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Stage 4 cancer did not show up on mammo.

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BarbK View Drop Down
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    Posted: Nov 12 2016 at 11:26pm
Hi everyone,

I posted my story earlier but am still puzzling over the details.

My wife had a mammogram on December 15 that did not show cancer.

In January she found a soft and painful lump.

On February 2 an ultrasound showed the "lump" was an inflamed artery. The radiologist did not see any cancer although in fact the cancer was there, causing the artery problem. They did not do any other tests. They misdiagnosed it as Mondor's disease and told her to come back in 6 weeks.

On March 25 they did a new mammo and clearly saw many tumors all over the breast. 8 lymph nodes were affected. The cancer was also in the bones: skull, hip, and vertebrae. A PET scan did now show cancer in the liver.

On April 12 she got her one and only chemo treatment.

On April 14 we were told she now had cancer in the liver, she was in DIC, and we started hospice.

On June 12 she died.

Has anyone else had a mammogram that shows no cancer and then just 3 months later they find metastatic breast cancer?  I know this is possible, but I still can't believe they didn't miss something in December.







Edited by BarbK - Nov 12 2016 at 11:30pm
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2016 at 10:26am
My wife's cancer missed in mammo in 2008, due to dense breast tissue.
They now have digital mammos show more detail routine.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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BarbK View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BarbK Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2016 at 1:13pm
Thanks Gordon. Was it already stage 4 at the time of the mammo? That's the part that seems so unreal to me...
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 3:26pm
No, stage 2B.  Are you compiling information for a possible malpractice lawsuit? We looked into it, fyi even w/ imaging to show it was missed, and Kaiser telling my wife no followup needed, one of specialized law firms in LA we sent to, they said the bar is really high to prove  malpractice &thought they could not prevail. Never heard of such fast progression in your wife's case, should not happen. Sorry.


Edited by gordon15 - Nov 16 2016 at 6:27pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Tonya98 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2016 at 12:48pm
I also had dense breasts and the cancer was missed. Fortunately a doctor ordered an ultrasound and the cancer was found. I had upfront treatment but the cancer did progress to stage 4 three months later. 
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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BarbK View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BarbK Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2016 at 10:58am
Gordon, are you saying that an outside radiologist agreed that the cancer was missed on the mammo? I haven't had her images looked at by anyone else outside of Kaiser yet, but I will.

And no, I don't think I have a lawsuit either. I am just in complete shock at how they could see no cancer in December, no cancer in February, and then in March it is all over her body. I guess I was just hoping to hear someone say that it's happened before, even if it's rare.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2016 at 4:51pm
Hi,
I am so terribly sorry for what you have gone through, and losing your wife so suddenly and tragically.  My heart breaks over such a story!

In terms of your question, I have heard stories of really rapid growth for TNBC, so it may very well be that it grew that fast.  My own case was measured at 1.1 cm on U/S, biopsy, mammo,  then I had my MRI about a week and a half later and it was 2.2 cm.  I assume that part of this big sudden change may be measurement issues stemming from the different types of scans, and part truly could be very rapid growth.  My tumor was not palpable, but I have heard women talk about TNBC tumors that were palpable/visible to them, growing so fast they felt like they could visibly see differences almost overnight.  Given the aggressive nature of TNBC, I would not assume that someone incompetently "missed" the cancer in a previous screening where they should have caught it.  That certainly is possible, but TNBC can be such a nasty beast, we have all heard about how aggressive and fast-growing it can be, that it really could just have been the particular biology of her cancer that caused it to grow really rapidly.  I hope you are able to find peace, although I am sure you are filled with sorrow.  
 Wishing for the best for you,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 23 2016 at 3:25pm
My wife had PET @ Kaiser end of 2015, Nov I think. There was uptake spots lighting up in her OTHER armpit. (3) At time of infusion, since she has weak veins, they had to restart the IV.
Bear in mind, Kaiser missed her cancer in 2008, due to "dense breast tissue" on mammogram. Back then, they didn't have the newer "3D" which is digital mammo, nor did they do ultrasound. She had (2) lumpectomies/Stage 2B IDCw/ ILC. Surgeon took lot of tissue (the lobular hard to margin)and I think 10 lymph nodes and she got lymphedema in her arm, Kaiser wasn't that great in trying to prevent that at the time.
 
