early detection

Breast Cancer Misdiagnosis is Common

Robin Gray RN Community Member March 07, 2009
  •       At least ten thousand women per year are misdiagnosed with breast cancer! Robin M. Gray, a young registered nurse from Upstate New York who had breast cancer misdiagnosed for seventeen long months, can tell you that a misdiagnosis can happen to anyone, even when you think you are in the hands of trusted and experienced physicians. Like many women, Robin trusted her doctors when she was told that her breast lump was benign. However, seventeen months after Robin first saw a doctor for her breast lump; she was delayed diagnosed with breast cancer! Due to the late diagnosis, Robin required many more surgeries and chemotherapy, as cancer was found to have spread to her lymph node.

     

          Robin's story is not uncommon. Often physicians do not do all the correct tests and aggressive procedures to adequately rule out cancer, especially in young women, thinking cancer is not probable. Of course a missed or delayed cancer diagnosis is dangerous for any age, especially for younger women who often have more aggressive cancer subtypes, where even a small delay may gravely impact on prognosis.

     

         Today, Robin is a seven year survivor. She feels miraculously blessed to be here enjoying her family of three boys and a loving husband. She also feels a calling to turn her tragic experiences into something positive for others. In a new book Robin recently published, BREAST LUMP WHAT LIES BENEATH, she educates women about the common place of breast cancer misdiagnosis and guides women in how to obtain the correct diagnosis. Robin also believes her story will encourage those who have already suffered a misdiagnosis or anyone facing the crisis of a cancer diagnosis. A percentage of the proceeds from her book will go to the Young Survivor Coalition and The Breast Cancer Research Foundation. The book is available to purchase from Amazon.com.

26 Comments
  • Anonymous
    tinker
    Feb. 14, 2014

    Hello im 33 I have went to all kinds of different doctors all tell me is that I am too young for breast cancer I went to a women's clinic and they found a mass which was Dash 2 centimeters I want to see another doctor and they told me that it was just a cyst which was there for two an half maybe 3 years an now to here them say last year it just disappeared...

    RHMLucky777

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    Hello im 33 I have went to all kinds of different doctors all tell me is that I am too young for breast cancer I went to a women's clinic and they found a mass which was Dash 2 centimeters I want to see another doctor and they told me that it was just a cyst which was there for two an half maybe 3 years an now to here them say last year it just disappeared all my discomfort is and the right breast only maybe you can help me to understand what might be going on

    • Phyllis Johnson
      Health Guide
      Feb. 14, 2014

      Tinker,

      First of all, if a doctor tells you that you are too young to have breast cancer, you need to look for a different doctor.  It is more accurate to say, "This lump is probably a cyst because that is the most common type of lump in women your age."  Then the doctor needs to order an ultrasound to make sure the lump is a cyst.  Ultrasounds...

      RHMLucky777

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      Tinker,

      First of all, if a doctor tells you that you are too young to have breast cancer, you need to look for a different doctor.  It is more accurate to say, "This lump is probably a cyst because that is the most common type of lump in women your age."  Then the doctor needs to order an ultrasound to make sure the lump is a cyst.  Ultrasounds are very good at distinguishing between a solid lump that MIGHT be cancer and a harmless cyst.  If an ultrasound shows that the lump is a cyst, you don't need to worry.  It sounds like that is what happened to you since the lump seems to have disappeared, which is common with cysts.  They can come and go--sometimes within a month, sometimes over a period of years. If the lump is solid, then the doctor needs to order different tests.  Most solid lumps in women your age are fibroadenomas, but the doctor still needs to test that out with imaging tests or a biopsy.  If you are still having problems in that breast even though the lump has gone away, the good news is that you probably don't have breast cancer.  Consulting a breast specialist could be a good way to find out more about what might be causing the problems.

  • Anonymous
    Leeza
    Mar. 22, 2009

    Thank you Robin for sharing your story.  You are an inspiration and helping us all!  Hugs to you and your family!

  • Anonymous
    Confused
    Mar. 18, 2009

    I am late 30's and less than past year I have had several mams, ultrasounds and a biopsy on my left breast.  One path report states "fibroademoma".  I had no pain but returned months later and when I requested my latest med record the doctor wrote "benign mastodynia".  Dr. told me to return in 1 year and that pain is "good" and "common".  I...

