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Posted

Hi. I have just discovered that I have lung cancer. Not that it matters, but I quit smoking 40 years ago this June. A mass was discovered on my lung by means of an X-ray during a bout with bronchitis or pneumonia or whatever, followed up by a CT scan. 6 x 6 cm mass in central right lung, 2 x 1 in mediastinum, with lymphanopathies. Had bronchoscopy 4/4, pulmonologist unable to retrieve material. Will have needle biopsy on Thursday. Utterly terrified. Any prayers and support will be gratefully received.

Posted

You have definitely come to the right place. Even though you have seen the horrible statistics out there - this is a place you can find hope - and people who have been in the same terrified position you are in. Trust me - I remember how terrifying it was - and I can tell you that once you get the needle biopsy and then a treatment plan you will start to feel like you have some control back.

I would also add that another great place to visit is cancergrace.org - visit there and you will see questions and answers by long time survivors, advocates and oncologists - it is without a doubt a great resource.

I know your journey is just beginning - but check back there will be a lot of people that are here to lean on - let us know if you have any questions. I am gonna post another response that will contain a list of resources and questions that you may want to take with you to doctor's appointments. It is so very hard to pay attention and not get lost so I would absolutely suggest that you take a pad of paper to take notes on. And most importantly - ask here - someone will probably be able to help you.

Definitely prayers and virtual hugs going your way,

Annette

Posted

Disclaimer:

This information is for research purposes only and not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice

from your physician or another qualified health care provider. Please use caution when making any decision regarding your health and always discuss it first with you doctor.

U.S.NEWS & WORLD REPORT:

AMERICAN’S BEST HOSPITALS SEARCH 2009:

http://health.usnews.com/sections/health/best-hospitals

AMERICA’S BEST HOSPITALS 2009 SPECIALTY SEARCH FOR CANCER:

http://www.usnews.com/directories/hospi ... y+ihqcanc/

AMERICA’S BEST HEALTH PLANS HONOR ROLL FOR COMMERCIAL, MEDICARE AND MEDICARE PLANS:

http://health.usnews.com/articles/healt ... -roll.html

DISEASES & CONDITIONS:

http://health.usnews.com/sections/healt ... index.html

HEALTH ADVICE:

http://health.usnews.com/sections/healt ... index.html

HEALTHLINE DIRECTORY OF PRESCRIPTION DRUGS - A TO Z:

http://usnews.healthline.com/directory/drugs

FIND A THERAPIST:

http://therapists.psychologytoday.com/usnews/

FIND A HEALTH PROFESSIONAL:

http://healthprofs.com/usnews/

************

NCI: NATIONAL CANCER INSTITUTE

MAP OF NCI CANCER CENTER LOCATIONS:

http://cancercenters.cancer.gov/cancer_ ... nters.html

HOW TO FIND A CANCER TREATMENT TRIAL: A 10-STEP GUIDE:

http://www.cancer.gov/clinicaltrials/fi ... rial-guide

SEARCH FOR CLINICAL TRIALS:

http://www.cancer.gov/clinicaltrials/search

LUNG CANCER:

http://www.cancer.gov/cancertopics/types/lung

NON-SMALL CELL LUNG CANCER:

http://www.cancer.gov/cancertopics/pdq/ ... ng/patient

SMALL CELL LUNG CANCER:

http://www.cancer.gov/cancertopics/pdq/ ... ng/patient

DRUG DICTIONARY:

http://www.cancer.gov/drugdictionary

DICTIONARY OF CANCER TERMS:

http://www.cancer.gov/dictionary

NCI FACTSHEET:

http://www.cancer.gov/cancertopics/fact ... rt/hospice

BOOKLET / WHAT YOU NEED TO KNOW ABOUT LUNG CANCER:

http://www.cancer.gov/cancertopics/wyntk/lung/page1

************

NCCN: NATIONAL COMPREHENSIVE CANCER NETWORK

NOTE: CLINICAL PRACTICE GUIDELINES IN ONCOLOGY™, THE NCCN DRUGS AND BIOLOGICS COMPENDIUM™, AND THE NCCN CHEMOTHERAPY ORDER TEMPLATES™ REGISTRATION REQUIRED FOR ACCESS.

http://www.nccn.org/default.asp

CLINICAL TRIALS:

http://www.nccn.org/clinical_trials/default.asp

FOR PATIENTS:

http://www.nccn.org/patients/default.asp

************

ABOUT SCANS:

CT SCAN: (COMPUTED TOMOGRAPHY)

http://www.radiologyinfo.org/en/sitemap ... =ct&bhcp=1

MRI SCAN: (MAGNETIC RESONANCE IMAGING)

http://www.medicinenet.com/mri_scan/article.htm

BONE SCAN:

http://www.mayoclinic.com/health/bone-scan/ca00020

X-RAY: (RADIOGRAPHY)

http://www.radiologyinfo.org/en/sitemap ... modal=xray

PET SCAN: (POSITRON EMISSION TOMOGRAPHY)

http://www.radiologyinfo.org/en/info.cfm?pg=pet

RASOUND: (SONOGRAPHY)

http://www.radiologyinfo.org/en/sitemap ... m?modal=us

BONE DENSITY SCAN:

http://www.radiologyinfo.org/en/info.cfm?pg=dexa

RADIOFREQUENCY ABLATION OF LUNG TUMORS:

http://www.radiologyinfo.org/en/info.cfm?pg=rfalung

NEEDLE BIOPSY OF LUNG NODULES:

http://www.radiologyinfo.org/en/info.cfm?pg=nlungbiop

ABOUT LUNG CANCER:

http://www.radiologyinfo.org/en/info.cfm?pg=lungcancer

GLOSSARY:

http://www.radiologyinfo.org/en/glossar ... .cfm?pid=1

************

CHEMOTHERAPY:

LOW BLOOD COUNTS:

http://chemocare.com/managing/low_blood ... asp#lowred

CHEMOTHERAPY INFORMATION:

http://www.chemocare.com/whatis

CHEMOTHERAPY DRUGS - DRUG NAMES:

http://www.chemocare.com/bio

SIDE EFFECTS - SYMPTOMS & SOLUTIONS:

http://www.chemocare.com/managing

MANAGING EATING PROBLEMS:

http://www.chemocare.com/eatingwell

BEFORE AND AFTER CHEMO:

http://www.chemocare.com/lifeduring

COMPLEMENTARY MEDICINE:

http://www.chemocare.com/complementary_medicine.asp

************

RADIATION:

RADIATION THERAPY AND YOU: SUPPORT FOR PEOPLE WITH CANCER

http://www.cancer.gov/cancertopics/radi ... py-and-you

RADIATION THERAPY FOR CANCER: QUESTIONS AND ANSWERS

http://www.cancer.gov/cancertopics/fact ... /radiation

************

WOOKSHEETS: (FREE DOWNLOAD)

RADIATION THERAPY WORKSHEET TO TRACK SIDE EFFECTS:

http://www.cancer.org/docroot/mon/conte ... ffects.asp?

CHEMOTHERAPY WORKSHEET TO TRACK SIDE EFFECTS:

http://www.cancer.org/docroot/mon/conte ... ffects.asp?

INTERFERON/INTERLEUKIN WORKSHEET TO TRACK SIDE EFFECTS:

http://www.cancer.org/docroot/mon/conte ... ffects.asp?

PAIN DIARY:

http://www.cancer.org/docroot/mon/conte ... record.asp?

