***Record what the doctor says***

This is a list of questions that I've compiled during several doctors visits over the last 2 months. From personal experience, I find that if you ask the doctors if you can record them, they'll tell you no most of the time. If you just start recording out in the open about half will say something when the notice and the other half won't bother to stop you. The information will come very quickly. It's all technical and it'll be a blur. It's a lot at once and overwhelming. Recording helps to go back and review and write down your own questions for next time.

Don't forget to bring:

• Tape recorder
• A family member or friend to act as a 2nd set of ears and to help you take notes
• A folder of all pertinent medical records and a CD of images and scans
• Complete medications list
• Complete medical history
• Family medical history
• Notebook and pencil

Pathology results for the levels of:

MSK IMPACT test results?

Neuroendocrine tumor marker stains:

⦁ Synaptophysin?

⦁ chromogranin (protein)? If high, would his liver affect the results?

⦁ CD56?

adenocarcinoma stains

⦁ Moc-31?

⦁ BerEp4 ?

PDL1?

Her2neu? If present, would he take Herceptin?

Microsatellite stains?

KI-67? If higher than 20%, how aggressive and how fast growing?

How large is the tumor?

How fast are the cancer cells growing?

What is the grade of the cancer? What does this mean?

Are there cancer cells in all/distant lymph vessels or blood vessels?

What is the stage of the cancer? What does this mean?

⦁ What stage is he in? T? N? M?

⦁ Has it spread to: Liver? Lungs? Stomach? Bone? Which lymph nodes?

Does the pathology report specify the tumor characteristics clearly? Should we get another pathologist’s opinion?

Do any tests need to be done again?

Types of treatments:

Immunotherapy trial?

⦁ Antibody

⦁ Monoclonal antibodies

⦁ Non-specific immunotherapies

⦁ Oncolytic virus therapy

⦁ T-cell therapy

⦁ Cancer vaccines

What if he does FMT (Fecal Microbiota Transplant) 1st?

Or takes probiotics?

Are the chances still better than standard chemo treatment?

If still qualify for a different immunotherapy outside of the trial

⦁ What type of immunotherapy do you recommend? Why?

⦁ What are the goals of this treatment?

⦁ Will immunotherapy be my only treatment? If not, what other treatments will be a part of my treatment plan?

⦁ How will I receive immunotherapy treatment and how often?

⦁ What are the possible short-term and long-term side effects of immunotherapy?

⦁ How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

⦁ What immunotherapy clinical trials are available for me?

⦁ Whom should I call with questions or problems?

If not, are there other option:

⦁ Targeted therapy?

⦁ What do you think about antineoplastonics therapy vs chemotherapy for athenocarcinoma of the esophagus?

⦁ Endoscopic ablation?

⦁ Radio-frequency ablation?

⦁ Cryotherapy?

⦁ Photodynamic therapy?

⦁ Hormone therapy?

⦁ Surgery?

⦁ Radiation?

Chemotherapy? Is oral chemotherapy an option?

Which treatments, or combination of treatments, do you recommend? Why?

What clinical trials are available for me?

⦁ Learning more about the schedule and side effects of your specific treatment

⦁ Chance of a cure?

⦁ What is the goal: to get rid of all the cancer and keep it from coming back or to delay or slow down cancer growth?

⦁ Will I need to stay in the hospital for treatment? Or will this treatment happen in an outpatient clinic?

⦁ What is the expected timeline for my treatment?

⦁ How long are cyles?

⦁ How many doses in a cyle?

⦁ Which drugs and at what dosages?

⦁ How long does each session take?

⦁ How much recovery time between cycles?

⦁ How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

⦁ What lifestyle changes—such as diet, exercise, and rest—should I make to be healthy before, during, and after treatment?

⦁ Potential short- and long-term side effects?

⦁ How will you treat side effects that I experience during treatment?

⦁ How can I keep myself as healthy as possible during treatment?

⦁ Likelihood the cancer will come back after treatment?

⦁ Getting after-hours contact numbers for your doctor or nurse

⦁ Where you will receive treatment, such as the specific building and floor

⦁ Who will be part of my cancer care team? What does each person do?

PowerPort vs regular port: How often will he be scanned?

⦁ Why are you recommending a port?

⦁ What are the risks of a port?

⦁ Will my health insurance cover the cost of putting it in?

⦁ What do I need to do before getting a port?

⦁ Which vein is the port going in?

⦁ plastic, stainless steel, or titanium?

⦁ single chamber or dual chamber?

⦁ Will I feel any pain when the doctor puts in a port?

⦁ How long does the procedure take?

⦁ How long will the port stay in?

⦁ How should I care for my port?

⦁ Will I be able to see or feel the port?

⦁ Can I wear regular clothes?

⦁ Can I bathe and swim?

⦁ Can I exercise?

⦁ Will a port cause problems with radiation therapy or scans?

⦁ Who should I call if I have problems?

Dietician: high calorie, soft, not acidic, sugar free, low cholesterol

Bone scan vs bone biopsy?

What types of Complementary Therapy and Integrative Medicine are offered?

• Massage Therapy
• Acupuncture
• Acupressure
• Massage
• Yoga
• Tai chi
• Meditation and other mind-body relaxation therapies
• Hypnosis
• Music Therapy
• Art Therapy
• Physical Activity
• Exercise and strength training
• Nutrition
• Vitamins, Herbs, and Other Dietary Supplements

Questions For Your Doctors: A 9 part series by Les Coleman http://www.ec-cafe.org/cnt/questions.html

From the American Cancer Society:

https://www.cancer.org/cancer/esophagus-cancer/detection-diagnosis-staging/talking-with-doctor.html

What Should You Ask Your Doctor About Esophageal Cancer?

