Doctors Appointment

Whether you have initiated the visit or another physician involved in your care, has referred you to a radiation oncologist, you are there to learn whether radiation therapy is indicated as a part of your treatment. If indicated, you will also be given information on the area where radiation would be focused on, the total dose of radiation. the number of radiation treatments necessary as well as its potential acute (aka early) and late (chronic) side effects. The radiation oncologist may also share the data supporting his/her recommendation.

How you can prepare yourself for your first visit with a radiation oncologist is very similar to visiting any other specialist but what makes it unique and in some instances challenging, is the many myths around radiation therapy. So the best you can do for yourself and the radiation oncologist you are seeing is to remove any myth from your mind. The experience your grandmother or neighbor had with radiation treatment is totally irrelevant to your situation. Maybe they had a different form of cancer. Maybe their cancer was the same but presented at an earlier or later stage. With the rapid and progressive improvement in radiation technology, comparing radiation treatment your grandmother received 10 or 20 years ago with yours, would be comparing apples and oranges. So do your best to remove the myths and fears and receive the information with an open mind.

The information one can find on the internet is as good as its source. So unless you have been given a reliable source of information, do not trust everything you find on the internet. Acquiring misinformation would not only not be helpful to you, it may increase your anxiety and apprehension about radiation treatments.

In general, I would recommend the following for preparation for your visit:

1. It is a great habit to obtain a copy of all pertinent information prior to your visit. Even though, with your permission, physicians offices communicate these vital information prior to your visit, any missing information can interfere with having a productive consultation.
2. It is extremely helpful to have your own version of your medical and surgical history to include all your past medical issues, the medications you are taking (including the supplements you might have bought at GNC or given by your chiropractor), your allergies, and very importantly your family history of cancer. Your family history of cancer may lead into genetic testing and completely change the recommended treatment for your specific cancer.
3. It is helpful to have someone accompany you. You will be given plenty of new information making it almost impossible to retain all of it. Having a second pair of ears and eyes, especially if your company would take notes, would be extremely helpful in recording and retaining the information.
4. Prepare questions ahead of time and do not hesitate to ask about anything you do not understand. As smart and intelligent as you are, you are not a radiation oncologist and are not expected to understand all the technical details of it.
5. At the end of your consultation, repeat a summary of the information you have received. It is not unusual to misunderstand something and you can only correct that by comparing your understanding with what the radiation oncology meant to tell you.
6. If you feel that you have not grasped all the information or have remaining questions, do not hesitate to ask for a second visit when you can spend more time clarifying those matters with your radiation oncologist.
7. Please understand that that final decision regarding your treatments is yours. If you do not feel comfortable with the information you have been given, do not hesitate to seek second opinion.
8. If you have received radiation in the past, please make sure to have details of your previous treatment, because that is crucial in determining whether you can receive radiation again or not.
9. Please understand that preparation for your radiation treatments may take anywhere from days to weeks. Do not expect to start your treatment on the day of your consultation.
10. Breaks during your radiation treatments would negatively impact the outcome of your treatments. So be prepared to cancel a trip you had scheduled a year ago if your radiation oncologist finds it detrimental to delay start of your radiation treatment.
11. Sometimes radiation and chemotherapy are recommended together. Even though your radiation oncologist and medical oncologist would do their best to coordinate your treatments, consider yourself a member of the treatment team and have all the information you can get to facilitate the coordination.
12. If it alleviates your anxiety ask for a tour of the department, take a look at the radiation machine and meet all the members of radiation team including radiation therapists, the dosimetrist and the physicist.
13. It is often helpful not to rely on your imagination so ask your radiation oncologist to show you some images of radiation plans and beams. It may put your mind at ease.
14. Just as you do at radiology department, please notify your radiation oncologist if you are pregnant or there is any possibility you might be pregnant
15. And last but not the least ask your radiation oncologist for reliable sources (books, websites, brochures) to educate yourself not only on your radiation treatments but also its potential side effects and your nutrition throughout the course of treatment.

If you have worked at your new employer long enough to accumulate leave time I would utilize vacation, sick or personal days for a scheduled doctor appointment. If you find that you need more then one day or your request are frequent you should discuss with your human resources department your needs to see if accomidations are offered. Maybe you could seek a later afternoon appointment and flex. If you have been employed for at least 12 months and worked enough hours you could be eligible for Family Medical Leave assuming your employer employees the required number of employees (www.dol.gov).

