I have been downgraded from Grade 3 to Grade 1--
Okay, this is good and is in my favor, but I cannot believe that there was a typographical error on my pathology report. I thought I was grade 3, turns out I am Grade 1. Can you believe this could happen?
I went to see a new consulting oncologist at NYU last Friday, to further discuss whether to do the Zometa 4 mg. per six months or not.
She was wonderful, and spent one and a half hours with me. Okay, so I waited over two hours to see her, but it was worth it.
So, the numbers on my pathology report did not add up. I called the pathologist this morning and was told that she does not speak with patients directly. I explained that there was a major mistake on my pathology report and I expected a call back from her this morning. Non negotiable.
Pathologist called me back and said indeed, there was a typographical error on the report, she thanked me for calling it to her attention, and said she would issue a new amended pathology report. I said don't thank me, just send the slides over to my consulting physician at NYUMC and she will re-read and re-interpret the slides.
She said she wanted to again re-cut and re-read the slides before doing that.
She just called and apologized, and again thanked me for picking it up. She re-cut and re-read the slides and indeed, my tumor was Grade 1, not Grade 3, after her re-examination.
I told her I still wanted the slides sent to NYUMC to be re-read.
I am just floored by this.
From now on, it is four opinions on everything or me.
How can people be so incompetent? Doesn't anyone proof read these reports?
Going to open a bottle of wine and take some deep breaths.
How can we trust our doctors?
Rant over for now.
Comments
-
Whooppee pickle!!!
Good for you, OBB!
Incredible!
Have a glass on me!
Susan
PS I decided last night to have mine re-read, and now I know why!!
-
Wow Jane - you must be elated
and also so ANGRY! 
What a weird combination of emotions to experience! My own turmor was tested by two separate pathologists before my breast surgeon would schedule surgery - then again after my mastectomy - then yet again by Oncotype DX, so I feel somewhat confident that they got my numbers right. Still, your story puts a cold shiver down my spine! -
Congrats ......... I guess it's good just to enjoy the moment. Time to give 'em heck later on. Here's to you girl........ There have been so many horror stories here in Canada about pathology reports read incorrectly. Scares the bejeebers out of me.
-
I am so happy for you!
Yes, the medical world certainly has there share of screws ups!
Dani
-
Jane, THAT IS AWESOME NEWS. I am happy for you, that is an important prognostic factor for you. I basically do not trust them anymore. I consulted 3 different institutions and got 3 different opinions. I don't know now whether I will live 5 years or 40 years, very disconcerting. So, I am still waiting for the cure. Stay well, I am elated for you. Mary
-
Jane, this is wonderful news for you!! The prognosis can be soooooooo much different between the grades. Mistakes happen, and unfortunately they happen far more often they we would hope - but not just typographically and not just in the area of pathology either. The practice of medicine is not and has never been an exact science. Finding out it's really a grade 1 is absoutely fantastic!!!!!!!
-
So happy for you.
That's a really nice looking diagnosis
Sue
-
that's the best news i've heard all week. way to go! if it's got to be wrong let it be wrong and go down. you must feel great. enjoy that wine.
-
Yes! Don't foul around with us bc ladies. You go girl! I hope your story helps others.
Flalady
-
Thanks everyone for your kind comments, and I am indeed thrilled with the "downgrade."
I don't regret doing chemo or getting a mast.
The thing that I am having a problem with getting over re anger is what if the typo was listing Grade 1 when it was Grade 3 and I had not had chemo or felt hormonal therapy necessary for such a small grade 1 tumor? And how many times has this pathologist and her "typist" made the mistake the other way around and someone is out there with Grade 3, thinking they have Grade 1, so they did not do radiation, not do chemo, etc., and are at a much higher risk for recurrence? And clueless about it?
I hope the lesson we can all learn from this is that we have to be our own advocates and question, re-test, question, and get second and third opinions. It is bad enough we have to deal with the bc beast, but we must remember not to let anyone intimidate us into taking the word of our doctors as gospel.
I think it is appropriate for me to send a letter to the hospital administrator, informing him/her of this incident and recommending that some stronger double-checking, proofreading, etc., guidelines be put into effect before this pathologist signs off on any other reports, since the entire course of our treatments are based upon our pathology reports.
-
Wow! Thats Awesome news!
So they typed it wrong is that how the mistake was made?
I do worry about my DX from time to time...Because it too doesnt add up.