MY TO-DO LIST:

http://www.cancer.org/docroot/clp/clp_2 ... tearea=mon

MY LOVED ONE HAS CANCER: CAREGIVERS:

http://www.mylovedonehascancer.com/

LANCE ARMSTRONG FOUNDATION / SURVIVORSHIP WORKSHEETS:

http://www.livestrong.org/site/c.khlxk1 ... sheets.htm

MY TO-DO LIST:

http://office.microsoft.com/en-us/templ ... 1438521033

MEDICATION LOG:

http://office.microsoft.com/en-us/templ ... 1440991033

HEALTH WORKSHEETS:

http://www.opa.ca.gov/healthcare/resour ... heets.aspx

make the most of doctor visits:

http://www.opa.ca.gov/healthcare/_downl ... visits.pdf

MY HEALTH HISTORY:

http://www.opa.ca.gov/healthcare/_downl ... istory.pdf

CHOOSE A DOCTOR:

http://www.opa.ca.gov/healthcare/_downl ... doctor.pdf

CLINICAL TRIAL PATIENT WORKSHEET:

http://www.cancer.org/downloads/eto/cli ... ksheet.pdf

MY IMPORTANT CONTACTS:

http://www.chemotherapy.com/pdf/my_contacts.pdf

MY HEALTH AND TREATMENT HISTORY:

http://www.chemotherapy.com/pdf/health_treatment.pdf

MY CALENDAR;

http://www.chemotherapy.com/pdf/calendar.pdf

MY INSURANCE DISCUSSION RECORD:

http://www.chemotherapy.com/pdf/insurance_record.pdf

************

MISC:

LUNG CANCER LINKS:

http://www.lungcancerclaims.com/lungcan ... dsites.htm

CANCER & LUNG CANCER ORGANIZATIONS:

http://www.lungcanceronline.org/sites/cancerorgs.html

LUNG CANCER: ORGANIZATIONS, DIRECTORIES:

http://www.netwellness.org/healthtopics ... tegoryid=9

NATIONAL LUNG CANCER ORGANIZATIONS:

http://www.nationallungcancerpartnershi ... _resources

WEBSITES & ORGANIZATIONS:

http://www.lungcanceronline.org/sites/index.html

OTHER RESOURCES AND ORGANIZATIONS DEDICATED TO LUNG CANCER:

http://lungcancer.about.com/od/otherres ... cancer.htm

65 MATCHING ITEM(S) FOR LUNG CANCER:

http://www.healthywomen.org/resources/h ... lungcancer

LUNG CANCER INFORMATION AND RESOURCES:

http://brittanysbattle.org/lungcancerinfo.aspx

LUNG CANCER:

http://dir.yahoo.com/health/diseases_an ... ancer/?b=0

WEB RESOURCES AND ORGANIZATIONS:

http://www.chemotherapy.com/web_resourc ... es_org.jsp

DISEASE DIRECTORY : CANCER : LUNG:

http://www.diseasedirectory.net/cancer/ ... fault.aspx

ANNIEAPPLESEEDPROJECT:

http://www.annieappleseedproject.org/luncanadgrou.html

MEDICAL DICTIONARY MEDTERMS™:

http://www.medterms.com/script/main/hp.asp

DISEASES & CONDITIONS A-Z LIST:

http://www.medicinenet.com/diseases_and ... rticle.htm

PROCEDURES & TESTS A-Z LIST - A:

http://www.medicinenet.com/procedures_a ... lpha_a.htm

MEDICATION DISPOSAL: WHAT TO DO WITH OLD OR UNUSABLE MEDICATION

http://www.medicinenet.com/script/main/ ... ekey=85048

GETTING THE MOST OUT OF YOUR PHARMACY VISIT:

http://www.medicinenet.com/script/main/ ... ekey=19667

DANGERS OF MIXING MEDICATIONS:

http://www.medicinenet.com/script/main/ ... ekey=87059

LUNG CANCER THE FACTS: (BOOK)

http://books.google.com/books?id=qnc5w4 ... &resnum=15

LUNG CANCER: (BOOK)

http://books.google.com/books?id=j0565n ... &resnum=14

WITH EVERY BREATH: A LUNG CANCER GUIDEBOOK:

http://www.lungcancercap.org/lungcancer ... k/book.htm

NCCS: NATIONAL COALITION FOR CANCER SURVIVORSHIP / THE CANCER SURVIVAL TOOLBOX

http://www.canceradvocacy.org/toolbox

CURE MAGAZINE: FREE

http://www.curetoday.com

CURE: HELP FOR PATIENTS & GENERAL INFORMATION

http://www.curetoday.com/currentissue/p ... ients.html

CURE: FOR MORE GENERAL CANCER INFORMATION AND SUPPORT:

http://www.curetoday.com/toolbox.html

MEDICAL ILLUSTRATIONS GALLERY: LUNG CANCER

http://www.cancer.net/patient/library/m ... rtypeid=21

AWARENESS AND EDUCATION PROGRAMS:

http://www.biooncology.com/bioonc/profe ... es/index.m

FIVE WAYS TO HELP SOMEONE WITH LUNG CANCER:

http://cms.carepages.com/carepages/en/a ... _ways.html

TRAVELING TIPS FOR CANCER PATIENTS, CAREGIVERS:

http://www.cancerwise.org/may_2004/disp ... color=blue

LUNG CANCER GUIDE:

http://www.iaround.org

GET HELP - LUNG CANCER:

http://www.cancercare.org/get_help/help ... nosis=lung

HELPFUL LINKS:

http://www.gulfcoastcc.com/helpfullinks.htm

TIPS FOR THE CAREGIVER:

http://www.thefamilycaregiver.org/impro ... hgodvtfqza

SOME THOUGHTS FOR NEW CANCER PATIENTS AND CAREGIVERS:

http://www.theblackriver.net/mmsurvey/patientlist.html

LUNG CANCER:

http://www2.healthtalk.com/go/cancer/lu ... /resources

ONCONURSE: LUNG CANCER RESOURCES

http://www.onconurse.com/factsheets/lung_resource.html

ONCTALK / DR. (GRACE) WEST: GLOBAL RESOURCE FOR ADVANCING CANCER EDUCATION

http://cancergrace.org

A HANDBOOK FOR STAGING, IMAGING, AND LYMPH NODE CLASSIFICATION:

http://www.ctsnet.org/book/mountain/index.html

MEDICAL ENCYCLOPEDIA:

http://www.accessdata.fda.gov/scripts/cder/drugsatfda

THE MYTHS AND FACTS ABOUT LUNG CANCER:

http://www.centrastate.com/workfiles/on ... ooklet.pdf

THE MERCK MANUALS: ONLINE MEDICAL LIBRARY

http://www.merck.com/mmhe/index.html

R.A. BLOCH CANCER FOUNDATION, INC:

http://www.blochcancer.org

MESOTHELIOMA & LUNG CANCER:

http://www.mesothelioma-lung-cancer.org

COPING WITH LUNG CANCER / DEPRESSION AND ANXIETY:

http://lungcancercap.org/coping3.htm

A GUIDE TO THE WORLD’S BEST AND MOST POPULAR LUNG CANCER WEBSITES FOR INFORMATION AND SUPPORT:

http://bestcancersites.com

NATIONAL LIBRARY OF MEDICINE:

http://www.nlm.nih.gov

ARCR: AMERICAN ASSOCIATION FOR CANCER RESEARCH

http://www.aacr.org

LUNGEVITY FOUNDATION: NAMED ONE OF CHARITY NAVIGATOR'S TOP-TEN FASTEST GROWING CHARITIES, LUNGEVITY IS THE PREMIER GRANT-MAKING NONPROFIT ORGANIZATION FUNDING LUNG CANCER RESEARCH AND PROVIDING SUPPORT TO THE LUNG CANCER COMMUNITY.

http://www.lungevity.org

FREE LIVESTRONG SURVIVORSHIP NOTEBOOK:

http://www.livestrong.org/site/c.khlxk1 ... tebook.htm

BERNIE SIEGEL, MD: (MOTIVATIONAL / INSPIRATIONAL)

http://www.berniesiegelmd.com

************

GLOSSRAY:

LUNG CANCER GLOSSRAY:

http://www.medicinenet.com/lung_cancer/glossary.htm

CDC: LUNG CANCER GLOSSARY

http://www.cdc.gov/cancer/lung/glossary

GLOSSARY: PDF FROM

http://www.lungcancerguidebook.org/lung ... y_0605.pdf

GLOSSARY OF LUNG CANCER TERMS:

http://www.netwellness.org/healthtopics ... ossary.cfm

************

TARCEVA:

http://www.tarceva.com

http://www.tarceva.com/patient/index.jsp

http://www.tarceva.com/patient/caregiver/index.jsp

************

CLINICAL TRIALS:

http://www.cancer.gov/clinicaltrials

http://www.cancer.org/docroot/eto/eto_6.asp

http://www.centerwatch.com/patient/trials.html

************

LUNG CANCER TRIAL RESULTS:

http://www.cancer.gov/clinicaltrials/re ... any&page=1

************

LUNG CANCER ONLINE:

FINDING THE BEST MEDICAL CARE:

http://www.lungcanceronline.org/care/index.html

SERVICES & SUPPORT:

http://www.lungcanceronline.org/support/index.html

LUNG CANCER INFORMATION:

http://www.lungcanceronline.org/info/index.html

LUNG CANCER TREATMENT:

http://www.lungcanceronline.org/treatment/index.html

SYMPTOMS, SIDE EFFECTS & COMPLICATIONS:

http://www.lungcanceronline.org/effects/index.html

TESTS & PROCEDURES:

http://www.lungcanceronline.org/tests/index.html

SURVIVING LUNG CANCER:

http://www.lungcanceronline.org/surviving/index.html

WEBSITES & ORGANIZATIONS:

http://www.lungcanceronline.org/sites/index.html

RESEARCHING THE MEDICAL LITERATURE:

http://www.lungcanceronline.org/medlit/index.html

HEMATOLOGIC (BLOOD) EFFECTS:

http://www.lungcanceronline.org/effects ... fects.html

************

DRUG RESEARCH:

DRUG INFORMATION ONLINE:

http://www.drugs.com

DRUGDIGEST:

http://www.rxlist.com/script/main/hp.asp

RXLIST: (THE INTERNET DRUG INDEX)

http://www.drugdigest.org/dd/home

SAFE MEDICATION:

http://www.rxlist.com/script/main/hp.asp

PHARMACEUTICAL MANUFACTURER INFORMATION:

http://www.safemedication.com

DRUGS@FDA GLOSSARY OF TERMS:

http://www.drugs.com/manufacturers.html

FDA APPROVED DRUG PRODUCTS:

http://www.fda.gov/cder/drugsatfda/glossary.htm

FDA: LISTING OF APPROVED ONCOLOGY DRUGS WITH APPROVED INDICATIONS. U.S. FOOD AND DRUG ADMINISTRATION • CENTER FOR DRUG EVALUATION AND RESEARCH / LISTING OF APPROVED ONCOLOGY DRUGS WITH APPROVED INDICATIONS.

http://www.fda.gov/cder/cancer/druglistframe.htm

ACS: ACCORDING TO THE AMERICAN CANCER SOCIETY, THERE ARE 5 MAIN CATEGORIES OF CHEMOTHERAPY DRUGS THAT ARE USED TO FIGHT CANCER. THEY ARE:

HTTP://WWW.PARALLELJOURNEYSCANCER.COM/POC/DRUGS.HTML

************

CANCER & MEDICAL WEBSITES:

http://www.plwc.org/portal/site/plwc

http://www.cancerindex.org

http://www.cancerfacts.com

************

CAREGIVERS:

http://www.nfcacares.org

http://www.caregiving.org

http://www.4women.gov/faq/caregiver.htm

http://www.caregivers-usa.org

http://www.caregiver.com

http://www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp

http://www.familycaregiving101.org

http://www.bymyside.com/

http://www.chemotherapy.com/caregiver/f ... givers.jsp

************

HOSPICE:

FOR PATIENTS AND FAMILIES FACING LIFE-THREATENING ILLNESS:

http://www.hospicenet.org

HOSPICE FOUNDATION OF AMERICA:

http://www.hospicefoundation.org

NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION:

http://www.nhpco.org/templates/1/homepage.cfm

LOCATE A HOSPICE:

http://www.hospicedirectory.org

************

CANCER SURVIVOR STORIES:

http://www.cancercenter.com/cancer-survivors.cfm

http://www.ucdmc.ucdavis.edu/cancer/sur ... group.html

http://www.lungcanceralliance.org/facing/hope.html

http://www.lungcancer.org/patients/fs_pc_flc.htm

http://cancerguide.org/stories.html

http://www.mdanderson.org/patients_publ ... isplayfull

http://www.blochcancer.org/articles/letter.html

http://www.acscsn.org/talk_shows_and_st ... lores.html

************

GOOGLE: LUNG CANCER IN THE NEWS

http://www.google.com/top/health/condit ... ncer/lung/

************

SUPPORT GROUPS / NATIONAL TOLL - FREE NUMBERS & WEB SITES:

SUPPORT GROUPS:

http://www.cancerindex.org/clinks6a.htm

NATIONAL TOLL-FREE NUMBERS & WEB SITES:

http://www.nichcy.org/pubs/genresc/gr5.htm

TOLL FREE LIST:

http://www.advocacycenter.org/tollfree.htm

TOLL-FREE NUMBERS FOR HEALTH INFORMATION:

http://www.focusas.com/healthinfonumbers.htm

THE WELLNESS COMMUNITY: FREE CANCER SUPPORT GROUPS AND MORE

http://www.thewellnesscommunity.org

LUNG CANCER ALLIANCE:

http://www.alcase.org/facing/support_groups.html

THE CANCER INFORMATION NETWORK:

http://www.cancerlinksusa.com/support/index.asp

LIVING WITH IT:

http://www.livingwithit.org/lung/coping/groups.aspx

ASSOCIATION OF CANCER ONLINE RESOURCES:

http://listserv.acor.org/archives/lung-sclc.html

CANCER SUPPORT GROUPS:

http://www.weitzlux.com/asbestos/resear ... 28211.html

LUNG CANCER RESOURCES DIRECTORY:

http://www.cancerindex.org/clinks2l.htm

************

WRITING A FUND RAISING LETTER:

http://www.fundsraiser.com/dec07/fundra ... igest.html

http://www.southportlandrelay.org/fundr ... etters.pdf

http://www.theovernight.org/index.cfm?f ... 4ac563119d

http://www.fundraiserhelp.com/how-to-wr ... letter.htm

http://www.fundraiserinsight.org/articl ... -tips.html

http://www.komensacramento.org/rftc/sam ... etters.pdf

http://www.better-fundraising-ideas.com ... tters.html

http://www.writeexpress.com/effective-f ... etter.html

http://stepbystepfundraising.com/donati ... -template/

************

QUESTIONS TO ASK THE DOCTOR: (LUNG CANCER)

HTTP://WWW.CANCER.NET/PATIENT/CANCER+TYPES/LUNG+CANCER

REGULAR COMMUNICATION WITH YOUR DOCTOR IS IMPORTANT IN MAKING INFORMED DECISIONS ABOUT YOUR HEALTH CARE. CONSIDER ASKING THE FOLLOWING QUESTIONS OF YOUR DOCTOR:

FOR ALL PATIENTS WITH LUNG CANCER:

• WHAT TYPE OF LUNG CANCER DO I HAVE?

• WHAT IS THE STAGE OF MY LUNG CANCER? WHAT DOES THIS MEAN?

• SHOULD I SEE ANOTHER DOCTOR TO ASSIST IN MY CARE, SUCH AS A THORACIC SURGEON, RADIATION ONCOLOGIST, MEDICAL ONCOLOGIST, AND/OR PULMONOLOGIST? WHAT IS THE ROLE OF EACH DOCTOR IN MY CARE?

• DO I NEED ADDITIONAL SCANS OR BIOPSIES IN ORDER TO PLAN MY TREATMENT?

• CAN YOU EXPLAIN MY PATHOLOGY REPORT (LABORATORY TEST RESULTS) TO ME?

• WHAT IS THE GOAL OF MY TREATMENT?

• WHAT CLINICAL TRIALS ARE OPEN TO ME?

• WHAT ARE THE POSSIBLE SIDE EFFECTS OF THIS TREATMENT, BOTH IN THE SHORT TERM AND THE LONG TERM?

• HOW WILL THIS TREATMENT AFFECT MY DAILY LIFE? WILL I BE ABLE TO WORK, EXERCISE, AND PERFORM MY USUAL ACTIVITIES?

• IN ADDITION TO TREATING MY CANCER, WHAT CAN BE DONE TO TREAT MY SYMPTOMS?

• ARE THERE ANY OTHER TREATMENT OPTIONS AVAILABLE TO ME?

• WHAT SUPPORT SERVICES ARE AVAILABLE TO ME? TO MY FAMILY?

FOR PATIENTS WHO WILL HAVE SURGERY:

• WHAT TYPE OF SURGERY WILL I HAVE? WILL LYMPH NODES BE REMOVED?

• HOW LONG WILL THE OPERATION TAKE?

• HOW LONG WILL I BE IN THE HOSPITAL?

• CAN YOU DESCRIBE WHAT MY RECOVERY FROM SURGERY WILL BE LIKE?

FOR PATIENTS WHO ARE TO RECEIVE CHEMOTHERAPY AND TARGETED THERAPY:

• WHAT ARE THE NAMES OF THE DRUGS, AND HOW ARE THEY GIVEN?

• WHAT ARE THE SIDE EFFECTS OF EACH MEDICATION? WHAT SIDE EFFECTS OR PROBLEMS SHOULD I WATCH FOR?

• WHAT CAN BE DONE TO LESSEN THESE SIDE EFFECTS?

• HOW OFTEN WILL I NEED TO VISIT THE DOCTOR TO RECEIVE THE THERAPY, AND HOW LONG WILL EACH VISIT TAKE?

• WILL I BE ABLE TO GO TO AND RETURN FROM THIS TREATMENT ON MY OWN, OR SHOULD I ARRANGE TO HAVE ASSISTANCE?

FOR PATIENTS WHO ARE TO RECEIVE RADIATION THERAPY:

• HOW WILL MY TREATMENT BE PLANNED? WHAT TYPES OF SCANS WILL BE USED?

• WHERE WILL I RECEIVE RADIATION THERAPY?

