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Support > Preparing for Doctor Visits

Last update: 03/27/2015

TOPICS
 
Optimizing Doctor Visits  | Basics - what to bring / do
Questions for Your Doctor |
Treatment-related Questions

  
Care Managers | A Checklist to Help You Prepare | Other Services to Inquire About

Optimizing Doctor Visits

The first meeting with your oncologist is more important than you may realize.   It's a good idea to first ask your doctor how he or she is feeling ... and then to ask if this a good time to ask questions.  

Objectives

  1. To help your doctor to understand and monitor your medical condition and needs.

  2. To discuss, understand, and agree on the treatment plan.
    (considering t
    he full range of appropriate therapies, standard and investigational)

  3. To receive timely access to medical care and also related services when it is needed. |(such as social, nutritional, financial)

  4. To foster a mutually respectful and supportive relationship.
     
    IMPORTANT NOTE
    :  By providing a concise written summary of your background and questions, you are showing respect for your doctor's time; and helping him or her to "get up to speed" quickly ... to use the available time to focus on problem solving and asking follow-up questions

Printable checklists prepared by PAL:
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Bring list
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Questions for Your Doctors
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Big Picture Questions

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Reporting Symptoms
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7 Reasons to Consider Trials based on our clinical circumstances

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Basics:

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Check the "Bring List"  PDF | Brochure 

To make sure you have ALL THAT YOU NEED to optimize the consult.
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Have a  trusted friend or love one sit in on the consult (not in the waiting room)

One of the best ways to improve the quality of your consult.
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Prepare your questions and provide a concise background Web | PDF

This step is essential for optimizing the consult time - helping your doctor to see the big picture and
focus on addressing your main concerns.
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Please report your symptoms and side effects honestly and promptly  PDF 

If you do not report your symptoms, who can or will? 
And how can your doctor provide reliable guidance without these facts?

 

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Questions for Your Doctor

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Preparing for Doctor Visits   
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What to bring PDF  or print our Concise "Bring List" 
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Questions for your Doctor  Web | PDF  

 

Treatment-Related Questions for Your Doctor

Goal of therapy | When to Start or Change Treatment |
What is Best Practice for My Type | Other Questions | About Cure as a Goal of Therapy


Resources from the News:

bullet
Opinion: When doctors don't listen listen CNN special 
By Dr. Leana Wen and Dr. Joshua Kosowsky, Special to CNN
bullet
MDA: Ask The Right Questions: Get The Most Out of Your Oncology Appointments

Nice advice here from an MD survivor, including what NOT to ask and WHY.
bullet
KevinMD: How well does your doctor play with others? http://bit.ly/SxTltL

" I have never before considered medical culture as an important factor in choosing a doctor, but I am now a fan. As I am not certain how to screen for this social skill, until someone figures out a teamwork rating system, I would suggest being direct and just ask.
bullet Communications - KevinMD: How to discuss online health information with your physician  
 
What is the appropriate goal of therapy for my type of lymphoma?

There are three basic goals of therapy:

o      To manage the lymphoma - treat as needed with minimal toxicity

o      To achieve a durable remission or possible cure (curative intent)

o      To relieve symptoms or to address select areas based on immediate need
(palliative or best supportive care).

For aggressive (fast-growing) types of lymphoma

Note: the goal of therapy is generally to cure aggressive lymphoma with combination therapy.

Q: Is the standard of care reliably curative for my type of aggressive lymphoma?
 
Q: Are there any clinical trials that look promising for improving the
cure rate?
 
Q: Are there any clinical trials that look promising for curing my type of lymphoma with less toxicity?

 
For Indolent lymphoma:

Note: The goal of therapy often depends on the natural history of the type of lymphoma, and sometimes the behavior of the indolent lymphoma which can vary ... can grow slowly or aggressively, can remain stable or regress spontaneously, and sometimes (uncommonly) never needs treatment.

The clinical "behavior" of lymphomas of the same type can vary.


Q: Does the behavior of my lymphoma determine the goal of therapy - curative intent vs. management?
Q: Do I have high- or low-risk indolent lymphoma? 
Q: How is the risk of my indolent lymphoma determined?


Q: Based on my risk-factors
    (age, general health, performance, and the clinical behavior of the lymphoma):
    - Is initial observation (watch and wait) appropriate?
    - If so, how will I be observed (with imaging, labs, and direct consults)?
            - How often should we schedule tests or consults?
            - What symptoms are expected, and which should I report promptly?

Q: What determines the need to treat?
Q: Is there a proven survival advantage for treating early - before a need to treat?

