The Scare of My Life

I’ve known for years that mammograms save lives.  It is the reason why I’m vigilant about getting my annual screening, but you don’t often hear women talking about how a mammogram gave them the scare of their lives.

I received a call from my doctor’s office the day after Thanksgiving telling me that a radiologist had seen something suspicious on my mammogram. I spent a week sweating it out before my follow up appointment. I worried about what I would tell my children. I was even reluctant to make plans over the holidays fearing that I would be in the hospital for Christmas.  I tried to clear my head by taking long walks; instead, I found myself using the time to write my own obituary.  Nothing was more chilling than sitting in the waiting room of the diagnostic breast imaging center with a dozen other women dressed in identical hospital gowns. I couldn’t help thinking we were playing a strange game of Russian roulette and some of us might receive news that would change our lives forever.

I’m happy to report that I am one of the lucky ones. I don’t have breast cancer. After five x-rays and an ultrasound, the doctor told me it was a false alarm and to come back next year.

Turns out, false alarms or false positives are fairly common among women who receive screening mammograms. As new American Cancer Society President Dr. Phil Evans points out in his Incoming President editorial, which appeared in our journal CA: A Cancer Journal for Clinicians, in the U.S., if 1,000 women get screened, 100 will get an abnormal result and will be called back for more testing. Of those, two-thirds, or 67, will be found to have nothing wrong right away, while nearly all of the rest will get the all-clear after additional testing, which often includes a biopsy. In the end, three to five of the original 1,000 women will be found to have breast cancer, while nearly 80 will have a false positive result.

Encouraging news, but what can be done about easing the anxiety that goes along with cancer screening and early detection? One solution is to arm yourself with information. I had the benefit of being able to walk down the hallway to quiz my colleague Dr. Otis Brawley, chief medical office of the Society. He was able to walk me through what to expect during the procedure and he reassured me that the odds where in my favor. I also spent some time on line reading up on mammography. You can find detailed information on our website

No doubt thousands of lives are saved every year because of early detection tests for breast cancer, but the reality is, screening isn’t perfect. In time maybe researchers and innovators will find a way to improve technology so fewer women like me will experience the scare of their lives.   

About Judy Fortin

National Director, Media Relations for the American Cancer Society.
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10 Responses to The Scare of My Life

  1. dlb2 says:

    It’s well known that these false alarms can lead to psychological issues – the stress from a false positive can be as severe as a diagnosis of cancer, and even after the all clear, research shows higher levels of concern about cancer and anxiety/fear for sometime into the future.
    I thought I’d have breast screening, a colleague and friend is in remission from breast cancer. I don’t…I never accept the word of a doctor or screening authority, for some shocking reason it is acceptable for them to provide a one-sided sales pitch, rather than properly advise us of risks and actual benefits.
    I was shocked to discover the benefits are not so clear cut and that doctors have been debating this for decades – we know if screening helps anyone, the benefits are small.
    I also found out over-diagnosis is a serious risk factor that is not mentioned to women – it was mentioned here in Australia for the first time recently by a doctor who felt women should know about this risk. Of course, we should and it’s paternalistic and unacceptable that we weren’t told about it many years ago.

    I found informative articles by the Nordic Cochrane Institute and their brochure, “The risks and benefits of mammograms” (at their website) – produced out of concern that women were not being properly advised after they reviewed the screening brochures in many countries.
    I also have to thank Prof Michael Baum, UK breast cancer surgeon, who helped set up the first screening clinic, but is now warning women of the risks and doubtful benefits and has pressured the Govt to conduct a full review of the program. He believes it should be scaled back…
    “Scrap breast cancer screening” in the Guardian (not sure if I can link, so a search should find this article)
    New research (mentioned in the above article) suggests the fall in the death rate is about better treatments, and not screening – although this study has not been mentioned to Aussie women, they simply mentioned a study that supported screening – they “cherry-pick” pro-screening research and ignore everything else – that’s not balanced information, it’s biased information.
    This is not a game, they are playing with our health and well-being.

