Micro-invasive DCIS that is her2+++
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oh boy again
L:)
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You know, just realized under my diagnosis, it says below 1cm...I really meant 1mm, could this be the confusion...
L
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Laura-
you may want to add stage T1mic??? Just a thought and I just sent you a PM.
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Yes you are right , when I get home will fix it
Laura xo
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Sending lots of sunshine to everyone
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Last time (3 weeks ago) I went to my BS, she also checked under my arm, and gave me a breast exam, and said she'd see me in a year. Couldn't believe it. I see my Onco every 3 months and he again does breast exam and blood work. I also have to see my Rad Onco next week (I finished Rads last October. Hoping it will be the last time I see him. I complained to the Onco about all these visits and breasts exam (from everyone, BS, Onco, Rad Onco and Gyn). He said, "we're going to be all over you for the first year. Guess I'll get used to it.
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Does it matter that you're ER-/PR-? I thought with the + you couldn't have soy. My appt. with the nutritionist is Tuesday.
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Hey everyone!
I heard something interesting today. Someone told me that eating olive oil - uncooked, like as a salad oil, is particularly effective again HER2+ cancers. I don't have any sources to support this and I don't know where she got it. She was giving me some advice on things to eat and she mentioned this. Wondering if any of you have heard of this.
Kawee, how did the nutritionist go?
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Hi Imnop, that is funny, I have heard the same thing, I believe I read it in newspaper...I eat alot of it anyway...I think I will do some research
Laura xoxo
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I've heard it too from MANY...MANY sources. In addition, last week Dr. Oz had a show devoted to breast cancer and mentioned that Olive oil is particularly beneficial to those who had her2+++ cancers. There's also some studies about everning primrose oil and her2+++ cancers, stating that it's beneficial as well.
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From what I understand, you should eat the EVOO uncooked, but there are lots of ways to eat it. The easiest is to mix with balsamic vinegar and make it a salad dressing. You can also drizzle some over steamed veggies (makes them a little less bland) or pasta. Maybe the yummiest way is to mix with some italian seasonings (oregano also rich in anti-oxidants) and dip some whole-grain bread in it. YUM! You also use it when you make homemade hummus or pesto.
I'm not sure about keeping it in a dark place, but you definitely need to keep it away from heat.
On another note, I'm stressed out b/c I went to my gyno today because of some mid-cycle spotting. I thought it was nothing but wanted to be extra sure. He tells me he thinks it's nothing to worry about, but given all I've been through that he knows I want to be sure, so he wants to do a uterine biopsy and a scope (camera in uterus - I guess that's what it's called). All this "just to be sure". Had a pap like 2 months ago so we know it's not that. ARGH! Tired of tests!
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Hi Daisy, The way I love olive oil the most is to put some in a bowl and mix with garlic, and dump bread in it...OMG to die for...just make sure your significant other has it too
!Laura xoxo
Also Imnop, let us know on biopsy....good thoughts!!!!!!!!!
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I dont' understand why some posting for the lymph nodes read 0/1 nodes, 0/5 nodes etc. Why would they take more than 1 if the first one was negative.
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Lots of surgeons prefer to take more than one node when they do an SNB, just in case a few cancer cells moved through the node and travelled right on to the next node, without leaving a trace. Additionally, if the sentinel node isn't checked during surgery, there is no way to know if it's negative or not. Even if the sentinel node is checked and appears to be negative, until the node is more closely examined under a microscope after surgery, the doctor can't know for sure that it really is negative - it's not that unusual for someone to be told that their node tested negative during surgery but later, a very small amount of cancer is found. That's another reason why some surgeons take more than one node, even when doing an SNB. My surgeon takes 3.
And sometimes SNBs don't work - the sentinel node can't be identified. In those cases, more nodes need to be taken.
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I cancelled my nutritionist appt. I had to go to 4 Dr. appts. this week. GP, Onco, Rad Onco and with my husband to one of his. Was burnt out after all that. I'll reschedule.
I use EVOO alot to cook with. Didn't know it broke down? I use it instead of butter on garlic bread then rub garlic over the bread when it comes out of the oven. I rub it on chicken breast before putting them in the oven. I also pour it over vegies, potatoes and sweet potatoes before putting them in the oven.
INMOP35 - It's always something, isn't it? Got a note from the Gyno, says it's time for my checkup. Good grief, does it ever stop. I'm sure she'll have to check my breasts too.
