Micro-invasive DCIS that is her2+++
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Laura-
reading your last past, that's exactly what my happened to me, most of my doctors were questioning the prognostics on the invasive component but only two followed up and one of the doctor's had my specimen re-examined to be sure nothing was missed and thankfully nothing was missed but the prognostics were not redone. I recall reading that you need a certain amount of invasive tissue (over a mm?) to be able to test it
, I don't recall where I read this and I lost alot of my saved BC info due to a computer virus I got last year 
. I spent months doing research and saving everything that was relelent but it's all lost now 
.You have only 10 cells actually documented, I wonder how aprrox how many cells would amount to a mm? My pathology stated "a focus of IDC of less then 1mm in it's greatest dimension".
Beesie, have you ever come across info that stated how many cells make a mm?
Just finished my coffee and better get busy. Have a nice day, it's supposed to be sunny and almost 60 here today
Liz
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Hi Liz, Its funny you should ask about amount in mm, because when my onc was explaining my situation to me she said" think of it like this, there are 100,000 cells in a mm, so that kind of gives you a perspective of what this is for you". I don't know, I still have a hard time wrapping my head around it...I mean 10 cells!! Anyway its just kind of interesting. FYI, when my onc did question the pathologists regarding Her2...he did not like being questioned.(not happy in his work I guess)
Enjoy your sun,
it is beautiful here today but 13 yr. old has 102 templmk, Laura xo
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Liz, funny you should ask about the number of cells in a mm of tissue. I've actually been searching on that.
Here's some of what I found:
- The head of a pin is 2mm. A red blood cell is 1 / 1000th of that size. Unfortunately I don't know how the size of a red blood cell compares to the size of the cancer cell. But if it's the same size, that would mean that there are 500 cells to a millimetre. http://www.cellsalive.com/howbig.htm
- According to wikipedia (not my favourite source!) a typical human cell is 10 micrometres in size. There are 1000 micrometres in a millimetre, so that means 100 cells in a millimetre.
- Another site says that the average cell size is 10 microns. There are 1000 microns in a millimetre which means that there would be 100 cells in a millimetre. http://science.howstuffworks.com/cellular-microscopic-biology/cell1.htm
So.... it seems that the answer is anywhere from 100 cells to 500 cells. Whatever it is, I simply can't imagine that with only 10 cells, there was any possibility that they were HER2 tested. It just seems impossible.
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I can't imagine how any microinvasion can be tested for anything. Isn't it too small to separate from the tissue?
Also, if the type of the microinvasion does not affect the treatment (when nodes are clean) - why the additional cost?
Only when the (real) invasion happens, it is tested for HER2 - at least at our centre. In my case, the 1.1 mm micromet in the node was (re)tested and it was ER- HER2+ (DCIS was variably ER+, from very low to very high, grade 2). The micromet was still too small for grading.
I must say, I was quite scared by petjunkie's story. Wish I had a bone scan before the treatmet ...
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Hi Jenna, I am the one with 10 cells, I agree, seems weird, but this was the patologists stance...I guess I have some Questions for my first onc appt in April....yikes
Laura
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Hi, Can anyone tell me if they were offered Herceptin for such early stage? I was also .2cm, stage 1, er pr negative, her2 positive. How can you tell how many ++ you are on the pathology?
Cookie
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Ladies-
my surgeon & oncologists were skeptical about there being enough of a sample to do prognostics with only a microinvasion..... but yet when I asked about another test, I think....it was the Ki-67????, I was told that there wasn't enough of a sample....
now it truly makes me wonder? Pathologist's don't like being questioned, at least that was the impression I got, based on my experiences.
This conversation is very interesting, especially for you Laura with only 10 cells
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Jenna, a microinvasion is a real invasion, just a tiny one. It always surprises me that with just a microinvasion, there is a 10% chance of nodal involvement. I understand your point, though.