• HOW OFTEN WILL I RECEIVE RADIATION THERAPY?

• HOW MUCH TIME WILL EACH TREATMENT TAKE?

• HOW MUCH OF THE NORMAL LUNG WILL BE INCLUDED IN THE RADIATION FIELD?

• IS IT POSSIBLE FOR ME TO RECEIVE CHEMOTHERAPY WITH MY RADIATION THERAPY? IF SO, WHAT ARE THE ADDED SIDE EFFECTS OF GIVING THE CHEMOTHERAPY AT THE SAME TIME, COMPARED WITH ONE AFTER ANOTHER?

• WILL I BE ABLE TO GO TO AND RETURN FROM THIS TREATMENT ON MY OWN, OR SHOULD I ARRANGE TO HAVE ASSISTANCE?

FOR PATIENTS CONSIDERING A CLINICAL TRIAL:

• WHAT ARE MY OPTIONS FOR STANDARD TREATMENT?

• WHAT OTHER TREATMENTS THROUGH CLINICAL TRIALS ARE AVAILABLE TO ME?

• HOW WILL MY EXPERIENCE DIFFER IF I ENROLL IN THIS CLINICAL TRIAL, AS OPPOSED TO STANDARD TREATMENT (DIFFERENT RISKS, EXTRA TESTS OR TIME COMMITMENT, SCHEDULE)?

• WHAT IS THE GOAL OF THIS CLINICAL TRIAL? IS THIS A PHASE I, II, OR III CLINICAL TRIAL? WHAT DOES THIS MEAN?

• WHERE WILL I RECEIVE THE CLINICAL TRIAL TREATMENT?

FOR PATIENTS WHO HAVE COMPLETED THEIR TREATMENT:

• WHAT ARE THE CHANCES THAT MY CANCER WILL RETURN?

• IS THERE ANYTHING MORE I CAN DO TO REDUCE THE CHANCE THAT MY CANCER WILL RETURN?

• WHAT FOLLOW-UP TESTS WILL I NEED AND HOW OFTEN WILL I NEED THEM?

• WHAT TESTS WILL I HAVE DURING MY FOLLOW-UP VISIT?

FOR PATIENTS WHO SMOKE:

• HOW CAN YOU HELP ME TO QUIT SMOKING

************

QUESTIONS TO ASK THE DOCTOR: (GENERAL)

HTTP://WWW.CANCER.NET/PATIENT/DIAGNOSIS ... THE+DOCTOR

THIS SECTION HAS BEEN REVIEWED AND APPROVED BY THE CANCER.NET EDITORIAL BOARD, 09/08

STUDIES SHOW THAT PEOPLE WITH CANCER WHO ARE FULLY INFORMED ABOUT THEIR DISEASE AND TREATMENT OPTIONS USUALLY TEND TO FARE BETTER AND EXPERIENCE FEWER SIDE EFFECTS THAN THOSE WHO SIMPLY FOLLOW DOCTORS' ORDERS. BEING INFORMED GIVES YOU SOME CONTROL OVER YOUR DISEASE AND MAY HELP YOUR EMOTIONAL WELL-BEING. SOME PEOPLE CAN FEEL OVERWHELMED BY TOO MUCH INFORMATION OR DO NOT WANT TO KNOW AS MANY DETAILS ABOUT THEIR CONDITION. IT IS IMPORTANT FOR YOU TO IDENTIFY HOW MUCH INFORMATION IS RIGHT FOR YOU.

GETTING ANSWERS TO YOUR QUESTIONS

YOUR DOCTOR SHOULD MAKE TIME TO ANSWER YOUR QUESTIONS AND EXPLAIN VARIOUS TREATMENT OPTIONS. THE FOLLOWING TIPS CAN HELP YOU COMMUNICATE BETTER WITH YOUR DOCTOR.

• TELL YOUR DOCTOR IF YOU ARE HAVING TROUBLE UNDERSTANDING AN EXPLANATION, DESCRIPTION, OR UNFAMILIAR MEDICAL WORDS. SOMETIMES, THE DOCTOR MAY BE ABLE TO DRAW A PICTURE OR GIVE AN EXAMPLE.

• CONSIDER WRITING YOUR QUESTIONS DOWN BEFORE YOUR APPOINTMENT, WHICH CAN LOWER YOUR LEVEL OF STRESS AND HELP MAKE THE MOST OF YOUR VISIT.

• BRING A NOTEBOOK OR A TAPE RECORDER TO THE APPOINTMENT. DURING THE APPOINTMENT, WRITE DOWN YOUR DOCTOR'S ANSWERS, OR ASK A FAMILY MEMBER OR FRIEND TO WRITE THEM DOWN FOR YOU. THIS WAY, YOU CAN READ OR LISTEN TO THE INFORMATION LATER.

• BE PATIENT. IT MAY TAKE A FEW MEETINGS WITH THE DOCTOR BEFORE YOU BEGIN TO UNDERSTAND EACH OTHER.

• ASK YOUR DOCTOR OR NURSE WHERE YOU CAN FIND PRINTED MATERIAL ABOUT YOUR CONDITION. MANY OFFICES HAVE THIS INFORMATION READILY AVAILABLE.

THE INTERNET CAN BE VERY HELPFUL FOR PEOPLE WHO ARE SEEKING INFORMATION ABOUT THEIR TYPE OF CANCER, OR THOSE WHO ARE MAKING DECISIONS ABOUT THEIR TREATMENT. HOWEVER, IT IS IMPORTANT TO CONSIDER THE REPUTATION OF THE ORGANIZATION POSTING INFORMATION, AS NOT ALL INFORMATION ON THE INTERNET IS ACCURATE. LIKE CANCER INFORMATION FOUND IN BOOKS, MAGAZINES, OR NEWSPAPER ARTICLES, INFORMATION ON THE INTERNET SHOULD BE USED FOR INFORMATIONAL PURPOSES ONLY. IF YOU HAVE QUESTIONS ABOUT THE INFORMATION YOU FIND, PLEASE TALK WITH YOUR DOCTOR. LEARN MORE ABOUT EVALUATING CANCER INFORMATION ON THE INTERNET.

• IF YOU ARE INTERESTED IN SEEKING A SECOND OPINION, LET YOUR DOCTOR KNOW. MOST DOCTORS FULLY UNDERSTAND THE VALUE OF A SECOND OPINION AND ARE NOT OFFENDED WHEN PATIENTS SEEK ONE. THEY MAY EVEN BE ABLE TO SUGGEST ANOTHER DOCTOR.

SUGGESTED QUESTIONS TO ASK THE DOCTOR

AN IMPORTANT PART OF MANAGING YOUR CARE IS KNOWING WHAT QUESTIONS TO ASK OF YOUR DOCTOR. EVERY PERSON'S NEEDS ARE UNIQUE, AND YOUR QUESTIONS WILL CHANGE DURING THE DIFFERENT PHASES OF YOUR DISEASE.

BELOW ARE SOME EXAMPLES OF THE TYPES OF QUESTIONS YOU MAY WANT TO ASK YOUR DOCTOR.

GENERAL INFORMATION

• WHAT TYPE OF CANCER DO I HAVE?

• WHERE EXACTLY IS IT LOCATED?

• WHAT ARE THE RISK FACTORS FOR THIS DISEASE?

• IS THIS TYPE OF CANCER CAUSED BY GENETIC FACTORS? ARE OTHER MEMBERS OF MY FAMILY AT RISK?

• HOW MANY PEOPLE ARE DIAGNOSED WITH THIS TYPE OF CANCER EACH YEAR?

• WHAT LIFESTYLE CHANGES (DIET, EXERCISE, REST) DO YOU RECOMMEND I MAKE TO STAY AS HEALTHY AS POSSIBLE BEFORE, DURING, AND AFTER TREATMENT?

• WHERE CAN I FIND MORE INFORMATION ABOUT MY CANCER?

SYMPTOMS

• WHAT ARE SOME COMMON SYMPTOMS OF THIS TYPE OF CANCER?

• HOW CAN I AVOID SYMPTOMS AND/OR REDUCE THEIR EFFECT ON MY DAILY ACTIVITIES?

• IS THERE ANYTHING THAT CAN BE DONE TO MAKE MY SYMPTOMS BETTER?

• ARE THERE ACTIVITIES THAT MAY MAKE THE SYMPTOMS WORSE?

• IF NEW SYMPTOMS ARISE OR EXISTING SYMPTOMS WORSEN, WHAT SHOULD I DO?

DIAGNOSIS

• WHAT DIAGNOSTIC TESTS OR PROCEDURES ARE NECESSARY? HOW OFTEN?

• WHAT WILL THESE TESTS TELL US ABOUT MY CANCER?