You have enough time to prepare without too much time to worry excessively. How are you feeling about the appointment? The fact that you've already found this web site tells us a lot. You're obviously doing research and looking for answers.

There are a million things I could tell you: but the most important thing is to know yourself. How much information do you want? Do you know the medical system, how it all works? Are you comfortable advocating for yourself? Is your general health good? Do you have all your current medications (if any) and the name of your PCP written down as well as your health history? You will write out this information (plus your insurance policy numbers) a million times so you might want to consolidate it all into a word document to make it easy to copy. Take it with you to your appointment.

Here are a few things I've learned and recommend for others:

1) Realize that YOU are in charge. Take strength from that. This is your health, your cancer. No one else can or should make decisions for you. An excellent doctor will listen to your concerns and preferences then make recommendations based on evidence and best practices. If you don't click with the first doctor find another. It's worth the time and anxiety. You need to be able to communicate comfortably with this person; and he/she should listen honestly and sincerely to you.

2) Get a copy of Susan Love's Breast Book, the most recent edition. This is excellent background information about breast health, breast cancer, and an overview of treatments. That's a good place to start.

3) Don't believe everything you read or hear about so & so's aunt or what's her' name's sister. There are many different forms of breast cancer and and an even greater number and combinations of treatments. Not every case is the same. Take information, stories and unwanted advice only as you can accommodate it. It's easy to be overwhelmed.

4) You can get a terrific treatment guide from Livestrong.org here: http://www.store-laf.org/gbj001.html or DM me on Twitter and I'll mail one to you. I found it helpful to have one notebook where I recorded all my information.

5) I also felt empowered by the Livestrong Manifesto, which begins: "We believe in life. Your life....We believe in information. Not pity. And straight, open talk about cancer." http://www.store-laf.org/gbj001.

6) If you are in your child-bearing years and still want to have children talk to your oncologist about protecting your fertility.

7) Was your tissue analyzed by mammaprint or OncotypeDx? These tests can provide some guidance whether or not chemo is necessary.

8) If your oncologist recommends chemo - and you say you don't want it - make sure he/she specifically states why it is considered ESSENTIAL for you. Is your cancer hormone receptor positive? It's important for you to know this, as you know your stage, grade and HER2-new status.

9) I trust that someone is going with you to this appointment? This is very important. Another set of ears is essential. And remember you have TIME to come to a decision you are comfortable with. It took me three weeks to review information, and see four different doctors. The search was worth it. I was diagnosed with a locally advanced breast cancer, had surgery, chemotherapy, radiation and three years of Tamoxifen. This was thirteen years ago. My health is excellent and I've had no recurrence. Wishing the same for you,
Jody

Write down your questions, make sure you get all of them addressed and take someone with you. A second set of ears is always helpful!

Great question, Murray! We would suggest making sure you know why you're going to a specific doctor and what you hope to accomplish at the appointment, and going from there. Our feature article, "The 'Handoff': Your Roadmap to a New Doctor's Care" (http://www.preparedpatientforum.org/organizing/handoff.cfm) offers some tips for planning and navigating a visit to a new doctor's office. The article recommends that patients take these steps:

Bring a list of all your medications, including herbal and over-the-counter remedies, to your first appointment with your new doctor.

Repeat back any instructions your new doctor gives you, to make sure you've understood them correctly.

Ask your doctor to demonstrate the use of any new devices he or she may prescribe for you.

If you have a family member or friend who helps take care of your health, bring them to your appointment.

Before you leave, ask about your next steps. Do you need to make other appointments? Do you need to share any information with your primary care doctor?

There may also be other medical records or information you need or want to have on hand, which you may want to consider ahead of time. There are also some general steps that are good to take before a visit to any doctor's office. Some general resources for preparing for doctors' visits can be found here: http://www.preparedpatientforum.org/patient411/communicate.cfm#Preparing

You may also find it helpful to review our article, "Your Doctor's Office, Demystified," which provides information about the different kinds of medical professionals found in many doctors' offices: http://www.preparedpatientforum.org/organizing/droffice.cfm