And I agree. As I said in one of my earlier posts, I'm actually glad that mine wasn't HER2 tested. Since an HER2+ microinvasion doesn't affect the treatment, and at this point is not known to affect the prognosis, what's the benefit in knowing, other than to cause worry? My surgery was done at a hospital with a major breast cancer research lab and I authorized that my case and my pathology could be included in research studies. So I suspect that the HER2 testing may have been done on my breast tissue (both the DCIS and the microinvasion) but the information wasn't given to me, which is just fine with me. It would be interesting to know however how small a sample can be tested. One consideration might be the number of tests that need to be done, since some tests destroy the cells. So maybe with a microinvasion it's a choice - you can get some tests but not all because there isn't enough tissue and the pathologist (or your doctor) have to decide which tests to do. Just speculating here......
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The curiosity get the best of me, so I submitted the following the question to the JH expert question and answer forum. They were very helpful to me when I was initially diagnosed. Here's the Q & A.
Asked Publicly Submitted Question 3/7/2010 Hello-
I am not able to find a definitive answer to the following questions:
1. Approx how many cancer cells make up a millimeter?
Such as with the staging of breast cancer T1mic.
2. Is it possible to get the hormone status and her2 status on a microinvasion of less then 1mm?
Thank you in advance.Replied JHU's Breast Center Reply 3/7/2010 It takes millions of cells to be measurable. T1mic means micromets. literally just a few cells. i have personally not seen it possible to determine HER2neu status on micromets. sometimes what has been tested is the DCIS. testing DCIS however is not standard of care and the information doesn't influence treatment,at least not to date. maybe some day in the future. L 0 -
Beesie,
reading one of your earlier posts, for your microinvasion, it could have been helpful to know whether it was ER+ since you were deciding on whether to have Tamoxifen. My DCIS was (variable) ER+ but the invasive part was not at all.
Cookie, I asked the oncologyst for the HER2 status. You can also require the release of the biopsy report. But, as I understand it, at the point when the patient is notified, it has already been accepted as HER2+++. If the initial test shows HER2++ then a different method is used to dtermine whether it is HER2+ or HER2+++. This is how I was explained.0 -
Hi all,
My mom was diagnosed with BC a month ago and she has done her lumpectomy
Her tumour is 2.5cm with 1 node micromet out of the 5 that was taken out. ER-PR-HER2+
Oncologist is recommending 6xchemo + herceptin + radiation. I am just thinking if the chemo is necessary for micromets? They say herceptin wont work without chemo. And also if it is necessary for her to go through 6x chemo instead of 4?
Should we go for 2nd opinion or chemo is the only way out with herceptin?
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Bugsfire-
Her2+++ cancer is very agressive. A 2.5cm tumor whether it was her2+ or not, chemo is usually recommended unless there are unusual risk factors that need to be considered. 6 chemo's, radiation for lumpectomy, and 1 yr of herceptin seem to be a common treatment for her2+ tumors and SIGNIFICANTLY improve one's prognosis. From visiting the various forums and reading many articles, herceptin is like liguid gold and works best with chemo according to the current studies. Another good source of information for her2+ tumors is www.her2support.org.
I am not a doctor but my advice is to get a few different opinions since everyone's pathogy is unique and everyone has risk factors that need to be considered when deciding on the appropriate treatment plan. Wishing you and your mom the very best.
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Cookie,
to answer your question; I was at stage T1mic(DCIS, grade 3 with a focus of less than 1mm of a microinvasion) I had a negative sentinel node, my prognostics were ER/PR- and her2+++. I had a lumpectomy and re-excision to clear a margin (my margins are over 1cm) and I had 7 weeks or radiation. I consulted with numerous well known oncologists and after reviewing my pathology ALL felt that the risks of chemo and herceptin outweighed the benenfits for me. I did question using Hercpetin alone but my doctor's felt it's risks would outweigh the benefits. I hope that answers your question about my treatment. After being diagnosed with BC, I know request a copy of everything and have my own medical file. Wishing you the very best.
Liz
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Jenna, my DCIS was ER+ and it was assumed that my microinvasion was ER+ too. I have learned (from your recent posts - thank you!) that it appears that in some cases ER/PR status may change as cells move from the breast into the nodes but there are very few studies/articles on this and at the time I was diagnosed (2005), there was even less information about this. There seems to be even less info on whether or not cells change ER/PR status as they evolve from being DCIS to becoming IDC. If you have some studies that show this, I would really appreciate getting the links because so far I've drawn blanks. So the assumption that the ER status of my microinvasion was the same as the ER status of my DCIS would have been the common assumption at the time. I suspect that it probably is the common assumption even today.