• HOW CAN I PREPARE MYSELF FOR EACH TEST OR PROCEDURE?

• WHERE DO I NEED TO GO TO HAVE THIS TEST?

•WHEN WILL I GET THE RESULTS? HOW WILL I GET THE RESULTS (OVER THE PHONE, AT THE NEXT APPOINTMENT, ETC.)?

• CAN YOU EXPLAIN MY PATHOLOGY REPORT (LABORATORY TEST RESULTS) TO ME?

• IF I SEEK A SECOND OPINION, WILL I HAVE TO REPEAT ANY TESTS OR PROCEDURES?

• HOW MUCH INFORMATION CONCERNING MY DIAGNOSIS SHOULD I SHARE, AND AT WHAT TIME, WITH MY FRIENDS AND LOVED ONES?

STAGING

• WHAT IS THE STAGE OF MY CANCER? WHAT DOES THIS MEAN?

• HAS CANCER SPREAD TO MY LYMPH NODES OR ANYWHERE ELSE?

• HOW IS STAGING USED TO DETERMINE CANCER TREATMENT?

• WHAT IS MY PROGNOSIS (CHANCE OF RECOVERY)?

TREATMENT

KEEP IN MIND THAT ALL TREATMENTS OFFER RISKS AND BENEFITS. DISCUSS THESE WITH YOUR DOCTOR AND CONSIDER YOUR MEDICAL HISTORY AND CURRENT CONDITION IN DECIDING WHETHER THE TREATMENT APPROACH IS APPROPRIATE FOR YOU.

• WHAT ARE MY TREATMENT OPTIONS?

• WHAT IS THE GOAL OF EACH TREATMENT?

• WHAT CLINICAL TRIALS (RESEARCH STUDIES INVOLVING PEOPLE) ARE OPEN TO ME?

• WHAT TREATMENT DO YOU RECOMMEND? WHY?

• HOW MUCH EXPERIENCE DO YOU HAVE TREATING THIS TYPE OF CANCER?

• HOW WILL THIS TREATMENT BENEFIT ME?

• WILL I NEED TO BE HOSPITALIZED FOR TREATMENT, OR IS THIS TREATMENT DONE IN AN OUTPATIENT SETTING?

• WHAT IS THE EXPECTED TIMELINE FOR MY TREATMENT PLAN? DO I NEED TO BE TREATED RIGHT AWAY?

• HOW WILL THIS TREATMENT AFFECT MY DAILY LIFE? WILL I BE ABLE TO WORK, EXERCISE, AND PERFORM MY USUAL ACTIVITIES?

• WHAT ARE THE SHORT-TERM SIDE EFFECTS OF THIS TREATMENT?

• WHAT LONG-TERM SIDE EFFECTS MAY BE ASSOCIATED WITH THIS CANCER TREATMENT?

• WILL THIS TREATMENT AFFECT MY ABILITY TO BECOME PREGNANT OR HAVE CHILDREN?

• BESIDES TREATING CANCER, WHAT CAN BE DONE TO TREAT MY SYMPTOMS?

• HOW CAN I KEEP MYSELF AS HEALTHY AS POSSIBLE DURING TREATMENT?

CLINICAL TRIALS

• WHAT ARE CLINICAL TRIALS?

• HOW DO CLINICAL TRIALS HELP PEOPLE WITH CANCER?

• IS THIS A TREATMENT OPTION FOR ME?

• HOW WILL I BE MONITORED WHILE PARTICIPATING IN A CLINICAL TRIAL?

• WHAT HAPPENS IF MY DISEASE GETS WORSE OR IS NOT TREATED EFFECTIVELY WHILE PARTICIPATING IN A CLINICAL TRIAL?

• HOW IS TREATMENT PAID FOR IF I PARTICIPATE IN A CLINICAL TRIAL?

• WHERE CAN I GET MORE INFORMATION ABOUT CLINICAL TRIALS?

FIND MORE QUESTIONS TO ASK THE RESEARCH TEAM WHEN CONSIDERING A CLINICAL TRIAL.

SUPPORT

• WHAT SUPPORT SERVICES ARE AVAILABLE TO ME? TO MY FAMILY?

• WHOM SHOULD I CALL WITH QUESTIONS OR CONCERNS DURING NON-BUSINESS HOURS?

• MAY I CONTACT YOU OR THE NURSE TO TALK ABOUT ADDITIONAL INFORMATION I FIND?

• CAN YOU RECOMMEND A SOCIAL WORKER TO HELP LOCATE SUPPORT SERVICES?

• WHERE CAN I FIND RESOURCES FOR CHILDREN? FOR TEENAGERS? FOR YOUNG ADULTS?

• WHERE CAN I FIND HELP WITH MANAGING THE COST OF MY CANCER CARE?

• WHO HANDLES HEALTH INSURANCE CONCERNS IN YOUR OFFICE?

FOLLOW-UP CARE

• WHAT FOLLOW-UP TESTS DO I NEED, AND HOW OFTEN WILL I NEED THEM?

• IS THERE ANYTHING ELSE I SHOULD BE ASKING?

NOTE: SOME OF THESE QUESTIONS WERE DEVELOPED IN COLLABORATION WITH CANCERCARE, A NATIONAL CANCER PATIENT SERVICE ORGANIZATION. IN ADDITION, SEE SPECIFIC QUESTIONS IN THE "QUESTIONS TO ASK THE DOCTOR" SECTION OF EACH CANCER TYPE.

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M.D. ANDERSON: QUESTIONS TO ASK ABOUT A CLINICAL TRIAL:

HTTP://WWW.MDANDERSON.ORG/PATIENTS_PUBL ... ISPLAYFULL

PAGE 1 OF 2

NOTE: © 2006 THE UNIVERSITY OF TEXAS M. D. ANDERSON CANCER CENTER, REVISED 04/25/06 PATIENT EDUCATION OFFICE AS THE PATIENT, IT IS YOUR DECISION WHETHER TO PARTICIPATE IN A CLINICAL TRIAL. SINCE IT IS YOUR CHOICE, ASK AS MANY QUESTIONS AS YOU NEED TO ASK, AND CONTINUE TO ASK QUESTIONS UNTIL THE ANSWERS ARE CLEARLY UNDERSTANDABLE TO YOU. SOME EXAMPLES OF QUESTIONS YOU SHOULD ASK ABOUT A CLINICAL TRIAL INCLUDE:

TREATMENT-SPECIFIC QUESTIONS

• WHAT IS MY PROGNOSIS? (YOUR PROGNOSIS IS WHAT THE DOCTOR THINKS WILL HAPPEN WITH YOUR CANCER – YOUR CHANCE OF RECOVERY, THE EXPECTED COURSE OF THE CANCER, OR THE LENGTH OF TIME YOU ARE SICK.)

• WHAT ARE MY TREATMENT OPTIONS?

• HOW WOULD THE STANDARD TREATMENT AFFECT MY PROGNOSIS?

• WHAT PHASE IS THE CLINICAL TRIAL?

• WHAT IS THE PURPOSE OF THE CLINICAL TRIAL?

• WHY DO RESEARCHERS BELIEVE THE NEW TREATMENT BEING TESTED MAY BE EFFECTIVE? HAS IT BEEN TESTED BEFORE? HAS ANYTHING BEEN PUBLISHED ABOUT THIS TREATMENT? IF SO, BY WHOM?

• HOW MIGHT THE CLINICAL TRIAL AFFECT MY PROGNOSIS?

• WHAT ARE THE POSSIBLE SHORT-TERM AND LONG-TERM RISKS AND/OR SIDE EFFECTS?

• HOW DO THE POSSIBLE RISKS, SIDE EFFECTS AND BENEFITS IN THE CLINICAL TRIAL COMPARE WITH STANDARD

TREATMENT?

• HOW OFTEN AND FOR HOW LONG WOULD I RECEIVE TREATMENT?

• WHO WOULD BE IN CHARGE OF MY CARE?

• WHO WOULD BE MY MAIN CONTACT IF I HAVE ANY PROBLEMS, QUESTIONS OR AN EMERGENCY?

• HOW LONG WOULD I NEED TO REMAIN IN THE CLINICAL TRIAL?

• WOULD THERE BE ANY FOLLOW-UP AFTER THE CLINICAL TRIAL?

LOGISTICAL QUESTIONS

• WOULD I HAVE TO COME TO M. D. ANDERSON FOR ALL TREATMENTS, TESTS AND PROCEDURES? HOW OFTEN WOULD I HAVE TO COME? HOW DOES THIS COMPARE WITH STANDARD TREATMENT?

• WHERE WOULD I RECEIVE TREATMENT?

• HOW LONG WOULD EACH TREATMENT APPOINTMENT LAST, INCLUDING PRETREATMENTS?

