Everchanging Pathology

Hubby

Core biopsy: 50%ER+;3% PR (borderline)
Tumor pathology: triple negative
Redone pathology from core biopsy: 1st told 40%ER+; PR- over the phone; then when we given the actual report, it says 20%ER+;30%PR+

Now we are waiting for the Oncotype test results. Hopefully we can trust them!!

TawnyS

I really am frustrated for you
I just don't know what I'd do with things coming back one thing and then another. I am wishing you the best. A life is on the line...please if you don't feel as though you can trust whoever is giving you such different info then get a second opinion. Best of luck and keep us posted please. : )

CarrWilson

My pathology is confusing too
Every step of the journey, my pathology has confusing to the MD's that are doing the follow up treatment. My Surgeon wanted to do more surgery, the Oncologist was confused and supported my decision to do chemo even though my OncotypeDX was in the moderate range of 16. My case is going to the tumor board for the "third" time this Friday. I feel my treatment is by consensus not by what is the correct regime. I am also very frustrated by this. My report has confusing margins and areas that the occured (did they get it all, or not?).

After my Rad Onc said he could not figure out the path report and there was no supporting written documentation from the previous tumor boards, I decided to find out who was the Chief of Pathology and ask them to review my report. Unfortunately, the Chief was the one who initially read and wrote the report. (It appeared that English was the second language of the Pathologist, but English is his first language) My next step was to contact Patient Safety at the Hospital where my pathology was read. I told them I was not angry or upset, just concerned and felt I needed to be my own patient advocate. The person I talked to said she had never heard of this happening before, and would be speaking to her boss about how to handle this confusion. She thought I had a very legitimate concern and she will be getting back to me this week. (She said the usually reports are the nurse was "mean" to me, the Doctor did not return my calls, she had never had this kind of concern).

I have been watching your reports of triple neg, no triple, varying positives, varying percentages. I would encourage you to contact your Patient Safety person or the equivalent person where your wife is getting treatment. Sometimes it helps to have internal independent review...we may not always know what is happening within the walls, but I am hoping to get satisfactory results.

This journey is confusing enough without conflicting results, best of luck in getting a "final" diagnosis.....

-Carrie

greyhoundluvr

Wow....
I just can't imagine how confusing and frustrating that must be. I am used to path reports changing after the surgery and have seen that pretty frequently but have neverseen anything crazy like this. You said that they re-ran the core biopsy pathology but I wasn't clear on whether they re-read the actual tumor excision pathology?? I would think that would be the most critical one to read comprehensively and make sure everyone concurred. Best of wishes on a good outcome on the oncotype!!

Chris

carkris

greyhoundluvr said:

Wow....
I just can't imagine how confusing and frustrating that must be. I am used to path reports changing after the surgery and have seen that pretty frequently but have neverseen anything crazy like this. You said that they re-ran the core biopsy pathology but I wasn't clear on whether they re-read the actual tumor excision pathology?? I would think that would be the most critical one to read comprehensively and make sure everyone concurred. Best of wishes on a good outcome on the oncotype!!

Chris

i dont get this mine were
i dont get this mine were checked at two hospital and the same. (I did second opinions) keep at it untl you feel comfortable.

Hubby

greyhoundluvr said:

Wow....
I just can't imagine how confusing and frustrating that must be. I am used to path reports changing after the surgery and have seen that pretty frequently but have neverseen anything crazy like this. You said that they re-ran the core biopsy pathology but I wasn't clear on whether they re-read the actual tumor excision pathology?? I would think that would be the most critical one to read comprehensively and make sure everyone concurred. Best of wishes on a good outcome on the oncotype!!

Chris

No they didn't
This is Sloan, so they assumed that the first pathology by a local hospital must have been wrong, so they asked for additional slides from them. They stained some of the slides, then they said they couldn't read the slides, and had to stain some of them by hand.

They said that if the results came back matching the original pathology that they would look at their own results again, which they didn't do; but sending out for an Oncotype test sort of is doing. I have more faith in the Oncotype people to get it right at this point. At least they are independant of the whole process.

greyhoundluvr

Hubby said:

No they didn't
This is Sloan, so they assumed that the first pathology by a local hospital must have been wrong, so they asked for additional slides from them. They stained some of the slides, then they said they couldn't read the slides, and had to stain some of them by hand.

They said that if the results came back matching the original pathology that they would look at their own results again, which they didn't do; but sending out for an Oncotype test sort of is doing. I have more faith in the Oncotype people to get it right at this point. At least they are independant of the whole process.

No Doubt
Sloan has an outstanding reputation and I can see why they would rely first on their own results. It has got to be immensely frustrating to have something this important be "gray" when one of the main things we want are specifics and understanding of what is going on. I can only hope that you and your wife are very comfortable and confident with the oncologist - if anyone can make sense of all of this and give you honest and unbiased answers about whether the inconsistencies would make any difference in the treatment plan, I would think it would be them. I wish you both the best!

Chris

New Flower

Hubby said:

No they didn't
This is Sloan, so they assumed that the first pathology by a local hospital must have been wrong, so they asked for additional slides from them. They stained some of the slides, then they said they couldn't read the slides, and had to stain some of them by hand.

They said that if the results came back matching the original pathology that they would look at their own results again, which they didn't do; but sending out for an Oncotype test sort of is doing. I have more faith in the Oncotype people to get it right at this point. At least they are independant of the whole process.

I would not trust core biopsy
too much. When they take tumor out with clear margins and then analyze it the results make more sense. Treatment plan can be similar regardless distribution/% of Er+ cells. Sloan is a very reputable institution and of course everyone can make mistakes. I would ask to repeat tumor pathology and forget about core biopsy.
Keep us posted.
Good Luck