(I only Dance When No One Is Watching )
Pam
-
Jane,
First--congratulations on the good news!
Now, for the serious part: You are taking this error much more calmly than I would. If it were me, that letter you're threatening to write to the hospital administration would already have been written. While you're at it, don't forget the head of the Pathology Department, and possibly the section leader of the Surgical Pathology group (the folks that read the slides from the surgical biopsies).
You are absolutely correct--what if the mistake was the other way around, and what you were told was a Grade 1 was actually a Grade 3?
What astounds me is that, if this really was a typographical error, why wasn't it caught by the pathologist when he/she reviewed the report? Where I used to work, the pathologists dictated their reports and gave them to the typists/medical records clerks to type up. The typists prepared the written copy (in digital format these days), which went back to the pathologists for proofreading and signature. I see this as the pathologist's error--he/she cannot pass this off on a clerk as a "typo".
Typo's do happen, of course. I went to a major, high-ranking university medical center on the east cost of the U.S. a few years ago, for evaluation of a hormone-producing tumor on my left adrenal gland. The plan was to have it worked up by an endocrinologist there, and then schedule surgery at a later date to remove the adrenal gland if the endocrinologist concurred with my local physician's assessment. When I received my copy of the endocrinologist's report, I saw that he had said the tumor was on my RIGHT adrenal gland. Oops. I had copies of the MRI and CT reports, and there was no doubt it was on the left. Fortunately, he apologized profusely and "corrected" that typo as soon as I pointed it out; and he quickly issued an addendum to his report, with copies to all who received the original report. The surgery was done on the correct side.
I am curious: Did your path report just say the tumor was "Grade 3", or did it contain the details of the grading/scoring according to the Bloom-Richardson scale? For those who are wondering, here's a website with a brief but helpful explanation of the grading scheme: http://www.ccrcal.org/Vol_1/BloomRichardsonGradeForBreastCancer_CA.htm
In addition to the tumor grade, some path reports contain a breakdown of the scoring of the 3 different morphologic features that are evaluated (degree of tubule formation, tumor mitotic activity, and nuclear pleomorphism or nuclear grade). If those numbers were also included in your report, then there is no excuse for the mistake in recording the final tumor grade as 3 instead of 1.
Yes, it sucks majorly that we have to follow behind everyone, to make sure they don't commit these kinds of errors. Fortunately, in your case the error was in your favor. I wonder, though--would chemo have been recommended for you, if your onco had known the tumor was only Grade 1?
otter
-
I too, wonder if chemo would not have been given had the onc known it was really only a grade 1, but I was afraid to ask. Chemo wasn't offered to me for a small, grade 1...not that I would have taken it even if it had been.
-
Otter--directly from the pathology report:
Breast, simple left Mastectomy
Infiltrating ductal carcinoma with papillary features.
Grade 3/3 (tubules 2/3; nuclear grade 2/3; mitotic score 1/3 (Nottingham System)
Intraductal carcinoma is also identified. Nuclear grade 2; solid; micropapillary, papillary and cribiform types with focal necrosis and calcification. DCIS constitutes >25% of the tumor and is present admixed (NOT MY TYPO) with and away from the invasive component."
Good grief, I think I just found another mistake? I cannot believe this--maybe I am reading it wrong. But when I went to the psyiatrist (sp?) re my LE, she could not find a scar from the SNB and it must have been done through the mastectomy incision. I also recall my old BS explaining the "two isolated cytokeratiin positive cells beneath the capsule" in Sentinal Node #2 was considered lymph node negative and were probably "pushed" up there during the mastectomy. But the pathology report calls the sentinal lymph nodes left axillary #1 excisional biopsy and left axillary #2 excisional biopsy? I would think excisional biopsy would mean they cut through the skin or am I off base? Probably I am off base and they were "cut out"so they would be excisional.
There is a Case Note regarding the isolated cytokaratin positive cells in sentinel lymph node #2: Immunohisochemical studies were performed on paraffin embedded sections for micrometastases using the Novolink Detection (Vision Biosystems) immunoperoxidase method. The results are as follows: Antibody--Cytokeratin AE1-3 Result--two isolated keratin-positive cells in 1/2 lymph nodes (results confirmed in repeat test)
Chemo is done and over, and I keep telling myself if two cells "got loose" maybe more, so good thing I did the chemo. If I don't hold on to thinking that way, I get literally physically sick to my stomach. . .