    I made an informed decision not to have breast screening – any women having screening who has relied on the official brochures should do her own research – you will be shocked and disgusted to find you’ve been misled.
    The decision to screen is a much bigger one that you’ve probably been led to believe and also, annual screening is over-screening which greatly increases the risks – our program is 2 yearly from age 50 to 69. The UK it’s 3 yearly…
    Please, be careful and do your reading….

  2. Sorry for the scare BUT because Early Detection Saves Lives, a scare is still much better than the shock of hearing “I’m sorry to inform you but you have breast cancer” I heard those words 11 years ago, age 40, healthy-eating organic foods and regular exercise, no family history, 15% body fat, and BOOM! it happened.
    Cherie B, Mathews
    Austin, Texas
    http://www.healincomfort.net and .com :)

  3. dawnisasurvivor says:

    I’m sorry you got *The Scare Of Your Life* and that you felt so helpless and spent your time writing your obituary. That is an awful way of dealing with fear, for we know now that breast cancer is not a death sentence. For women who have gotten *The Shock Of Their Life* by hearing the words, “*You Have Breast Cancer” STILL should not be writing their obituaries! Many women are surviving. Early detection, yes, is the key. I am one of the “3-5 original” women who went through the additional screening, only to found out she HAD breast cancer. This happened to me less than 6 months ago, at the ripe old age of 40. I was otherwise the picture of health. I have had mammograms before and they were always clean. But this time, things were different, and it all changed within 12 months. Upon hearing those words, and having to relay the news to my husband, and to my elderly parents, and then having to go through the process of somehow explaining to my 4 and 7 year old sons, I never, EVER once decided to write an obituary! That is just obsurd. Because of early dectection, not only am I a survivor, but after my surgery I didn’t need any additonal chemo therapies. I did undergo a nipple sparing double mastectomy, and thankfully for my wonderful doctors, and the grace of God, I look great and feel fantastic. My second and final surgery is in 23 more days. But I am already CANCER FREE. Yes, it is true!! I felt so compelled to comment on your blog, because there are many women out there who have survived and endured more than I have, and still BEAT this horrible disease. Early detection, even at the risk of many having to go through additional testing and getting a *scare*, is STILL worth the lives it saves. I believe that in the future, screenings will only become more and more advanced. Women need to put things into perpective anytime they get a check up and not to be *afraid* of any result they may get. I hope someone is reading my comment right now and I have given them the gift of HOPE!!Peace Out, Ladies!

  4. I was one of the ones who it was a false alarm but I got to the biopsy stage. I am 37 years. It was the scariest time in my life. People and Dr.s can tell you all they want that it’s most likely nothing but the what if’s will get you until you know the results. Luckily my dr. called to give me the good news on News Years Day. It’s been the best year of my life so far!

  5. Judy,
    Thanks for sharing your story with us. I heard someone say once that every time a woman has a mammogram she confronts her mortality. I think that is true, especially when you are hanging around in a closet-sized cubicle, dressed in a thin cotton gown while the radiologist looks at your images. Then, if someone pops their head in the door to say, “can you stay for a few moments?” much of what you know about cancer comes to a screeching halt. Hell does freeze over.

    We can all “know” a lot about cancer intellectually. It’s another thing entirely when the beam drops on you. You took a walk in that trench. I’m thrilled you were able to right yourself on the other side with a clean bill of health.

    Take care,
    Jody

  6. dlb2 says:

    A mammogram at 37 – not surprised you got a call-back – the breasts are too dense for screening before age 50. Some women want screening from age 40, but these women are now being encouraged to wait in this country. There is a great decision-making tool online that can help those aged 40-49 make an informed decision about screening. It’s by Dr Alexandra Barrett.
    http://www.mammogram.med.usyd.edu.au/
    I understand they didn’t prepare one for older women as it would have conflicted with the national screening program and their attempts to get 70% of women aged 50-69 screened…I disagree with that…every woman is entitled to the facts. The target will be missed, more women are concerned about mammograms and just over 50% are taking up the offer here…