    RHMLucky777

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    I am late 30's and less than past year I have had several mams, ultrasounds and a biopsy on my left breast.  One path report states "fibroademoma".  I had no pain but returned months later and when I requested my latest med record the doctor wrote "benign mastodynia".  Dr. told me to return in 1 year and that pain is "good" and "common".  I had to remind the doctor she booked me prior for a 6 month follow-up and questioned if this was now necessary given she just told me one year.  The doctor quickly opened my file and corrected herself stating "Oh yes, come back in 6 months because we cannot rule out cancer".  I had no pain prior with all my other tests but do not know what questions to ask.  The pain is always in the diagnosed lump.  Besides I waited over 2+ hours for my appointment and she took 2+ minutes with me, my body just doesn't feel "right".  How easy is it to get an unbiased second opinion?  Are fibroademoma and mastodynia the same thing?

    • Anonymous
      Robin Gray RN
      Mar. 19, 2009

      I definately would get a second opinion from someone who is going to spend more than two minutes time with you. Remember they can name your lump anything they want, fibroadenoma, fibrocystic, or any other benign name. However, unless they have done the appropriate tests to rule out cancer, the name assigned may be meaningless.Please take the time to get the...

      RHMLucky777

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      I definately would get a second opinion from someone who is going to spend more than two minutes time with you. Remember they can name your lump anything they want, fibroadenoma, fibrocystic, or any other benign name. However, unless they have done the appropriate tests to rule out cancer, the name assigned may be meaningless.Please take the time to get the bottom of this as soon as you can. My book gives you a guide to help get correct diagnosis and lists common diagnostic errors doctors make in breast assessment. Best of luck to you and please be proactive!

    • Robin Gray RN
      Mar. 19, 2009

      Just want to remind, that sometimes biopsies are misread or miss sampling cancerous parts of breast lumps. Some feel safest removing a persistent lump.

    • Cindy
      Mar. 20, 2009

      I would like to add my two cents for what it is worth. My cousin Robin was told she didn't have cancer. She kept going back in and telling them she didn't fell well. They told her you are a drunk. Go home. Nothing is wrong with you. She kept going back in saying I know something is wrong. My cousin was a beautiful, young mother, she died at 36 years old. She...

      RHMLucky777

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      I would like to add my two cents for what it is worth. My cousin Robin was told she didn't have cancer. She kept going back in and telling them she didn't fell well. They told her you are a drunk. Go home. Nothing is wrong with you. She kept going back in saying I know something is wrong. My cousin was a beautiful, young mother, she died at 36 years old. She had 4 children. They mixed her chart up with another patient. I have had two cousins die from breast cancer. I am a two time breast cancer survivor. I am 54 years old. My other cousin died at 49 years old. She got breast cancer the first time at 35 years old. She died because she got a lump in her shoulder and the idiot doctors didn't realize it was cancer when she went in. Then it spread thru her whole body just like it did to our other cousin. My other cousin and I seem to be luckier I had to beg my cousin to have a mastectomy. She thought she had a perfectly good breast even though her sister is one of the cousins that died. I had to beg her doctor to take it off. He thought she could have a lumpectomy. My 28 year old daughter keeps getting lumps the doctors some of them keep saying she is too young for a mamogram. Hey our family is dying. My mom is a breast cancer survivor. Her great grandmother on her dads side died of breast cancer. Ovarian cancer. Lung Cancer and Throat Cancer also run in our family. Only one of those family members is still alive but she continues to smoke and drink. One cousin is still alive I must admit that just had something done but I haven't heard what yet. She just had something taken out just in case call her crazy. Another just had a breast biopsy and waiting to hear. I have great doctors but I must admit I also have great insurance. But also doctors who really care. They have most of them been with me for a long time. So I would rather have my breasts taken off than be dead. My daughter has decided to have hers taken off if there is any chance at all of cancer. Her father and her boyfriend think she is crazy but better crazy than dead like Robin. Robin had already had one breast removed from cancer what would it have taken for them to take another look than to call her crazy. Lauren has another lump and she is going to go have another look taken as soon as she gets this new insurance. Call her crazy. But she has two small children that need there mother. My other cousin left behind several children also. I miss my cousins. 

    • Anonymous
      Confused
      Mar. 20, 2009

      Thank you Cindy for sharing your story.  I am sorry for the loss of your cousin, Robin, and the toll that cancer has taken on you and your family.  It is very frustrating to hear so many stories of doctors reacting as if they are treating a dog at a vet that is having his nails clipped.  I too have a history of cancer in my family and the oncologist...

