The Call – Diagnosis Pink

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# The Call

Posted on April 17, 2017April 20, 2017 by admin

Post op day 7

Today I received a call from my oncologist. Her sweet voice started off asking how I was but then the unexpected came from her. My tumor was larger than originally thought. Her lyrical voice made it sound alright. She wanted to meet to go over the chemo protocol and we moved my appointment up to tomorrow. I hung up the phone and once I was no longer under her spell, I realized that the tumor was not just larger, but it was over three times larger. The 1.1 cm tumor was 3.5 cm. This will put me in a different stage. I will no longer be “Infiltrating Ductal Carcinoma, stage 1 grade 2, triple positive” . I will now be ” Infiltrating Ductal Carcinoma, stage 2, grade 2, triple positive” . Will my name change again after meeting with her tomorrow? What else will change?

There is so much unknown about cancer that I have found grabbing onto anything that is constant helps keep me sane. However, small changes or even not so small changes can really throw me off. Often people will run to the internet and search the sea of information. It is difficult to navigate. There is so much out there. It is mind boggling. Even in my saner moments when I am reading for information for this website, I feel overwhelmed by the amount of information out there. It is crazy making trying to shift through the facts and the interesting but not proven, the completely untrue, and the dangerous.
I know for myself it is important that in this moment of trying to stabilize myself again, the internet is no place for me to be. It is a trap that is recommended by doctors to try to avoid. I give my patients and their families safe, well established websites for them to look at if they need additional information. But I ask them to try to stay away from searching the net – at least until they feel more settled. I also recommend that my patients be with friends that can give them some perspective about what they are looking at and to come to me with what they found so that I may help make sense of it for them. It is important that your doctor is willing to talk to you about what is out there for any diagnosis. It is important to have that relationship. The search for the cure or for help is natural and should be supported by your doctor. I am glad I have doctors on my team that I can ask questions and not feel judged. While as a doctor, I have a lot of knowledge about my cancer, as a patient I lose all of my medical knowledge. My doctors understand that and allow for my temporary loss of information. The urge to search is strong. The need to be able to cope is imperative.

Here are things that help me in my search for information

1. Try to find a doctor that you feel comfortable with talking to about your questions. You should feel comfortable approaching your doctor about any question and feel that your doctor listens and is not judgemental. Your doctor should be able to discuss your concerns and questions or know of someone who can help you, or search for the information to discuss with you later. This does not need to necessarily be your surgeon, oncologist or radiation oncologist. It could be your primary doctor. Sound medical advice is important.

2. Realize that the statistics about prognosis include a large number of women that may have different treatment or differences in their illness. The numbers are going to include women who have a poorer outcome due to extenuating circumstances and not necessarily are reflective of what your prognosis will be. Do not get overly focused on statistics that show higher rates of reoccurrence. Talk to your doctor about your situation. The numbers are a guidance more for treatment decisions rather than a statement about your actual prognosis.

3. Many of the personal stories on the internet or on social media are stories when things go wrong. Many people are looking for help or just wish to talk about when things go wrong. These stories are obviously sad and some are horrifying. However, this does not mean that the same problems will occur with you nor do these stories represent the majority of people’s outcome. Your treatment and outcome may be very different.

4. There is a great deal of non scientifically proven information out there. Even things that have some research may not have solid research and is only a possibility rather than a strong recommendation. Much of the information is only anecdotal, meaning some people report it. This does not mean that most people will find the same effect. There are a multitude of reasons why something may work for one person and not work for someone else. It is important to note that solid research will find things that are more likely to be effective than anecdotal reports. Also, I have often found that lay press does not accurately report the findings of research studies. I will read the actual research and not rely on the lay press interpretation of the research.

Having some basic ideas of how to evaluate research is a good start when screening information on the internet or other sources. Here are some basic concepts for evaluating research.
1. Animal studies: many studies are done in mice or rats or other animals. While there are some similarities with animals the correlation is not 100%. Animal studies only give researchers a possibility of effect and will need human studies. It is not recommended to try something or eliminate something solely based on animal studies. Further studies with humans are needed.
2. In vitro studies: these are studies where animal or human cells are exposed to an illness or treatment and look at how the cell responds. These studies are mainly used as a starting point for further research and are not seen as definitive. How cells and treatment respond in the body (in vivo) may be different.
3. Human studies: There are a variety of types of human studies. A good description of the types of studies can be found here.

In general double blind studies or epidemiological studies such as a cohort study are more powerful studies. A double blind study is a method of studying the effect of a drug, supplement, or procedure where both the participants in the study and the researchers do not know whether the participant is getting the studied item or placebo. Studies with a minimum of 25 participants are better. Of course, the more participants the stronger the study. Studies with less than 25 participants are too small to be statically significant. These small studies are good for giving clues for future research but you should not base a change in lifestyle or trial of a procedure, medication, or supplement only based on a small study’s results.

A cohort study is a study in which a group of people who are currently receiving a specific treatment, eating a specific diet or have a specific illness are followed over a course of time and compared to a group who are not receiving the treatment or have the condition. Cohorts studies are very powerful studies since they can be very large and can be participants can be followed for years.

Additional things that add power to a study include accounting for factors that could be potentially affect the results of the study and how are outcomes evaluated, for example which scales or instruments are used or the manner in which information collected.

Anectdotal accounts (the most commonly found reports on the internet) do not need to be discounted but it is important to remember that there may be a variety of factors of why someone may have benefit or seemingly have benefit from a treatment that will not correlate with it being effective for anyone else. Sometimes these treatments may have dangerous side effects or be detrimental to your cancer treatment. Research studies are needed to find the risk and benefits of any treatment. For example, antioxidants such as vitamin E can change the effectiveness of radiation therapy because it can act as a protectant for normal cells as well as cancer cells. It is extremely important that you let your doctors know about any supplements, vitamins or change of diet.

I have found that looking at the Cleveland Clinic health library or Mayo Clinic , American Cancer Society, and Komen have solid information. There are other sites such as Breast Cancer.org that have very useful information but some of the information is not completely accurate and needs to be scrutinized. To find research you can try Google scholar, Gigablast, or NIH Medline. Your doctor will have access to research that is not available on the internet and may be able to obtain information for you.

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