About The Wellness Community

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About TheWellness Community

• Founded in 1982, The Wellness Community is an
  international non-profit organization dedicated
  to providing free support, education and hope to
  people with cancer and their loved ones.

• Sample programs include
• Support Groups
• Physician Lectures

• Nutrition Programs
• Stress-Reduction Workshops

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Why We Are Here

• The Wellness Communitys Philosophy
• Patients who participate in their fight for
  recovery along with their healthcare team, rather
  than acting as hopeless, helpless, passive
  victims of the illness, will improve the quality
  of their lives and may enhance the possibility of
  recovery.
• - Dr. Harold Benjamin
• Founder of The Wellness Community

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Today we will discuss

• Understanding colon and rectum cancer
• Partnering with your medical team
• Making treatment decisions
• Managing side effects
• Coping with life after treatment

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• Understanding Colon
• and Rectal Cancers

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Understanding CRC

• Colorectal cancer (CRC) starts in the colon or
  rectum
• CRC is the 2nd most common form of cancer
  diagnosed in men and women in the US
• The number of people dying from CRC has declined
  over the past 20 years with better screening,
  diagnosis and treatments
• Screening for/removing polyps early, is the best
  way to cure CRC before problems develop
• I keep thinking to myself
• I may have cancer, but cancer doesnt have
  me!
• -Pam

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Signs and Symptoms

• Many people have no symptoms - If youve already
  been diagnosed, encourage those close to you to
  get screened
• Symptoms could include
• A change in bowel movements (diarrhea,
  constipation, never feeling relieved, narrower
  stools)
• Blood in the stool (dark red)
• Abdominal discomfort
• Weight loss for no known reason
• Constant fatigue
• Vomiting

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Diagnosing CRC

• A colonoscopy looks at the entire colon to
  identify problems
• Blood tests help to categorize your overall
  health
• a CEA test identifies tumor markers in the blood
• Imaging tests will identify if cancer exists in
  other parts of your body
• CAT scan, MRI, PET scan
• Surgery will remove tumor(s), tissue and lymph
  nodes which will be tested by a pathologist to
  determine the type and stage of cancer present

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Stages of CRC

• Three factors
• T Tumor
• How far does the tumor extend?
• N Node
• Are cancer cells in the lymph nodes?
• M Metastases
• Has the cancer spread to other organs?

• Four stages
• Stage I
• Spread to the middle layers of the colon or
  rectum
• Stage II (A B)
• Stage III (A,B or C)
• Stage IV
• Advanced disease, spread to other organs

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Stages of CRC
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• Partnering With
• Your Medical Team
• It is important that you feel respected and
  listened to. Work with a healthcare team you can
  trust.

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Your Medical Team

• Your choice of a medical team depends on
  preferences
• Recommendations
• Expertise
• Style of communication
• Location
• Type of institution (teaching hospital, cancer
  center)
• Insurance

• Successful treatment requires a team of CRC
  specialists
• Surgeon
• Medical Oncologist
• Radiation Oncologist
• Oncology Nurse Specialist
• Social Worker
• Nutritionist
• Patient Navigator

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Be Prepared for Appointments.

• Keep a list of questions/concerns to bring to
  appointments
• ALWAYS tell your doctor about side effects or
  symptoms that interfere with your life
• ALWAYS tell your doctor about other medications
  or herbs you may be taking
• Learn the best method of on-going communication
• Appointments, phone, even email
• Bring a friend or relative to take notes
• Ask for copies of your test results

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Consider a second opinion

• You have the right to get a second, and even a
  third, opinion
• It is very common and accepted
• Its never too late to get another opinion
• There is no one right way to treat CRC
• Talking with different experts can help you feel
  more confidence in your course of action
• A second opinion might introduce you to a
  clinical trial or targeted treatment you didnt
  know about

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• Making Treatment Decisions

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Goals of Treatment
Treatment is defined by stage and type of cancer
present

• Goals of Treatment
• Remove cancer cells
• Kill cancer cells
• Keep the cancer cells from returning

• Goals of Treatment for Advanced Disease
• Slow or stop the growth of cancer cells
• Manage quality of life concerns

Every person responds differently to treatment,
so communication is key!
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Types of Treatments

• Surgery
• Laparoscopy vs. open surgical resection
• Colostomy temporary or permanent
• Chemotherapy and combinations
• Adjuvant, neoadjuvant, and palliative
• Chemoradiation (rectal cancer)
• Targeted (or biologic) treatments
• EGFR inhibitors, VEGFr inhibitors
• Clinical trials
• New areas of research

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Targeted Therapies/Biologics

• Targeted therapies work through specific pathways
  involved in cancer growth to attack cancer cells
  directly
• EGFR inhibitors (i.e. Cetuximab and panitumumab)
  
• VEGFr inhibitors (i.e. Bevacizumab)
• Targeted therapies cause fewer side-effects since
  they attack only cancer cell, leaving normal
  cells and tissues unharmed
• Talk to your doctor about new treatments in
  development

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Clinical Trials

• Clinical trials study promising new treatments
• Every CRC treatment regimen that is now
  standard was first developed through a clinical
  trial
• Phases I-IV
• Participants are not guinea pigs all receive
  either the standard of care or the new treatment
  with known benefits and risks

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What AffectsTreatment Decisions?