Actually, I think I am much more upset and outraged by all of this than I am allowing myself to be at this particular point.
Those letters will be written Otter, to the folks you recommend, but first I want my slides. I just got a fax authorization for their release and get this--they want a $50.00 handling fee and $25.00 per slide technical fee! I am spitting fire that I should pay this--I am about 1/2 inch away from driving down there and demanding that they hand over the slides to me immediately.
Too early for wiine--gonna make another cup of coffee and probably take a xanax and deal with this later.
-
I am a BC patient and also a medical transcriptionist. So, I type the reports and have done pathology in the past. Three things could have caused the Grade 1 to be mistakenly typed as Grade 3 -
1) The doctor has an accent or a voice impediment (or was eating, drinking, chewing gum, pulled her face away from the mic) and the transcriptionist misunderstood her. However, since the pathologist signed the report, it becomes the pathologist's error (when you sign on the dotted line, you confirm the information on the report).
2) The transcriptionist made a typo (doubtful as 1 and 3 are a key apart) dictation is being outsourced now and done in India, the Phillipines and Pakistan by US medical transcription companies and there is a concern about quality. There are Wal-Mart type transcription companies out there, unfortunately.
3) The doctor dictated Grade 3. Some just get spacy, are tired, distracted.
It may be possible to get the tape with the recording of her dictation on it. These days, that is possible, even months later. That you went through chemo for G1, S1 BC is something that will need to be eventually discussed, and its consequences. So, I would keep notes on this. And remember all, California has passed a law that limits rewards due to malpractice and unless a patient has died or is dying, atty rarely pick up cases as they cost so much to prosecute and a ceiling for awards is in place. Malpractice insurance in Calif is inexpensive now, obviously.
I am sorry about this. I hope you are not too angry and that the person who made the error is discovered as it will make them pay more attention to their work or maybe they are making other mistakes and need to be evaluated for the work performance.
-
Wow, BadBoob, I just read this on the other thread, but I am just floored. As you say, the news is good in this particular instance, but doesn't this just shake everyone's confidence in all diagnoses, reports, pathology readings? My God, how often does this sort of thing happen?
All I can say is you handled this situation like a pro. And I hope you enjoyed that wine!
Love,
Annie
-
Good news on "...present admixed...". It's not a typo--it's real: http://www.merriam-webster.com/dictionary/admixed
As for the number of incisions that might be present, I had a mastectomy and 3 sentinel nodes removed, and I have just one (long) incision. The mast incision was extended laterally up under my arm (but below the pit itself).
Jane, you were questioning this: "...the pathology report calls the sentinal lymph nodes left axillary #1 excisional biopsy and left axillary #2 excisional biopsy...". I think the phrases, "left axillary #1..." and "left axillary #2..." are the ones that refer to the nodes, using the location ("left axillary") and the numbers as identifiers. I think (but don't know for sure) that the words "...excisional biopsy..." at the end of each of those phrases refers to the way the nodes were collected. I really doubt the juxtapositioning of the numbers #1 and #2 alongside the reference to "excisional biopsy" means there was more than one biopsy incision, or more than one biopsy. When a lymph node is removed surgically, it's called an excisional biopsy. The writer used a disjointed statement to explain what was going on--maybe it could be considered awkward syntax, but I doubt it's anything more.
However, the possibility that the pathologists' recordings are being jobbed out to workers in Asia or the south Pacific for transcription has given me pause...
Medical transcriptionist. Medical transcriptionist. That's the job title I was trying to remember. Not "typist" or "medical records clerk." Thanks, Lynn, for pointing out the possible sources of error. You are right, though, and I concur: the buck stops at the pathologist's desk. If he/she signed off on the report, he/she owns it.
otter
-
Thanks Otter for that explanation.
I had a discussion with hubby last night about suing these bastards including the breast surgeon for missing the LE diagnosis and it went to Stage 2.
Hubby is a lawyer, and said we could, but thankfully, I have no damages so we would not win. No damages since onc might have suggested chemo anyway because of the two isolated cells, and no damages because the LE fibrosis is 99.9% gone and hopefully will be completely gone eventually. He said we would spend much time, money and emotional stress, mostly on me, and most probably lose.
So, I guess I will just write my letters, let it go and move onward. Probably the healthiest thing for me to do emotionally at this point.