    We had more young women coming forward for mammograms after Kylie Minogue was diagnosed, but most doctors warn them, quite rightly, that it’s not recommended for young women for very sound reasons. I personally think we need to be cautious with screening and not to assume all screening is right for us and definitely more is not better…

    A family friend has just been diagnosed with very early breast cancer in the duct and of course, these cancers usually don’t progress – we didn’t know about DCIS until we started screening – so now she’ll have the full cancer treatment and her daughter will be branded “high risk” when it’s most unlikely the cancer would ever have bothered her…once something “abnormal” is found though, few are happen to just leave it and wait-and-see…
    The uncertainty with DCIS should be mentioned to women before they screen, not after its been discovered…
    That’s another concern – screening picks up the very small harmless cancers we’ll die with, not from, and misses some of the aggressive fast moving ones. I believe some women are probably helped by screening (the lucky ones!), but nowhere near as many as we thought and that comes with the over-diagnosis and over-treatment of some women. It’s the latter they’re not sure about – is it 30% of those who are diagnosed? Or, 5%…
    Your Dr Gilbert Welch has had a lot to say on the subject, I’d recommend his books – particularly, “Over-diagnosed”.

    Whatever we decide to do is our business, but I do worry about the lack of real information women receive – it was only 2 weeks ago that over-diagnosis and uncertain benefit hit the papers here (Australia) – doctors have been debating the issue behind closed doors for many years, finally a female doctor/researcher felt morally bound to mention it to women. We need some respect for informed consent in women’s cancer screening, they manage it for prostate screening, so I can’t see why it’s resisted for women.

  7. dawnisasurvivor says:

    clearly “dlb2” above is a well read Aussie woman. But, I wonder what are her credentials which make her so willing to advocate for women NOT to be screened?
    I might also point out the term “False Positive” in Judy’s orginial story, and some the comments following, is misused. Unless one has been told by a doctor, “You have breast cancer” and then, after additional testing has been told, “Oops, sorry, we were wrong, you actually don’t have breast cancer”, one has not been given a “False Positive”. Being asked to come back for addtional testing, including a biopsy, is not a diagnosis. In these cases radiologists have seen something suspicious in a preliminary mammogram and would like to test further. Is it nerve wracking for the patient? Of course. But you have not been given a “false positive”. Let’s just get that into perspective. Getting a scare and needing additional testing does not have the same impact that getting a diagnosis does.
    It is very important that women take their healthcare into their own hands and become informed. TRUE. You should calculate your risk factors with your doctor. You should be empowered enough to make a knowledgeable decision. There should not be a blanket rule that all women at a certain age should or shouldn’t get screened. I, for one, would not want then to change the recommended age of 40 for a baseline mammogram to an older age. Women who are younger than 40 and who do not have the luxury of early screening get cancer. And many aren’t fortunate with the outcome because it goes undetected.
    “dlb2” above writes about DCIS and that it is a “harmless cancer”. Really? I beg to differ. (Maybe it’s harmless if you are 90 and get it, but it’s not so harmless if you are young and vibrant! dlb2, I wish you nothing but wellness, but you are very insensitive to women who have been diagnosed to say “it would most unlikely never bother her”. You should not be so flippant with your opinion, no matter how “informed” you believe it to be.) There are many different grades of DCIS. I had an aggressive grade. I am 40. I was not going to simply roll the dice, and wait and see. My OBGYN, who I have been a patient of 20 years, as well as many other good doctors and nurses whom I am good friends with all gave me the same advice: “You will be fine, BUT, you have to get this taken care of.” I owed it to myself and all those who love me to be agressive against it. My life is too valuable.
    At the end of it all, one has to be at peace with ones decision. Get a mammogram or not? I can say I am at peace with my decisions. Complete Peace. This is a disease which doesn’t have to take you if it is caught early. Stop Cancer in its tracks.

