Breast Cancer Misdiagnosis is Common

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.

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???

Good for you for being your own best advocate!

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 ......

Only when cancer is misdiagnosed, one dies...

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.

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...

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!

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

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. 

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.

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. 

   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.

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.

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

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.