Q: When do you treat indolent lymphoma aggressively?
    - When the behavior changes?   
      (faster growth? bulky disease? new nodes?  area of involvement? symptoms?
       grade or other factors as determined by biopsy?)

    - Is age a factor in the goal of therapy? 
    - Does having bulky disease (nodes > 8 cm) influence the goal of therapy?

Q: Is the first treatment the best opportunity to achieve a durable remission with combination therapy?
    - How long might the remission last (as a range)? 
    - Can the duration of the remission offset the toxicity of the treatment?

Q: Can indolent lymphoma be
cure (potentially) with any novel or investigational therapies?  
    - Is intent to
cure a realistic goal with standard therapies?
    - Does the research data suggest that radioimmunotherapy can cure indolent lymphoma?

Q: If there is a need to treat often (the responses are short-lived in my case)?
    - Does this indicate high-risk indolent lymphoma?
    - And a need to treat more aggressively with the goal of achieving a more durable complete remission?

Q: Are there investigational therapies that may be effective and less toxic?
    (can be used over an extended period of time) to help manage the lymphoma better?

Return to top of Treatment Questions

bullet
When to start or change treatment and
what are the indications of the need to treat?


 
For aggressive (fast-growing) types of lymphoma

Note: For aggressive lymphomas treatment generally begins shortly after diagnosis or relapse.

Q: How long does it take to know if the lymphoma is responding sufficiently to therapy?

Q: Are there any tests that can reliably guide when to change treatment (response-adapted therapy)?
 
Q: Are there any clinical trials to consider if the response to therapy is not adequate?


For Indolent lymphoma:

NOTE: For indolent lymphomas, treatment often begins when there are symptoms impairing quality of life, or evidence of steady progression or the disease becomes bulky, or there are low blood counts due to bone marrow involvement, or for cosmetic reasons, ...

See also GELF criteria for Need to Treat


Q: Is it common to delay therapy for indolent lymphoma until there's a need to treat?

Q:  How long does it take to respond to antibiotic therapy (for MALT) or Rituximab monotherapy?

Note: It can take months to respond fully to these therapies -
as long as 12 months to respond to antibiotic therapy for h-pylori positive MALT.


Q: Are standard therapies less effective when the lymphoma is bulky?

Q: If I get too sick, can it limit how much therapy I can have when therapy is needed?

See also Indications for Need to Treat Indolent Lymphomas
Return to top of Treatment Questions
bullet
What is the standard of care (best practice) for my type of lymphoma?

Note: Do check NCCN, Cancer.gov, or consult independent lymphoma specialist to identify the best practice for your specific type of lymphoma. 

BEST PRACTICE (Standard of Care) resources:

- National Comprehensive Cancer Network - NCCN.org 
(requires one-time free registration and login) 

- National Cancer Institute (NCI)  Cancer.gov


For aggressive lymphoma:

Q:  What is the standard of care for my type of aggressive lymphoma?

Q:  How effective is the standard of care for curing my type of aggressive lymphoma?

If the standard of care is not effective for your type of lymphoma, please consult at least one expert to indentify an appropriate clinical trial.


For Indolent lymphoma:

NOTE: For indolent lymphomas, treatment often begins when there are reasons to treat, such as symptoms impairing quality of life, or evidence of steady progression, or the disease is becoming bulky, or there are low blood counts due to bone marrow involvement, or for cosmetic reasons.

For the uncommon types of indolent lymphomas, the standard of care (best practice) might not be widely known by general oncologists who treat many types of cancer.  Please seek at least one expert second opinion.


For indolent lymphomas there is no proven best practice that applies to all clinical circumstances

- Except perhaps for gastric MALT when positive for h-pylori infection,
which is often treated with antibiotics as first therapy;

- Except perhaps for stage I/II localized indolent lymphoma,
which is often treated with radiotherapy to the region with curative intent.

Q: Is it common to delay therapy for indolent lymphoma until there's a need to treat?

Q:  Which of the approved therapies for indolent lymphoma is best matched to my clinical circumstance and treatment goals?

Q: If there is no effective standard therapy for my clinical circumstance, what clinical trials seem appropriate?

See also 7 Patient-Centered Clinical Circumstances to Consider Clinical Trials
 

Return to top of Treatment Questions


 

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Other Questions

Printable: Questions for Doctors PDF

Note:  Staging is the determination of where the lymphoma is and at what levels. 
Staging can be done by CT or PET imaging, by endoscope with biopsy for MALT, with bone marrow biopsy.


