Micro-invasive DCIS that is her2+++
By clinical definition a true microinvasion is "IDC(Invasive Ductal Carcinoma) that is 1mm or less in its greatest dimension".
As requested a separate forum index for those of us who had true Micro-Invasive DCIS that was her2+++. Yes, we are a rare bunch but lately there have been a few more of us that joined BC.org and weren't able to connect with each other since there was no specific forum for us. We really don't belong in the Her2+++ forum since almost all of those who have been diagnosed with micro-invasive DCIS that were her2+++ and node negative have not received chemo/herceptin.
And since we are no longer stage 0 we don't really belong with the DCIS forum either.
I along with at least one other member who I regularly correspond with have been told that micro-invasive DCIS that is her2+++ is a separate category from those who have IDC that is her2+++. At this time there have not been many studies pertaining specifically to our diagnosis.
Having our own forum will definitely allow us to connect much easier. If you know of any members that fall in this category please encourage them to post post their stories and reach out to us. I am so happy the moderators did this for us.Thank you to the moderators!!!!
Edited: to add clinical definition of microinvasion.
Comments
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I thought that I would start off by a study I had on microinvasive breast cancer...
I thought that I would post an abstract I found on the ASCO website from 2008-
Microinvasive breast cancer (Tmic): A descriptive mono-institutional report.
Sub-category:
Local-Regional Therapy
Category:
Breast Cancer--Local-Regional and Adjuvant Therapy
Meeting:
2008 ASCO Annual Meeting
Printer Friendly
E-Mail Article 
Abstract No:
11508
Citation:
J Clin Oncol 26: 2008 (May 20 suppl; abstr 11508)
Author(s):
A. Ferro, A. Caldara, R. Triolo, M. Barbareschi, E. Leonardi, O. Caffo, M. Pellegrini, M. Frisinghelli, D. Bernardi, E. Galligioni
Abstract:
Background: Tmic is considered a separate pathologic entity with good prognosis, but its clinical significance and management remain controversial. We present our retrospective review of 69 cases of Tmic, among 6,023 BC pts (1%), observed at our institution from 1990 to 2007. Methods: We considered Tmic a single focus of invasive carcinoma < 2 mm or up to 3 foci < 1 mm in greatest dimensions (according to Silver and Tavassoli, Cancer 1998). Descriptive analysis of pts characteristics, treatment and clinical outcome are reported. Results: Among 69 women (mostly asymptomatic, presenting mammographic abnormalities, with median age 52, range 20-78), T< 1 mm in 55 pts (80%) and T< 2 mm in 14 (20%) were observed. Radical mastectomy was performed in 31 pts (45%) due to extended in situ component or multicentric disease, and breast conserving surgery (BCS) in 38 (55%). All pts but 4, received axillary node dissection (61 pts) or sentinel node biopsy (4 pts), with only 1 N+ pt. The "in situ" component presented ductal in 91% and lobular histology in 9% of the cases, with predominant comedo subtype in 45%. All Tmic presented ductal histology with positive hormone receptor status (HR) in 45%, negative in 22% and unknown in 33%. Among 32 HER-2 evaluable pts, HER-2 was overexpressed in 34% and normal in 66%. Adjuvant treatment consisted of radiotherapy in 87% of BCS pts, chemotherapy in 5 HR neg pts, endocrine therapy in 7 and chemo-endocrine in 1 N+ pt. At a median follow-up of 93 months RFS and BC specific OS were 91 and 100%, respectively. Three pts experienced a local relapse (2 DCIS and 1 invasive) and 1 distant metastases (bone). None of relapsed pts had received systemic adjuvant therapy. Three pts died for non-breast cancer causes. Six pts developed a controlateral BC (9%): none of them progressed or died of disease. Conclusions: Our data appear in large part comparable to those of the literature on Tmic and, in our experience, the inclusion of microinvasion > 1 mm and < 2 mm did not change the good prognosis of microinvasive cancer.The above is cut and pasted word for word. Wishing everyone the very best.
Liz
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This is great Liz, I will be checking often. Also I did already see this article with all of my searching on the web...good one!
Laura xo
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This is Awesome. Thanks to who ever suggested it & thanks to the Moderators for adding this.
Pam
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My dear Pam,
it was I and Amy (may be others too?) who suggested it to the moderators and most importanlty it was made possible because of the moderators!