• WHAT WOULD I NEED TO DO AS A PARTICIPANT IN THE TRIAL?

• WOULD I BE RESPONSIBLE FOR ADDITIONAL COSTS OF TESTS OR TRAVEL?

EMOTIONAL AND RELATIONSHIP NEEDS QUESTIONS

• HOW WOULD THE CLINICAL TRIAL CHANGE OR AFFECT MY DAILY ACTIVITIES?

• CAN YOU PUT ME IN TOUCH WITH OTHER PEOPLE WHO ARE IN THE CLINICAL TRIAL?

• CAN YOU PUT ME IN TOUCH WITH SUPPORT SERVICES IF I NEED THEM?

M.D. ANDERSON: QUESTIONS TO ASK ABOUT A CLINICAL TRIAL:

QUESTIONS TO ASK ABOUT A CLINICAL TRIAL

PAGE 2 OF 2

NOTE: © 2006 THE UNIVERSITY OF TEXAS M. D. ANDERSON CANCER CENTER, REVISED 04/25/06 PATIENT EDUCATION OFFICE DECISION-MAKING SUGGESTIONS AFTER DISCUSSING QUESTIONS WITH THE DOCTOR AND/OR NURSE, TAKE TIME TO CONSIDER YOUR OPTIONS SO THAT YOU FEEL COMFORTABLE WITH YOUR ECISION. SOME SUGGESTIONS TO CONSIDER WHEN YOU ARE DECIDING ABOUT A CLINICAL TRIAL INCLUDE:

• LEARN AS MUCH AS YOU CAN.

•TALK TO YOUR DOCTOR OR NURSE.

•GO TO THE LEARNING CENTER AT M. D. ANDERSON. THE LEARNING CENTER IS LOCATED IN THE

MAIN BUILDING AND THE AMBULATORY CLINICAL BUILDING.

• LIST THE PROS AND CONS OF YOUR OPTIONS.

• DETERMINE BENEFITS AND RISKS THAT ARE MOST IMPORTANT TO YOU. IS IT LIKELY THAT THESE BENEFITS

AND RISKS WILL HAPPEN?

• GET YOUR QUESTIONS ANSWERED.

• KEEP A LIST OF ALL OF YOUR QUESTIONS AND ANSWERS, AND CONTINUE TO ADD QUESTIONS TO YOUR LIST.

• TAKE YOUR QUESTIONS TO YOUR DOCTOR. MAKE SURE YOU GET AN ANSWER FOR EACH QUESTION FROM

YOUR DOCTOR OR NURSE.

• DEFINE YOUR PRIORITIES AND YOUR ROLE IN YOUR FAMILY OR COMMUNITY.

• WHAT OR WHO IS MOST IMPORTANT TO YOU?

•CONSIDER MAKING A DECISION THAT HELPS YOU CONTINUE DOING WHAT IS MOST IMPORTANT TO YOU (BEING A PARENT, WORKING AS AN EMPLOYEE, BEING A FRIEND, ETC.).

• TALK TO YOUR FAMILY AND FRIENDS.

•IS IT IMPORTANT FOR YOU TO DO WHAT YOUR FAMILY THINKS IS BEST?

•ASK OPINIONS OF PEOPLE YOU TRUST.

• CONSIDER PRACTICAL ISSUES.

• DETERMINE TRAVEL TIME TO MEET YOUR APPOINTMENTS (ESPECIALLY IF YOU LIVE OUTSIDE OF HOUSTON).

• IF YOU WOULD NEED TO COME TO HOUSTON OFTEN, WOULD SOMEONE BE ABLE TO COME WITH YOU?

• WOULD IT BE DIFFICULT FOR YOU TO COMPLETE ALL THAT YOU ARE RESPONSIBLE FOR IN THE CLINICAL

TRIAL?

•WOULD YOU DISLIKE HAVING TO COMPLETE A PATIENT DIARY IF ONE IS REQUIRED? CONSIDER THE TIME COMMITMENT TO PARTICIPATE IN THE TRIAL.

• THINK ABOUT HOW PARTICIPATING IN A CLINICAL TRIAL WOULD MAKE YOU FEEL.

• WHAT DECISION WOULD GIVE YOU THE LEAST AMOUNT OF STRESS?

• IS IT IMPORTANT TO YOU TO TRY ANYTHING THAT IS NEW IF YOU QUALIFY?

WHATEVER DECISION YOU MAKE, YOU HAVE THE RIGHT TO RECEIVE THE BEST CARE AVAILABLE. YOUR RELATIONSHIP WITH YOUR DOCTOR WILL NOT BE CHANGED BY YOUR DECISION.

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LUNG CANCER ALLIANCE:

HTTP://WWW.LUNGCANCERALLIANCE.ORG/FACIN ... TIONS.HTML

NOTE: BEFORE YOU JOIN A CLINICAL TRIAL, TALK WITH YOUR HEALTHCARE PROVIDERS ABOUT THE SPECIFICS OF THE TRIAL. YOU MAY ALSO WANT TO TALK WITH A RESEARCHER WHO IS ADMINISTERING THE TRIAL BEFORE YOU MAKE YOUR DECISION.

ASK QUESTIONS SUCH AS:

• WHAT DOES THE TRIAL HOPE TO ACCOMPLISH?

• WHAT SIDE EFFECTS MIGHT I EXPERIENCE? ARE THESE WORSE THAN THOSE I MIGHT EXPERIENCE WITH STANDARD TREATMENT?

• WHO IS SPONSORING THE TRIAL?

• WHAT SHOULD I EXPECT IF I AM IN THE TRIAL? WHAT SHOULD I EXPECT IF I AM NOT IN THE TRIAL?

• WHAT ARE THE POSSIBLE BENEFITS TO ME AND MY FAMILY IF I GO INTO THE TRIAL?

• WILL I HAVE TO PAY FOR THE TREATMENT? WILL ANY OF THE TREATMENT BE FREE?

• WILL JOINING A TRIAL KEEP ME FROM BEING TREATED WITH OTHER THERAPIES, EITHER NOW OR LATER?

• WHOM CAN I CALL IF THERE ARE PROBLEMS WHILE I AM IN THE TRIAL? WHAT PHONE NUMBER SHOULD I CALL IN THE EVENING OR ON WEEKENDS?

BE AWARE THAT SOME HEALTHCARE PROVIDERS ARE RELUCTANT TO HAVE THEIR PATIENTS PARTICIPATE IN CLINICAL TRIALS. THIS MAY BE DUE TO ANY NUMBER OF REASONS, INCLUDING:

• SOME HEALTHCARE PROVIDERS MAY BE GENERALLY CONCERNED ABOUT THEIR PATIENTS PARTICIPATING IN MEDICAL RESEARCH

• SOME MAY BE CONCERNED THAT THEIR PATIENT'S PARTICIPATION IN A CLINICAL TRIAL WILL RESULT IN MORE WORK FOR THE PROFESSIONALS AND THAT THEIR TIME IS ALREADY VERY LIMITED

• OTHERS MAY WORRY THAT PATIENTS CANNOT WITHSTAND THE MORE FREQUENT OFFICE VISITS THAT MIGHT BE REQUIRED

• STILL OTHERS MAY BELIEVE THAT A STANDARD TREATMENT REGIMEN WILL BE BEST

THE INFORMATION PROVIDED ABOUT A TRIAL INCLUDES A LIST OF RESEARCHERS AND INFORMATION ON HOW TO CONTACT THEM

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CHEMOTHERAPY SURVIVAL TIPS:

HTTP://WWW.CANCER-ROADMAP.COM/CHEMOTHER ... MENTS.HTML

I NEVER LOOKED FORWARD TO CHEMOTHERAPY TREATMENTS, BUT I DID FIND WAYS TO MAKE THEM A LITTLE MORE BEARABLE. HERE ARE MY CHEMOTHERAPY SURVIVAL TIPS:

SINCE YOU'RE GOING TO BE DOING A LOT OF SITTING (IN THE WAITING ROOM BEFORE THE TREATMENT AND IN A CHAIR DURING THE ACTUAL TREATMENT), COME PREPARED. BRING BOOKS, MAGAZINES, YOUR JOURNAL, WHATEVER. MANY TREATMENT FACILITIES HAVE TVS IN THEM, BUT YOU NEVER KNOW WHAT THE OTHER PEOPLE THERE WILL BE WATCHING - IF YOU'RE NOT A BIG FAN OF FULL HOUSE RERUNS, YOU'LL BE GLAD TO HAVE SOMETHING ELSE TO KEEP YOU OCCUPIED DURING THE TREATMENT.

