Good Information Sources

CancerNet: Cancer Basics
Medline Plus: Cancer
Penn Medicine: OncoLink
American Cancer Society: Learn About Cancer
MacMillan Cancer Support (Great Britain): About Cancer

History of Cancer

Article: A Brief History of Cancer

Historical Cancer Highlights

Terminology

Common terms you’ll hear when dealing with cancer

Cancer Statistics

American Cancer Society: Cancer Statistics
New York State Cancer Registry
Cancer Control Planet

Videos on Cancer

CancerNet: Videos

About Herbs, Botanicals & Other Products is an excellent resource from Memorial Sloan-Kettering Cancer Center.

Other useful resources:

Cancer Alternative Therapies (Medline Plus)

Complementary and Alternative Therapies (Cancer Research UK)

Complementary and Alternative Medicine (National Cancer Institute)

Columns by Bob Riter about alternative cancer care

Living with advanced cancer is scary. One must cope with a serious reality but also move forward with life on a day-to-day basis. We’ve compiled some helpful resources below. We also offer a twice-a-month support group for people living with cancer as a chronic disease. We call it Pat’s Group in honor of Pat Thonney who created the group. Please call us at 277-0960 or email info@crcfl.net. We’d love to talk with you.

Good Information Resources

National Cancer Institute: Advanced Cancer

National Cancer Institute: Advanced Cancer and Caregivers

National Cancer Institute: When Someone you Love has Advanced Cancer

MacMillan Cancer Support (Great Britain): Coping with Advanced Cancer

Center to Advance Palliative Care: Get Palliative Care.Org

CancerNet: Advanced Cancer

Bob Riter’s columns about advanced cancer

Aging with Dignity

CaringInfo

American Bar Association

Local Resources

Hospicare and Palliative Care Services of Tompkins County

Palliative Care at Cayuga Medical Center

Cornell Law School Estate Planning Practicum

What is Lymphedema?

Lymphedema A condition caused by a blockage in the lymphatic system, lymphedema causes swelling and other problems in the affected area. It is most commonly caused by lymph node removal or damage due to cancer treatment. When axillary lymph nodes are removed during breast surgery (with sentinel node biopsy or axillary dissection) or are treated with radiation therapy, the lymph vessels can become blocked. This blockage prevents lymph fluid from leaving the area, which leads to swelling. It can appear in any area of the upper body on the same side as the breast cancer including the hand, arm, underarm, breast, chest wall, or trunk (front or back).   Primary Lymphedema which is a rare, inherited condition caused by problems with the development of lymph vessels in your body. 

The risk of developing lymphedema depends on the type of surgery performed, factors such as obesity or weight gain after surgery or any complications after surgery.  The lymphatic system can also be injured from extensive surgery, radiation, or injury.  Most patients will develop lymphedema within 2-3 years but the risk remains over a person’s lifetime and can increase with trauma or injury.  

If you notice symptoms of lymphedema, contact your doctor or nurse. Other causes of limb swelling, such as deep vein thrombosis or cancer recurrence, need to be excluded before lymphedema therapy can begin. There is no cure for lymphedema once it is established but the degree of fluid retention can vary.  

The main goals of treatment are to control swelling, relieve symptoms, and prevent the swelling from worsening over time. A therapy program that combines massage, skin care, exercise, and compression garments (compression bandages or a lymphedema sleeve or stocking) is recommended. Treatment should begin as soon as possible. A healthcare provider or program with expertise in treating lymphedema can be especially helpful.

How to reduce your risk of developing Lymphedema:

In general, avoid cuts, burns or damage to the skin of your affected limb.  

