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Topic: Misdiagnosed two yrs ago now I'm 3 stage invasive

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Jun 2, 2007 05:00PM

snowyday wrote:

I went to a clinic with a lump the size of a pea two years ago and the Dr. at this clinic told me it was nothing. I hadn't been feeling like myself, tired, no spark so 12 weeks later I went back and the lump had grown to the soze of an almond so I was finally given a mammogram and ultrasound and they came back benigne. I was feeling worsed and asked to see an internest hoping another Dr. would help, well I was told it was anxiety and to take antideppresants so I did and still nothing but tired and sick all the time. What started in Jan 05 was finally diagnosed and invasive mammory carcinoma of no special type with estimated SBRgrad 111/111 (tubule formaation -3 nuclear pleomorphism-3mitotic activity-3 core =99. With large amounts of associated necrosis. An in situ is not identified. I'm furious I did every possible and finally in May 07 my back Dr. felt and set up appts at a hospital for me. I've already had a bone scan CT scan and meet with the onocologist on Mon. I'ms stunned this happened to me and terrified the same thing has happened to many other women who still haven't a clue as to the true nature of their health. What do you all recommend to get the word out to other women in my city. Please help, I can't sleep at night for worrying about that on top of this dagnosis. Any help would be seriously taken. Thanks pearl49

PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jun 2, 2007 10:30PM trumpkin46 wrote:

I am so sorry....your story makes me sick/sad....No wonder you are furious!

I have no wisdom to give except to say that I needed chemical help to sleep when I was first diagnosed, and that without sleep I had no ability to undertake anything, decide anything. Please let me know how the meeting with the oncologist goes. I pray that your bone/liver scans will be negative.
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Jun 2, 2007 10:57PM Toronto wrote:

I am very sorry for your situation.

I think if you want to get the word out to women in your community your best bet may be the media; print, radio, and TV. The thing that struck me in your message was that the mammogram and ultrasound came back benign. I don't think that is possible, they are just pictures and can look normal or suspicious or worth watching, but cannot be pronounced benign.

Check your local media, likely you will find one or more reporters who specialize in health issues. Send them a note or e-mail with some suggestions. I wouldn't make it a blame the doctor thing, at least off the top because you don't want to scare the reporters.

Good luck to you, I'm hoping your scans come back clear.
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Jun 3, 2007 01:30AM ravdeb wrote:

I agree with mke. It's important for people to understand the the mammogram and ultrasound (mri)are just screenings for breast cancer. They are either checking for abnormalities or want to see a lump that had been detected manually.

No matter what...that lump, once found, needs to be biopsied. It's our responsibility to be advocates for ourselves and get biopsies for any lump found, no matter how tiny, round, or smooth edged it is and no matter your age.

My mammogram results said that I had what appeared to be a benign tumor. The ultrasound results said it was highly suspicious and path report after excisional biopsy said it was IDC.

At any rate, good luck with all the scans.
IDC, 2cm, triple negative, grade 3, node neg Dx 9/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Jun 6, 2007 11:49PM WendyInCalif wrote:

I also had cancer in my breast from 7/04 until 3/07 without knowing it but it was because no one notified me to follow up in six months in 7/04 as the report stated. Because I have Grade I, Stage I and no node involvement, I just feel lucky. But there is negligence in your situation that will result in an outcome quite different than it should with the delay in diagnosis. You should consider your rights as a patient to an accurate diagnosis.

