Gotta Get A Game Plan

The recent announcement that the American Cancer Society is changing its recommendations for breast cancer screening has lit up the internet with articles, blogs and tweets. Reactions are all over the map from “it’s about time” to “hell no!” to “not enough”. The media has been spreading the word, often reducing the recommendations to a sound bite that distorts the message. People are asking me what I think and what I would recommend because I am a breast cancer survivor. I am not a medical professional. I’m not a scientist. While I’ve read many opinions about the recommendations, the data behind it and what people think about it, I’m in no way, shape or form an expert or even much past average in my knowledge on the subject. Rather than give my opinion of the recommendations, I am going to address the issue as I would if giving advice to a friend.

First a few clarifications. Screening mammograms are for routine checkups when you have no signs of breast cancer. Diagnostic mammograms are used when there have been changes in the breast or when a screening mammogram finds something suspicious. The new recommendations are for screening mammograms for those with “average risk”. They do not apply to anyone with above average risk factors. They also do not apply if you suspect something is wrong no matter what your age. In either case you need to talk to your doctor.

Here is what I would recommend to a friend:

Map Your Medical Family Tree: Sit down and make a medical family tree. Ask your older relatives to help you. Note how family members died, what major health issues they encountered (you can use this for other issues like heart disease as well as cancer) and their ethnicity. Go up all branches of your family tree. Breast cancer can be passed through men too.  Don’t forget the family members everyone likes to pretend don’t exist. That crazy great uncle who did something scandalous in the 1920’s – you share just as many genes with him as with his upstanding law-abiding siblings. Note any cancer or possible cancer, not just breast cancer. Some genes are identified by a pattern of several different types. Note any unusual and possibly genetic disease. Even if all you know is that someone dies of “female issues” said in a whisper at a family reunion years ago, put it on your map. A female relative may have died of breast or ovarian cancer before it was acceptable to talk about it. A male relative may have actually died of breast cancer that spread but was listed as something else. While you are at it note things like heart disease that can also be inherited. Share your map with your family. It is important for your overall health, not just for cancer risk.

Investigate Your Genes: If you have a family history of any type of cancer, consider genetic counseling and testing. New genes are being discovered all of the time. Just since I was tested 2 years ago the number of genes on a basic screening test for breast cancer has more than doubled. If at all possible get genetic counseling as they will be able to go over your family history and pinpoint things that are risk factors that you might not expect. For example the fact that I have a very large noggin was a clue to a possible family history of PTEN. One of the funniest moments during treatment was watching a genetic counseling intern try to figure out how to politely tell me she needed to measure the circumference of my head without saying she thought it was rather large. I tested negative for PTEN, but they suspect a similar gene at work that they just haven’t discovered yet. Also a family history of other types of cancer may point to a gene that also increases the risk of breast cancer.

Explore Known Risk Factors: Educate yourself about known risks for breast cancer and make a personal medical history noting any risk factors you may have. Hopefully we will have better risk assessment tools soon but in the meantime note anything that may be relevant to you personally so you aren’t trying to remember things on the fly at your checkup. Here is a link to a list of risk factors from The American Cancer Society. A couple that you need to ask your older relatives about – If you were born from 1938-1971 were you a DES baby? Were any of your ancestors Jewish people of Ashkenazi (Eastern Europe) origin? I have several friends who did not find out that they had these risk factors until after they were diagnosed with breast cancer. There are also a lot of myths about breast cancer risk. Just in case you were wondering I did not get breast cancer because I ate too much sugar or wore an underwire bra and neither will you.

Educate Yourself:   Read about the limitations and benefits of current screening options. Where do you fall on the scale from “I’d rather have a million false positives biopsies than take the chance of missing a real one.” to “Being called in for repeated testing and biopsies would send me over the edge.” What scares you about breast cancer and breast cancer screening? Do you think about it very much? Did my diagnosis freak you out? Your own personality and reaction to risk will influence how you feel about screening. If you do not have many risk factors, they may weigh more heavily in your screening decision. Don’t make decisions based on fear.  Acknowledge your fears and then make a decision based on knowledge. Screening isn’t preventative and it isn’t perfect. It doesn’t keep you from getting cancer and it doesn’t always detect it either. It does help find it earlier when it may be easier to treat.

Know your body. Listen to it. If you feel something is wrong, get checked. Don’t wait until the whisper becomes a shout. Breast cancer is not always a lump. Any changes in the breast should be checked out. If you are under 40, don’t let anyone tell you that you are too young for breast cancer. It is rare, but younger women and men tend to have more aggressive types. I have heard way too many stories of delays in diagnosis and treatment because doctors didn’t listen to younger patients. And yes, this applies to men too. Breast cancer in men is relatively rare, but tends to be caught later because men don’t realize it is a possibility and ignore early warning signs.

Treat Yourself Well: The two biggest risk factors for breast cancer are being female and getting older, both completely out of our control. There are a few risk factors for breast cancer after the age of 55 that you can influence. Addressing those issues will also help your overall health. You only get one body, so treat it kindly. Eat real food. Limit alcohol. Quit smoking. Find something you like to do and move your body every day. You don’t need to be rail thin, a vegan or a marathon runner. You just need to make better little choices that add up. I love you and want you to be around for a long time. We still have so many adventures waiting!

See Your Doctor: If you don’t already have a doctor you trust, find one. Take your family history and personal medical information to your checkup and discuss them with your doctor. Together you can come up with a screening program that is right for you. While you are at it you can come up with an overall plan for your health. Whether we like it or not, we are getting older. Our bodies are becoming more high maintenance. We may feel 20 inside but our body doesn’t always agree. We need to take good care of ourselves. Once you have a plan in place, follow it. I know sometimes it seems like crawling under the bed and singing “La la la la la…” is preferable but sometimes we have to be grownups. Put on your big girl panties – or your big boys briefs – and check off all the stuff on your medical maintenance list.

Take a Deep Breath: Congratulations! Take a deep breath, pat yourself on the back for an excellent display of adulting and get back to living life. I think sometimes we conveniently forget the fact that we are all going to die sometime. We let fear of dying or fear of something like cancer take up way too much space in our heads. We believe we have a lot more control over life than we actually do. Take control of the things that you are able to and let the rest go. Cancer doesn’t happen to people because they didn’t worry about it enough. It just happens. When my time comes I hope to come flying around third and slide into home with my hair flying, knees scraped, streaked with mud and grinning ear to ear.   I am hoping that will be sometime after 2068 when I will reach the ripe old age of 100. I hope you will all be out there on the playing field with me, but I know that some will be in the stands cheering me home while I will be cheering from behind home plate for some of you when it is your turn. First Descents (a charity focused on young cancer patients) has the motto “Out Living It”. My FD tribe also uses “Out Living It Together”. That is what I wish for all of us – that we get out there and live this life together. Tomorrow is never guaranteed but we always have today. Let’s get out there and live it!

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