• Start doing the exercises your physician or Physical Therapist prescribes as soon as they say you can start. 
• Try to avoid infections/burns
• If at all possible have blood draws, injections, IV’s, and vaccinations in an unaffected limb
• Moisturize your nails and cuticles often. If you have a manicure, tell them NOT to cut your cuticles.   Use lotion to keep your skin from getting dry and cracked
• Keep your skin and nails as clean and dry as possible. If you have an insect bite, cut, or hangnail, wash with soap and water , keep the site clean, use an antibacterial cream, and keep it covered. ( call if it doesn’t heal or any signs of infection)
• Wear gloves when gardening, washing dishes, and for general cleaning
• Use a thimble if you sew
• Wear sunscreen to prevent sunburn
• Use an electric razor to shave underarms
• Wear oven mitts
•  Avoid extreme temperature changes when bathing or washing dishes.
•  Avoid tight clothes or jewelry.
• Don’t carry heavy objects with your affected arm. Check with your surgeon or physical therapist for sensible weight limits. 
•  Have your blood pressure taken in an unaffected arm. 
• Consider wearing a compression sleeve or stocking; especially when flying. You will need to be measured and fitted for a sleeve/stocking
• Dry Brushing- Can help stimulate the lymphatic system See handout for how to do dry brushing 
  

Symptoms of Lymphedema include:

• swelling in the arm, hand, legs, ankles; you may notice tight rings or watches. 
• a feeling of tightness, heaviness, or fullness in the arm, hand, leg or aching discomfort 
• Feeling tightness in the skin, a thickening of the skin, and/or pain or redness in the arm and hand
• Fatigue with use
• Numbness or tingling

It is important to seek evaluation and treatment as soon as possible if you do experience swelling, or any of these other symptoms. Contact your physician immediately if you have signs of infection in your affected extremity (i.e. redness, warmth, elevated temperature). 

Impact of lymphedema:

While lymphedema is usually not a life-threatening condition, it can have a major impact on your quality of life. A change in how your limb looks can be distressing as well as painful.

• Having a swollen or misshapen arm/leg may increase the worry about how it looks.  
• If lymphedema affects the ability to use your arm or leg, this can affect your quality of life, particularly if it is your dominant arm (eg, right arm if you are right-handed).
• Lymphedema can reduce tissue healing and occasionally causes chronic pain. For these reasons, prevention and early treatment of lymphedema are recommended.
• The limb with lymphedema can develop cellulitis, a skin infection that requires antibiotics and possible hospitalization.  Cellulitis can range from mild to severe. Most cases are treated effectively with antibiotics. Prompt treatment is key. If severe, or when left untreated, cellulitis can spread to your lymph nodes, bloodstream and deeper tissues, rapidly becoming life-threatening.

For patients who have lymphedema, in addition to the measures listed above, there are things you can do to help keep it from getting worse over time. Below are the most important things you can do.

To limit swelling:

• Do not wear clothing that restricts flow to and from the limb, and avoid activities that could interfere with lymph flow (eg, using a pelvic harness for rock climbing could constrict flow from the lower limb).
• Wear compression garments (special sleeves or stockings) to limit swelling. Garments that are made to measure and prescribed by your doctor or physical therapist are most effective.
• Keep your weight under control – Excessive weight gain or being overweight can worsen lymphedema and may limit the effectiveness of compression garments.
• Visit a lymphedema therapist – Some physical therapists are trained in a special kind of massage that can help with lymphatic drainage.
• Try to do some exercise and weight training – These activities have been shown to reduce the severity of lymphedema, improve overall fitness, and help with weight control.    https://youtu.be/MnS5MuenHpY
• If one of your arms is affected, avoid medical procedures that puncture the skin, if at all possible, in that arm. In addition, avoid continuous blood pressure monitoring on the affected arm. Blood pressure can be taken in the opposite arm or, if both arms are affected, in one of your legs.
• Contact your doctor or nurse if the affected arm or leg develops a rash; becomes red, blistered, painful, or warm to the touch; or if you get a fever (temperature greater than 100.4ºF or 38ºC). These symptoms could signal a possible infection that could cause the beginning or worsening of lymphedema.