• The type and stage of your disease
• Your age and overall health
• Other medical conditions
• Whether or not youve had cancer and/or cancer
  treatment in the past
• Your response to certain treatments
• Your willingness/ability to tolerate certain side
  effects

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MakingTreatment Decisions

• You usually have time to think about your options
  and ask questions.
• The ultimate question
• What will give me the greatest chance of cure or
  longer life, and at what price?
• - Wendy Schlessel Harpham,
  M.D.

In the Frankly Speaking About Colorectal Cancer
booklet, see more detailed information about
treatment options in Chapter 4.
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Follow-up Care
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• Managing Side Effects

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ManagingSide Effects

• You may not experience common side effects
• Ask about preventing side effects before
  treatment
• Having information about short and long term side
  effects before, during, and after cancer
  treatment will help you prepare
• Goal take control of side effects before they
  take control of you

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Side Effectsfrom Surgery

• Initial pain and risk of infections
• Scarring and adhesions
• Fecal incontinence
• Ostomy a procedure to make a new path for stool
• An ostomy pouch is adhered to your skin to
  collect waste
• For more information, see p.49 in the Frankly
  Speaking About Colorectal Cancer booklet

If I hadnt had a colostomy, I wouldnt have
lived. Its what you have to do to survive. It
doesnt limit me in any way, except for not
wearing extremely tight clothes that I wouldnt
wear anyway. - Pam
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Side Effectsfrom Chemotherapy

• Diarrhea
• Mouth sores
• Hand-foot syndrome
• Neuropathy

• High blood pressure
• Rash
• Bowel perforation
• Allergic reaction

The Frankly Speaking About Colorectal Cancer
booklet includes tips for managing these side
effects on pp. 50-56.
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Side Effectsfrom Radiation

• Burn-like skin irritations and a higher risk for
  infection
• Pain and swelling
• Scarring or blockage of areas around the pelvis
• Incontinence
• Inability to control urination and/or bowel
  movements
• Sexual side effects
• Dryness, discomfort, erectile dysfunction

Make sure to let the doctors know your comfort
zone. If youre experiencing pain, tell them how
intense it is, because if youre in pain, you
cant concentrate on the sickness and on getting
better. The doctors dont want us to be in pain,
if we dont have to be. - Ken
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ManagingBowel Issues

• Obstructions and/or perforations
• Caused by the cancer itself, or treatment
• Symptoms include abdominal pain, nausea and
  vomiting, bloating, inability to pass gas,
  constipation or diarrhea, loss of appetite
• Get suggestions from your medical team for diet
  and lifestyle changes to help lessen pain and
  motivate your digestive system

Ever since radiation Ive had adhesions with
partial blockage of the colon. It started 9
months after treatment Id get cramps and throw
up all of a sudden. Now I go to a massage
therapist and I havent had an attack for a few
months, so I think its helping. - Nancy
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• Coping with
• Life After Treatment

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Quality of Life

• A colorectal cancer diagnosis raises both
  physical and emotional issues to manage
• Feeling sad, alone, angry, anxious, overwhelmed
  or distressed is very common
• Know that it is possible to find a balance
  between medical concerns, relationships, work,
  finances, and other responsibilities
• Here are some suggestions

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Talking About CRC

• Keep communication open and honest
• Do not keep fears, embarrassment, worry to
  yourself
• CRC can be awkward to talk about
• Find people in a similar situation for support
• If you dont want to talk about it write it
  down
• Keep a journal and use it to share your emotions
  with loved ones, yourself or your doctor
• I know cancer can destroy some relationships
  because its such a burden. But if you have
  enough faith in each other and love for each
  other you can conquer anything.
• - Scott

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Are you FeelingDistressed?

• If you think you or someone you love is suffering
  from depression talk to your doctor, a social
  worker or professional counselor
• Some questions to ask yourself
• Do you cry often or uncontrollably?
• Have you lost interest in things that used to
  give you pleasure?
• Have you stopped looking forward to fun events
  and occasions?
• Are you eating and/or sleeping more or less than
  you used to?