      RHMLucky777

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      Thank you Cindy for sharing your story.  I am sorry for the loss of your cousin, Robin, and the toll that cancer has taken on you and your family.  It is very frustrating to hear so many stories of doctors reacting as if they are treating a dog at a vet that is having his nails clipped.  I too have a history of cancer in my family and the oncologist knows this.  My mother-in-law (and friend) died one year ago next month and I can relate first hand the devastation that cancer takes on a person and family.  As I mentioned in my reply to Robin Gray, it is very disheartening for myself to have to weigh out insurance versus my health.  Currently if I choose to have the lump removed, it is considered elective surgery which my insurance won't cover ANY.  I am looking into other doctors and hope they will be more open minded and actually listen to concerns and my medical history as well as take a modern pro-active approach for prevention.  Thank you Cindy and Robin Gray for your response.  It is good to speak with others who understand.

    • Anonymous
      Confused
      Mar. 20, 2009

      Thank you for both of your replies.  All good advice.  I will be getting your book.  Unfortunately poor insurance makes it very hard to be proactive.  It's like you have to weigh out losing your house and everything little think you own versus your life.  It's a sad place we live in when that is the case. 

    • Robin Gray RN
      Mar. 20, 2009

         The various tests to help rule out bresat cancer are discussed in my book, as well as their short-comings and error percentages. Best of luck and good healh to you.

    • Robin Gray RN
      Mar. 22, 2009

      http://www.kristylasch.org/

       

      PS Just also wanted to post this link, which is a charity link that helps young women with breast problems pay medical bills and expenses. Hope this helps.

    • Anonymous
      suezzyw46
      Apr. 21, 2012

      Hi Robin, I am sorry to hear about all you went through, but glad you came out of it on top! I am 46 years old. I have terrible pain off and on in both breasts, swelling in one, rashes that come and go, and burning in my nipples. I went to the dr. yesterday. They did a mammogram and the dr. said that he thought I had mammary gland ectasia. Then, while I was...

      RHMLucky777

      Read More

      Hi Robin, I am sorry to hear about all you went through, but glad you came out of it on top! I am 46 years old. I have terrible pain off and on in both breasts, swelling in one, rashes that come and go, and burning in my nipples. I went to the dr. yesterday. They did a mammogram and the dr. said that he thought I had mammary gland ectasia. Then, while I was in the lab they called me back. The radiologist wanted a second mammo on my right side. My dr. also ordered an ultrasound. They had found "calcifications" they wanted a second look at. They did the repeat mammo on the right side and said the area "didn't look like cancer" and they would wait and do another mammo in 6 months. He said the ultrasound wasn't necessary. My dr. put me on doxycycline for the mammory gland ectasia and said if it doesn't improve he'll send me to a surgeon. I'm not the paranoid type, but read so much about this, and so many times see that women are misdiagnosed, so I worry a bit. My diagnosis is said to mimic the symptoms of breast cancer, so how can they be sure with just the mammo? Do you think I should ask them to do more?

      Thank you!

    • Phyllis Johnson
      Health Guide
      Apr. 21, 2012

      Sue, it sounds like your doctor has a preliminary diagnosis--mammary gland ectasia--and a Plan B of steps to take if the preliminary diagnosis does not check out.  If you don't see a significant improvement with the antibiotic, it will be time to move on to Plan B.  You might want to ask for a referral to a doctor who has lots of experience in diagnosing...

      RHMLucky777

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      Sue, it sounds like your doctor has a preliminary diagnosis--mammary gland ectasia--and a Plan B of steps to take if the preliminary diagnosis does not check out.  If you don't see a significant improvement with the antibiotic, it will be time to move on to Plan B.  You might want to ask for a referral to a doctor who has lots of experience in diagnosing breast problems that are not typical if your symptoms continue.  That would probably mean a visit with a surgeon associated with a large hospital or comprehensive cancer center. 

      No doctor can be an expert in diagnosing every problem.  I believe that many cases of misdiagnosis occur when a doctor doesn't refer to a more specialized expert quickly enough. 

      But it is borrowing trouble to look that far ahead right now.  It sounds like your doctor has a good diagnostic plan in place.  Many cases of mammary gland ectasia clear up on their own, so we will hope that is what happens and that you are soon fine. 

    • Anonymous
      Confused
      Mar. 30, 2009

      Thank you for all the great information.  I look forward to reading your book.

