Choosing Your Treatment Team/Questions to Ask

< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> This blog from Mayo Clinic offers some excellent advice for those facing the diagnosis of cancer.  One thing I'd add would be to ask about clinical trials that might be available to you.

http://www.mayoclinic.com/health/cancer-treatment-team/MY01836/?utm_source=Other&utm_medium=email&utm_campaign=HouseCall&pubDate=August+19%2C+2011

Choosing your treatment team

By Sheryl M. Ness

If you're someone who has just been diagnosed with cancer, it is overwhelming to deal with all of the information and decisions needed to move forward in your cancer care. It's important to learn all you can and ask questions along the way so that you have confidence in your treatment plan and the team leading you through treatment. Here are a few questions to consider as you start to make decisions:

• Is this the person (doctor, nurse practitioner, etc.) you want to lead you through your treatment experience? Do you have confidence in them? Are you comfortable with them? Do you feel that they're able to listen and respond to your concerns? If the answer is no to any of these questions, it's OK to ask for a different provider.
• Do you have enough information to make a decision about your treatment? If not, what is needed? Take time to understand all aspects of your treatment options.
• Does the treatment facility specialize in your cancer type? Ask about their experience with your cancer type, success rates and resources.
• Should you ask for a second opinion? Remember that it's OK to request this.
• What are the risks involved with treatment? Ask about short- and long-term side effects.
• What about when treatment is over? Ask about the long-term plan for care after treatment ends.
• Do you have a support person (or persons) to be with you along the way? This might be a family member or friend who can help you absorb and reflect information and decisions. They can also be there when you need emotional and physical support. If you don't have someone, ask about resources that are available to help you, such as mentors, coaches, navigators, social workers and educators.

One of the most important things is confidence in your treatment team. Take time to get your questions answered so that you can make informed decisions. I know that many of you can add to this list, as you learn so much from each other. Share your ideas and suggestions as you coach each other through this experience.

Edited by 123Donna - Apr 05 2012 at 11:00pm

Hi,

After I posted the above, realized that it is probably more important to ask additional
question(s) about how TNBC and it's treatment is different from other breast cancers.
This is important if the familiarity and expertise with TNBC of the physician
is not known. This way one can obtain information about the physician's understanding
and expertise with TNBC and not just the numbers of patients with TNBC seen.
Hopefully, one with TNBC can make initial appointments and consults with physicians who are familiar
and knowledgeable of TNBC.   ( see forum topic: http://forum.tnbcfoundation.org/Oncologist-recommendations_topic5721.html   )
As previously posted on various TNBC forums, information/questions for one with TNBC:
             Chemotherapy before versus after surgery. (Neoadjuvant chemo versus adjuvant chemo)
                           (If taxol is part of chemo plan, ? taxol first or last chemo)
                            http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html
             VItamin D level.
                      http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html
             BRCA testing. Certified genetics counselor consult.
                      http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA
-----------------------------------------------------------------------

Found a prior post by Laura B on the forum about questions to ask.
Yes, there are lots of questions. One may pick and choose the questions.
Posting for general info for questions to consider asking.
Some questions can be spread out over several visits.
Acknowledge some people may need to ask only a few questions.
If this is too much to read and consider,   just disregard.

Be sure to identify your needs before communicating them to your doctor and his or her health care team. --Below are questions to consider asking yourself before your next appointment.-

How much information do I want to be told about my diagnosis or health status?

How do I want my doctors to communicate with me about these issues (for example, “Don’t beat around the bush” or “With tender loving care”)?

Under what conditions do I need to talk with my doctors (quiet, uninterrupted, with a tape recorder or a family member present to capture information)?

What is most important when I consider my treatment options (for example, living longer, minimizing side effects, avoiding pain)?

Is there anything I can do to make communication with my doctors easier?

-The following questions are ones to consider asking your doctor: -

Why do you recommend this treatment or procedure?

How might it help me?