  8. Four years ago I had a regular mammogram screening in January and was asked to stay for more pictures. Yes it made me nervous, but all I kept thinking was thank god I practice preventive medicine and see my doctors regularly. After 2 hours, I was given the okay and sent home. Nine months later when I found the lump in my breast I was diagnosed with stage one triple negative carcinoma. When I met with my doctors I questioned them if this was in the same spot the mammography center was concerned with back in January. One of the surgeons said it was possible.
    At first I was really at angry at why they had missed it, but of course since then I have learned so much more about detection and know that no method is perfect. Do mammograms make me nervous, sure, would I ever stop being screened because I might be given a scare? Are you kidding! A few hours or even days of worry far outweigh the benefits of early detection. Ask anyone who has cancer if they would trade a few days of being scared with an earlier diagnosis and I think you’ll get the later. Ask any women who has found her cancer through a breast self exam if she thinks they should stop being recommended. You know where I am going.
    We have come a long way in our detection methods, and yes there is still a long road ahead. Perhaps we need to focus our prevention and awareness campaigns on just how far we’ve come in treatments so the next woman who is given a false scare feels more assured in her outcomes.

  9. dlb2 says:

    Dawn, I don’t tell women what to do, that’s up to them, but every woman has the right to accurate and complete information and has a legal right to make an informed choice.
    The Nordic Cochrane Institute, a highly regarded independent medical research company, have reviewed all of the evidence and concluded breast screening saves few lives and is linked to significant over-diagnosis. This is a very serious matter, putting women through surgery, radiation and chemo unnecessarily.
    This has been a hot debate within the medical profession for quite a few years, but they chose not to mention it to women, which I think is unacceptable.
    I have chosen not to have mammograms, others can decide for themselves, but no woman should act on fear and misinformation.
    The UK is doing a full review after many senior doctors called for screening to be halted, including Prof Michael Baum, eminent breast cancer surgeon, who helped set up the first breast screening clinic. Sadly, there are powerful vested interests in breast screening and it may take a long time to get informed consent on the agenda – they don’t want women to have the facts, it’s not in their best interests. DCIS “usually” doesn’t progress – most women die with it, not from it…I believe women should understand they may face this dilemma before they screen and not be hit with the DCIS dilemma when “something has been found” – that’s not a great way to make a decision.
    False positives do cause significant distress to many women – studies have shown anxiety levels can match those of women who’ve been diagnosed with actual breast cancer.
    http://psychcentral.com/news/2011/01/14/false-positive-mammogram-worse-than-the-real-thing-for-many-women/22655.html

    We must know what we may face BEFORE we agree to test and that can only happen with real and complete information. I know some American doctors are more aggressive with their treatments and I assume part of that reason is defensive medicine – I’ve heard of some American women having very aggressive treatments for DCIS that would not be done in the UK or Australia.
    Women are being harmed by cancer screening (and so are men) – screening is a gamble and therefore only one person can say it’s right for them – the individual, but we need the facts to do that…I hope that makes sense.
    These are my concerns…good luck to you, Dawn, and I hope you remain fit and well.
    Every woman should be provided with an unbiased summary of the evidence and that has never happened in women’s cancer screening. (it happened here for men, they got risk information very quickly for prostate screening and doctors were reminded to obtain informed consent – why the double standard?)
    So while women are denied informed consent, I feel compelled to keep writing to doctors, the govt and trying to raise awareness.
    Here are a couple of refs that may help you understand my concerns and they’re shared by many senior doctors. (if you’re interested you can follow the commentary in these articles back to the original medical journal references)
    http://www.drbriffa.com/2011/10/27/uk-government-finally-does-the-decent-thing-over-mammography/
    http://www.guardian.co.uk/commentisfree/2011/aug/02/breast-cancer-screening?INTCMP=SRCH
    http://www.cochrane.dk/
    (“The risks and benefits of mammograms” by the NCI – a complete review of all of the evidence)
    http://www.cochrane.org/news/blog/mammography-screening-ten-years-reflections-decade-2001-review

  10. dlb2 says:

    That should read – Nordic Cochrane Institute, a highly regarded independent medical research GROUP, not company.

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