PatriotGirl,

I don't ever post on this board anymore but just happened to look today and saw your post.

I had a really similar experience.  My diagnosis "unfolded" over the course of a month.  First it was DCIS on the mammo, then microinvasive 2mm, then, "Oh, you've got some small areas of contrast on your MRI,"  After I had surgery, it became, "Gee, we found a 3mm tumor, but that's all."  Later, I switched doctors and they ordered another pathology review.  This time, the message became,  "Well, good thing you decided to do chemo because we sent your sample back for another pathology report and there's a 6mm tumor..."  It kept going up and up and up!

The bottom line is this: no doctor can do a complete diagnosis  from the scans or the biopsy - as a friend told me, "Nothing is certain until they've got it sliced up on a slide."  Even then, as they dig through the tissue they've removed, they can find more junk buried in there.  That's what apparently happened to me. 

So who knows if they missed a node?   At this point, I don't care because we bombed it. I did 3 rounds of taxotere and carboplatin and a year of herceptin, just to be on the safe side.  It wasn't great, but it was bearable - and the peace of mind is WONDERFUL.    

You CAN get through this.  It'll eat up a lot of time and energy, but life does return to normal. 

Hi everyone, I was wondering what acceptable margins are in breast cancer surgery, I have just never really heard exactly, I had several margins in path they described, one was 7mm and the two others were 1.5cm...do these sound reasonable? Also what exactly is FISH, and for her2, were all of you tested by this method...I know it is really a mute point now, but now that I kind of have my bearings I was wondering...anyone?

Me three!  My IHC was 3+, so the FISH was not necessary. 

Liz~ Are you referring to IDC margins?  My closest IDC margin was 2 cm, but the closest margin for my DCIS was <1mm from posterior/deep margin.  This initially scared the crap out of me, but I consulted with several oncologists who said not to worry and no further treatment was necessary after my bilateral.     

Okay so now I understand why it said in my path, that her2 was overexpressed so there was no need to check it by FISH...mmh, I'm a little slow sometimes What would I do without my own medical team:):) oh and for anyone who cares, its raining here AGAIN, PLEASE!!!!!!!!! send us some sun here out west

Laura

I am so glad to have found this board.  I am learning more and more about breast cancer and realizing from the time I got the official 'news' that I had cancer in March to now, that this is not just one disease, but there are several types of breast cancers, and the treatment, prognosis etc etc etc can be so vastly different.  That being said.  My final pathology from 'the big' surgery on April 27th came back HER2+++.   I had another surgery this past Monday for SNB as cancer also turned out to be invasive...they excised axillary lymph nodes and all came back negative (yippee!!!).  But, this HER2+++ has me confused. 

I meet with a medical oncologist next Thursday and will find out more.  So, more "new" terminology and words like micro-invasion, Herceptin, hormone receptors, chemo, etc etc etc have me asking more questions, worrying about long term effects of additional treatments vs. just going ahead with the radiation and oral hormone hormone therapy. 

So, what do I ask now?  what does this all mean?  My margins  were clean, my nodes were negative....but, the chance of recurrence is greater now (so I'm told)....

janny, yes there is a big difference between DCIS that is HER2+++ and IDC that is HER2+++.

A large percent of DCIS is HER2+++ (I've read anywhere from 40% to 60%).  There is no good understanding of what this means to those who have DCIS.  There have only been a few small studies done on HER2+++ DCIS and the results have been conflicting - about half suggest that HER2+++ DCIS is more likely to become invasive and the other half show no relationship at all or an inverse relationship (that HER2+++ DCIS is less likely to become invasive). There also is no change in treatment for those who have HER2+++ DCIS vs. those who are HER2 negative.  Herceptin is not approved for women with DCIS (although there are currently a couple of clinical trials underway).  For these reasons, often HER2 testing isn't done on DCIS.

Where HER2 status becomes important is for those who have invasive cancer.  About 20% of IDC is HER2+++ and it's known that HER2+++ IDC is more aggressive.  Because of this, women who have even very small HER2+++ IDC tumors (5mm or sometimes even smaller) usually get chemo and Herceptin.  Someone with such a small IDC tumor that is HER2 negative would likely not get chemo and certainly would not get Herceptin. 

