Posted on: Jul 31, 2012 07:55 AM
Posts 1 - 23 (23 total)
Jul 31, 2012 08:46 AM JeninMichigan wrote:
Yep this happened to me. I felt a small, very hard lump. Went to the doctor. They ordered a diagnostic mam. They couldn't see it on the mam although the tech could also feel the lump. They took me to ultrasound and the radiologist herself who most recently had a double mastectomy did the ultrasound and said it is a cyst and to come back next year. Six months later I am calling my doctor saying the lump is growing and it is painful. She said it is probably a cyst to and see a surgeon but she would order another diagnostic round of text first. The second time it was obviously cancer and they were all over it. By the time all of this passed and I had surgery and a PET scan, I was stage IV before the first drop of chemo.
Everyone says you need to do something about it (....lawsuit???) Doesn't change where I am at right now.
Jul 31, 2012 09:21 AM, edited Jul 31, 2012 09:22 AM by 4myangels
Jenn, that's awful. You're right it doesn't change anything though.
In my case, my doctor felt the lump and did NOTHING except tell me it's a cyst and then gave me hormones for birth control! I had to ask her how to schedule a mammo since I just turned 40 and wanted to make sure so she told me to just call her office to schedule one and sent me on my way. Since she didn't order any tests, all I had was a screening mammogram and ultrasound. Both were useless due to dense breasts. Results came back negative so I forgot about it. I didn't know at the time that there is a difference between screening and diagnostic testing and I assumed I was fine.
I returned six months later because the lump grew and again she did NOTHING. Told me it was normal for cysts to change. She told me I didn't need any tests and I could have another mammo in six months. I have no family history so I believed her.
I went in again 6 months later and at this point the lump was so big it was visibly bulging but again she told me it was nothing. I was due for my annual screening mammogram, but again I had to schedule it myself. Nothing was ordered for me. This time I got a call back from the radiologists. But, it still took two months to learn it was breast cancer. (an mri finally showed i had cancer all over the breast) A month after that I was restaged to stage IV and treatment started soon after.
Jul 31, 2012 09:45 AM Irocjuju wrote:
I'm sorry you ladies have had to deal with a runaround too. In 2004, I found a lump in my left breast while 6 mos pregnant with my 2nd child @ age 27. Told my OBGYN (in AZ) but she couldn't feel it. Said it was probably a clogged milk duct & we'd check on it after baby was born. A few weeks after delivering, I ended up with bilateral mastitis. Got that treated. Moved home to TX and went for postpartum checkup with OB who delivered my 1st child. He felt lump & sent me for biopsy. While doing the ultrasound guided needle biopsy, my surgeon said he was "quite certain" it was a fibradenoma (b9 cyst) common in women my age after having baby. A few days later, after pathology, he called me in and diagnosed me with BC. Here I am almost 8 yrs later & 35 yrs old. I've only been able to get yearly mammos & ultrasounds due to lack of insurance & low income. I just had them & was told they found a "cyst" in my right breast & wanted to check it again in 6 mos. By the grace if God, the program that helped me get those scans has helped me go to a breast surgeon, get an MRI & I will be having an excisional biopsy. Thankfully, this surgeon (who I just met) is proactive & agrees we need to be thorough & have pathology. He also agrees that I need full scans like PET/CT since I haven't had them in years and am triple negative. I'm really concerned about what could be going on in other parts of my body as well.
So, after that long rant, my point is that we have to be our own advocates. I tell all my doctors that I am not comfortable with just scans & pictures. I NEED pathology. Best wishes & blessings to you! :)
Jul 31, 2012 10:35 AM JeninMichigan wrote:
While it is so true we have to be our own advocate, for so many women who first discover the lumps and the doctors say the mam/ultra sounds show it is just a cyst, do you demand a biopsy. No, you are happy that it is just a cyst. However, like me, when the thing grows or becomes more painful, then you are proactive. My mom had so many cysts in her breast, I had no history of b/c in the family and the thing was painful. Most tumors are not painful but cysts are. ... who would question it and demand a biopsy. In hindsight, I should have but I skipped happily away and relieved to know it was just a cyst. I can see it happening over and over ago to many other women. My oncologist said you cannot kick yourself for not demanding further tests and with dense breasts, it is easy to miss. Not sure what the answer is.
Jul 31, 2012 10:47 AM 1Athena1 wrote:
I suppose this is a question all stages can answer.
My internist felt the lump and immediately called a BS on the telephone and sent me to said BS's office - a three block walk. The BS saw me within minutes, felt the lump, which was hard and amorphous, and remarked "this might be a cyst" BUT he had it tested anyway. He scheduled both a mammogram and an ultrasound, both if which, I believe happened within days.
Jul 31, 2012 11:06 AM Irocjuju wrote:
Hi again Jennifer,
I agree with you. I guess maybe my heart meant to say that no matter how old you are, your family history, etc if you DON'T feel comfortable with screenings & docs opinions, you should ask for further action. When my 1st OB dismissed my lump, I left too thinking "guess I'm ok". I have no family history of BC either. As time progressed, I had a "feeling" it was more than they all thought. So, in retrospect, I find myself reaching out to spread awareness that BC is no longer the "old lady disease" it was once thought to be. I also completely agree with Athena's blurb by her info about having a healthy disrespect for statistics. Again, I'm sorry you're going through this.