In any case, I made my decision to not take Tamoxifen based on the assumption that my microinvasion was ER+ so testing the microinvasion wouldn't have made any difference. With a microinvasion I do have a risk of distant mets, but my oncologist told me that the risk is in the range of 1% and everything I've read seems to confirm this. So while distant mets scares the @#*% out of me, for a 0.5% risk reduction, I wouldn't choose to take Tamoxifen.
Liz, that's a very interesting answer from John's Hopkins. Based on this response, I wouldn't be surprised if many of us who have microinvasions along with DCIS only know the ER, PR and HER2 status of our DCIS.
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bugsfire, go for that second opinion, and maybe even a third opinion. Chemo can mean many different combinations of agents, so even if several doctors feel that your mother should have chemo, the specific agents, and number of treatments recommended may be different.
Also, make sure that they take into account any other health issues your mother may have. One of the biggest issues with Herceptin is the cardiac damage it can cause. Some chemo drugs also have that as a known side effect. Since heart disease kills 1 in 3 women, this is not a minor side effect and deserves more consideration than it is sometimes given. It doesn't do anyone much good to beat the cancer, but die or become an invalid as a result of the treatment.
Your mother deserves to feel confident in the treatment she chooses, and yes, the doctors can recommend, but in the end, it is her choice to do chemo or not.
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Beesie-
your post about "distant mets scares the @#*% out of me", I couldn't agree with you more
!!!! Thinking back to two years ago (my memory is getting a little fuzzy
) when I was consulting with the various oncologists about my treatment plan, I vaguely recall a few oncologists questioning if the pathologist was actually able to test the prognostics on such a tiny microinvasion. I'm really starting to doubt it now....fortunately it wouldn't have changed my treatment plan. All this is bringing up some more vague memories(from I was initially diagnosed) such as when my brother-in-law, who is a physician(Emergency physician/Family medicine) gave my pathology reports to a few of his colleagues who were oncologists and l recall atleast one (may be more?) of the oncologists' commenting about "only a few cells" in such a tiny mircoinvasion.....this comment supports the JH answer. I know my pathologist was questioned after the fact....but it still makes me wonder? All of this is very interesting.0 -
bugsfire,
Herceptin alone still seems far from being enough for invasive HER2 cancers. See Figure 2 in this article, for example:
http://www.cancernetwork.com/breast-cancer/article/10165/1477878?pageNumber=1
One of the articles on significance of the micrometastases :
http://www.medpagetoday.com/MeetingCoverage/SABCS/12195I had 8 rounds of chemo for HER2 1.1 mm micromet. Which 6x chemo is your mom suppoesd to have?
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Daisy-
According to all my doctors, my official diagnosis is microinvasive DCIS, stage T1mic. Once my surgeon made a comment about me having only "DCIS" and I replied to her, yes her2+++ microinvasive DCIS that you initially told me not to google the fact that I was her2+ or "you will freak out". My surgeon is very skilled and has an excellent reputation but she was the 1st doctor to scare the crap out of me about my her2+++ status. After I made that comment, she recalled the comment she initially made to me and has since called called my diagnosis "microinvasive DCIS stage T1mic" which is the same diagnosis that all my other doctors I have consulted with call it too. "Microinvasive refers to DCIS with 1mm or less" of a micoinvasion along with the DCIS.
I have read that the majority of DCIS is her2+++ (depending on the source 75-80% of DCIS is her2+++). But, I was also told that with plain DCIS that contains no microinvasions or IDC that the her2 status doesn't matter since it's non invasive therefore stage 0. According to all the staging standards & my doctors, plain DCIS can only be stage 0. The staging is based on the invasive component, along with the node status and other factors. Stage T1mic which is the earliest form of stage 1, that is what my official pathology report states.
I hope I made sence??? I understand a lot but sometimes, I find it difficult to put my thoughts into words.
