Post #37…. in which I get all bossy and up in your stuff
Here’s a copy of an email I just sent to my lovely and wonderful support group, in response to recent news reports about some government panel’s new mammographic screening recommendations.
Y’all have probably been hearing the news about the government panel that just issued new recommendations for mammographic screening, and what they said was: Don’t worry about getting mammograms every year when you turn 40. Just wait til you’re 50. Some people have also gotten the idea that it’s not worth it to do self-exams, either.
I’ve been reading a lot of reactions and debate about this recommendation from all the folks in my various cancer communities, and here’s what they (and I) think:
These guidelines are based on some kind of huge “public health” financial model and do not actually apply to individual people. For most individuals, the most prudent thing to do is go ahead and get mammograms starting at 40. Or before that if you notice anything or feel worried. And definitely continue to do self-exams.
Here are some facts to take into account:
Most cancers and recurrences are found by patients, not by doctors or through screenings. (so do self-exams!)
Most women who die of breast cancer were not receiving annual mammograms. (so get mammograms!)
Most women who develop breast cancer have no family history of the disease. (you may be at risk even if you don’t know it!)
Men can get breast cancer too. (so if you think something’s going on, get it checked out!)
It doesn’t have to be a lump to be cancer. Monitor any change in the color, shape, texture, appearance of breast tissue. IBC, for example, often starts out looking like a rash or a bug bite. If you notice any change that lasts for more than two weeks, see a doctor and ask them to rule out cancer.
Here are some statements that doctors sometimes make but that do not count as ruling out cancer:
“If it hurts, it’s not cancer.” (sometimes cancer hurts. Why wouldn’t it?)
“If it responds, even slightly, to antibiotics, it’s not cancer.” (Trust me, this is not necessarily true. If it does not respond completely to antibiotics, it may be something other than an infection. Get a mammogram. If that doesn’t show anything, get a biopsy. Find out what it is.)
“If you had cancer, it would show up on the mammogram.” (not necessarily: IBC and some other types of breast cancer can be difficult or impossible to detect on a mammogram. If you have a clear mammogram and nothing else is going on, congratulations! If you are still concerned about changes you have noticed in your breast, keep going. A clear mammogram is good, but if you still have questions, get them answered.)
“You’re too young to get breast cancer.” (The youngest breast cancer patient is not even 12 years old yet. If she’s not too young, you’re not too young.)
I don’t usually send out bossy emails like this but the recent news is so concerning to me because even the people making the recommendations admit that lives will be lost. Mammograms are not fun, and it can be a huge relief to hear that the experts say you don’t have to start getting them yet. But I encourage you to do more research before you decide to wait til you’re 50 to start being screened. Find out what your doctor thinks. I don’t want any of you to have to go through what I’ve gone through. I was 37 when I was diagnosed, and I am the first person in my family to get cancer. I love you, so please take care of yourselves.
December 17th, 2009 at 5:32 am
I guess most of the scenarios you describe fall under what is called a diagnostic mammogram. You find a lump, a callous, a rough spot, notice an inverted nipple, etc. You need a mammogram.
A screening one is when not a thing is wrong but you want a check up. Unfortunately mammograms are just not as reliable as we could wish. They often miss real things and very often suggest a problem when there is none. They give excess radiation to the breast – just the area that can cause cancer (after ten EXTRA years of this – uh oh for some).
I’m the Florida Field Coordinator for the National Breast Cancer Coalition, serve with many other groups, and founder of http://www.annieappleseedproject.org
I think our current medical system! is absurd and the healthcare bills may make things worse. But I do think holding off on mammograms is a pretty good idea. Eat lots of fruits and vegetables, take walk everyday, find a way to relax for 20 minutes and you can reduce your risk of all cancer and heart disease. Respectfully,
December 17th, 2009 at 9:29 am
Ann,
Thanks for your comment. I definitely agree that women should do research to determine whether or not it makes sense to get a mammogram at an earlier age, and how the risks balance against the benefits. I am concerned about the levels of radiation exposure caused by routine annual screening mammograms. But I am also concerned about blanket statements telling women to wait until they’re 50. There have been very few improvements in survival for cancer patients between the ages of 20 and 40 and I’m afraid this recommendation could help move that age up to 50. A lot of people talk about family history as a risk factor for breast cancer but the fact is that most women who get breast cancer have no family history, and unfortunately we don’t know who is at risk. I think when and whether to get mammograms is a decision women should research and make with their doctors. You’re absolutely right, mammograms do nothing to prevent cancer or reduce risk, and they may even raise the risk due to the radiation exposure. Healthy lifestyle choices are key. But I feel like this report recommends sticking your head in the sand, and I definitely think that’s the wrong approach to take.