One more question Otter--will the pathologist automatically send a copy of the revised biopsy report to my old breast surgeon who performed the mastectomy?
Thanks for the explanation Lynn, but I spoke directly to this pathologist twice--no accent, no speech impediment--just her careless mistake in proofreading.
-
Jane, I don't know if the report will automatically go to your previous surgeon. It should, of course, since that's the person who submitted the tissue.
I wouldn't bet on it, though. The revision was done at the prompting of you and your new oncologist. The reason I'm skeptical is because I've become suspicious about the quality of communication among the members of the "teams" that dx and treat our BC. (No kidding!)
Another dear person on these boards learned, many months after the fact, that her BC was HER2+, not HER2- as she had been told by her onco. It turned out that the HER2 report, which was submitted as an "addendum" to her main path report, was not sent to all the physicians involved in her treatment. (At least I think that's part of what happened.)
So, if I were you, I would get ahold of that revised path report and send a copy yourself to your previous surgeon--with a note attached. You could always ask the Path Dept or your new onco to do that for you, but all bets are off as to whether they would do it.
What a mess! I am just so glad that the news was in your favor, rather than the other way around.
otter
-
I'm so glad the grade was lower than you were told, not the other way around. But what struck me is that, while the "typo" says Grade 3/3, the breakdown of tubule 2/3, nuclear 2/3, mitotic 1/3 does indicate a Grade 1 tumor. I know this because my tumor was Grade 1 and had the exact same breakdown (kind of the high end of Grade 1, in which the components add up to 3-5). I'm surprised that none of your doctors picked up on that--I guess they just focused on the final grade number, not the breakdown.
My tumor was so small (3 mm) that, with the Grade 1 path report, I didn't receive chemo. It's kind of chilling to think that an incorrect report could really change the treatment plan.
-
Update guys:
We had brunch with DD and SIL Sunday, and I totally forgot he had surgical privilages at that hospital. He said I will handle it, call them Monday morning and tell them Dr. K will be picking up the slides and revised pathology report as soon as they are ready. Told me to relax and get past it and he would take it from here.
So, this morning I called and told them I was having my SIL (I am a bitch) pick up the slides and the revised biology report without paying anything for it. Lady said that is not how we do things here. I told her tell Dr. B that Dr. K will pick up the slides and the report as soon as they are ready. She says to me " Dr. K is your son-in-law?" I said yes, and if there are any problems, please have Dr.B (who does not speak with patients, as I spit it through my teeth) call me.
So she switches me to someone else to make sure the slides will be ready and that I sign the releases. So this next person tells me I need to sign a release to have the slides picked up by Dr. K and agree to return them to the hospital. I said you have to be kidding--you screwed up the report on my body parts, and I have to agree to give my body parts back to you? She said yes, they are the property of the hospital. I said no, they are my body parts and my property, and I want them released to Dr. K and I want a copy of the revised pathology report faxed to me right now. She said no, it has already been sent to you bs and ps, and we will release it to Dr. K but not to you. I said okay, would you like me to call Dr. K on his cell phone right now (he us in surgery, he will take my call, seeing my number) and have him send someone to pick up the report and fax it to me right now?) I am prepared to do so.
She sighed and said okay, you win, I am not going to argue with you, I will fax a copy of the revised report directly to you. I said thank you for your kindness, and and I expect it immediately, post-haste. she said she would fax it to me and the slides would be available for Dr. K to pick up on Tuesday afternoon.
So I indeed got a copy of the revised pathology report, re-done yet again (third time) and signed offf by the chief of pathology, with the statement:
"Reason for corrected report: This report is being amended as a result of a typographcal error. . . .
Individual scores confirmed on review of the tumor is an overall grade 1 tumor,"
-
you go girl! no more talking to us like we're crap!
-
Wow, what a story!
fyi, I go to Loma Linda, and they did not charge me a cent to get my original slides sent to City of Hope for a 2nd opinion. They did this within days, by Fed Ex, no questions asked. This is how it should be!
-
I am happy to report that I have my slides and did not have to pay for them.
The medical transcription is done right at the hospital and not sent out.
The head of pathology who signed off on the amended report is the pathologist that sits on the tumor board, so hopefully, this same problem will not happen to someone else.
I am so not done with this yet.
(p.s. Pam--let it go and shake your bootie anytime--who cares who is watching? The point is to have fun!)
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team