Q: If it's challenging to stage my type of indolent lymphoma, how do you measure success if there where no symptoms when you start treatment?

Q: When treating to manage indolent lymphoma am I exchanging symptoms for side effects,
 ... and if there are no symptoms at start of treatment, am I gaining only side effects? 

Q:  Is the potential benefit of treatment worth the risks (the side effects)?
 
Q:  Are the expected side effects of treatment reversible with time - fully, partially?

Q:  Is the chosen therapy likely to achieve a complete or partial response?
Q:  Do complete responses tend to last longer than partial responses? 


Q: How long is the response expected to last for the recommended treatment? 

Q: Is there any way to reliably measure the quality of the response in the blood and bone marrow,
such as with PCR testing for minimal residual disease?

Q:  Does delaying the time to first or second relapse with
maintenance Rituximab reasonably predict
a better long-term outcome?

    - Would I do as well withholding treatment, and better in the long-term by saving treatment for when it's needed again?

    - Might I be receiving too much treatment when treating regularly with Rituximab
 when there's no evidence of lymphoma (I had a complete response to the pretreatment)?

    - Do my risk-factors help to make this decision? ... such as how responsive the lymphoma was to the pretreatment, or how the lymphoma behaved prior to treatment?

 
bullet Before starting a treatment, medication, or test, ask your doctor:

1) Are there other options, other options I can try first?
2) Why did you pick this over others?
3) And what are the pros and cons of taking this?

 
bullet
See also Response terminology

As always, the above are to be used as discussion points only - these questions should not be the basis for making or influencing medical decisions, which requires first-hand knowledge of your clinical details by a trained medical professional.

Return to top of Treatment Questions

bullet About Cure as a Goal of Therapy

We define cure, as an outcome where the disease never returns, or never returns to a level that is detectable or clinically relevant. Ö We die of something else.

Noting that going for a cure is not always appropriate, and that it can take many (how many?) years to determine if an indolent (slow growing) cancers is cured with any protocol and that we need to consider the risks of therapies that may have the
potential to achieve this goal. 

For example, an allogeneic stem cell transplant appears to have curative potential but it also has significant risks, including death, and therefore it might not compare favorably to management of a lower-risk disease with lower-risk therapies as needed.

The
potential to cure depends on the type of the lymphoma (it's natural history), and the available evidence from clinical trials (from preliminary to substantial). 

For example, Hodgkins lymphoma has a very high cure rate. 

The urgency to achieve a cure depends on the anticipated clinical course of the lymphoma - aggressive vs. indolent, but also the age of the patient at diagnosis.

Please note, we are not qualified to recommend therapies, standard or investigational.  And by definition the true risks and potential benefits of an investigational protocol are not fully understood. For example, the potential (possibility) of a protocol to be curative is not a guarantee that the goal will be realized, else researchers would not need to do the study.

However, lacking sufficient follow up, the true risks and potential benefits of standard therapies may be inadequate as well.  That is, risk and uncertainty is not exclusive to investigational therapies.  Thus we need to ask informed questions and to rely on experts to help us with these complex decisions.

Return to top of Treatment Questions



Resources to optimize consults with your doctor:

Essentials:

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Preparing for Doctor Visits   
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What to bring PDF  or print our Concise "Bring List" 
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Questions for your Doctor  Web | PDF  

 

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When to Consider Radioimmunotherapy?  PDF  Web
 
An under-utilized therapy for indolent lymphomas
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Symptoms Checklist  PDF  

A checklist to help report new symptoms to your doctor
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Medication Checklist PDF
 
A way to schedule your medications, but also discuss possible interactions
when medications are prescribed by multiple providers.
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Patient recommended oncologists Web 

Clinical Trials:

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Is a clinical trial  appropriate for me? PDF | Web
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When to Consider Trials - 7 clinical circumstances 
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Clinical Trial Search Tools
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How to inquire about Clinical Trials
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A survey for your oncologist  PDF

A way to also start the conversation about clinical trials.

Tips, Tools and Related Articles

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Blood draws PDF 

Tips for minimizing pain and complications from blood draws
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Keeping Safe PDF 

 A patientís guide to minimizing risk of harm from medical errors
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Treatment Schedule Diary  PAL web 

 includes common questions to ask your doctor
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Treatment History Diary PDF  
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Treatment History Calculator - Excel version 2000 | Excel version 5.0
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The Smart Patient: How to Get the Best Care NPR.org 

"From how they talk to doctors to what they read, patients can strongly influence the level of care they receive."
bullet
Discussing CAM with your doctor scienceblogs.com:80/terrasig 
bullet

Musings of a Distractible Mind:
 
Thoughts of a moderately strange (yet not harmful) primary care physician.

