloves while gardening or doing other chores which could damage your hands.

Likewise, if you have neuropathy in your feet, avoid walking barefoot or in open-toed shoes. If the neuropathy in your feet affects your balance, or you stumble on occasion because of it, use supportive aids(handrails, cane, walker). Have grab bars installed in your bathroom.

Avoid extreme temperatures. Check the temperature that your hot water heater is set on so that you don’t scald yourself accidentally.

Eat a high fiber diet if constipation is a problem. Not only can neuropathy affect your bowel habits, but so can the medications you take to manage pain.

What are YOUR thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. The Neuropathy Journal, Treating Neuropathic Pain with Medical Marijuana. Morrow, David
  2. Western Journal of Medicine. 2001 Oct; 175(4): 269–272. Pub Med.gov
  3. The Foundation for Peripheral Neuropathy. https://www.foundationforpn.org/living-well/integrative-therapies/mind-and-body/
  4. Acupuncture treatment improves nerve conduction in peripheral neuropathy. Eur J Neurol. 2007 Mar;14(3):276-81. Pub Med.gov

 

Originally posted 2018-02-12 07:00:39.


palliative care specialist

Have you ever talked with a palliative care specialist? Do you know what they do, or how they could help you with your cancer treatment?

What a palliative care specialist does

“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness-whatever the diagnosis.

“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”[1]

Some issues that a palliative care specialist can help resolve

  • Anxiety
  • Shortness of breath/cough
  • Neuropathy
  • Weight gain/loss
  • Stress/depression
  • Nausea
  • Memory problems
  • Fatigue

How do we reconcile different goals?

Sometimes at the outset of care, a patient might feel like their goals aren’t being addressed, or that their goals are at offs with those of their doctor.

Here’s an example of 2 different points of view:

  • A doctor sees lung cancer as the problem.
  • A patient sees shortness of breath and fatigue as the problem.

Doctors are focused on healing the sick. That’s their purpose, and they usually do an exceptional job of fulfilling it. Unfortunately, they may fall short when it comes to addressing pain and symptoms (person-centered care).

This is where palliative care shines.  You can still receive treatment for cancer, and as you do, a palliative care specialist can work with your doctor to reduce the impact that symptoms and side effects have on your day to day life.

The goal of palliative care

The goal of palliative care is to improve quality of life for the patient and their family. This happens using a team approach. Doctors, nurses, specialists, chaplains, caregivers, etc. all form a team which works together to help patients:

  • Cure, or halt disease
  • Maintain quality of life
  • Coordinate care
  • Make informed decisions

This can begin at any stage of the illness.

Palliative care can, and should, be provided at any stage of the lung cancer journey. Treating symptoms and side effects is as important as treating the cancer itself. By reporting them as soon as they occur, your doctor can address them early on. You are then more likely to continue to get the care you need throughout the course of your treatment and beyond. The aftermath of treatment must also be considered and treated. This contributes to your overall quality of life.

But, few people understand what a palliative care specialist does…

In a 2011 national survey, the Center to Advance Palliative Care, American Cancer Society, and the American Cancer Society Cancer Action Network found that 70% of consumers weren’t at all knowledgeable about palliative care. Yet, once informed about palliative care and its benefits, 92% of consumers would consider palliative care for their families and believe that patients nationwide should have access to it.

…Including physicians.

Unfortunately, physicians tend to equate palliative care with hospice and only refer patients to this important service for end-of-life care.

American Society of Clinical Oncology believes cancer patients should have early access to palliative care. They even updated their guidelines in 2017, to reflect this:

“Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.”

Doctors should refer patients with advanced cancer to a palliative care specialist for the optimal treatment of issues that arise during the course of treatment. Palliative care relieves pain and symptoms, reduces hospitalizations, ER visits and unnecessary tests, and also increase the length of a patient’s survival. Oncology and palliative care specialists can (and should) collaborate at any stage of the disease to extend survival and contribute to a high quality of life.

Palliative care is not hospice.

Hospice patients are referred based on a prognosis of 6 months or less. Palliative care has nothing to do with your prognosis. It is need-based, based on need and suffering. Talk to your oncologist to increase coordination of care with a palliative care specialist.  If your oncologist is resistant to palliative care, talk to a palliative care specialist yourself. They can reach out to your oncologist to explain how palliative can increase the amount of time the patient can continue with treatment. This might just help y9our oncologist improve the level of care for other patients, as well!

Palliative care can be essential beyond treatment for lingering issues such as neuropathy and immunotherapy-related issues.

Another myth about palliative care

Palliative care is covered by insurance, and you can continue curative treatment while receiving these services. There are even home care specialists who deliver palliative care. They are also experts at monitoring and safely dispensing opioids. So if you are dealing with cancer-related pain which requires opioids, you can get more knowledgeable help. Give it a try and see what you think.

Palliative care specialists see the person beyond the patient, beyond the disease.

For more resources on palliative care, check out www.getpalliativecare.org.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Public Opinion Research on Palliative Care. Research Commissioned by the Center to Advance Palliative Care, 2011, pp. 1–15, Public Opinion Research on Palliative Care.

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