Micro-invasive DCIS that is her2+++
Comments
-
After my sentinel node biopsy, the doctor told my husband that everything looked good and there were no surprises. A week later I visited her for my post-op appt. She told me that cancer had indeed been found in two of the eight nodes she removed. These did not show up during the live process, only later during frozen section/dye use. I was shocked as well, because I had been under the impression that the verdict was in at the time of surgery.
0 -
Patriotgirl,
I'm so sorry that you've been going through this series of biopsies and surgeries, and getting worse news all the time. I can appreciate that you feel like a biology experiment, if your doctor keeps telling you that something isn't likely to happen, and then it does happen. But the fact is that approx. 20% of women who are initially diagnosed with DCIS, via a biopsy, end up with a more serious final diagnosis, with anything from a microinvasion (as I had) to more IDC and/or nodal involvement (as you have). And for those who have even just a single microinvasion of invasive cancer, there is approx. a 10% chance of nodal involvement. So your surgeon shouldn't have said that she would be "shocked" if that happened to you. It's not likely, but it's certainly possible. When I had my SNB, my surgeon told me that he didn't expect that I would have nodal involvement but he did explain that there was a 10% chance that I might. Fortunately, I did not.
I'm sorry too that you were shocked to receive the news of your nodes being positive, after hearing post-surgery that your nodes were clear. As I said in my earlier post, this actually happens quite a lot. It's not surprising, given how quickly the pathology analysis has to be done while you're in surgery and given how tiny and difficult to find cancer cells are. It's exactly because of situations like yours that whenever this topic comes up, I always try to remind women that the post-surgery results are preliminary only, and are subject to change.
To your question, yes, the fact that several small invasions of IDC were found and the fact that you have nodal involvement means that you have IDC, not DCIS. Of course you still had some DCIS in your breast, along with the IDC, but that's true of about 80% of women who have IDC - this is because IDC develops from DCIS so the two are often found together. In cases where both are found, the DCIS, as the lesser condition, is pretty much ignored because whatever is done to address the IDC will take care of the DCIS. The DCIS does need to be removed but other than that, it's really not an important part of the diagnosis and it's not considered in the treatment plan.
Good luck getting through rest of your treatment plan. Hopefully the only surprises from this point forward will be good ones!
0 -
Beesie,
Thank you for your nice reply. I am so hungry for constant information, reinforcement and comraderie! Responses such as yours are very helpful.
0 -
I'm glad that I was able to help. You'll find lots of great support from the women on this discussion board and the information sections of bc.org have lots of good info about breast cancer diagnoses and treatments. You might want to check out the HER2/neu Positive Breast Cancer forum (5 forums below this one on the main list of forums) because that's where you'll probably find most of the women who've had diagnoses similar to yours. Of all the factors in your diagnosis, I would say that the most significant, in terms of how it will influence your treatment, is being HER2+++.
0 -
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.
0 -
KaidDog - Thank you!
0 -
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?
0 -
Laura-
I can answer the margin question...
Most doctors agree that a 2mm margin is satisfactory but the bigger the margin the better. There are some studies showing that women who have larger margins, tend to do better and I recall atleast a few on my consulting oncologists making the same comment to me. An good example is like a rot spot in an apple, you want to get out the rot & a little extra. Actually one of my doctors used that example and it stuck to me.
Your margins are well above being adequate, so rest assured. In my final path report all my margins were over 1cm except towards the skin, where my surgeon removed extra skin just to be sure.
Below is some info I actually found on this site, so I copied and pasted it: I also sent you a copy by e-mail.
FISH vs. IHC testing accuracy?
- Email to a friend
- Question from Renee: If you had a 2+ staining on the standard HER2 ("IHC") test, but a subsequent 1+ staining on a repeat test using the FISH test, can you really be certain that your HER2 test is negative?
- Answers —Ann Ainsworth, M.D.: HER2 testing can be done using a tissue block and staining it with something that is attracted to the HER2 protein. HER2 testing is also performed by another test called FISH. The FISH test looks for the gene itself. The IHC stain is less reliable at the 2+ level than the FISH test. In our laboratory, if the IHC test results are 0 or 1+, the HER2 is considered to be negative. All 2+ and 3+ IHC test results are automatically sent for FISH testing, because this does a better job at that level of IHC staining and is the most reliable test in that circumstance.
A combination of the IHC and the FISH tests are performed in the laboratory to produce the most reliable and accurate results. - Marisa Weiss, M.D., president and founder: Ultimately, your medical oncologist will depend more on the FISH test for the final answer. The reason why we work so hard to come up with a right answer to the question is it cancer HER2 positive or not is because it can have a significant impact on the choice of treatment.