    • Anonymous
      Confused
      Apr. 02, 2009

      Well I went for my second opinion today which was also supposed to be my 6 month follow-up for my mam & ultrasound.  When I arrived, they told me that the mam was canceled.  The new doctor decided after reading my medical records from the last doctor that it wasn't necessary.  Although the nurse told me in private quarters even she didn't...

      RHMLucky777

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      Well I went for my second opinion today which was also supposed to be my 6 month follow-up for my mam & ultrasound.  When I arrived, they told me that the mam was canceled.  The new doctor decided after reading my medical records from the last doctor that it wasn't necessary.  Although the nurse told me in private quarters even she didn't understand the results...and assured me I was at the right place to get answers...the new doctor told me he WOULD NOT do the tests for me and I was welcome to come back in a year.  Now what?  He never even looked at my films which I had with me because "he is definitely going to want to see those".  Is this like some cult where doctor's don't want to question each other?  It was for a second opinion and I was due for my next check-up anyhow.  The doctor was basically an a-hole who was going to bill for an office visit just to tell me he canceled my tests and didn't want to be bothered.  It is soooo frustrating.  I just assume die of cancer before I go see another doctor.  What's the point.  Removing my lump is out of the question.  I don't get it.  The office told me they remove them all the time even if it is to help with the anxiety of the patient that has it.  What a joke.  

    • Confused
      Jan. 31, 2013

      Hi Robyn

       

      I read your story and I am truly sorry about your misdiagnose. I had 2 sisters diagnosed with breast cancer (age 39 and 62), the youngest  had mastectomy with lymph nodes removed she  is a survivor for more than 12 years. Thank God!! Also my aunt (dads side) died ate age 50 of BC

      it was a small lump, got removed 3 years later her cancer...

      RHMLucky777

      Read More

      Hi Robyn

       

      I read your story and I am truly sorry about your misdiagnose. I had 2 sisters diagnosed with breast cancer (age 39 and 62), the youngest  had mastectomy with lymph nodes removed she  is a survivor for more than 12 years. Thank God!! Also my aunt (dads side) died ate age 50 of BC

      it was a small lump, got removed 3 years later her cancer had spread to other organs. My aunt died 25 years ago.

      My other sister was diagnosed about 2 years ago and just finished radiation. My last mammo they saw something got called back, they took 2 pictures and the computer system went down could not read them, sent me home and apologized with a Starbucks card for the trouble. They called me back that same afternoon and told me that was imcomplete and they need a ultrassound. After that the radiologist spoke with me and said "good news is just a cyst". Well I felt better after that and could not read the results they gave to me there, since it was dark. It says "prob benign, prob not cancer". I spoke wih my sisters and they insisted that I had to seek second opinion. I went to Obgyn and she told me not to worry about and advice me to do a genetic test and wait for 6 months follow up. I search everyday and we see misdiagnoses all the time. I am due to my follow up in ]March. I just dont want to have a diagnose that is going to change my life forever instead of having early detection and being poactive about it. So I am praying to God that when I go back in March they say it is for sure just "anachoic cyst".  I am 47 years old on HRT for premenopause.

    • PJ Hamel
      Health Guide
      Jan. 31, 2013

      I'm glad you're following up with this. Less than 1% of women actually carry the genetic mutation that can lead to breast cancer, so odds are you'll get good news on that front. I hope your followup mammogram brings good news, as well. Take care - PJH

  • Anonymous
    Arizona95
    Mar. 10, 2009

    Unfortunately, not only can breast cancer be misdiagnosed as something else-  it can also be overdiagnosed in which case the lesion is a benign process.  I fell victim of the latter case, not learning until I had already had a mastectomy- that I did not in fact have cancer.  I was very depressed, had a poor reconstruction with many complications...

    RHMLucky777

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    Unfortunately, not only can breast cancer be misdiagnosed as something else-  it can also be overdiagnosed in which case the lesion is a benign process.  I fell victim of the latter case, not learning until I had already had a mastectomy- that I did not in fact have cancer.  I was very depressed, had a poor reconstruction with many complications and infections.  The end result was a disaster, and I was left not only physically deformed, with lymphadema, abdominal trauma and hernias from a failed TRAM flap reconstruction-  I am only able to work part time due to all the chronic pain

    • Anonymous
      Martha
      Mar. 11, 2009

      Only when cancer is misdiagnosed, one dies...

    • Anonymous
      robin gray rn
      Mar. 12, 2009

      I am sorry for your medical mishap and wish you healing. Too many medical errors happen when it comes to breast assessment, but usually it is the mirror case of your misdiangosis, where cancer is missed. As the next poster states, the later case can lead to worse prognosis, even death.