DX 3/07, G1, S1, IDC, RT. Dx 3/25/2007, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jun 25, 2007 02:50AM peachy49 wrote:

I have mammos religiously since age 35. I have always had dense breasts and b9 lumps. In 2004 my mammo was ok, had a b9 lump removed. In 2005, sent home with the "ok". In 2006 the new digital mammo revealed calcs in the same place near where they removed the lump in 04'. On the same 06' mammo, they used the 04' mammo to compare, stating that my 05' mammo wasn't in the folder. The calcs of course turned out to be IDC. I was furious! This yrs mammo post lump/rads revealed a questionable area of concern that they wanted me back for MRI. They compared this 07' mammo with 05'! I said 'oh, you found my missing 05' mammo, the one that could have revealed the then possible DCIS??" They said my mammo was never missing and that they use mammo's from TWO yrs prior as comparison. In my report everything was WRONG. They listed me as having PULPECTOMY, which for those that dont know its removal of tissue below a ROOT CANAL, and they stated that my rads finished in JUNE, instead of the correct time which was JANUARY. I called radiology and demanded a review of my mammos from 04'-07 and a new report to be issued to ME! My onco said my tumor was there at least 2 yrs. They blame it on the density, but really its a RUSH job in radiology. The cancer center where I go has so many patients and not enuff radiologists for sure. Better luck in the future for all of you.

Blessings
¤PeachyMarie§¤ "If we have no peace, it is because we have forgotten that we belong to each other." Mother Teresa Dx 8/31/2006, IDC, <1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jun 28, 2007 01:11PM nosurrender wrote:

My first cancer was found and it was a miracle they spotted it when they did.
But my second time around I was told for a year that the lump was a hematoma- even tho it had resolved on mammo.
My gyn and my onc wanted me to get a biopsy but my breast surgeon said no.

A year later I FINALLY got him to take me seriously and had a core biopsy. It turned out to be cancer- three tumors, and it had spread to four nodes and gone outside the nodes.

Now I am in chemo again.

If I had gotten a proper dx last year I may not have needed it.

I am sorry that anyone has to go through this.
I have written about it and told everyone I know about it.

It is up to us to sound the alarm by telling every woman we know to NEVER take "let's wait and see" for an answer.

hugs,
g
nosurrenderbreastcancerhelp.org ~What a long, strange trip it's been...
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Jun 30, 2007 09:12AM tooyoungtohavebc wrote:

I went to doc in Jan 05 because I felt tissue in my breast was hardening. Did not feel a lump just a hard area. Nurse Pract did exam and said I was having a hormonal shift. 3 months later I found a lump under my arm and went back into different NP and was diagnosed with Stage 3 BC. I was so mad at the first nurse biotch. I wrote a letter to the chief of staff for the gyno dept and also copied the Nurse. If she had only sent me for a mammo I might have been stage 1 or 2. I was under 40 so I think that is why she did not send me.

Dx 6/2005, IDC, 6cm+, Stage IV, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Jul 2, 2007 07:40AM tos wrote:

Hi Tooyoung, thank heavens you were vigilant and went to see someone else, we have to be so proactive and push but that's ok! Also good to hear you wrote that letter, I would have been very angry too!

I'm so very sorry you've been dx,
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Jul 2, 2007 08:12AM joanne_elizabeth wrote:

So sorry for what you are going through. I also got "misdiagnosed" by waste of time mammograms.
I think another way to educate these idiotic doctors is to sue them. That is right, when the medical profession has to pay, it starts to know it cannot get away with such shoddy medicine. Mammograms showed noting on my breasts til all of a sudden I had 3 tumors there seemingly from nowhere. The state of diagnosing breast cancer is medieval. There is no excuse for it.
I feel that once these freaks know it will cost them, they will do it better and come up with a better test.
Joanne_elizabeth
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Sep 21, 2007 06:58PM Judy_Mc wrote:

I had basically the same thing happen to me in 2003. I got a lawyer and a suit was filed for "failure to diagnose". The clinic and Dr settled out of court and I got a whole lot of money.It turned out that the dx had been missed on many people.

What State do you live in?