Jul 31, 2012 11:40 AM kita wrote:
Yes that's what I was told. They even gave me an ultrasound and still said it was up to me if I wanted it removed. The surgeon would not move up the date to take it out even when I said it was painful. He looked remorseful when he had to tell me it was cancer the day after surgery.
Jul 31, 2012 11:52 AM 4myangels wrote:
Well, unfortunately, I did ask my doctor for additional tests 6 months after a "clean" mammo and u/s to be sure the lump was nothing and she said it wasn't necessary. The thing HAD grown, but she assured me that was normal. How much harder should you push in a situation like this? I didn't know anything about breast cancer at the time. Never in a million years did I believe I could have it. So, when the doctor told me she was confident it was nothing, I remember feeling nothing but relief. It was what I wanted to hear.
Six months later. Same thing. I still hear her saying the words "your cyst is still there." Only this time I went and scheduled a mammogram for myself. I assumed the radiology people would have seen my file showing the "cyst". They didn't so they didn't know what to look for. That's why it still took 2 months to get an offiical dx.
Sorry, just venting. It's really hard to let go of the anger.
Jul 31, 2012 12:56 PM, edited Jul 31, 2012 06:57 PM by 1Athena1
wow, 4myangels, I don't know how one copes with the crap you were dealt. Never apologize for your anger.
Did the doctor at the very least stick a needle to see if the "cyst" could be aspirated? My BS did, two minutes after we first shook hands. Also, my mammogram and u/s showed the lump very clearly but there is no way to know for sure (barring surgery) that it's NOT cancer without an actual biopsy. The doctor should at least have "ruled out" precancerous cells. I had no BC family history either (in fact, no history or ANY cancer).
I would not have done anything differently from you. How is one supposed to know, after all? I just got lucky that I happened to be in excellent hands. At those initial stages, one doesn't want to know - anything! If a doctor tells me, "don't worry, the lump in your body is not the dreaded C but only a cyst" I, too, will heave a huge sigh of relief - especially after two visual laboratory tests. And think nothing more of it. In fact, you showed commendable initiative in insisting on another mammogram.
You have every right to be angry. Any doctor worth half of their little finger knows that 70-80 percent of women (I like this statistic so I'll use it :-) ) who get diagnosed with BC had no family history. My BS said it best after he diagnosed me: Your risk is that you are a woman.
Jul 31, 2012 02:59 PM, edited Jul 31, 2012 02:59 PM by KSkierI have lots of anger. My "cyst" WAS aspirated. I WATCHED the ultrasound guided needle going into my breast, and I SAW the congealed tissue that was pulled out by the syringe. What I don't know is what that doctor did with that tissue. It was never sent for a pathology report; I was dismissed as having an infection related to breastfeeding my 2 month old. This happened TWICE. When I went for a second opinion, doctor number 2 went along with number 1. It wasn't until my breast was huge and the nipple started to turn to one side that I sought a third opinion at a cancer center that a biopsy was done and cancer was found in the nodes. Here I was, tan, athletic, "young" and "healthy" with a newborn, at a cancer center with bald, sick people thinking "I don't belong here". Yep, stage IV - - I had been complaining of the lump in my breast while pregnant, for six months before dx. I am very angry - been trying to let it go but feel that sharing my story may help to prevent it from happening to others.
Jul 31, 2012 03:05 PM susan_02143 wrote:
I am totally horrified by these stories.
I now feel very lucky that my doctor just trusted that I knew my body well enough to know that my lump was a lump. No questions asked.
Jul 31, 2012 03:38 PM SPAMgirl wrote:
I did the opposite. I pointed out the lump to my ob gyn and then told her I thought it was just a clogged milk duct. I had many of them when I was nursing (which cuts your chances of getting breast cancer by 50%.) I had a lump on the other breast, so I did convince myself it was the clogged milk duct. After 18 months, I decided that it was getting bigger and started reading info on the internet. By the feel of it, I knew it was cancer. As soon as a different ob gyn felt it, he sent me straight up to imaging. After the mammogram, they immediately did an ultrasound. They promised that the radiologist would explain what she saw before I left. They showed me how they were pretty certain it was cancer. From 2pm - 4:30pm, I knew my answer. Then they did a months worth of tests before they would perform my surgery. Everyone tells me to stop reading about cancer, but I was able to convince them to give me tests after I explained that I had all the symptoms of breast cancer.