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Find Support

• TWC research found that people in support groups
  report a decrease in depression, increased zest
  for life, and a new attitude toward their illness
• There are different types of support groups and
  counseling services available just ask
• Support groups can help you
• Learn from others with similar challenges
• Share concerns and learn coping strategies
• Feel less alone
• Manage side effects and anxiety
• Learn about resources

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Humor

• Sometimes the best way to cope with an intensely
  difficult situation is to find humor in it
• CRC can raise uncomfortable issues - joking
  doesnt mean you dont take it seriously
• Humor is a way to feel closer to someone else and
  a way to maintain hope
• When you have gas, the pouch puffs up. So we
  have a joke
• What do you call a person with a stoma who has
  gas? A pouch puffer. You have to burp it. I
  named my stoma baby, because it needs attention
  all the time.
• - Marilyn

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Laughter

• When my father woke up from his colon cancer
  surgery he groggily asked the nurse, Guess what
  I am now? A semi-colon!
• Colorectal Cancer Caregiver
• Humor is what gets us though. One day my husband
  left for work, and the next thing I know hes
  right back at the house. He said, I need to go
  to the bathroom. I said, See, if you were me,
  you could have a bowel movement and drive at the
  same time!
• Connie

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Sexuality

• Many people are reluctant to talk about problems
  with sexuality, including some healthcare
  professionals
• Remember you have the right to get all your
  questions answered and to get help

For suggestions on ways to bring up this topic,
see p. 65 in the Frankly Speaking About
Colorectal Cancer booklet
Because of my treatment I cant get an erection.
My wife and I talk about it and about other ways
to please each other, like just holding each
other and watching a good movie There are times
I want it, but I try to focus on being with my
wife in other ways and just being alive. - Ken
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Strategies forWellness

• Physical Activity elevates mood, combats
  fatigue, maintains function, promotes rest
• Healthy Foods maintains energy, strengthens
  immune system, avoids/limits symptoms, provides
  comfort
• Drink Plenty of Fluids avoids dehydration,
  promotes regularity, combats fatigue
• Pamper Yourself find time to relax, seek
  spirituality, enjoy each day
• Create a personalized care plan set goals, find
  resources, use support

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Managing Careerand Finances

• Finding balance is difficult but possible
• There are laws to protect patients against job
  loss
• There are organizations to help with finances
  (i.e.Patient Advocate Foundation)
• It is best to get your estate in order now
• I intend to be here for several years, but at
  the same time I realize that to be in control I
  have to make all my final arrangements. My entire
  estate is laid out in my will, and my bank is
  named the administrator. I find that in doing
  this, at this time, I now have peace and comfort
  with no anxiety.
• - George

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Fear ofRecurrence

• Be informed
• Talk about it with your medical team
• Allow yourself to feel up and downit is healthy
  to express negative emotions
• Be Patient Active take control of what you
  can, but know what you cant control
• Do not to let anxiety and fear prevent you from
  seeking medical care

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Survivorship

• Advances are being made, giving more patients the
  chance for a longer, better quality of life after
  diagnosis
• Doctors, nurses, social workers and other
  survivors can help patients and families cope
  with the diagnosis
• Emotional support through treatment and beyond is
  important seek-out support
• Try to live each day to the fullest!
• No matter how severe the symptoms and
  treatmentssurvival from day to day, week to
  week, and year to year constitutes an enormous
  personal and human triumph over what might have
  been. - A Cancer Survivors Almanac

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Resources

• C3 Colorectal Cancer Coalition
• 877-4CRC-111 www.FightColorectalCancer.org
• Colon Cancer Alliance
• 877-422-2030 www.ccalliance.org
• The Wellness Community
• 888-793-WELL www.thewellnesscommunity.org
• American Cancer Society
• 800-ACS-2345 www.cancer.org
• National Cancer Institute
• 800-4-CANCER www.cancer.gov

More resources can be found in the Frankly
Speaking About Colorectal Cancer booklet
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ResourcesGetting a Referral

• Oncologists
• People Living With Cancer (1-888-651-3038 or
  www.plwc.org)
• Colorectal Surgical Specialists
• American Society of Colon and Rectal Surgeons
  (1-800-791-0001 or www.fascrs.org under Patients
  and Consumers)
• Gastroenterologists
• American College of Gastroenterology
  (www.acg.gi.org under Patients)
• American Gastroenterological Association
  (www.gastro.org, under Patient Center)
• Cancer Centers
• National Cancer Institute (NCI) (1-800-4-CANCER
  or cancercenters.cancer.gov)

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Acknowledgments

• This program was created in partnership with
• and supported through a
• charitable contribution from