Dx 3/6/2003, IDC, 5cm, Stage IIB, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Sep 21, 2007 10:29PM beckyg59 wrote:

The mamos and ultra-sounds showed NOTHING.......but my nipple was inverted. I had surgery on the same breast 15 years ago with the removal of a lump the size of a quarter. Were the incision was made went to my nipple.  I had complained for 2 years and they just kept telling me it was a pulled muscle.  What were they thinking??????  Feb. 2002 I was diagnosed with Stage IIIA, had a radical masstectomy and 17 lymph nodes removed...4 positive. I did the 6 month chemo and 6 wk. rad.........geewhiz, I don't want to sound negative to you, I feel very sorry for you.  Please  keep your head up.

I wish I could have sued them, I was in such a frenzy when the diagnoses came in I couldn't think straight.  No health coverage, had to go into bankraupcy for over $100,000.00 in med. bills alone. But at least I'm alive.

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Sep 21, 2007 10:45PM Marie853 wrote:

Oh my gosh! This same thing happened to me...2 years ago! Now, I don't even know what stage I am (3 or maybe even 4!!!!) and I was diagnosed on May 1st of this year. Two years ago, I felt something. I had a mammogram and ultrasound (this is after a few years of extra pics on the left side, my cancer side). The radiologist dx it as a "ridge of tissue". Last year, I had a normal mammogram...but that ridge was still there. Voila!!!!.... 10 mos later...bigger lump...mammogram..ultra sound...biopsy. Yep. Cancer! UGH!!!! Funny...that ridge of tissue was removed during my lumpectomy. Just had a liver biopsy. Very scared now! I will look into a lawsuit very soon. I guess one has up to 2 years here in Arizona. By the way, that same imaging place hit a nerve in my left arm with a IV when they did my MRI before surgery. It took six weeks for it to feel better. I will NEVER go back to that place! I cringe when I think of that radiologist!

All I can say is YES...you are they only one who can take care of yourself. I just truly believed that they knew best....they are the professionals!!! Maybe the insurance companies should get involved...look at all the money they are forking out to these docs!

Now, my life is at stake. It's a nightmare.

Take care all!

~Barb  

Dx 5/1/2007, IDC, 3cm, Stage IV, Grade 3, 6/7 nodes, mets, ER+/PR-, HER2+
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Sep 22, 2007 01:13PM - edited Sep 22, 2007 01:13PM by jenni__ca

You can also look into the "get the word out" campaigns by Komen, American Cancer Society, Y-Me, and local cancer groups ... all four of those have volunteer opportunites for speakers, mailers, etc to help spread the word that while a mammo and even an ultrasound are good screening tools they are not 100% accurate and suspicious feeling areas should be checked out .. mine was not a lump but more like a thickening ... never knew that it  could be a problem .. i spent my whole adulthood looking for a lump ... wish someone had told me ... when caught was well over 7 cm invasive lobular .. .. ..

stage 3A and now 3 years and counting ....

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ...14 years !!!!!! and counting....
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Sep 22, 2007 03:13PM badboob67 wrote:

I had a similar issue in that I went to the doctor years ago with what I now believe was symptoms of my extensive bone mets. I have always done BSE's, but my breasts were naturally "lumpy". I remember one doctor examined my breasts, paused at the area I would later learn was cancerous, and then he visibly shrugged it off and moved on.  I  was referred to doctor after doctor and no one could tell my why I felt the way I did. Finally, they began prescribing  anti-depressants whenever I went in . I didn't fill the prescriptions because I didn't believe that was the problem.

Finally, I went to my husband's doctor who became our family doctor.  I had bronchitis-like symptoms. What did she do?  She prescribed ZOLOFT. After all the years with all the different doctors, I finally decided, "Ok...maybe they're right." and took the ZOLOFT. Within 3 days, I was having auditory, visual, and olfactory hallucinations. Within a couple of months, my BP went up from its normal 110/70 to 145/90. The doctor switched me to EFFEXOR which I took for a year. Neither of these drugs made me feel any better and the side effects made me feel worse. When I quit EFFEXOR a year later, I had horrible withdrawal symptoms even though I had tapered off under the doctor's supervision. I felt sicker than ever and the doctors just kept giving me the message that it was all in my head. I had given up and felt like I'd just have to learn to live in pain and tired all the time.