ON THE SAME TOKEN, YOU MAY GET LUCKY AND EITHER HAVE YOUR OWN TREATMENT ROOM WITH A TV OR BE THE FIRST ONE IN THE ROOM AND GET TO DECIDE WHAT CHANNEL TO WATCH. I FELL IN LOVE WITH A SHOW CALLED "CASH CAB" ON THE DISCOVERY CHANNEL WHILE I WAS GOING THROUGH CHEMO TREATMENTS. I ALWAYS GOT SO EXCITED WHEN I GOT TO WATCH CASH CAB!

BRING SOMEONE WITH YOU TO THE TREATMENT - AND DON'T THINK IT ALWAYS HAS TO BE THE SAME PERSON. MY MOM AND BOYFRIEND CAME WITH ME TO THE FIRST COUPLE OF TREATMENTS, BUT SINCE I WAS ALREADY SPENDING A LOT OF TIME WITH BOTH OF THEM EACH AND EVERY DAY, WE DIDN'T HAVE A WHOLE LOT TO TALK ABOUT TO PASS THE TIME DURING THE TREATMENT.

FOR THE REST OF MY TREATMENTS, I INVITED OTHER PEOPLE TO COME ALONG WITH ME TO THE TREATMENTS - CLOSE FRIENDS, MY AUNT, MY SISTER. I REALLY ENJOYED HAVING THEM COME ALONG BECAUSE:

I DIDN'T SEE THESE PEOPLE ON AN EVERYDAY BASIS SO WE HAD THINGS TO TALK ABOUT TO PASS THE TIME.

THIS GAVE THEM THE OPPORTUNITY TO DO SOMETHING TO SUPPORT ME. PEOPLE ARE ALWAYS ASKING IF THERE'S ANY WAY THEY CAN HELP YOU WHEN YOU HAVE CANCER - YOU MIGHT AS WELL TAKE SOME OF THEM UP ON THEIR OFFERS!

A WORD OF WARNING ABOUT THE PEOPLE YOU BRING ALONG FOR YOUR CHEMOTHERAPY TREATMENT: MAKE SURE BOTH YOU AND THE PERSON YOU WANT TO BRING ARE COMFORTABLE WITH THE NOTION THAT THERE'S A GOOD CHANCE YOU MAY "GET SICK" DURING THE TREATMENT. YOU MAY OR YOU MAY NOT, BUT IT'S BEST TO BE PREPARED - THERE ARE SOME PEOPLE THAT JUST CAN'T STOMACH SEEING SOMEONE ELSE LOSE THEIR LUNCH.

WHAT CAN I DO TO MAKE THE CHEMOTHERAPY VISIT MORE PLEASANT;

HTTP://WWW.ONCOLINK.ORG/TREATMENT/ARTIC ... S=11&ID=70

BRING READING MATERIALS, CRAFTS (NEEDLEPOINT, KNITTING, DRAWING MATERIALS), CD PLAYER OR RADIO WITH HEADPHONES, AND OTHER ITEMS THAT CAN HELP PASS THE TIME. SOME PATIENTS GET A METAL TASTE IN THEIR MOUTH AS A RESULT OF THE CHEMOTHERAPY; MINTS OR MINT-FLAVORED GUM CAN HELP ELIMINATE THIS TASTE. YOU MAY ALSO WANT TO BRING SMALL PACKETS OF CRACKERS OR COOKIES, DEPENDING ON THE LENGTH OF YOUR VISIT. A FAMILY MEMBERS OR FRIEND IS USUALLY WELCOME. IT IS HELPFUL TO HAVE A FRIEND OR FAMILY MEMBER DRIVE YOU TO AND FROM TREATMENT IN CASE YOU ARE NOT FEELING WELL. GETTING TO KNOW THE OTHER PATIENTS AND FAMILIES WHO ARE ALSO GOING THROUGH CHEMOTHERAPY CAN BE A VERY POSITIVE EXPERIENCE.

PATIENT TIPS: TIPS THAT MAY HELP DURING CHEMOTHERAPY TREATMEN:

HTTP://WWW.SANCUSO.COM/PAT/STORIES/PATIENTTIPS.HTML

FOR MANY PEOPLE GOING THROUGH TREATMENT, THE ABILITY TO LISTEN TO SIMILAR STORIES CAN BE A HUGE HELP. THERE’S NO REASON TO GO IT ALONE. SUPPORT ONE ANOTHER AND KNOW THAT YOU HAVE THE UNDERSTANDING OF OTHERS WHO ARE FACING A SIMILAR JOURNEY.

HERE ARE A FEW TIPS THAT MAY WORK FOR YOU

UNSCENTED PRODUCTS:

SOMETIMES WHEN YOU’RE GOING THROUGH CHEMO, YOU CAN GET REALLY SENSITIVE TO CERTAIN SMELLS AND SCENTS, EVEN IF THEY NEVER BOTHERED YOU BEFORE. YOU CAN STOP WEARING YOUR PERFUME OR COLOGNE, THAT’S EASY. BUT THERE’S ALSO YOUR DEODORANT, SHAMPOO, AND BODY LOTION, ETC. BEFORE YOU START CHEMO, YOU MIGHT WANT TO CHANGE TO AN UNSCENTED BRAND. IT MAY HELP.—TESS

THIRST:

WHEN YOU NEED FLUIDS, BUT AREN’T IN THE MOOD FOR DRINKING LIQUIDS, POPSICLES MAKE A NICE TREAT, ESPECIALLY WHEN YOU HAVE DRY MOUTH. CHOOSE SUGARLESS IF THE REGULAR ONES ARE TOO SWEET, OR PICK UP THE 100% JUICE KINDS. PLUS, THEY’RE FUN TO EAT.—ROB

SOFT STUFF:

BRING YOUR OWN SOFT THINGS TO YOUR CHEMO TREATMENT, SUCH AS TISSUES WITH LOTION, A NICE BLANKET OR PILLOW, A WOOLLY SCARF OR FAVORITE SOFT SWEATER.—JULIE

TEETH, MOUTH, AND TONGUE:

DURING CHEMO, IT’S A GOOD IDEA TO BRUSH YOUR TEETH AND YOUR TONGUE MORE THAN YOU MIGHT DO NORMALLY. BECAUSE OF THE TREATMENT, ALL SORTS OF FILM CAN BUILD UP IN YOUR MOUTH, AS WELL AS SOME BAD TASTES. BRUSHING MORE THAN USUAL CAN HELP. IF YOUR GUMS ARE FEELING OVERLY SENSITIVE, USE A SOFT TOOTHBRUSH.—TERI

FEELING TIRED:

I FOUND THAT IF I SAT DOWN WHEN I DID EVERYDAY THINGS, LIKE SHAVING OR BRUSHING MY TEETH, OR BLOW DRYING MY HAIR, THOSE SORTS OF THINGS I DID EVERYDAY, IT WAS SO MUCH EASIER TO DO, ENERGY-WISE, IF I SAT DOWN. I WOULDN’T GET SO TIRED THAT WAY, AND COULD CONSERVE MY ENERGY IF I WAS HAVING A LOW ENERGY DAY.—RAY

DRY, ITCHY EYES:

MY EYES DROVE ME CRAZY DURING CHEMO, BECAUSE THEY BECAME SO DRY AND ITCHY. INSTEAD OF USING LOTS OF DROPS, WHICH DIDN’T SEEM TO WORK, I USED COLD COMPRESSES, AND ONE OF THOSE COSMETIC GEL MASKS, WHICH MY WIFE KEPT IN MY FRIDGE. IT SEEMED TO HELP QUITE A BIT.—GRANT

WATER BOTTLE:

WHEN I WENT TO MY CHEMO APPOINTMENT, I BROUGHT A HOT WATER BOTTLE WITH ME, MINE HAS A LAMB'S WOOL FLEECE COVER THAT IS REALLY COZY. I WOULD JUST HOLD IT ON MY LAP, AND THE WARMTH WAS A BIG COMFORT.—LISA

************

HELP OPTIONS: NCI

CANCER INFORMATION SPECIALISTS CAN ANSWER YOUR QUESTIONS ABOUT CANCER AND HELP YOU WITH QUITTING SMOKING. THEY CAN ALSO HELP YOU WITH USING THIS WEB SITE AND CAN TELL YOU ABOUT NCI'S PRINTED AND ELECTRONIC MATERIALS. CANCER INFORMATION SPECIALISTS HAVE ACCESS TO COMPREHENSIVE, ACCURATE INFORMATION ON A RANGE OF CANCER TOPICS, INCLUDING THE MOST RECENT ADVANCES IN CANCER TREATMENT. THEY ARE KNOWLEDGEABLE, CARING, AND EXPERIENCED AT EXPLAINING MEDICAL INFORMATION. THE SERVICE IS CONFIDENTIAL, AND INFORMATION SPECIALISTS SPEND AS MUCH TIME AS NEEDED FOR THOROUGH AND PERSONALIZED RESPONSES.