It’s important for you to have honest, open discussions with your cancer care team. They want to answer all your questions, so that you can make informed treatment and life decisions. For instance, consider these questions:

When you’re told you have esophageal cancer

• Where is the cancer located?
• Has the cancer spread beyond where it started?
• What is the cancer’s stage (extent), and what does that mean?
• Will I need other tests before we can decide on treatment?
• Do I need to see any other doctors or health professionals?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

When deciding on a treatment plan

• What are my treatment options?
• What do you recommend and why?
• How much experience do you have treating this type of cancer?
• Should I get a second opinion? How do I do that? Can you recommend someone?
• What would the goal of the treatment be?
• How quickly do we need to decide on treatment? What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects?
• How might treatment affect my daily activities? Can I still work full time?
• What are the chances the cancer will recur (come back) with these treatment plans?
• What will we do if the treatment doesn’t work or if the cancer recurs?
• What if I have trouble getting to and from my treatments because of transportation problems?

During treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Can I exercise during treatment? If so, what kind of exercise should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• What if I need some social support during treatment because my family lives far away?

After treatment

• Do I need a special diet after treatment?
• Are there any limits on what I can do?
• What other symptoms should I watch for?
• What kind of exercise should I do now?
• What type of follow-up will I need after treatment?
• How often will I need to have follow-up exams and imaging tests?
• Will I need any blood tests?
• How will we know if the cancer has come back? What should I watch for?

Questions to Ask Your Doctor about Treatment Clinical Trials

National Cancer Institute at the National Institutes of Health: https://www.cancer.gov/about-cancer/treatment/clinical-trials/questions

If you are thinking about taking part in a clinical trial, be sure to ask your doctor, “Is there a clinical trial that I can join?” If your doctor offers you a trial, here are some questions you may want to ask.

Questions about the Trial

• What is the purpose of the trial?
• Why do the researchers believe that the treatment being studied may be better than the one being used now? Why may it not be better?
• How long will I be in the trial?
• What kinds of tests and treatments are involved?
• How will the doctor know if the treatment is working?
• How will I be told about the trial’s results?
• How long do I have to make up my mind about joining this trial?
• Who can I speak with about questions I have during and after the trial?
• Who will be in charge of my care?
• Is there someone I can talk to who has been in the trial?

Questions about Risks and Benefits

• What are the possible side effects or risks of the new treatment?
• What are the possible benefits?
• How do the possible risks and benefits of this trial compare to those of the standard treatment?

Questions about Your Rights

• How will my health information be kept private?
• What happens if I decide to leave the trial?

Questions about Costs

• Will I have to pay for any of the treatments or tests?
• What costs will my health insurance cover?
• Who pays if I’m injured in the trial?
• Who can help answer any questions from my insurance company?

Questions about Daily Life

• How could the trial affect my daily life?
• How often will I have to come to the hospital or clinic?
• Will I have to stay in the hospital during the clinical trial? If so, how often and for how long?
• Will I have to travel long distances?
• Will I have check-ups after the trial?

Questions about Comparing Choices

• What are my other treatment choices, including standard treatments?
• How does the treatment I would receive in this trial compare with the other treatment choices?
• What will happen to my cancer without treatment?

Clinical Trials: What You Need to Know

• Why is this study being done?
• What is likely to happen in my case if I decide to participate/not to participate?
• What are my other options (standard treatments, other studies)? What are their advantages and disadvantages?
• What were the results of any previous studies of this treatment?
• What kinds of tests and treatments does the study involve? How often are they done?
• Will this require an extra time commitment on my part?
• Will I continue to be under the care of my doctor, or will I be seeing a different one (or both)?
• Will I have to travel somewhere to receive treatment? Will I be compensated for travel expenses?
• How could the study affect my daily life?
• Will I still be able to work/go to school?
• What side effects might I expect from the study treatment? (Remember that there can also be side effects from standard treatments and from the disease itself.)
• Will I have to be hospitalized? If so, how often and for how long?
• Who is paying for the trial?
• Will I have any costs? Will any of the treatment be free? Will insurance cover the rest?
• If I am harmed as a result of the research, what treatment will I be entitled to?
• How long will the study last?
• What type of long-term follow-up care is part of the study?
• Can I choose to continue to get this treatment, even after the study ends?
• Are there other sources of information about the study (for example, the Internet)?
• Are there others participating in the study I could speak to?
• Are there any other trials looking at this or other treatments for people like me here or elsewhere? If so, why should I enroll in this one?
• Do you think the question being asked in this trial is important? Why or why not?
• Has this question ever been studied before, and if so, what did those studies show?
• Realistically, what do you think is the biggest difference likely to be seen in this trial, and how likely is that?
• What do you think are the biggest downsides?
• Do you anticipate having any problem (or are you having problems) recruiting the necessary number of patients for this trial?
• Would you recommend this trial to a relative?

The New York Times- For Patients: Questions to Ask About a Clinical Trial: http://www.nytimes.com/2009/08/03/health/research/03trialside.html?ref=research&pagewanted=all

American Cancer Society- Questions to Ask About Clinical Trials: https://web.archive.org/web/20121028034328/http://www.cancer.org:80/acs/groups/content/@nho/documents/webcontent/clinicaltrialpatientworksheetp.pdf