A Letter to Patients With Chronic Disease http://bit.ly/b68MKj  
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Doctor-patient relationships Commentary
 
Guidance on how to communicate with your doctor, and how to create a support team
to optimize your care.
  

TOPIC SEARCH: 
Patient/doctor relationship - MedscapeNurses perspectives PubMed
Shared decision-making - PubMed
  | Web

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Care Managers

You *may* be able to get the help of a care manager or care "navigator" from the place you get treatment.

What you might ask:  I'm feeling a bit overwhelmed right now. Can you provide me with the names of care managers who can help me to organize what I need to know and do?

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Nurse specializing in cancer or other areas ("nurse navigators"); 

bullet

Social worker; 

bullet

Health care advocate;

bullet

Family member or friend that you trust;

bullet

Large facilities usually have a full-time care manager.
 
OR

Contact your local or virtual (online) non-profit organization - ACC PAL, LLS, LRF 

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The Role of Care Managers

What you might ask:  I'm feeling overwhelmed right now. Can you provide me with contact information for care managers who can help me to organize what I need to know and do?

Care managers help you make sense of what the doctor tells you. It's especially important to obtain help from a care manager if you have special needs.  

Care Managers can help you to:

bullet

Organize your information and point you to resources;

bullet

Find out what types of treatments and tests your insurance company pays for;

bullet

Make sure your doctors have everything they need before they meet with you, including your medical files, test results, treatment history files;

bullet

Understand what your doctor has explained to you about your diagnosis and treatment plan; 

bullet

Answer any questions you might have after you leave the doctor's office. 

(Adapted from guidance published by the Oncology Nursing Society) 
 

Usually, one visit with the doctor is not enough, especially if you're upset. You need to fully understand and remember all the important and complicated information you'll hear about your illness and treatment. 
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Other Services

What you might ask:   

I'm in need of special assistance because of one or more of the following: 
anxiety, depression, confusion, fatigue, finances, pain ...  

... Can you please provide me with contact information for special services to help me adjust to or overcome this problem?

bullet Mental health professionals (psychologists, or psychiatrists) - can help you adjust to the stress of living with cancer. Also see Support for Anxiety and Depression page.
 
bullet Social workers - can help you find the resources you need, and provide direct support.
 
bullet Support groups - can help by providing encouragement, and helping you to find resources.
Also see Support Groups for how to join online groups.
 
bullet Pain specialists - can help you to improve your quality of life, and address problems related to your illness and treatment.  Also see Talking About Pain and Pain Support.
 
bullet Physical therapists -  can help you to address problems with mobility.
 
bullet Nutrition experts - can help you to improve your quality of life, optimize your health, and reduce some risks related to diet and treatment.
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Doctor Visits - A Checklist to Help You Prepare

Begin your consult with:    

Doctor, i
s this a good time to ask questions?

Important: Treatment and initial consults should not be rushed. Ask your doctor to schedule a time that allows for a thorough discussion of all appropriate options.  

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Ask a trusted friend or family member to come with you.
 
Select someone who has good listening skills and some medical or support 
background if possible to each visit.

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A referral from your primary care doctor when seeing a specialist

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Authorization from your insurance company when special services or tests, or treatments will be administered.

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Insurance cards - bring all to first consult;

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Emergency contacts - bring a list of names, addresses, and telephone numbers to first consult;

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Family doctor and local pharmacy - bring a list of names and contact information to first consult;

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Pathology report and slides - bring with you to first consult;
Bringing the slides is especially important when consulting an outside expert for the first time

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Medical and treatment history - bring a summary to all consults. 

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A complete list of medications you are taking, including the dose and schedule;

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Bring a list of the dietary supplements and herbs you may be taking. 

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Bring a list of  dates, locations, and results of all doctor visits, tests, or x-rays

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Bring a copy of your recent radiology reports, and the film from the last image test if available. 

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A list of all your questions.  

See Questions for Your Doctor 

NOTE: A new federal law, the Health Insurance Portability and Accountability Act (HIPAA), 
could make it more difficult for doctors to get these records from other doctors' offices. 

See also: A Letter to Patients With Chronic Disease http://bit.ly/b68MKj  

Beautifully written. I expect this piece will resonate with patients and experts alike.

Musings of a Distractible Mind: Thoughts of a moderately strange (yet not harmful) primary care physician.

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Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.