POSSIBLE WRONG DX!

Del14

POSSIBLE WRONG DX!

MelissaDallas

Pathology is pretty subjective, but most of the stuff I've seen discussed here was differences of opinion as to whether something was just ADH instead of DCIS or that type thing. There was a big discussion about a study about how often the various types of atypical things had been called wrong when they were rereadby expert pathologists.

MelissaDallas

Do you think you were misdiagnosed

momoschki

My situation was very comparable to what Melissa described above: original DCIS dx reevaluated by 2 subsequent pathologists which yielded yet 2 more diagnoses-- "borderline"ADH-DCIS, and then pure ADH. The diagnoses fall along a spectrum and the call can be somewhat subjective. But-- my circumstances differ from yours.

614

I did have a breast surgeon remove the wrong lump one time. 

In the recovery room, the bs told me, "Good news, it is fibrocystic breast tissue."  I would never have had a lumpectomy if I had known that was the lump that he was going to remove.  That is not what we discussed in his office.  He removed the palpable lump that I felt.  I have extremely dense fibrocystic breasts.  Three lumps were found at the time of my mammo/us, but the palpable lump was not even seen on my mammo/us. Therefore, there was no reason to remove it.  I have also had numerous lumpectomies and biopsies before and after this incident.  The doctor was supposed to remove a lymph node that was seen on my US.  I should have listened to the radiologist who biopsied 2 of the lumps that were found and told me not to worry about the lymph node or the palpable lump that was not seen on the US or Mammo.)  The breast surgeon insisted on surgery and scared me so much that I agreed to the lumpectomy. 

Unfortunately, after that incident, I didn't go for mammo's or sono's for a few years because I was so annoyed.  I had biopsies and lumpectomies so many times and they were always negative.  I stopped worrying about any lumps that I felt because I started thinking that they would always be benign.

Luckily, I came to my senses and started going for mammo's and sono's again.  I would have to have them every 6 months for years.  When I was finally diagnosed with breast cancer last year, I actually said to the radiologist, "You're kidding!" 

I am really lucky that I was diagnosed.  I feel that my gynecologist saved my life because he insisted that I have a mammo and sono even though I wasn't scheduled for one for another 6 months.  The palpable lump had already been biopsied years before. I was finally on a yearly mammo/sono schedule for the first time.  Unfortunately (or fortunately), I never got to wait the year for my next mammo/sono.  My gynecologist insisted that I have the mammo/sono after 6 months and that I shouldn't wait the year as I had been told.  I am so fortunate that he is my doctor.  I feel that it was a true miracle that my cancer was detected because lobular carcinoma is so hard to find.

After this long story, I am so sorry for what you went through.  Your situation is much worse than mine.  It is horrible.  I have heard of other bad stories with misdiagnoses.  One lady in my breast cancer support group was misdiagnosed.  She was told that she was fine when, in fact, she had bc.

Going to the right doctor is so important.  I am thankful for all of my doctors.  They have all been incredibly wonderful and I am so lucky to have them.

Good luck. 

 

614

I was really lucky that I listened to my gynecologist.  My breast cancer was not detected in the palpable lump that caused my gynecologist to insist that I have a mammo/sono.  That lump turned out to be malignant as well but I did not know that until later.   The palpable lump was biopsied and it came back benign for a second time.  It was only after my double lumpectomy surgery that the pathology report showed that the palpable lump was also malignant.  My mammo/sono showed a malignancy in a different lump, so I decided to remove the palpable lump as well.  Both lumps were in my left breast.  I am truly lucky.

windingshores

I am confused about whether or not you (Jo-5) were actually misdiagnosed. The language of "thought to be" is kind of like the legal system using "alleged", just a legal habit of speech. It was "thought to be" at the time, but then pathology was done after surgery. So was it an angio? Do you know? Is it the MD's doubt versus pathology report that has you wondering. Is the report available online on a patient portal?

I was mistakenly diagnosed at first with HER 2+ and was headed for both chemo and Herceptin. This was based on biopsy. One theory is that DCIS, which is always positive for HER 2, contaminated the IDC/ILC sample. Surgical specimen was equivocal then negative. I found a 4th opinion MD who retested more thoroughly and resolved the draw between the other MD opinions. So I avoided unnecessary treatment.

614

I did not realize that DCIS is always positive for HER 2.

Ellijaygal

I was diagnosed on July 31st with IDC, Grade 1. Lumpectomy was done, follow up with surgeon was yesterday. The pathology report from surgery says it is lobular, and instead of Grade 1 it states 2 advancing to 3. How can they be so different? Oncologist appointment is tomorrow. Maybe she can explain because I did not understand the surgeons explanation.

IrishEyes39

Just my own experience with a weird diagnosis...

In 2007, I found a lump while pregnant. It was biopsied (large sample taken) and diagnosed as a phyllodes tumor, borderline malignant (sorta grade 2 of 3 for that type). I was not allowed to breast feed, and as soon as my milk dried up, I had a lumpectomy. The final path report said it was a benign fibroadenoma with a bit of atypical cells or something. I believed this for several months, though I was confused.

Then, a random nurse at the ER (I went in for a migraine or something) said "maybe they just got it all out during the biopsy" when I explained it to her during my medical history. So, I sent off my initial and final path reports to Johns Hopkins for a second opinion, and they said grade 1 (benign) but definitely phyllodes (which are never truly benign) and agreed with first path report and my treatment.

I will never know why or how the path reports were so very different, but have always wondered if the nurse was right. I know they took a lot from the mass because the surgeon was excited (phyllodes are pretty rare), so maybe it was growing inside a fibroadenoma and they cut it all out the first time. The two tumor types (fibros and phyllodes) are very similar.

ChiSandy

I thought Grade 1 was malignant but well-differentiated and very slow-growing, not benign. (Didn’t know benign masses were graded--if in fact they are).

IrishEyes39

If you're responding to my post, ChiSandy, phyllodes are different. They are classified benign, borderline, or malignant with some docs giving those a grade of 1-3. Or maybe the grade is based on tumor characteristics. Now that I think about it, I'm not sure.

Even benign can become malignant and can also grow into the chest wall or even metastasize, which is why I said none are ever truly benign. They all require removal. And phyllodes are fast growing. Sometimes very fast.

My case was just weird because the same tumor gave me three different results over time.

Leslie13

If you're concerned you should ask for your own copy of your path report. I keep a record of every procedure, and ask for copies as soon as they receive and share it. I fired my first surgeon because she stated she couldn''t feel my tumors when she wanted to keep me on Femara neoadvant treatment, when I had contra lateral and bi-lateral invasive lobular cancer. I was supposed to get monthly checks, and when I left her office I picked up my biopsy report. The tumor had grown. I'd lost precious time, and ended up with 4 positive nodes 2 months later, after I arranged surgery with the new team.