Treatments include: 

Exercises: Light exercises can help encourage the lymph fluid to drain plus they can help prepare for everyday tasks. These are not strenuous exercises but they focus on mild contraction of the muscles in your arm/leg. Exercises can include walking, diaphragmatic breathing, stretching, strengthening, swimming.

Bandaging: Bandages that wrap your entire arm or leg help encourage the flow of the lymphatic fluid towards your trunk. A lymphedema specialist can show you how to wrap your arm with a special bandage (don’t use an ACE bandage).

Kinesiology Tape- You can ask your lymphedema specialist to help you learn how to use the kinesiology tape. 

Massage: Lymphatic massage by a lymphedema specialist (see below how to find a specialist) can help encourage the flow of lymphatic fluid and reduce the amount of swelling. This should not be done by someone who has not had the specialized training.  Other types of massage that can be done by yourself include Self Manual Lymphatic Massage and Dry brushing.  

Pneumatic compression: A sleeve is worn over your affected arm or leg that connects to a pump. The pump intermittently inflates the sleeve starting at your fingers or toes that helps to move the lymph fluid up towards your trunk. 

Compression garments: These garments are long sleeves or stockings that compress your limb to help move the lymph fluid out of your arm/leg. You need to be measured for your sleeve prior to purchasing a sleeve/socks as there are several different sizes and compression levels. A lymphedema specialist or a medical garment fitting specialist can do this. Some people will require custom made sleeves/socks

Surgery: There are three new surgical options to treat lymphedema: Vascularized lymph node transfer surgery, lymphovenous bypass and suction-assisted lipectomy (liposuction).  These are intricate microsurgical procedures used to treat patients with lymphedema. These options are only available at select large medical centers. 

Exercises for Moving Lymph Fluid:

STANDING:

1. Start with deep belly breathing, with your hand on your navel. Inhale deeply, then exhale while “scooping” down over navel. Repeat 5-10 x.
2. Neck and shoulders:
   1. Side bends (bring earlobe down toward shoulder)
   2. Head rotation (look side-to-side, slowly)
   3. Shoulder circles: shoulders go up (toward wars), then back (squeeze shoulder blades together), then down (away from ears). Repeat forward/backward 10x.
3. Arms and hands:
   1. Make small circles with your wrists
   2. Open and close your fingers
   3. Put arms straight out in front of you, alternate palms facing up/palms facing down
   4. Arms straight in front of you, then touch your shoulders. Exhale on shoulder touching, inhale as you straighten your arms in front. 10x, slowly.
   5. Raise your whole arm (like when you want to ask a question), inhale on up, exhale as you lower your arm. One arm at a time, 10x; repeat with other arm.
4. Trunk and hips:
   1. Side bends
   2. Do the twist!
   3. Rock front/back with your hips
   4. Rock hips side-to-side
   5. Make a big circle with your hips 
   6. Make small circles with your hips, squeezing side abdominal muscles

LYING ON MAT:

Place your feet on the wall for leg work.

1. Place your heels together, toes apart (“V”), bend and straighten knees to slide heels up and down the wall. 10 x
2. Alternate one leg at a time sliding up/down wall as above
3. Slide legs apart and together 
4. Lie on your back, legs straight on the floor (take them down from the wall)
   1. Pull one leg into your chest, holding 20-30 sec. Lower leg back down and repeat with other leg. Repeat with each leg 5-10x.
5. Lie with knees bent and feet on the floor. Let knees flop to the floor to the right, then over to the left. Go slowly with breathing out on the “flop” and in as you bring legs back to center. Repeat 10-15 x.

LYING ON YOUR SIDE:

Knees bent, ankles together. Place arms in front of you, palms together.

1. Lift the top arm over your head and back toward the floor (clam shell). Follow your hand with your eyes to get a good stretch across your chest. Repeat 10x, then switch to the other side.
2. Lie on your back, stretch your arms and legs to each corner, like a starfish. Tense and then release. Repeat 5x, then relax completely. Breathe deeply. You can add scooping from the very first step if you want!