So, this PET IV, there is something called a "artifact", I think it is, where the infusion stays in lets say, since they used her other arm, it goes to the lymph nodes, this extra glucose could explain the spots. Technicians said it could be, but report said no followup, especially since PET didn't show a PRIMARY tumor. I'd have to say also that the technicians bragged and boasted about "this is the Cadillac of tests ... never wrong" at the time. (Scripps NEVER would not have investigated those spots, even if infection explained HAD to be nodes.)
Then at end of year, Obamacare arrived and wife was turning 65 so Medicare options VERY complex to find Calif exchange, she MISSED that next mammogram b/c she knew she needed to get on Scripps (out of Kaiser), and would have new Plan/new insurance I think by Feb1, 2016, (her b-day also)
Scripps did all new imaging, incl PET, and she has  TNBC Stage 3C 4-5 nodes and 4-5cm tumor show. We ASKED Scripps are these THE SAME LYMPH NODES as on Kaiser PET?
FYI, other institutions will not implicate another. We had the images, even the pathology report would not admit. Liability I guess.
So, anyway, we had thousand$ out-of pocket, so my wife sent imaging to law in LA. She didn't care about "damages" just our expenses.
The lawyers said b/c she MISSED THAT MAMMOGRAM they could hold it up for years and they would not likely prevail.
We are sure her tumor was there, in fact it presented itself rapidly between exams, like metaplastic often does grow very fast.
She has great doctors now and is seeing someone at UCSD Moores but they aren't having her do any "prevention" drug therapy now. She has GI problems from chemo to battle. Really sorry to hear your situation.



Edited by gordon15 - Nov 23 2016 at 4:33pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BarbK Quote  Post ReplyReply Direct Link To This Post Posted: Nov 24 2016 at 9:58pm
Thanks Gordon. I would like to try to find an outside radiologist to look at the Dec 15th mammogram. I have been told it is very believable that the cancer was present and even metastasized yet not detectable on Dec 15th, however I really want someone else to take a look.

I am mad that they didn't investigate the inflamed artery on Feb 2nd more thoroughly. Recently an ob/gyn told me "Oh yes whenever I see an inflamed artery in a breast I send the patient right to the breast surgeon. It's not common, but when I do see it, it's probably cancer. Your PCP just didn't know that because she'd never seen an inflamed artery in the breast before and she wasn't familiar with it. But I would have sent the patient to a breast surgeon for further imaging, not just an ultrasound."

It's also clear that catching the cancer on Feb 2nd vs March 28 wouldn't have saved her life, but I would have had more than 11 weeks to say goodbye to her.  She was only 56.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2016 at 11:58am
I'm so sorry for your loss. Very hard to tell you what to do, b/c it might not be a battle you need right now. There are rad clinics all around that prob charge $100-150 to opine.
 
I forgot to tell you after my wife signed-on w/ Scripps early 2016, she had a new PCP, who gave her phys exam, wife liked her a lot, still does in fact b/c so thorough.
She didn't fell any lump. About 6 weeks later, my wfe has big lump above her nipple, on the side where Kaiser said no followup b/c of PET node spots lighting up on that side.
The tumor was TNBC metaplastic/squamous in part. Metaplastic bc is known to be discovered as an "interval" cancer due to it growing so fast, it happens between regular scheduled exams. To this day, her PCP feels bad she missed. Wife says it was not there, til it was. Hope this helps.




wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BarbK Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2017 at 6:05pm
I thought I'd post an update.

I got an outside radiologist to look at her December 2015 screening mammogram. In fact, it was clear. No cancer detected. The cancer was in her body and probably metastasized, just not visible on mammo.

However, the radiologist was shocked that no doctor was alarmed in February at all the inflammation of the breast. Even if the radiologist could not see cancer on the ultrasound, my wife should have been sent for and MRI or CT scan. A huge 10cm long inflamed artery in the breast is not something to to ignore. The misdiagnosis of Mondor's Cord was just silly. She was sent home with no follow up. 7 weeks later she was diagnosed properly with metastatic TNBC and 11 weeks after that she was dead.

So yes, Kaiser screwed up. But it wasn't on the mammogram.

Thanks for listening.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 7:13pm
BarbK: I am very saddened to hear about your wife's circumstances. We had insurance with Kaiser in 2008, they missed her tumor on mammogram, because she has dense breast tissue, at the time, ... They, and most screening has currently  moved to a digital mammogram. (called as "3-d" which in my mind, it is NOT 3-d. ) 3-d is MRI, that's another discussion...but the digital mammograms show more detail.

A PET/CT should have been recommended, if your wife's cancer metastasized, it might have shown up.

Again, this should not have happened, if she had inflammation, in my wife's current care, she would have been in the doctor's office/ER the next day. but...that is increasingly difficult to find in health care. We have battled the system, having been married 44 yrs...

When my wife switched over to Scripps/Scan/Medicare, she had a wonderful PM doctor, who did, what she calls, extremely thorough physical exam, and she did not feel her tumor above the nipple, on her other breast... not the original cancer. My wife had  mammogram, and after that, a tumor expressed above the nipple, like an egg-size, and the surgeon claimed mammograms "do not cause" tumors, but I still think the physical trauma, of the pressure, activated what was there, and it turned out to be "metaplastic" which grows fast.

I'm trying to put this in perspective, that there are circumstances that are beyond doctor's and nurse's control, and the bar is very high to prove malpractice, which I am damn mad Kaiser missed my wife's original tumor in 2008, and her current Primary, with her new insurance at Scripps/Scan  did not feel any lump

  hope this helps your sadness, which I feel ... G




wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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