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Daisy, sentinel node mapping doesn't always work. Most of the time, the dye and/or isotopes move through the breast and converge at a single node. But sometimes the dye doesn't move to the nodes and other times the dye moves to too many nodes. Prior to my SNB, my surgeon warned me that this happens in a small percentage of cases. And there certainly have been several women on this board who've had that experience. Here's a recent post where someone talked about this happening:
http://community.breastcancer.org/forum/96/topic/751675?page=1#post_1825363
And here are some articles that talk to this. This one mentions a 5.7% failure rate, where the sentinel node could not be mapped: http://www.ncbi.nlm.nih.gov/pubmed/15110806
This article indicated that "Mapping failure occurred in 5.1% of patients younger than 50, compared with 15.4% in patients 50 and older." http://www.cancernetwork.com/display/article/10165/88853
Edited to try to get the bc.org link to work.
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I am wondering if most surgeons use only one methold to identify the sentinel node or two methods?
My surgeon uses two metholds.
Which metholds have your surgeons used?
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I was injected with the dye and my surgeon used a gamma probe to locate the area of increased radioactivity. He found one fairly large blue and hot lymph node. He also found a smaller lymph node that had some radioactivity but no blue dye, which they also "harvested" (just to be sure).
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I was injected with technishium (that is not the correct spelling, but is how it sounds) and then I think like Amys, she used a gamma locater, she found 2 sentinel nodes and took two others because they were palpable, all negative. It hurt like a you know what when they injected the radioactve stuff, almost barbaric. In fact I am still angry about them not even sedating me a little. Its like okay, in a couple of hours were going to cut off your boobs, but in the mean time lets have some fun and and stick eight pricks in each areola..who hoo
Laura xoxo fyi I think were all pretty tough!!!!!!!!
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For those of you who show <1mm microinvasion, how did you do that? In the diagnosis section it only allows you to pick <1cm.
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My surgeon did both the color and the radioactive. And it hurt like a son of gun. It was quick but one of the most painful things of everything. Well, I take that back. The stereostatic biopsy was worse.
Kawee, I think you just need to put it in your signature not in the diagnosis part. Then I think you can keep the diagnosis part private so they don't both show.
My biopsy is not until 5/24, then I don't think I'll get the results for 2 weeks after that. So I think I just need to settle in and try not to worry. Poo!
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Thanks Imnop35. Also, I guess this is a dumb question for all of you. I was told I was HER2+. What is HER2+++.
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Imnop35 - thanks for the info. Is there a difference between HER2+ and HER2+++?
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I had both the blue dye and the isotopes. As I was lying under the camera (whatever that thing is), I was able to see the computer screen and I watched as all four injections travelled through my breast and converged at a single node. It took about 15 minutes.
When the sentinel nodes are checked while you are still in the operating room, it's important to know that this is a preliminary check only. There have been so many women on this board who've been told when they came out of surgery that they had negative nodes, only to find out later, once the final pathology report is done, that a few cancer cells were found. If they didn't know that the post-surgery results were preliminary only, this is quite a shock. The test that is done during surgery by necessity has to be done quickly, so later the node(s) are examined much more finely. If there is only a small amount of invasion, it might be missed during the first quick check but it would be found later. Just something that everyone should be aware of prior to surgery.
As for HER2+ vs. HER2+++, I think in many cases that's just how women choose to show their positive HER2 status because in fact, only HER2 2+ and HER2 3+ are considered to be HER2 positive: "In HER2-positive tumors, there is an excess amount of the HER2 protein on the cell surface. This is referred to as HER2 overexpression. IHC assays measure the amount of HER2 protein expressed on the surface of tumor cells.... Interpretation of IHC relies on a qualitative scoring system on a scale of 0 to 3+. A patient may score a 0 (negative), 1+ (negative), 2+ (borderline), or 3+ (positive) on an IHC test based on the reviewer's interpretation of staining intensity and completeness of membrane staining. With FISH testing, the results are quantitative instead of qualitative; tumors are interpreted as HER2 "negative" or "positive" by enumerating the HER2/neu gene copy number." http://www.herceptin.com/hcp/HER2-testing/faqs.jsp
"The IHC test gives a score of 0 to 3+ that indicates the amount of HER2 receptor protein in tumors. If the tumor scores 0 to 1+, it's called "HER2 negative." If it scores 2+ or 3+, it's called "HER2 positive." " http://www.breastcancer.org/treatment/targeted_therapies/herceptin/for_you.jsp
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Laura~ Did you have nodes removed from both sides? They only injected the dye and removed nodes on one side for me. Daisy~ I was also told before surgery that even if the nodes came out negative at the time of surgery, there was still a very small chance that they may find something in the final pathology report.
