Patient Preparation

I recently had a breast biopsy where the tissue pathology came back "tissue did not survive processing". I never realized that this can and does happen due to many factors such as sample size, chemical process and things sometimes outside of human error. I recently had a breast biopsy where the tissue pathology came back "tissue did not survive processing". I never realized that this can and does happen due to many factors such as sample size, chemical process and things sometimes outside of human error.

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. 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.

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! There is no question that when physicians have more in-depth, personalized discussions with their patients and encourage them to take an active role in their health, both doctor and patient feel more confident that they have reached a correct diagnosis and a good treatment path.

A doctor’s approach to the patient is key. Taking the time to examine every piece of a person’s medical history, and then applying his/her expertise to the patient’s particular condition is critical to making the correct diagnosis.

The first piece of advice I would offer a patient is to ask questions, and to keep asking until they’re satisfied with the answers. It’s all too easy to be referred to a specialist and start treatment without having all of your questions answered, or having your doctor ask – and answer – the right questions in the first place.

For example, if you have a test, don't assume that no news is good news. Ask about your results. Also, treatment recommendations based on the latest scientific evidence are available from the National Guidelines Clearinghouse™ at www.guideline.gov. Ask the doctor if your treatment is based on the latest evidence.

A recent study in Israel (http://tinyurl.com/3wehvcw) determined that examining patients and taking a medical history are more useful to hospital doctors in diagnosing patients than high-tech scans. The study showed that patient history alone or history plus a physical exam were most important to a doctor's correct diagnosis in almost 60 percent of cases. When basic tests were included, they were the basis of more than 90 percent of correct diagnoses along with history and exams.

According to Dr. Jerome Groopman, one of the world’s foremost researchers on how doctors think (he’s written the definitive book on it http://tinyurl.com/28pom7), doctors desperately need patients and their families and friends to help them think. Asking questions won’t just make the patient comfortable – it can disrupt a doctor’s thought process and make him think about a case in a way that may save a life.

While we urge patients to be their own advocate, it’s also smart to have a family member or friend with you at doctor’s visits, someone who can help get things done and speak up for you if you can't.

Also, I can’t stress enough the importance of researching and compiling a family medical history. BreastCancer.org reports that a woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, or daughter) who has been diagnosed with the same, and about 20-30 percent of women diagnosed with breast cancer have a family history of it. A Cleveland Clinic study (http://tinyurl.com/25azwa8) shows that a family history may be a better predictor of disease than even genetic testing. Find out about your family’s medical history, write it down (the Surgeon General has a good on-line tool to help you do this http://tinyurl.com/a675nl), and make sure your doctor knows about it.

Even if you do have charts dating back to childhood, however, don't assume your physician has digested or will remember everything. Adam Dickler, M.D., a radiation oncologist in Evergreen, Ill., says,"There really isn't enough time. If your doctor flips open your file while entering the exam room, it may be the first time she's looking at it, so be ready with a recap. A full recap.”

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

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