Now all of us who had Micro-invasive DCIS that was her2+++ should be able to connect much easier.
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Laura-
if you have anything to add please do...
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Hi Guys, have you been hearing about aspirin and breast cancer,,,? Big article came out of Dana Farber today...not suggesting anyone go out and buy it just curious what people think. Liz check your e-mail. Amy and Liz...GREAT WORK
Laura xo
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Hi Girls,
I am also extremely grateful to the moderators.
I think this forum will become increasingly helpful as early detection leads to more and more cases like ours. When I was first diagnosed, I had a very hard time navigating around the board looking for others like us. I was lucky enough to find a few who really made all the difference in helping me understand what my options were and how to weigh them. I hope this will make it easier for others.Hey Laura - Great news about the tumor board's unanimous decision on "no further treatment"!! How are you feeling about that? I remember being really happy when I got that news, but felt surprisingly blue for a couple of days after. I think it was just the finality of the decision, though, because I felt like I could really move on after that.
Good to see you here, too, Pam. Thanks for joining us!
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Laura-
do you by chance have the link about that aspirin article? If you do, would you mind posting it?
Does this article have something to do with keeping the blood thin?
Recently I came across an article, and now I can't find it for the life of me, that if you keep your blood in an anti coaginlent state which aspirin and vitamin E helps to do, cancer is less likely to metastasize since it needs to form blood vessels but if the blood is in an anti coaginlent state it can't form blood vessels to metastasize. Sorry I did not explain this very well but I will try to find that information to share....may be the link I posted below has this info????
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The link below has some interesting information on breast cancer.
http://www.mnwelldir.org/docs/cancer2/breast.htm
You will have to copy and paste the above link into you browser.
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Amy-
we did it!!!!
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Hi ladies,
I am one of you
DCIS 1.8 cm w/IDC microinvasion 1mm Stage 1 0/18 nodes Grade 3 ER+PR-HER2+++
Double mastectomies, no chemo, no rads, no hormone therapy. Just saw my Onc yesterday for follow up and still doesn't suggest any type of scans, blood work ect. unless presenting with some type of symptoms. So here we are, glad to meet you all
Dee~
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http://www.boston.com/news/health/blog/2010/02/can_aspirin_pre.html..Liz this is the link to that article, interesting! Hey did you recieve my e-mail?
Laura xo
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Glad I found this forum. I have been going through a harrowing time over the past couple of months. My initial biopsy reported extensive invasive ductal carcinoma. I underwent a mastectomy with sentinel node biopsy. The path report came as multifocal microinvasive with the largest focus being 0.11mm. The DCIS was 8.8 cm, HER2 99% positive. After consulting with 2 Oncologists in Ontario I was offered no further treatment. However, I took a second opinion from an Oncologist in Texas and she strongly felt I should have some chemo and Herceptin in view of a multifocal tumor. Being in Canada, I do not have a choice if the Oncologist here do not think so. I am now beginning to reconcile myself to living with this sword over my head. I feel better when I see many of us in the same situation.
Ruta
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Hi Dee, glad to meet you
Laura- I did get your e-mail and will respond when I can sit down without my 2 year old on my helping me to type
he likes the smiley facesRuta - all my doctors ( I consulted with over 10!) said that microinvasive DCIS that is her2+++, clear sentinel node , has an excellent prognosis. With considering the risks involved with chemo/herceptin such as neuropathy (most likely will happen), muscle and bone aches (strong possibility), chemo pause (most likely), possible leukemia in 20+ years (not too common but does happen), death (unlikely but people have died from chemo & this recently happend to my friend's mom who was in excellent health other then her myeloma cancer), and ofcourse herceptin has it's risks too. Keeping all this in mind, we the patient along with our doctors need to weigh the risks and benefits to determine the best route to take. Once a decision is made, we have to move on and not look back. I'm 2 years out from diagnosis and at the end of May I will be 2 years out from finishing radiation.