For further information and referrals, see your surgeon or oncologist. While there is currently no cure for lymphedema, the treatment focuses on reducing the swelling and controlling the discomfort. Once you have been diagnosed with lymphedema, it is advisable to visit a lymphedema clinic to start your treatment. 

Lymphedema Resources: 

National Lymphedema Network 

The National Lymphedema Network (NLN) is an internationally recognized non-profit organization founded in 1988 by Saskia R.J. Thiadens, R.N. to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the risk reduction and management of primary and secondary lymphedema. The NLN is a driving force behind the movement in the U.S. to standardize quality treatment for lymphedema patients nationwide. In addition, the NLN supports research into the causes and possible alternative treatments for this often incapacitating, long-neglected condition.

Lymphatic Education & Research Network

Founded in 1998 by an attorney whose daughter was born with lymphedema and lymphatic disease, LE&RN’s primary mission is to foster and support research “that can deepen the medical community’s understanding of the lymphatic system, which is vital to the health of over individual, and to fight lymphatic disease through education, research and advocacy.”

"Living with Lymphedema" video

Lymphedema Treatment Act

Currently, Medicare, and consequently many other policies, do not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow. 

Step Up Speak Out

An advocacy organization based in Connecticut that supports breast cancer survivors with information about lymphedema. This site has information that may be helpful for any type of lymphedema. 

American Cancer Society

This link has information on lymphedema that is related to breast cancer and other cancers. 

Lymph Notes

Good source of information put together by medical writers. 

YouTube.com

YouTube has many good videos to help you learn to do a self lymphatic massage - Find one that applies to your situation- upper or lower extremity.  

Books

The Complete Lymphedema Management and Nutrition Guide by Jean Lamantia and Ann Dimenna 

100 Questions and Answers about Lymphedema by Saskia R.J. Thiadens, RN, Paula J Stewart, MD, CLT-LANA and Nicole L Stout MPT, CLT-LANA

Travel and Lymphedema:

If you have had any surgical procedure that has affected your lymph nodes, travel-related activities may be of concern. During travel there can be many physical stresses that can affect a body part that is at risk for developing lymphedema. The demand on the lymph system may cause extra swelling for long periods of time, perhaps permanently.

Travel can be stressful. Stresses can include:

• Rushing to catch your plane/train or ride.
• Being jostled in a crowd.
• Lifting, pulling or pushing baggage.
• Changes in climate and atmospheric pressure.
• Multiple risks for infection.

Avoid trauma to the body part

• Be careful not to bump your arm or leg that is at risk for developing lymphedema.
• Use light suitcases with wheels and avoid lifting cartons or luggage. You should not lift anything heavier than what you normally lift.
• Ask for help loading and unloading baggage.
• Use your unaffected arm to pull suitcases or carry hand luggage.
• Wear comfortable/loose clothing.

Limit the effect of prolonged lack of movement

• Get up and move around frequently.
• Perform exercises – (breathing exercise, shoulder rolls, elbow flexion and extension, wrist rotated, ball squeezes, marching, knee. bends, toe and heel raises, ankle rotation, self- MLD) during travel.

Avoid risk of infection

• Carry a back-up prescription for antibiotics.
• Use sunblock. Remember you can get sunburn through a compression garment .
• Use insect repellent and antifungal powder between toes and in skin folds.
• Vaccinations that are required should be received in the unaffected arm.
• Keep your feet covered, especially on the beach.

Limit the effect of atmospheric pressure changes using compression

• For those at risk for developing lymphedema, it is recommended that you take the above precautions and discuss further concerns with your therapist or provider.
• For those with occasional  swelling, it is recommended that you wear a compression sleeve or stocking when taking any airplane flights. Talk with your therapist regarding specific recommendations.
• For those with chronic lymphedema, it is recommended that you apply compression bandaging for all air travel. Bandages should be applied before air travel and should remain on for 1-2 hours after reaching your destination. If this is not possible, it is acceptable to wear a compression sleeve or stocking fit by a certified fitter. A trained therapist or certified fitter at a surgical supply or durable medical equipment provider can fit you with an appropriate garment. It is important that the compression not be too high; contact a trained professional to fit you with an appropriate compression sleeve or stocking.
• Use a compression garment that is in good condition- if you wear a garment you MUST use a gauntlet or glove as well. Wearing just a sleeve may cause hand swelling.
• Carry a back-up garment.

