Need advice; completely different cancer type this time
 

I was going to go back and find the thread I posted when I was rediagnosed, but I wanted to get this question out here and I didn't have time to go back and look. Here's what I'm wondering...I was having trouble getting the Her2 result of my new BC cells, so I had to get on the phone and call around. The biopsy never had ER/PR or Her2 run, and then when I had the mastectomy a couple weeks ago, the ER/PR was run but no Her2 result was coming back. After I made a bunch of calls, the hospital pathologist called me back and told me that the type of cells I have this time cannot be Her2; Marshfield Lab wouldn't run that test.

I haven't had the time to research this personally (all that writing and research I did last time was only for the specific case I had then, so I don't know anything about my latest case), and I haven't met with my oncologist yet. But I am certain that someone on this board can give me some info. Here is what the path test said: right breast, lower outer quadrant: intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen; negative for infiltrating carcinoma. This was ER+ and PR-.

So what do y'all think? New cancer, different pathology...is it correct that these cells could not be Her2+?

And I'm feeling great! Surgery was 7/1 and I went back to work full time last week. It's so much easier to have surgery this time--last time I was already dealing with 3 months of chemo before the mastectomy :-)

thanks!
Val

Dear Val

I am ER+ and PR- (and of course Her2+). However, the ER+ and PR- is a rarer pathology. I have done extensive research on this pathology and a positive estrogen receptor without a positive progesterone receptor always signals that something else is going on and this something else usually has to do with the Her family (you might be Her2 negative and perhaps Her1 is involved) but you really need to get that tumor tested for at least Her2 (since the test is readily available). They can't tell you that you are Her2 negative unless they have tested your tumor for it - period!!

You should also find out how ER+ you are - low, moderate, high? Should you go on Tamoxifen? If so, are you Her2 since Herceptin and Tamox go well together. I think you have alot of questions to get sorted out. Let us know. I hope you are recovering well and I am thinking about you.

I am adding this part - didn't notice that you really only had DCIS - bully for you! This is certainly early. It could be a reason for not testing for Her2 (because there wasn't enough to do so). I too had DCIS on the other side (both ER and PR positive on that and they only had 3mm of dcis so did a "preliminary" type test that indicated Her2 negative (but I was very positive for both receptors on that side so I felt this was probably correct). I would still want to know what they did that indicates Her2 negative as you had high grade dcis.

Thanks, Becky. I'm finding it very fascinating that this new case is completely different than last time. Is anyone aware of any research out there regarding new primary sites with different pathology? Maybe it's typical for the second primary site to be different?

Val

Dear Val

All I can say is my dcis on the left was completely different than the invasive cancer on the right. It is not unusual for them to be different - perhaps even more so in your case as it is several years between them. Mine were alittle surprising as they were concurrent so whatever environmental factors that combined with my genetic predisposition factors should have been somewhat similar. The only similarity was they were both 50% ER+. Otherwise, that's where it ended.

Hopefully others will respond as I would be very interested in other's contralateral experiences.

I also emailed Walt Carney about this, and he is going to check with his colleagues for some additional opinions. I'll post all the info I gather.

(I'll also post Walt's new email address in a separate thread.)

Val