I have had a few scares mainly because of what I have read on this forum about her2+++ but not only those who are her2+++ recur. Right???? Would having had chemo/herceptin make my risk of recurrence zero...NO...would having chemo/herceptin make me feel better when I have new aches/pains...NO.... since most of the chemo's cause neuropathy which all my doctors warned me about! Along with other aches and pains which make it even more difficult to evaluate any new aches and pains to determine if cancer related. I forgot to mention, that shortly after being diagnosed with BC I got diagnosed with skin cancer and a few months after that I got a 2nd skin cancer and fortunately all were caught early. Speaking from experience, I promise it does get easier with time but you need to focus on living and that you have an excellent prognosis and not that you once "had" cancer. With or without cancer life still wouldn't hold any gurantees. Do you ever worry that you will get hit by a car? Probably not...but it could happen....so please live life to the fullest and if you feel you need to see another doctor for yet another opinion to help ease your mind....then do it....do what you need to do to be able to move on. I can go on... and on.... but I really need to get back to my kids who are calling me to dinner table. And please reach out as much as you need to.
Sending (((hugs))) Liz
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Hi Ruta,
Did you say your LARGEST focus was .11 mm? That is almost 10 times smaller than 1 mm, right?? Holy tiny tumors, Batman! Did you have a unilateral mastectomy? Are you ER or PR+? I had 4.5 cm of DCIS and my IDC was less than 1 mm. Since my mother had bc last year and my aunt a few years ago, I opted for a bilateral mastectomy. I think there are 3 of us here that are having our reconstructive exchange surgery in the Spring. Mine is scheduled for March 22nd. Can't wait to lose this "iron bra" and I hear there are no drainage tubes this time around. Yipee!
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good evening all, guess I'm part of this select group too. I did the BMX w/tram recon this past October. Two weeks ago I had nips added and the fat from my sides (dog ears? muffin tops?) smoothed. No chemo or rads for me but I am getting Herceptin every three weeks. So far the side effects have been very minimal. Is anyone else going this route?
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Hi Daisy
love your doggie pic
.Yesterday, I came across atleast one if not more threads about aspirin on this forum.
I believe that someone posted that you have to take full strength, not baby strength but it only has to be taken 2-4 times per week. I think the aspirin's focus is to keep the inflamation down in the body. My naturalpath and D.O. have always told me that cancer survivors especially, need to keep the inflamation down in my body. Dr. Weil's website has more information on how to do this too.
There is a book out that a Dr. Hormier(sp?) wrote and she talks about keeping inflamation down and recommends that every (breast) cancer patient take Zyflamend which is a natural anti-inflamtory. I take Zyflamend for my aches and pains too. I wonder if adding aspirin will be OK?
Do you ladies want to start a separate thread on alternatives?
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Hi Amy, hey I was wondering if Dr. told you that your exchange is a day surgery? Mine did and I'm really hoping that is all it is going to be...HATE HOSPITALS
Laura xo
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A little typo - should have read 1.1 mm. I am ER - 9% positive/PR -ve
Liz thanks for your wonderful words. I do realize I need to keep things in perspective and what better place to do that than here. I will however go ahead with getting a mastectomy on the other side since it is already showing extensive fibrocystic changes.
Anyone read about Pomegranate juice containing Aromitase Inhibitors for those who are ER positive. Since I am vvery weakly positive (9%) I was not offered treatment so maybe pomegranate juice should do it!
Ruta
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Wow! It's so great to see all the posts!
Dee! Thanks for joining us here. Your words of advice have meant more to me than you probably realize
Hope all is well with you!Laura - How are you? My Dr. also said that the exchange would be outpatient surgery. Did you set a date yet? I think Pam is also having reconstructive surgery this Spring.
Ruta - My hormone status was weakly positive as well, but not enough to merit Tamox. My DCIS was ER (10%), PR (5%) and my IDC was both ER and PR (20%). I also heard about Pomegranate juice being helpful and have been drinking it regularly. When was your first surgery?
Sandy - I can't figure out why you are T1a... I looked at your old posts and see that you had 2 foci of .5mm, right? Shouldn't that be T1mic? I'm confused also about your treatment with Herceptin. I didn't realize they were using Herceptin without chemo.
Daisy - Thanks for the aspirin info! The info on Her2neu has us all scared ****less. The good news is that we are T1mic! We have a great prognosis and every reason to believe we are going to beat this!
Liz - I think a thread on alternatives would be great! These issues are already starting to pop up since many of us are not taking antiestrogen agents. I'm going out to buy a bottle of aspirin!!
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Ruta and anyone who is is interested....