0 -
If I remember correctly????
I think the FISH test is more commonly used if the IHC test comes back borderline for the Her2+ factor. Then the FISH test would be used to determine the final Her2 positivity, if initially it came back questionable. My pathology came back Her2+++(triple positive) using the IHC, so I was told the FISH test wasn't necessary since it came back strongly positive for Her2+++.
Hope I made sense and am wondering if Her2 testing protocols have changed since Feb. 08....
0 -
No, I think it's still the same protocol. Mine came back IHC 3+ so no FISH necessary in my case either.
0 -
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.
0 -
Amy-
good question about the margins...my path report doesn't go into detail. I know that my IDC was towards the skin. I had mico calcifications so there was no lump to go by so my surgeon just used the wire as her guide that was inserted into my breast (through live mammogram guidance) prior to surgery to help guide her & just by luck I ended up with wide margins. After my 1st surgery, I had one questionable margin which was towards the skin, so during my re-excision, my surgeon just removed extra skin to be sure that margin was clear and that there was no cancer left behind and fortunately there wasn't anymore cancer found.
Remember....you consulted with some of the best oncologists in the country, I'm sure you are in excellent hands too : o )
Also, remember DCIS is contained..non-invasive.
0 -
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
0 -
Laura-
we've had sooooo much rain here in the northeast, that I sometimes think I live in Seattle. I have family in Seattle and although it's beautiful there, it does rain alot. Sharing some of the supposed sunshine we're supposed to receive this weekend. I hope the weather man was right, we're having a b-day party for my just turned 3 yr old (who was only 8 months old when I was diagnosed).
Sending (((hugs))) to all!
0 -
BTW Laura-
it sounds like you're getting excellent care too but it doesn't hurt to double check with your "medical team" : o)
0 -
Hi Liz, I do hope your weather holds for birthday party, I know how that is for the little ones!!
Its a beautiful thing...the best!
Laura xoxo
0 -
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)....
0 -
and.....also, is there a big difference between DCIS that is HER2+++ and IDC HER+++ ???
0 -
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.
0 -
Thanks Beesie, I just found out some of what you just told me at my BS office today. It helped me read what you wrote on this board and now I get to try to absorb it again. She did tell me that they would not have tested for HER+++ had I not had the invasive cancer. Soooo, I guess I am having chemo and herceptin. I see my medical oncologist Thursday to get things set up, and I had a nurse navigator call me today and tell me that she will be the one who helps me manage my tx and side affects. I really got a lot of good info from her as well. Well, here's to another 'bump in the road'.....
0 -
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!
0 -
Daisy-
There is no clinical diagnosis as stage 1 DCIS.
All DCIS is stage 0.
It's an open forum so post if you like, or don't post if feel you don't belong here, it's your decision.
0 -
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.
0 -
Janny, I hear you. My tumor was 7mm. The onc didn't even really put chemo out as an option--she just said it matter-of-factly. Luckily I had already done my homework on this site, so I pretty much new I was looking at chemo. Otherwise, I think I might have been surprised with it being so small and all.
0 -
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.
0 -
Part of the problem with herceptin is that no one knows what the long-term effects might be. The studies that they are following (for adjuvant treatment) are only in year 5, so it is quite possible (or not) that there may be things that show up years after herceptin treatment. I think that is why they are so cautious with small microinvasions. They just don't know, so why take the risk when recurrence rates are so low. Now with larger invasion, the risks start going up (I think I read somewhere that without chemo/herceptin, the recurrence rates for stage 1, >1 cm tumors, can be as high as 25-30%!) So with those chances, herceptin, even with the unknown risks, is routinely given without hesitation. Tt is the smaller tumors that create the controversy--at what point is it worth the risks to reduce a recurrence that is "most likely" not going to happen?
0 -
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!!!
0 -
Hello Everyone! I am newly diagnosed and am so scared. I went ahead and had a bi lateral masectomy, with SNB which was negative. They initially told me it was DCIS multicentric of the left breast. Final pathology found a .1mm and a 1 mm microinvasion (2 foci) of the duct in the left breast which put me in a whole other category. Right breast clear. I am ER and PR positive..I don't know what HER is? I am going in next week to talk about the rest of my treatment. (I'm the first one in my extensive family to have BC)...any comforting words would help me at this point. Thank you...Cath ps Am I in the correct forum for what I have?
0 -
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
0 -
Dear Imnop,
Thank you so much for your post. I was knocked for a loop with this news. Never thought it would happen, but here I am. Do you mind if I ask what your treatment was? I don't know if I will be taking tamox, I heard that Radiation wouldn't work with my bilateral masectomy. I feel so uninformed. I appreciate your comforting words....thx again, Catherine
0