Then, my husband found the lump. When I finally went to the doctor, it turned out I had two moderate-sized tumors in my breast and extensive bone mets to my spine, ribs, pelvis, sacrum, skull, and femur. I firmly believe that I had the first symptoms of my cancer nearly 15 years prior to my diagnosis!

I would get the message out that not everything that is hard to diagnose is all in the patient's head.  Too many people go in with real problems that end up being treated with an antidepressant. 

When you're down to nothing, GOD is up to something! bb67.wikispaces.com/ Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Sep 29, 2007 09:35PM 4sandy wrote:

The same thing happened to me...............

U have 2yrs take legal action, from the date of discovery of the cancer.  Please do this.  I did and recovered some expences and then some. You life expectancy was reduced by this error. Where I live there is a Dr who did this to me by 14 months and a friend of mine by 20 months(she is taking action too. We are both still alive 2 1/2yrs later, thank be to god. My tumor was 7x 5.5x 2.2 when they admitted a mistake. They kept saying fybrocyctic, Not! I was 39 at the time.  If you or anyone needs an attorny who specializes in woman breast cancer I have a good FLA one. Oh by the way I had breast implants before I got cancer too. That did not change any risk factors at all. Emaile me at sandrajean01@yahoo.com the only way we can stop this is to stand up for ones self, collectively we can make a differance.  The rule should be.........a needle biopsy for anything in question Implants or not!!!!!!!!  One small needle can save a life! God bless U!!!!!!!!!

Dx 6/21/2005, IDC, 6cm+, Stage IIIA, Grade 3, 1/17 nodes, ER+/PR+, HER2-
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Sep 29, 2007 09:58PM 4sandy wrote:

This is worth sueing over!!!!!!!!!!please! 2yrs from the time U discover there was a mistake made(the discovery it is really cancer). A good attorny will file ASAP and sort through things after.  Plz e-mail me if I can help anyone get a good attorny. I am a Flight Attendant by profesion and have not been able to work in 2 an 1/2 yrs because of someones mistake. I just found cancer in the other breast(I did get the "gift" of early early dignosis this time). I will be having the right breast removed also, on nov 12th. There is strenth in numbers, we owe it to all our daughters to take action and stop the tragic mistakes. Email me if u want help finding an attorny sandrajean01@yahoo.com I will do all I can to help anyone who has been cheated like this, as I have too! U all should be mad!!!!!!!!!! I know I am, but getting Dr.s and Hospitals to admit it really feels good!!!!!!!!!!! (I went to 5 attornys before I found 1 to take my case, it is another fight!) u can do it!!!!!!!!!! 
Dx 6/21/2005, IDC, 6cm+, Stage IIIA, Grade 3, 1/17 nodes, ER+/PR+, HER2-
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Oct 20, 2007 09:14PM sockmonkey wrote:

9 years ago I had a bi-lat masectomy (DCIS both breasts). Never given rad, chemo or hormone treatment after the survery. Last year I discovered a lump in the middle of my chest. My oncologist said it was nothing. After seeing 2 more drs. a cat scan was finally ordered which showed a tumor. Then a biopsy revealed cancer. After surgery and chemo and 37 rounds of radiation. I had my ovaries and fallopian tubes removed and now I'm on femara. Now 3 drs. later I'm faced with a recurrence in the lymph node in neck. The dr. said the femara should shrink the tumor. But know I am very worried and doesn't now who to trust. He wants me to go in for a pet scan next month. No big hurry according to him. I truly know how you feel about being misdiagnosed. What's your advice???

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Jul 10, 2018 03:20PM Kj007475 wrote:

I have bone marrow failure and aplastic anemia and I had went to get a mammogram with ultra sound ! They found mass but deemed a large cyst out of concern I asked to have biopsied and advice from my family because my history and radiologist was upset! I don't think I should be worried or feel bad for being cautious because my history!