Being hormonally negative, there is nothing I can do for prevention but I can try to keep my immune system strong so....
Here's the list of my supplements that I take under my naturalpath's advice:
I can't stress enough that you have to be very careful with the brands you choose since they are not FDA regulated, if you choose to supplement.Most my products are from a brand my naturalpath actually manufacturers called Vital Nutrients. You can see their products on http://www.vitalnutrients.net/ but can't order from them unless you are a patient. If you google Vital Nuttrients there are other suppliers that you can purchase from but they are pricy. Another brand of products that is reputable and very reasonably priced is by the NOW brand which I have found on the following websites: www.swansonvitamins.com and www.Luckyvitamin.com
Here's my supplement list:
A multi vitamin that was actually formulated by Cancer Center of America which contains no copper, iron, or boron. It's geared towards cancer patients. Here's the info on what it contains
http://www.vitalnutrients.net/vnestore/detail.asp?product_id=VNM5
Curcumin 500 mg daily by Vital Nutrients
Indol 3 Carbinol by a brand called RX Vitamins (which contains the antioxidents from coniferous vegetables such as broccoli, cauliflower etc)
Green tea extract 80% 275mg daily by Vital Nutrients
Grape Seed 100mg daily by Vital Nutrients (You want to be sure you get the one that has the OPC3 in it)
Co-Q10 200mg 3-4 times a week by Vital Nutrients (I was warned that there is some bad Co-Q10 out there that is manufactured by China so you have to be careful that you get a good Co-Q10)
Vitamin D3 2,000 iu's daily by the Now brand (can purchase through www.swansondiscountvitamins.com)
Also additional calcium/magnesium w/ Vit D3 I use Vitamin Shoppe brand. Here's the link http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=VS-1087
The naturalpath suggested that daily I add 4oz of acai berry w/blueberry juice (Bolthouse brand) and 4oz of Pomegranate(Wonderful brand) juice organic is best if possible. These juices are loaded with the right type of antioxidents. You may want to add a 2-4 oz of carrot juice if you like.
According to John Hopkins, a pinch of brocco sprouts daily.
My sister-in-law who is also a naturalpathic physician told me that she puts her cancer patients on a product called Modified Citrus Pectin (MCP) which is very expensive here's the info on it:
http://www.vitalnutrients.net/vnestore/detail.asp?product_id=VNMCP I used it for a little bit but it cost me a bout $75/month so it was just too expensive for me.
I also take Melatonin 3 mg (the Now brand) about an hour b/4 bed. This is a very important antioxident that studies have shown that women who usually work the night shift have low levels of melatonin and therefore are more prone to cancers.
Vitamin E 400 I.U.'s you want the natural form which is d-Alpha Tocopherol, the other kind is synthetic and not good for your heart.
I also use Zyflamend by New Chapter it has some very interesting ingredients in it.
Lastly, a supplement called Idomere(this is the brand) 200mg daily which is Iodine and is supposed to help lower estrogen levels.
You can also get Iodine in the form of kelp but I have heard that many times kelp is contaminated.Choosing to supplement isn't cheap but staying healthy by building up your immune system is a small price to pay. Some regular M.D.'s may argue that there isn't much if any research to support these supplements but my naturalpath along with literature I read on the web, various health magazines, books etc. state that some of supplements are actually going into clinical trials.
If you have a chance you may want to research each supplement, I did initially but can't recall exactly what each one does. For example, there have been studies that showed women who had breast cancer and had low levels of vitamin D3, were more likely to have their cancer spread. My naturalpath monitors my vitamin D levels and your primary or oncologist can monitor these levels.
I remember my naturalpath told me to include as many berries as possible along with corniferous vegeatables as possible.
During my last visit I added an Omega 3 supplement called WholeMega Extra Fish Oil made by New Chapter. You can either purcchase through http://www.swansonvitamins.com/NWC111/ItemDetail
I think that's all for the supplements.
Liz
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Amy-
I'm sooooo excited that so many of us are finally connecting
. We finally have a place where we belong!!! I wish we had our own forum index, when I was initially diagnosed 2 years ago, connecting with others with the same diagnosis would have made going through a cancer diagnosis much easier.
Amy and others..... any forums you feel there might some of those with microinvasive DCIS that are her2+++ please post that we now have our own forum index. I did that on a few of the forums to spread the word and I e-mailed Bessie too to pass the word along too.