    • Anonymous
      angela
      Apr. 06, 2009

      How did you find out that you did not have the cancer?  How could the biopsy be wrong along with an MRI or other scanning?  I'm concerned - i'm scheduled for a double mastectomy in 10 days and i'm nervous.  None of the factors do i have for getting breast cancer - except that i have not had any children and i'm 44 years old.   Am i...

      RHMLucky777

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      How did you find out that you did not have the cancer?  How could the biopsy be wrong along with an MRI or other scanning?  I'm concerned - i'm scheduled for a double mastectomy in 10 days and i'm nervous.  None of the factors do i have for getting breast cancer - except that i have not had any children and i'm 44 years old.   Am i possibly having a surgery i don't need?  Can you contact me so we can talk more...

  • Anonymous
    dreamer
    Mar. 10, 2009

    Because I did not have family history, my mamography was negative and no lump, nobody except my G.P.would listen that I had some pain and I knew there was something wrong.

    3 Months later I had my biopsy, it was breast cancer, I was sent to an oncologist that recommended no chemo, or mastectomy.

    I told my doctor that I wanted chemo and a mastectomy, my wish...

    RHMLucky777

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    Because I did not have family history, my mamography was negative and no lump, nobody except my G.P.would listen that I had some pain and I knew there was something wrong.

    3 Months later I had my biopsy, it was breast cancer, I was sent to an oncologist that recommended no chemo, or mastectomy.

    I told my doctor that I wanted chemo and a mastectomy, my wish was granted and I was found that I had another larger tumor , invasive and diferent from the one during the biopsy.

    I am 16 years from that day.

    • Robin Gray RN
      Mar. 10, 2009

      Congratulations on survivoring for 16 years and good for being your own best advocate and seeking out the treatment you needed or you might not be here today to tell of it. I am glad you found your other breast cancer tumor through you pushing for the mastectomy. Best wishes for many more years of surviving.

    • Anonymous
      Barbara Rydesky
      Mar. 19, 2009

      I, too, had no family hx of breast cancer.  My gynecologist sent me to a surgeon after

      my mammogram came back with a suspicious area.  There was no lump, nothing to palpate.  The surgeon told me "not to worry about it....it was NOTHING."  I told him I wanted an MRI to be sure.  He told me "it wasn't necessary...but I insisted! ...

      RHMLucky777

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      I, too, had no family hx of breast cancer.  My gynecologist sent me to a surgeon after

      my mammogram came back with a suspicious area.  There was no lump, nothing to palpate.  The surgeon told me "not to worry about it....it was NOTHING."  I told him I wanted an MRI to be sure.  He told me "it wasn't necessary...but I insisted!  Thank God I did.  I had breast cancer.  I had a double mastectomy in December of 07.  I am a one year survivor.  I know if I waited another year, it would have been in my lymph.

      It was an aggressive, invasive type of cancer.   My thoughts:  Don't take "No" for an answer.  Be proactive! Research and read!!  If  you don't do it, who will???

    • Anonymous
      Robin Gray RN
      Mar. 19, 2009

      Good for you for being your own best advocate!

    • Anonymous
      angela
      Apr. 06, 2009

      I too had been told "dont worry" now - - it's just something we see on the mammo we will watch - another mammo in 6 months.   I should have made the decision not to wait and go ahead with a biopsy. well 6 months later - i now have breast cancer tumor - small in size but the breast MRI showed another tumor closer to center of my chest.  I immediately...

      RHMLucky777

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      I too had been told "dont worry" now - - it's just something we see on the mammo we will watch - another mammo in 6 months.   I should have made the decision not to wait and go ahead with a biopsy. well 6 months later - i now have breast cancer tumor - small in size but the breast MRI showed another tumor closer to center of my chest.  I immediately decided on double mastectomy with implants.  I am scared to death of the pain i will be having and worried about this moving to another area.  The doctor won't know, he says, if there is anything in the lobes yet til after the surgery?  I'm very nervous - i need to be able to talk with someone who has had this surgery so that i can better prepare for the results and post care.  I'm a wreck - - on top of that - - - quitting smoking is another challenge.    I'm trying to stay positive about the surgery - but how could it be that easy?  Remove the breast and that's it?   I can't believe it can only be this.  I'm scared this cancer may be elsewhere as it took years to find ......