Conflicting Results of Pathology Reports?

How confusing. @kh4976, did you learn anything from the 3rd opinion?

@kh4976 My slides for endometrial cancer (not breast cancer) were first read at my local hospital. The diagnosis of endometroid adenocarcinoma was diagnosed with FIGO Grade 2. Since I was referred to Mayo Clinic my surgeon at Mayo requested that my slides be sent to Mayo Clinic to be read by their pathologists. Same diagnosis of endometroid adenocarcinoma but Mayo Clinic pathologists diagnosed FIGO Grade 1. Did this change the treatment? No, I still had a radical hysterectomy with fallopian tubes, ovaries, and cervix all removed. However, FIGO Grade 2 indicates that the cells are more organized into a tumor than FIGO Grade 1 which could mean that the cancer was more advanced.

My husband is a pathologist (now retired). He says that this sort of disagreement on diagnoses can occur and when that happens it's best to get the pathologists to talk with one another and get another opinion. That's what you did. Have you found out anything else?

The 3rd opinion agreed that I have LCIS, UDH, with a sclerosing lesion. Also mentioned some new words I have never seen before! Very frustrating. MRI on Friday, excisional biopsy in mid April.

When my lesion was thought to be just an unusual lymph node by a local radiologist (from diagnostic mammogram and ultrasound, told to wait 6 months for new scan) but then diagnosed as DCIS by MD Anderson, I was told by the cancer center that it wasn’t unusual to get different interpretations.
So it does happen. An MRI usually helps them get a better view.
Wishing you good luck!

As mentioned in previous comments, my slides were also not initially agreed upon by pathologists. I think 5 pathologists initially got involved affiliated with the breast imaging center. It took 2 days for additional “staining” of the slides. The diagnoses came back as a rare breast cancer (LGASC). I was immediately transferred to a university hospital. Their pathologists requested the slides and the same thing happened. Because it was a rare breast cancer, multiple pathologists were involved.

It’s nerve wracking to wait. But it’s my understanding that this is not unusual for pathologists.

my initial biopsy was triple negative breast lobular breast cancer , then after " red devil " chemo for 6 months and mastectomy cells showed oestrogen positive breast cancer . so now on oestrogen blockers .

@susan7656
I am so sorry you are going through this. I was also diagnosed with LGASC in 2023 and the waiting for them to figure it out was so difficult!
Knowing how rare it is, I am very curious as to what you find out. I am always trying to figure out if I have similarities to others who are diagnosed with LGASC.
If you would, please keep me posted.
Take care!!

Hi @mchler73 - sorry you’ve gone through this, too.

Yes, I have LGASC, and it took multiple rounds of pathologists to confirm it. As you have learned, too, LGASC is so rare.

My oncologist described it as an aggressive cancer but with an extremely favorable prognosis. He said (as well as other LGASC online resources) that it typically does not metastasize; however, it is known to reoccur in the same area - that’s why we decided on a mastectomy and not just a lumpectomy with radiation.

Hard decision but I knew pretty quickly for various reasons that I wanted the bilateral mastectomy option and reconstruction.

I have been told that with the bilateral mastectomy, there is no data to show that chemo or radiation is helpful with LGASC.

I do have a CHEK2 mutation.

I am glad I did the mastectomy instead of just treating the left breast. The pathology at my mastectomy showed I already had atypical cells in my right breast that were not showing up on mammogram or ultrasound. And, my oncologist said that most likely this would not have been another LGASC cancer, but some other form of breast cancer.

So, that’s the scoop on my experience with LGASC. I will continue “surveillance” for 5 years with oncology.

Hope this is helpful. Let me know if you have any other questions. I am on week 3 of recovery from getting my tissue expanders swapped for implants, along with fat grafting (lipo) to smooth out the breasts.

Thank you for your reply!
I also have CHEK2 mutation and another gal on this support group, who has LGASC, does too! I am going to mention that to my Oncologist!
I only did lumpectomy and radiation but now I am wondering if I should have had a mastectomy? So hard to know!
I would love see if we have any other similarities besides the CHEK2?!
I am wishing you the best with your recovery and next steps! Take care!

@susan7656
So I was looking back at an old post about LGASC and CHEK2 and it was you who I was chatting with, LOL!
So as far as I know, there isn’t another person on here who has said they have both. Maybe just you and I?