Sending (((hugs)))
Liz
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Liz, Amy and others Thanks for the wonderful feedback Going to a naturopath is my plan of action. Once I get a date for the contralateral mastectomy I will look into finding a good one near my house. I had my first surgery on 14-Jan-2010. Meanwhile Liz, I have noted all the supplements you mentioned - I had read about many of them.0
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Hi Amy, I am doing well...still cry at drop of a hat...can't do anything emotional right now...sad movies,,songs and such! kind of stupid I think...I'm such a darn "half glass empty" kind of person. My husband thinks I should go "see someone" just to have someone on the outside..I might. I just think that He and some friends don't reall y get that I am still in the "infant" stages. I had surgery only on dec30th what do you think? What did you think of the aspirin article I posted...also FYI, just be careful with aspirin right now, only because you have your surgery coming up...would not want to mess that up!! cause doesn't it increase bleeding? Anyway, look forward to seeing what you think....
Laura xo
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amyob - 1a is what my surgeon said. What is the difference between that and 1mic? My onc is not very big on labels and I didn't discuss it with him. My understanding is that most of the original studies were done on patients with advanced BC showing that adding Herceptin to chemo was very beneficial. There are now some studies that were done with BC that was not advanced and the Herceptin was still as beneficial. I was told that for me there was no need for chemo because the invasion was so small but the Herceptin was the one thing I could do to try and keep the C from returning. Since Herceptin is an antibody it works fine on it's own.
Anyone else out there doing Herceptin as the only treatment after surgery? If so what was the explanation you were given?
Laura, having someone to talk to who gets it really helped me and I was very up-beat most of the time. (Though I have been on mild anti-depressants for several years, maybe that helped me cope too) Still, verbalizing how I felt to without having to worry about upsetting anyone was great and helped me understand what was making me conflicted. "They" tell me it gets easier with time
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Laura-
OMG! I went through the exact same emotions are you are going through right now...your description is so much like what I went through when I was initially diagnosed. I was so bad that I couldn't even look at my 8 month old without having a total breakdown. Trust me I have come a long way and you will too. For many, it does help to talk to someone and you are the best judge of that. Initially I thought that it would never get better but I promise this stage will pass. Hang in there and lean on all of us. I does get MUCH easier with time. Sending (((hugs))). Liz
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Hi Guys, sandy, thanks for your words....what a journey. Liz and amy,. this forum is where I can come during the day to ground myself, when my mind starts to run away with me. I find it a huge comfort, so welcome to everyone here...we will get through this!
Laura xo
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Hi again, I did forgot to ask...my diagnosis was of course dcis w/ microinvasion dcis approx 3cm wless than 10 cells microinvasion not sure how to add this to my profile, as far as I could see it wouldn't let me..help
Laura xo
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Dear Laura,
I finally looked over your aspirin article, in addition to the Fox news broadcast Daisy suggested. They did advise waiting until after surgery and treatment are done, so thanks for the "heads up". Nice to feel like we're all looking out for each other
Your feelings of sadness are just part of the process. Just as Liz said, "It will get easier." I promise!! My surgery was over 4 months ago and it is already like night and day compared to how I felt only 2 months ago. I started feeling better about 8 weeks after surgery and it progressively got easier. Now, I have my days, but eating really well and exercising has definitely helped me feel more "in control". I think that's the hardest part, the helplessness we feel, but taking care of your body helps fight off those negative emotions. It really helps! I feel a little silly, but I've been checking out Jane Fonda tapes from the library. Just getting your heart pumping and breaking a sweat helps tremendously. And lots of fruits and veggies I can't figure out how to edit the profile diagnosis either. Maybe in the bio section?Dear Sandy,
T1a is slightly larger than T1mic. T1a is 1-5mm. T1mic is 1mm or less. I know you said your onc wasn't big on labels. You might be able to connect with some people doing Herceptin in the Treatment for stage 1 <1cm breast cancer thread. This forum is for T1mic, which is not usually treated with chemo or Herceptin. However, this is a brand new forum and perhaps there will be some members popping up who have chosen to do so. We are still here for all the support you need
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Just wanted to add -
I looked back at one of my previous posts where I said I felt better a couple of days after I got my final opinion. To be clear, I didn't get that opinion until 3 months after my surgery!
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