What are the possible risks?

What are the side effects? Which ones require immediate medical attention?

How long does it take? How often do I receive it? How is it given?

Are there more or less aggressive options available?

What are the symptoms that usually develop with my type of cancer diagnosis, and how are they treated?

How will each of these options affect my quality of life? Will I be able to do the things I enjoy? Can I work? Take care of my kids? Go on vacation?

What lifestyle changes would you recommend I consider during my treatment?

How and when will the effectiveness of this treatment be evaluated?

How do you like to make decisions?

How will you present information to me?

How can I reach you in an emergency?

What happens if I choose to receive no treatment?

-Treatment (Oncologist):-

Will you obtain and review with me the treatment information on my type and stage of cancer from the National Cancer Institute's Physicians Data Query (PDQ) program?
How long do I have to make a decision on a course of treatment?
What test results did you use to base your treatment recommendation? Are there other tests that can help refine our treatment options?
If I consent to this treatment what are the chances of recurrence?
Am I a good candidate for any clinical trials?
If I feel I need to either reduce the dosage or stop chemotherapy what impact does that have on my recurrence and survival rate?
What will the treatments cost me? Does my insurance cover the treatments you recommend?
What tests will need to be done while I'm undergoing treatment? How frequently will these tests need to be performed? When will they be done? What are you looking for with each test?
After I've completed treatment, can I expect the cancer to be completely gone?
How long will each chemotherapy infusion take? Can I drive myself to and from each treatment?
What should I wear to chemotherapy treatment? Can someone be with me during the treatment?

-Treatment (Surgeon):-

What kind of surgery will I have? How long does the surgery take? Exactly what will be done and/or removed in the operation?
What are my options regarding breast reconstruction? What will it cost me? Will my insurance cover reconstruction?
How long will I be in the hospital? Can I drive myself to and from the hospital?
Why do you recommend this procedure? What are the chances of success? What is a successful treatment? What are the risks associated with this surgery? Are there non-surgical options?
Will I have normal sensation in my breasts after treatment?
How long do I have to wait for the surgery results? Who will give them to me? May I have it in writing in addition to verbally? What kind of breast cancer do I have? Has the cancer spread to any lymph nodes or other organs?
How long does it take for a full recovery? What is meant by "full recovery"? When can I return to work? What side effects should I expect?
What do the terms "clean margins", "lymph node involvement", and "pathology report" mean?
What is "lymphedema"? Is there a way to prevent lymphedema?

-Treatment (Radiation Oncologist):-

What is the goal of the radiation treatment you're recommending? Are you working toward reducing the tumor or eradicating it?
What should I expect to feel during and after treatment? Are there activities I should avoid either before or after radiation treatments?
How long is each treatment? How many treatments will I need? How often will the treatments be given? Can I drive myself to and from treatments?
What should I wear to a radiation treatment? Can someone be with me during the treatment?

With caring and positive thoughts,

Grateful for today................Judy

If you look under TNBC Forums, there is a section called TNBC News, Resources and Tips.  This is where important information is posted like chemo, radiation, surgery tips.  You can't reply or post to these threads.  There are just a few forum members that can post there.  Nancy, Trip2 and Steve are the ones I know that have permission.  Nancy is no longer active in the forum and Trip2 (Pam) doesn't post much either.  So if you want this type of document available under that forum, Steve would probably be the best person to contact and see if he would post there.  The document should be a complete word type document since members won't be able to add to it or reply to the thread.

such good information guys.

Hi,

This thread is about choosing your treatment team and questions to ask.
As stated above,
It would difficult to ask all the questions suggested on this forum topic.
When one sees various questions to consider, it may help to zero in on questions
that are important for you and your treatment plan that still need to be asked.