Also, my logic is that traditionally "micronvasive DCIS" had an excellent prognosis until her2 testing came along about 10years ago....now because of the her2 testing they're not sure?....this just doen't make sense. So if today there still wasn't her2 testing for microinvasive DCIS, the prognosis would still continue to be excellent...right...
As far as recurrence, I have been told and have read numerous times that the greatest risk of recurrence with high grade, her2+ cancers is with-in the 1st 2 years after that the risk starts to drop dramatically.
BTW, I love your doggie pic. Eventually I will change my avatar to my doggies too.
Stay well.
Liz
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Jenna-
I have heard from someone who is a former patient of Dr. Slamon(the creator of Herceptin) that he did a study on Herceptin alone and that when used alone it only gave about a 10-12% benefit. From what I have read it seems to work best with the Taxols according to the latest research. Obviously, the appropriate chemo/Herceptin combo needs to be determined by an oncologist which is based on the pronostic factors of each individual patient.
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Liz, I think you and I have been saying the same thing on this, but just to confirm, the HER2+ status that is being discussed as part of this forum is the HER2 status of the microinvasive component of the cancer, for those who have both DCIS and a microinvasion. HER2+ status of DCIS alone (or even of the DCIS component, for those who have both DCIS and a microinvasion) is not currently considered to be medically relevant. Correct?
This evening I've been reading up on HER2 testing. I was aware that there was some controversy about HER2 testing and that there have been concerns about the accuracy of the IHC test. (There are two tests - IHC and FISH.) Reading up on this has been quite interesting - the guidelines that have been issued to try to ensure accurate testing are quite detailed and stringent. Given the above discussion, one of the things that struck me is the number of times I've read that testing should be done on "invasive cancer" or the "invasive component of the sample" or "not on DCIS".
College of American Pathologists - HER2 Testing Guidelines and ...HER2+ Breast Cancer: Biologic Relevance and Optimal Use of ...
American Society of Clinical Oncology-College of American ... if you click on "Full Text" you get the following very detailed article: http://jco.ascopubs.org/cgi/content/full/25/1/118
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Thanks Liz for your note.
It adds to my "good feel" about the therapy I was given. I just finished Taxol two weeks ago and it was with Herceptin that will continue for a year (hopefully).
Beesie, I read only one of your articles and I am happy that at least my HER2 status was not in the gray area.
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Beesie-
yes, you and I have pretty much if not always been in agreement.
"I think you and I have been saying the same thing on this, but just to confirm, the HER2+ status that is being discussed as part of this forum is the HER2 status of the microinvasive component of the cancer, for those who have both DCIS and a microinvasion. HER2+ status of DCIS alone (or even of the DCIS component, for those who have both DCIS and a microinvasion) is not currently considered to be medically relevant." YES, CORRECT
I've been told the majority of DCIS is her2+++ but since it is non-invasive, the her2 status has no meaning based on what we know at this time. My understanding is that plain DCIS (stage 0, that is totally contained within the duct and contains abosolutely no IDC) is not routinely tested for the her2 status. Am I correct?
Keeping in mind what I posted in the above paragraph, the her2 status is relevent only to any invasive component, IDC, microinvasion etc. that is in addition to the DCIS.
Please let me know if I caused confusion???
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Liz, it's clear to me!
Jenna, I know how you feel. If I'd had HER2 testing and my results were borderline, I wouldn't know what to do and I would be very frustrated. As it is, the more I read up on this, the more glad I am that I don't know my HER2 status, since it wouldn't have impacted my treatment and would just have caused me concern. That gets me back to an excellent point that Liz made earlier. All studies on Stage I T1mic (DCIS w/ a microinvasion) have shown that the prognosis for women with this diagnosis is almost as favorable as the prognosis for those who have pure DCIS. These studies span a long period of time and obviously include those with HER2+ DCIS and/or microinvasions and HER2- DCIS and/or microinvasions. So the fact that now HER2 testing is starting to be done on DCIS and on microinvasions doesn't change the fact that the long-term prognosis is very good. Since there are no different treatment options anyway, I'd rather focus on the big picture, which is the favorable prognosis all of us with this diagnosis have.