If you plan on traveling and have any concerns, you should consult with your therapist or provider. 

National Lymphedema Network on Air Travel

Link to Bob's Columns >

Bob Riter is the retired Executive Director of the Cancer Resource Center. His articles about living with cancer appear regularly in the Ithaca Journal and on OncoLink. He can be reached at bobriter@gmail.com.

A collection of Bob’s columns, When Your Life is Touched by Cancer: Practical Advice and Insights for Patients, Professionals, and Those Who Care, is available in bookstores nationwide and through online retailers such as Amazon and Barnes & Noble.

People are generally more worried about chemotherapy than any other type of cancer treatment. While it’s no one’s idea of fun, most people find that it’s more manageable than they had expected.

Good Information Sources

National Cancer Institute: Chemotherapy and You

Medline Plus: Chemotherapy

American Cancer Society: Chemotherapy

MacMillan Cancer Support (Great Britain): Chemotherapy Explained

What are Ports?

Ports are often implanted before chemotherapy. Here is a description from MacMillan Cancer Support (Great Britain).

“Healthy Diet Tips For Chemotherapy”

Courtesy of  ‘Breast Cancer Car Donations’

The newest generation of cancer treatments specifically target processes within cancer cells. These treatments generally have fewer side effects that traditional treatments like chemotherapy. More and more, cancer treatment will be personalized to each person’s specific biology.

Good Information Sources

National Cancer Institute: Biological Therapies

National Cancer Institute: Targeted Therapies

National Cancer Institute: Immunotherapy

CancerNet: Understanding Immunotherapy

MacMillan Cancer Support (Great Britain): Biological Therapies

Cancer Research UK: Biological Therapies

Surgery is often the initial form of treatment for most solid tumors. In some situations, chemotherapy and other treatments are performed before surgery. This is known as neoadjuvant therapy.

Good Sources of Information

Mayo Clinic: Cancer Surgery

American Cancer Society: Cancer Surgery

MacMillan Cancer Support (Great Britain): Cancer Surgery

Medline Plus: Videos of Surgical Procedures

Everyone worries about the potential side effects of cancer treatment. While some problems – like fatigue – are nearly universal, others vary widely from one person to the next. Here are some resources to help.

General Information

MacMillan Cancer Support (Great Britain): Cancer Symptoms and Side Effects
American Cancer Society: Managing Side Effects of Treatment
Breastcancer.org: Treatment Side Effects
American Occupational Therapy Association: The Role of Occupational Therapy in Oncology

Fatigue

Cleveland Clinic: Cancer-Related Fatigue
New York Times: The Many Shades of Cancer Fatigue
National Cancer Institute: Causes of Fatigue in Cancer Patient

Pain

ASCO: Managing Cancer-Related Pain

Hair Loss

Chemo and Hair Loss: What to Expect During Treatment (Mayo Clinic)
MacMillan Cancer Support (Great Britain): Coping with Hair Loss
BreastCancer.org: Hair, Skin and Nails

Weight Gain & Loss

MacMillan Cancer Support (Great Britain): Eating Well
Royal Marsden Hospital: Eating Well When You Have Cancer
Mayo Clinic: Tips to Make Food Tastier During Cancer Treatment
American Cancer Society: Nutrition for the Person with Cancer
University of Michigan: Managing Eating Problems

Cancer Related Diarrhea

Cancer-Related Diarrhea

Mouth Problems

MacMillan Cancer Support: Mouth Problems
Mayo Clinic: Mouth sores caused by cancer treatment