That being said.....here's a link to questions listed on the Fox Chase Cancer Center site.
Breast cancer questions in general......not TNBC specific.
http://www.fccc.edu/cancer/types/breast/questions-doctor.html
Per site:
This list of questions may be helpful to bring to your appointment:
What type of breast cancer do I have?
What is the size of my tumor?
How many lymph nodes contained cancer?
Is my cancer hormone receptor-positive?
What is my HER-2 status?
What stage is my breast cancer?
What are my breast cancer treatment options?
Where can I find out about breast cancer clinical trials or other new treatments for breast cancer?
What are the potential side effects of this treatment and am I at risk?
How will this treatment benefit me?
How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
What are the expected timelines for my treatment plan?
Am I a candidate for breast conservation surgery (lumpectomy)?
Am I a candidate for sentinel lymph node biopsy?
Am I a candidate for breast reconstruction?
How can I ease the side effects of treatments such as radiation and chemotherapy?
Am I at risk for lymphedema and, if so, how can I reduce my risk?
What will my follow-up care include?
How will you determine if the cancer comes back?
Who do I call for questions or problems?
Who can I contact for emotional, supportive help for myself and/or my family?

With caring and positive thoughts to all,

Grateful for today.......Judy

2 additional resources for questions on breast cancer.
You will notice that some information and questions are repeated in the various posts on this thread.
This thread is to help ......and not overwhelm you....as you make your list of questions for your physicians.
One does not need to ask every question on this thread.

#1.
Here's a LBBC resource regarding questions about breast cancer when initially diagnosed.
Remember the Q&A's are for breast cancer and not specifically for TNBC.
Remember this is general and basic information.   You may want to consider asking some of these
questions to your physician for answers specific to your individual TNBC situation.

From LBBC (Living Beyond Breast Cancer) website:
http://www.lbbc.org/Audiences/Newly-Diagnosed/FAQs-about-Newly-Diagnosed-Breast-Cancer

FAQs about Newly Diagnosed Breast Cancer
Some of the Topics covered are:
    Communicating With Your Healthcare Team FAQs
    Pathology Report FAQs
    Testing FAQs
    Types and Stages FAQs
    Treatment Options FAQs
     And many other topics FAQs


#2.
Another resource:
http://www.tnbcfoundation.org/100qanda.htm
100 Questions & Answers About Triple Negative Breast Cancer
Authors
Carey K. Anders, MD, Assistant Professor, Breast Cancer, Lineberger Cancer Center, University of North Carolina, Chapel Hill, North Carolina
Nancy U Lin, MD, Nancy U. Lin, MD, Instructor in Medicine, Hardvard Medical School Breast Oncologist, Dana Farber Cancer Institute, Boston, Massachusetts
Details ISBN-13: 9781449609306 Paperback, 184 pages, © 2012
Table of Contents
Part 1 The Basics of Breast Cancer, Specifically Triple Negative Breast Cancer
Part 2 Risk Factors and Prevention
Part 3 Inherited Breast Cancer
Part 4 Diagnosis
Part 5 Treatment for Early-Stage Triple Negative Breast Cancer
Part 6 Survivorship: Life After a Diagnosis of Triple Negative Breast Cancer
Part 7 Natural History of Triple Negative Breast Cancer
Part 8 Management of Advanced Triple Negative Breast Cancer
Part 9 Clinical Trials
Part 10 Crossroads, Making Plans and End-of-Life
In my opinion, if one has other breast cancer books for the newly diagnosed, one may consider looking
at this book at a Cancer Resource Library/Cancer Center Bookstore or take out from a public library
before buying. It does have 100 Q&A but not all questions are specific to TNBC. If one was going to buy
a basic book, one would definitely consider this book as it adds the TNBC perspective to some of the
Q&As in the book. To the credit and value of the TNBC Foundation website/forums, much of the
TNBC information in the book is on this website (in my opinion).


With caring and positive thoughts,
Grateful for today.............Judy

"Bumping" for members who have joined since January 28, 2013.

Please see above posts.


Grateful for today............Judy

Bumping this thread for our new members 

Bumping up for new members!