So for those who have a combination of DCIS and IDC, what's relevant is the HER2 status of the IDC, not the DCIS.

Yes, janny, almost without question chemo and herceptin will be recommended.  I think there is a  gray area for a much smaller microinvasion T1a (1mm-5mm) but anything over 5mm is pretty much a chemo/herceptin regimen.  If you end up doing TCH treatments, there is a wonderful thread called taxotere, carboplatin, herceptin.  It has tons of info! 

Weety911  -  I think I am 'just above' the gray area....with a very small 6mm area of IDC amongst the DCIS that was removed.  It seems soooo small, some days I just have a hard time realizing that something this small is making such a big impact on my life.  I am so anxious to talk to the medical oncologist on Thursday.  I also was assigned a Nurse Navigator and had a really good visit with her yesterday.  I think she's going to be an awesome resource to help me through all of this.  

My tumor was DCIS with 1mm invasion.  Chemo was not even considered.  One Dr. talked about Herceptin, but everything I've read says anything less than 5mm, the risks outway the benefits.  They did recommend hormone therapy. 

I saw my onco the other day.  He is putting me on the European course of treatment for HER2+ cancer (a study that came out of Finland).  The treatment course is shorter, so the side effects and possible 'unknown' long term side effects of the Herceptin are hopefully reduced with the same outcome. 

Now I don't know where I belong on this board though!  I thought I would be on the TCH course of treatment, but now I start with Herceptin and Taxol weekly for 9 weeks (I think, it's still sinking in) and then a course of FAC (Fluorouracil, Adriamycin, Cytoxan) every 3 weeks times 3 or 4.

Just nervous.  the Nurse Navigator said I should tolerate the first course pretty well, but that the second part was going to be tough.  I heard they have Adriamycin nicknamed the "red devil"...doesn't sound like much fun to me.

Take care everyone!  God Bless you all for being here!!!

Catherine,

We all totally understand how you are feeling. I'm fairly new to this game too. My BMX was on 3/16. I too, was the only one in my family to have ANY kind of cancer, and I'm 35 so that was a double shock. When I first found out about the microinvasion, I thought the world was collapsing (again). I would spend time on these boards and on support lines. I kept hearing again and again that it will get easier, and I must admit that I thought it was a crock But honestly, it does. I'm not even 3 months out, I still have TEs, but I really do feel like things are getting easier. I see other women that go through so much more and I do feel lucky that somehow we caught this so early. It blows me away sometimes.

Good luck in your upcoming dr appts! Let us know how they go. Try not to let it drive you too crazy

Catherine,

I had a BMX and no further treatment. At the time of my dx, the DCIS was ER+ so the BMX had a lot to do with wanting to avoid Tamoxifen and radiation. But, also note that I've been trying to have a baby for a while and wanted to continue that. Being 35, I don't have tons of time left for that, especially not 5 years. Mostly, I wanted to be as done with this as I could possibly get. However, after the invasion was found, it was ER-. Since they will only treat what is invasive, the oncs decided there was no need for Tamox. Also, since my invasion was so small, they felt that Herceptin/chemo was too much treatment. I'll tell that I didn't walk away from chemo lightly. I researched a lot and saw a couple of oncs. But in the end I was convinced. As long as you can sleep at night, you're doing good.

Oh, the HER2 is a protein and you can find a better explanation of what that is and why it matters on these boards than I can give you

You shouldn't need radiation, that's a major perk of the surgery.

I don't know about your lifestyle, but I really started researching lifestyle and nutrition and how that impacts cancer. I've made lots of changes since my dx, and have lots more planned. Being able to do something positive like that has really helped me a lot. I think it gave me a feeling of some measure of control over my body. The exercise also helped me like my body more, which is something I am struggling with about the BMX.

Hope this helps! Try to enjoy the Memorial Day weekend. Do something fun and try to forget about stupid cancer for a while

Willow13,
I was told that involvement of the nodes is the most crucial indicator for staging and therapy. Regardless of the microscopic microinvasions in my DCIS, I had chemo+H because of the micromet in one node.
The difference with HER2: as I understand, HER2+ microinvasions metastasize into the nodes faster - but you don't have to worry about that because, obviously, your DCIS was removed before that happened.

Hope this helps,

Jenna