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Jul 23, 2018 10:59AM Vicki86 wrote:

hello, and im so sorry for you.The same happened to me.im 40yrs old and bout 10yrs ago my doc told me my tiny lump was normal for my SMALL BREASTS .what an ass. In march this year i saw my new doc because lump was 2.5 cm now the biopsy said benign but surgeon took it out because its big then that biopsy showed it being stage 3 Invasive ductal carcinoma Triple Negative breast cancer. WTF he said pathology made a mistake and hes sorry. But since he removed lump first without chemo theres no tumor to watch shrink so i have to do 9 rounds chemo then bimastectomy then more chemo.ALL BECAUSE PATHOLOGY MADE A MISTAKE.Im shocked and scared to leave my 13yr old daughter who has Down Syndrome. So i feel for you and will pray for you.Be strong. It sucks docs make mistakes that can kill us.

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Jul 23, 2018 11:04AM klvans wrote:

It's way too typical for women to have their health symptoms dismissed and be told they are anxious/depressed, i.e. it's all in their heads. Disgusting.

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Jul 23, 2018 12:47PM Lisey wrote:

I found the lump and went in for a mammagram the next day.  The mammagram showed nothing and they were trying to send me on my way.  I through a sobbing fit and demanded the tech FEEL the lump.  She did and then insisted to the doc trying to dismiss me that I get a US that same day.  I did and they found the tumor - hiding behind a cyst.   You just have to trust yourself and be your own advocate.  I'm the epitome of the Squeeky Wheel.. I just won't go away without answers.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 30, 2018 12:56PM - edited Jul 30, 2018 01:12PM by Amica

I agree with klvans, as posted "It's way too typical for women to have their health symptoms dismissed and be told they are anxious/depressed, i.e. it's all in their heads. Disgusting."

So very very true. My first diagnosis of breast cancer 20 years ago was delayed for years because my doctor attributed my lump to "lumpy breasts" and did not order a mammogram, resulting in delays that allowed the cancer to spread to my lymph nodes.

Now my current GP dismissed signs of my recent recurrence as arthritis, or anxiety/depression. With great reluctance, like she was doing me a BIG favor, she relented to book an ultrasound for me for what turned out to be a 4 X 3 cm metastatic tumor on my collarbone. She treated me like I was being a hypochondriac.

It is so true that you have to be your own advocate and be the squeaky wheel. As someone just said to me, "So what if the staff is pissed off or annoyed with you. Who cares? It's life and death. You are not asking them to do you a favor, you are asking them to DO THEIR JOBS."

And a quote from this very website: "The best patients are the worst patients...Don't sit back and accept anything that fails to satisfy you. Speak up, protect your interests." -- Claire Fagin, Dean Emerita, University of Pennsylvania School of Nursing---That has become my mantra.

with loving support,

Amica


1998 at 39 Stage 2 IDC, 1/16 nodes, ER/PR +, HER2-,Gr 3, surgery, AC + Taxol, rads, oopher/hysterectomy, Tamoxifen, Aromasin, finished treatments 2010 - Aug 2018 metastatic recurrence, Stage IV, Letrozole
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Jul 30, 2018 01:23PM DeepWaters wrote:

Ugh....I hate that this has happened to you. Hang in there. You are clearly a very good person to be so concerned about other women at a time when you are so challenged yourself.

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Jul 30, 2018 01:28PM Amica wrote:

I will also add that I worked as a manager of a specialized cancer program at a large hospital, and the squeaky wheel definitely gets more attention.

1998 at 39 Stage 2 IDC, 1/16 nodes, ER/PR +, HER2-,Gr 3, surgery, AC + Taxol, rads, oopher/hysterectomy, Tamoxifen, Aromasin, finished treatments 2010 - Aug 2018 metastatic recurrence, Stage IV, Letrozole

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