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Hey Amy, I did have 1sentinel node out just for safety in good breast, because as we all know once the breast is gone so is all the information...I hope you are well, I have been thinking about you, hope you have mothers day off....:)
Laura xoxo
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Well, that sounds like a very smart idea! Where were you when I was having surgery?! I've been thinking about you, too, dearie
Hope the numbness from SNB is subsiding. Mine went away, but once in a while I get a little twinge. 0 -
Daisy, see the posts in the following thread from Marion and msmpatty: http://community.breastcancer.org/forum/96/topic/749555?page=1#post_1753212
And see the posts in this thread from IndyHusband, mbpetit, mmattinson, liefde, TiffanyGanell, codavis: http://community.breastcancer.org/forum/96/topic/706857?page=1#post_947920
Those are 8 examples of cases where the initial report on the sentinel node after surgery indicated no nodal involvement, but nodal status changed after the final pathology report was available.
Edited to Add: 3 more examples here: http://community.breastcancer.org/forum/6/topic/651696?page=1#post_651728
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Nope, I don't spend a lot of time on the board these days. I found those examples in about 5 minutes, using the "Search" feature. I input something like "SNB pathology change" and about 35 threads popped up. I scanned through the list and quickly found the 3 discussion threads that I linked in my earlier post. You'd said that "I don't recall seeing anyone stating they were told their Sentinal Nodes were clear and then told they contained cancer" so I found those examples. At that point I stopped looking. I was not trying to create a comprehensive list of all the women who've received the "all clear" on their nodes after surgery, only to find out from the final pathology report that in fact some cancer cells were found in their nodes. So you shouldn't assume that those 11 examples are the only cases where women have this experience - no doubt there are more. It really does happen quite a lot.
But, this has nothing to do with the accuracy of an SNB. Yes, an SNB is a reliable test - most studies put the accuracy rate at 95%+. What this discussion is about is the accuracy of the pathology analysis that's sometimes done on the sentinel node while the patient is in surgery. This was to your point, from your May 7th post, that "The Sentinel Nodes can be analyzed right away, if any cancer is found then he said he would take out more nodes." Yes, the sentinel node can be analysed right away, but because this is such a quick look (by necessity, since the answer has to get back to the surgeon while he/she is still operating), if there are only a small number of cancer cells, they can easily be missed. For this reason, a much more thorough analysis of the sentinel node(s) is done after surgery. This is why what we hear immediately after surgery is preliminary only; even if we're told that our nodes are clear, we may find out, once the more thorough pathological analysis has been done, that the sentinel node is positive.
I agree completely that women should not be worried about the accuracy of the SNB procedure, although, to your point, it is very important that SNBs be done by surgeons who are experienced in the procedure. But it's equally important that women understand that if they get the good news after surgery that they are node negative, there is a possibility that the news could change once the final pathology report is done.
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I'm confused about my actual diagnosis! This whole process has been a whirlwind in three short months. Anyway, my original diagnosis was DCIS. After my lumpectomy, 3 foci of microinvasion were discovered and I guess I was changed to IDC. I am hormone receptor negative but HER2 triple positive. I've since had a sentinel node biopsy with 8 nodes removed. 2 had cancer so now I am awaiting my appointment with the oncologist and have been told that I probably will need chemo.
Bottom line, does this all mean that I no longer have DCIS? Did I have two kinds of cancer simultaneously? I have had two surgeries and two stereotactic biopsies in 3 months. I have such mixed emotions about this whole process and sometimes question this "racket." My surgeon told my husband and I on two occasions that she would be "shocked" if I had cancer in the nodes. What a shock it was to then get the news! I can accept whatever needs to happen but I don't like feeling as though I am a biology experiment! Can anyone tell me how concerned I should be about the facts in my case? From what I've read, I think I have aggressive tendencies but since everything has been "micro" in size, I'm not sure how to interpret this. Thanks for your help!
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