IMPORTANT: NCI PROVIDES CANCER RELATED INFORMATION FOR YOUR GENERAL KNOWLEDGE. PLEASE NOTE WE CANNOT ANSWER PERSONAL MEDICAL QUESTIONS, MAKE REFERRALS TO SPECIFIC DOCTORS OR INSTITUTIONS, OR GIVE MEDICAL ADVICE. CONCERNS ABOUT A MEDICAL CONDITION - EITHER YOUR OWN OR THAT OF A FAMILY MEMBER OR FRIEND, SHOULD ALWAYS BE DIRECTED TO A HEALTH CARE PROFESSIONAL.

TELEPHONE:

TALK WITH AN INFORMATION SPECIALIST FROM THE NCI'S CANCER INFORMATION SERVICE, IN ENGLISH OR SPANISH, WITHIN THE UNITED STATES, MONDAY THROUGH FRIDAY 9:00 A.M. TO 4:30 P.M. LOCAL TIME.

1-800-4-CANCER (1-800-422-6237)

TTY: 1-800-332-8615

LIVEHELP ONLINE CHAT:

HAVE A CONFIDENTIAL ONLINE TEXT CHAT WITH A CANCER INFORMATION SPECIALIST FROM THE NCI'S CANCER INFORMATION SERVICE - MONDAY THROUGH FRIDAY 9:00 A.M. TO 11:00 P.M. U.S. EASTERN TIME. LIVEHELP

HTTPS://CISSECURE.NCI.NIH.GOV/LIVEHELP/WELCOME.ASP

E-MAIL:

IF YOU HAVE QUESTIONS OR COMMENTS OR ARE UNABLE TO FIND WHAT YOU NEED ON THIS SITE, PLEASE FEEL FREE TO CONTACT US, IN ENGLISH OR SPANISH, USING OUR ONLINE CONTACT FORM AND EMAIL US:

HTTP://WWW.CANCER.GOV/CONTACT

MAIL:

WRITE TO THE NATIONAL CANCER INSTITUTE AT:

NCI PUBLIC INQUIRIES OFFICE

6116 EXECUTIVE BOULEVARD

ROOM 3036A

BETHESDA, MD 20892-8322

************

HELPFUL RESOURCES: THE COSTS OF CANCER TREATMENT CAN QUICKLY BECOME OVERWHELMING, EVEN IF YOU HAVE MEDICAL INSURANCE. PATIENT ASSISTANCE PROGRAMS ARE OFFERED BY VARIOUS COMPANIES, NONPROFITS AND GOVERNMENT AGENCIES TO HELP PATIENTS WITH LITTLE OR NO INSURANCE GET ACCESS TO DRUGS AND MONEY FOR OTHER EXPENSES.

IF YOU’RE INTERESTED IN ENROLLING IN A PATIENT ASSISTANCE PROGRAM, YOU MUST FIRST GATHER INFORMATION, USUALLY FROM YOUR DOCTOR OR THE MAKER OF THE SPECIFIC DRUG YOU’RE TAKING FOR WHICH YOU NEED ASSISTANCE. A DOCTOR MUST BE INVOLVED IN THE PROCESS BECAUSE THE PHYSICIAN WRITES THE PRESCRIPTION FOR THE MEDICATION.

MANY PATIENT ASSISTANCE APPLICATIONS WILL REQUIRE PROOF OF INCOME, INCLUDING TAX RETURNS, SOCIAL SECURITY INCOME, INTEREST AND RETIREMENT TO PROVE FINANCIAL BURDEN AND TO MEET INCOME REQUIREMENTS. FAXING THE INFORMATION OFTEN SPEEDS UP THE PROCESS. IN ADDITION TO MANY STATE GOVERNMENTS, NUMEROUS ORGANIZATIONS PROVIDE INFORMATION ON PATIENT ASSISTANCE PROGRAMS, INCLUDING THE ONES LISTED BELOW.

AMGEN REIMBURSEMENT CONNECTION

800-272-9376

WWW.AMGEN.COM/PATIENTS/ASSISTANCE.HTML

FOR PATIENTS WHO ARE UNINSURED OR UNDERINSURED AND WHO HAVE LIMITED FINANCIAL RESOURCES; BASED ON INSURED STATUS AND INCOME LEVEL. DRUGS IN THIS PROGRAM INCLUDE ARANESP® (DARBEPOETIN ALFA) AND NEULASTA® (PEGFILGRASTIM).

BRISTOL-MYERS SQUIBB PATIENT ASSISTANCE FOUNDATION

800-736-0003

WWW.BMSPAF.ORG

ESTABLISHED TO PROVIDE TEMPORARY ASSISTANCE TO PATIENTS WITH FINANCIAL HARDSHIP WHO GENERALLY HAVE NO PRIVATE PRESCRIPTION DRUG INSURANCE AND ARE NOT ENROLLED IN A PRESCRIPTION DRUG COVERAGE PLAN THROUGH MEDICAID OR ANY OTHER FEDERAL, STATE OR LOCAL HEALTH PROGRAM.

CANCERCARE

800-813-4673

WWW.CANCERCARE.ORG/GET_HELP/ASSISTANCE

CANCERCARE’S FINANCIAL ASSISTANCE PROGRAM PROVIDES LIMITED GRANTS FOR CERTAIN EXPENSES RELATED TO TREATMENT.

GENENTECH’S SINGLE POINT OF CONTACT

888-249-4918

WWW.SPOCONLINE.COM

AVASTIN EXPENDITURE CAP: 800-232-2717]

A REIMBURSEMENT RESOURCE FOR GENENTECH PRODUCTS THAT PROVIDES INFORMATION TO PATIENTS AND THEIR HEALTH CARE PROVIDERS.

GLAXOSMITHKLINE’S COMMITMENT TO ACCESS

866-265-6491

WWW.COMMITMENTTOACCESS.GSK.COM

PROVIDES OUTPATIENT MEDICATIONS TO ELIGIBLE LOW-INCOME PATIENTS WHO DO NOT HAVE PRESCRIPTION DRUG BENEFITS.

LILLY CARES

800-545-6962

WWW.LILLYCARES.COM

PROVIDES TEMPORARY ASSISTANCE TO PATIENTS OBTAINING LILLY OR DISTA MEDICATION.

MERCK'S ACT PROGRAM

866-363-6379

HTTP://WWW.EMEND.COM/APREPITANT/EMEND/C ... /INDEX.JSP

ACT IS A TWO-PART PROGRAM SPECIFICALLY DESIGNED TO ASSIST INSURED PATIENTS WITH INSURANCE REIMBURSEMENT ISSUES, AND TO PROVIDE PRODUCT SUPPORT FOR THOSE QUALIFIED INDIVIDUALS LACKING COVERAGE FOR EMEND® (APREPITANT).

PARTNERSHIP FOR PRESCRIPTION ASSISTANCE

888-477-2669

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Posted

Welcome to the place no one wants to be but are glad it's here. Annette gave you a ton of resources. It may seem overwhelming, but read through it. It's good stuff. Print off the questions to ask your doctor. Getting specifics is good, knowledge is power.

It is terrifying at diagnosis. But when you have a plan in place, I think you'll feel more in control.

There are tons of stories of hope here. Peruse the various boards, and see what is of interest to you.

If you like to gab on line, we post a daily post about the AIR. You'll see it with Air in the title. It's just a bunch of us that like to keep in touch on a fairly often basis. Some folks just pop in and read, others write posts. There are no rules about that.

We're a friendly bunch, and will support you, pray for you, and anything else you need. You are not alone.

Judy in Michigan

Posted

Hello to you. As said above when you are told it looks like Lung Cancer it puts you in a state of shock. I remember it well, even though it was 12/97 ! Yes, this can be beat. I was not early stage, my tumor was in the apex on my right upper lobe touching the lining of my lung, pressing on nerves that go through that area.

Please keep us posted.

Also because it is so shocking it is a very good idea to bring an extra set of ears with you or tape what the Dr. says so you can listen again later.

Donna G

Posted

I can't even begin to tell you how wonderful this site is. My mom was diagnosed with lung cancer in Jan and I have found great comfort in this community. Not only are they knowledgeable but they understand what you're going through. I hope you can find comfort in this community and you will most definetly be in my prayers.

Posted

Welcome. You've come to the right place to get the support you need to get through this. And it is a place of hope. I'm stage 3b and still living life. Come back anytime you have a question, need a shoulder or just to rant. We all get angry about this at one time or another. This is a place where you can just be.

Judy in KW

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