Neuropathy

American Cancer Society: Peripheral Neuropathy caused by Chemotherapy
MacMillan Cancer Support: Peripheral Neuropathy

Lymphedema

Medline Plus: Lymphedema
Breastcancer.org: Lymphedema
MacMillan Cancer Support: Lymphoedema
National Lymphedema Network

Life Following Active or Curative Treatment

You’ve been through surgery and many weeks, maybe months of chemotherapy and radiation. Your oncologist tells you that you have completed this phase of active or curative treatment.  You may have a follow-up appointment in 3-6 months or you may be transitioning to maintenance or prophylactic (preventative or protective) treatment.  Now what?  How do you put your life back in order, or in a new order?

Your recent world (and often the world of those closest to you) has been dominated by changes in lifestyle, doctor’s appointments, medications, not feeling like yourself physically or mentally and multiple therapies.  What has filled your time for so long is now coming to an end or at least is being significantly changed.  The medical support team you have come to know and depend on during your active treatment phase will no longer be a part of your life in the same way it has been.  What will it be like without them? How will you move forward with this new phase of your life? How will your life get back to normal or a “new normal?”

Many people diagnosed with cancer identify with the term survivor or survivorship to define their experience with cancer while many others do not.  The term “survivorship” has been defined in many different ways.  One definition explains survivorship as starting with a diagnosis of cancer and lasting throughout one’s entire experience with cancer, including all of the phases following active treatment. Another definition is having no sign of the disease following treatment.

Some individuals living with cancer choose not to use this term as they feel they have not “survived” cancer but rather are still dealing with it.  The key is that “survivorship” and dealing with life post curative treatment are unique to the individual and each person has to find his or her own way while navigating their own cancer experience.

Below are some resources to help you answer some common questions and address concerns that individuals often have in this phase of their experience with cancer.

Publications Covering Many Relevant Issues

Cancer.Net: ASCO answers Cancer Survivorship

Macmillan Cancer Support: What to do after Cancer Treatment Ends: 10 Top Tips

MD Anderson Cancer Center: Life After Cancer

National Coalition for Cancer Survivorship: Cancer Survival Toolbox

National Coalition for Cancer Survivorship: Cancer Survival Toolbox (Audio)

National Cancer Institute: Facing Forward – Life after Cancer Treatment

Common Questions

Cancer.Net: Expert Q&A – What Comes Next After Finishing Treatment

Cure: 10 Tips to Help You Navigate Life after Cancer

Livestrong: Late Effects of Cancer Treatment

Memorial Sloan Kettering Cancer Center: Resources for Survivors

Follow-up Care

National Cancer Institute: Follow-up Care after Cancer Treatment-Fact-Sheet

Cancer.Net: The Importance of Follow-up Care

Living with Advanced Cancer /Maintenance Treatment

American Cancer Society: Managing Cancer as a Chronic Illness

Cancer Council: Living with Advanced Cancer

Cancer Council: Information for Different Stages of Advanced Cancer

Body Issues

Dana-Farber Cancer Institute: Your Body after Treatment

Journey Forward: Body Changes and Intimacy

Fred Hutchinson Cancer Research Center: Questions about Body Image after Cancer

Livestrong: Adjusting to Body Changes

Dealing with your Emotions

Dana-Farber Cancer Institute: Your Emotions after Treatment

Mayo Clinic: Managing Your Emotions after Cancer Treatment

Cancer.Net: Coping with the Fear of Recurrence

Livestrong: What to Expect after Treatment

Relationships & Intimacy

Cancer Information and Support Network: Common Relationship Challenges

Returning to Work

Cancer + Careers: Cancer and Careers

National Cancer Institute: Going back to Work

American Cancer Society: Options for Returning back to Work

CancerCare: Knowing Your Legal Rights (Download MP3)

Financial Issues

OncoLink: Financial Concerns During and After Cancer Treatment

Cure: Coping with Cancer-Related Financial Toxicity

MD Anderson Cancer Center: Legal and Financial Impacts of Cancer