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Well said Beesie. 0
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Amen to that!
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Hi Ladies-
yesterday I had an oncology visit. I had a long discussion with my oncologist on risks and benefits regarding treatments. Long discussion on Microinvasive DCIS the is her2+++ and on the most recent studies. I felt better that she told me that treatment would not have changed for me since the newest studies don't include "microinvasive" disease that is her2+++. My oncologist (who is probably 38-40ish in age) told me that some patients (especially the young one's) focus only on reducing the risk of recurrence that they turn a blind eye to the actual risks associated with treatment. Many times these patients insist on chemo knowing the risks far outweigh the benefits. My doctor added that she recently had one of her young BC patient's who was adamant about geting chemo despite the risks of treatment outweighing the benefits for her. Well....this patient was just diagnosed with chemo induced leukemia. Leukemia from chemo doesn't happen often but it is definitely a risk that needs to be considered. This happened to a healthy young women with no underlying health issues other that having very early stage breastcancer.
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Hi Liz, Hope you are well! Very interesting about your visit, it does give me peace. I was also wondering what I should expect at my first oncology appt. it somewhat fills me with anxiety..it is not until late April. I have been throwing myself full force back into life...baseball, soccer, work, kids throwing up
all the normal things...it feels good, but every once in a while I remember and I have a rush of fear about what happened to me in dec.I guess it is normal. My exchange is April 2nd...one day after my birthdayHAPPY BIRTHDAY to me!! I am very excited to see how Amys exchange goes...thinking of youLaura xoxo
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Laura-
I was an absolute wreck when I was initially diagnosed. I lost a ton of weight and fortunately had some extra baby weight to lose too. I would cry when I would hear sad songs I recall lyrics about "pushing up daisies" and I would totally break down
. Especially when I would look at my 8 month old from fear that I wouldn't be around for very long. I actually had a difficult time looking at him and felt as if I was betraying him. It was a very devasting/emotional time in my life. What made it more difficult was that I really wasn't able to connect with anyone who was truly in the same boat as me until a few months later. Yesterday, my doctor even told me that I've come a long way and she even called me "very strong" I was stunned. She asked me what do I think helped me and I told her I needed my time to sulk, accept what happened since I can't change it and refocus on the good things in life, keeping in mind that my cancer was caught extremely early, not let cancer take over my mind day and night and most importantly focus on being there for my family (my husband & 3 children) because they need me as much as I need them. We all need to find an anchor to hold us and to be able to move on. Your mixed emotions are normal and do your best to stay focused on the positive things in your life as much as you can, you are very lucky that you're cancer was caught so very early. It's good to stay busy but try to give yourself at least a few minutes to yourself just to close your eyes and think about absolutely nothing and just focus on your breath when it's completely quiet for at least for 5 minutes daily. This to help me alot. Some find it helpful to talk to someone and that's totally fine too. Many go on anti-depressents which many say is helpful too. That would be something you would need to decide with your doctor. Do what you feel will help you.
I started to keep a separate pad with any medical information I felt useful including questions for my doctor's appts. At my appts, I would write the answers right below my questions so I would have them to refer to. Also ask fo and keep copies of all your medical information/reports. I have a thick folder with all my medical reports.
Most importanly always feel free to reach out.
You're an April fools baby
! My sister's b-day is April fools too. I'm sure to remember that. When is Amy's exchange? I had a lumpectomy so this exchange business is a little new to me. xoxo,
Liz
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My exchange surgery is March 23rd. I'm getting the silicone implants. I've read a lot of different stories, so I'm not sure what to expect as far as recovery goes. I think most people would agee that it's much easier than the first time. I sure hope so because I took a gig one week after! I think I'm a little worried about it, but in denial or something.... like Laura, keeping myself very busy. Liz, I like your advice about sitting quietly and breathing. xoxoxoxo
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Hi Amy, hard to turn down those gigs( a true musician) Hey according to my dr. I think you will be fine in a couple of days, of course this isn't his chest were talking about
I have a good feeling for you...exciting!Laura xoxo
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