Jul 31, 2012 06:13 PM Gaylene5 wrote:
I found a lump, had a mammo and ultrasound, said it was a cyst, had it asperated and still told it was a cyst. Filled back up with fluid was told I could have removed, was put on waiting list, then my dr left and had to wait for a new one. When my new surgeon saw my breast he said he hadn't seen any thing like it. The breast was nearly twice the normal size, I had a needle biopsy, inconclusive, then a full biopsy. I was then diagnosed with BC. But the unusual situation was that it was a cyst that the wall was cancerous, the fluid had no cancer cells. This took 9 months to be diagnosed. But I agree with you that it can't be changed, focus all your energy on your fight and getting better.
Thinking of you
Jul 31, 2012 09:04 PM vickib wrote:
Yes, it happened to me too. The Dr told me I drank too much pop. I had a cyst on my breast and under my arm but since I was 32, looked healthy and had no family history, he told me it was nothing and I believed him. Over a year later the cyst on my breast was quite large and I could feel 2 large nodes under my arm so I finally called again (I did not call earlier because I never did stop drinking my Diet Pepsi). Anyway, I could tell by the look on his face, just by feeling them, he knew he screwed up. I tell everyone I know, if you feel something is not right, you make sure they check into it. DO NOT TAKE NO FOR AN ANSWER!
I am sorry this has happened to all of you and I am sure this happens quite often.
Jul 31, 2012 09:20 PM Denise-G wrote:
Reading these stories, makes me cry. I am grateful to my doctors who took me seriously right away. I really had no idea so much misdiagnosis went on. I am going to spread this word. ..
Jul 31, 2012 10:40 PM EnglishMajor wrote:
I recall that Dana (Wings of Hope) was essentially told not to worry. In 2002, Dana, then 31 years old, was diagnosed with Stage 2 breast cancer, more than a year after she first sought treatment. " Because of my age, no family history and the fact that African-American women have high cases of fibroadenomas (a benign breast lump) - the lump went misdiagnosed," Dana recounted. "I was told to come back and have it checked in six months. Six months later, I was told the same thing."
Jul 31, 2012 10:43 PM EnglishMajor wrote:
Dense breasts are another issue:
So on February 3, 2004 my life changed when I heard those dreaded words, "You have cancer." I asked what most women would ask - thinking that I was an educated patient - "Why didn't the mammogram find my cancer"? It was the first time that I was informed that I have dense breast tissue and its significance. What is dense tissue, I asked? Dense tissue appears white on a mammogram and cancer appears white - thus there is no contrast to detect the cancer (It is like looking for a polar bear in a snowstorm). I asked my physician why wasn't I informed that I have dense breast tissue and that mammograms are limited in detecting cancer in women with dense breast tissue? The response was "it is not the standard protocol." So I went on a quest - for research - and found that there have been 7 major studies with over 42,000 women that demonstrate that by supplementing mammograms with ultrasounds increases detection from 48% to 97% for women with dense tissue. I also learned that women with dense tissue have a 5x greater risk of getting breast cancer. We have double jeopardy - a greater risk of having cancer AND are less likely to have cancer detected by mammography alone.
Aug 1, 2012 03:46 PM Angelfalls wrote:
I was also misdiagnosed. I was 30 and had a palpable lump that my GP thought was probably a breast mouse, but as it had been there for a good 6 months, she referred me to a specialist breast clinic. Because of my age, I was given an ultrasound and no mammogram, but nothing at all showed up on the ultrasound, so I was told it was a breast mouse and nothing to worry about, even though my nipple had started to invert. I was referred back a year later and told that it looked like a small cyst from the ultrasound, but this time they took a punch biopsy. 3 days later I was diagnosed with BC and had my first mammogram. This showed a tumour of around 8 cms. And the rest is history...
Aug 1, 2012 05:08 PM Stormynyte wrote:
I was told it was an infected or clogged milk duct, given antibiotics and sent home. He said "You are to young for it to be cancer and cancer doesn't hurt. Take these pills and you'll be fine"
Stupid me, i believed it and ignored the lump and pain for over a year, till it broke through my skin. The Dr. I went to for that freaked out and sent me to a surgeon the same day. Surgeon freaked out and did a biopsy right then, and made me an appointment with the onc for next day. They had me scheduled for a scan 2 days later and a mast the next week. The scan changed the plan.
If the first damn doctor I had seen would have actually looked maybe I could have had a lumpectomy and been done with it. Makes me so mad.
Aug 1, 2012 08:14 PM BouncingBetties wrote:
JeninMichigan - your story is mine. My family has lumpy breasts so when I developed one that was uncomfortable or hurt with hormonal fluctuation, and also moved when palpated, there was no reason my GP or I suspected anything. No breast cancer in my family. I do have dense breasts, haven't had a baby and started my period at age 10, but so have plenty other women who won't get cancer and will live to be 80 or 90. You always hear "if it hurts, it's not cancer...usually". That's funny because I read an awful lot of posts here in Stage IV metster-land and see a number of us had discomfort or pain.
Aug 15, 2012 01:40 PM kathyhong wrote:
My first lumpectomy I ha a benign tumor. 6mth later I had a sonogram and found 2cysts and a couple of tumors (didnt do a biopsy to know if it was benign or not) and decided I just wanted to do a double mastecomy. I didn't wanna have to be cut open everytime.