Micro-invasive DCIS that is her2+++
Comments
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Pam-
I thought of that too... at biopsy my ER was "weakly and focally positive" but after surgery it was negative. I think that for me being hormonally negative was a blessing (if you want to consider cancer a blessing
) since I was pregnant with the BC and didn't know it. Being hormonally negative hopefully, there were no raging hormones feeding the cancer during my pregnancy. Some of the latest research now shows that it may be a worse combo if your ER+ and her2+++. I know there's additional biomarker etc and alot of other factors to consider when you are ER+ and her2+++. I recall skimming some posts and links about that a while back. Don't recall the particulars. Anyone have anything to add to that? 0 -
Hi Guys, hey amy I put a message on your facebook about your reconstruction, I'm thinking maybe you didn't get that one,,,let me know. I go for what I hope to be my last "pump up" today and hopefully schedule my surgery. I'm getting excited for yours on the 22nd
Laura xo
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Thanks Pam. That does make sense. I'm a little "challenged", but I'll try to figure out the signature thing... I really thought Tamox was in my future. I even had the CYP2D6 test done, but, although I was weakly HR positive, the two reputable oncs I conferred with agreed, "No Tamox." They said if I had elected to pursue breast-conserving surgery or only unilateral mastectomy, it would be reasonable to consider antiestrogen agents in hopes of decreasing the risk of contralateral malignancy. However, with the bilateral mastectomy, there really was no rationale in this case to consider any systemic therapy at all. They said with such a low risk of distant desease, the toxicity would outweigh any potential benefit.
Liz, yea, I think you're right, unfortunately... Her2neu isn't really dangerous by itself, right? But, if it comes across lots of bad estrogen, it starts doing it's low-down, dirty business! I thought that being weakly positive, you are basically considered negative, and besides hormone therapy, there really aren't any other factors to consider. Maybe I'm wrong??
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Hi Amy, I'm not really sure why you did not get that, but I'll just keep bc issues on the forum. I was just wondering if you were putting anything on your incisions..I have been putting vitamin e. Also I was wondering if the dr. guides you on when the fills might be over
Laura xo
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Hi Laura - I heard about vitamin e, but haven't tried it. Does it help? Maybe after the next surgery... I just told my ps what size I wanted to be and he let me know when I was coming up on the last fill. After that, the usual wait time is 2-3 months.
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Hi Amy, I sent you a pm...and yes I think vitamin e is helping a little sticky though!
Laura xo
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Amy & Laura,
vitamin E is excellent for any type of scars, cuts, abrasions, chapped lips, etc. It's a natural anti-inflamatory. Be sure to use the natural form not the synthetic form. I also use something called MiraCell (has a combo of oils) for my skin cancer surgery sites but it's pricey and I'm not sure it's worth the $. There's also something called Bio Oil (combo of Vit E along with other ingredients) but not sure how it works.
Good luck
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Daisy-
I recently saw on another forum that Dr. Slamon, the creator of Herceptin did studies on Herceptin alone and it only helped about 9-12%. It works best in a chemo combo.
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Liz I love your new picture. So what are your thoughts on Herceptin being used in some of these cases...anything different? Keeping in mind, Dr. slamon is the creator of herceptin...isn't he?
Laura xo
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Thanks, the pic is my front yard, taken off my front porch back in Dec.
I'm not a doctor but try to stay on top of the latest research about Herceptin. I recall reading several times that there aren't studies to support the effectiveness in using Herceptin alone. Still a few doctors(I believe very few) may use Herceptin alone. The other day I read a post by someone who is a former patient of Dr. Slamon's stating what I posted yesterday as to it's effectivness rate when used alone and that Herceptin works best with chemo. There was an interview on line at one time with Dr. Slamon and I think Dr.Love discussing that.
When I was initially diagnosed two years ago, I spoke with all my oncologists about using Herceptin alone and they all said that there were no studies to support it's effectiveness in using it alone so therefore they were against it.
The way I understand the benefit is if you risk is at 10% then if Herceptin alone helps on the average of 10% of that risk factor, it would only help 1% (10 of a risk factor X 10% of effectiveness) so it would only bring the risk down to 9%. Herceptin does have some risks involved that need to be considered. When making a treatment decision, it's important to weigh in the risks and benefits with your doctor.
Hope that makes sense?
xoxo,
Liz
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The other thing to understand about Herceptin is that it is not approved for DCIS. When women who have DCIS plus invasive cancer receive Herceptin, the Herceptin is being given to address the HER2 status of the invasive cancer - it is not being given for the DCIS.
As has been discussed here and in other threads, with just one microinvasion (1mm or less) of invasive cancer, Herceptin is unlikely to be prescribed (I don't think I've heard of a single case where someone with a single microinvasion was given Herceptin). But because of the potential aggressiveness of HER2+++ invasive cancer, if someone has several microinvasions, then it appears that sometimes Herceptin, plus chemo, will be recommended. Although in TMN staging it's the size of the largest invasive tumor that is used to determine the "T" size (i.e. if there is more than one invasive/microinvasive tumor, it is not appropriate to add up the total size to determine the staging - see excerpt below), when it comes to treatment of HER2+++ breast cancer, it seems that sometimes doctors do take an additive approach. So if someone has 4 microinvasions totalling 5mm in size, even though officially the tumor size remains T1mic, some doctors feel that this really is equivalent to T1b and therefore the patient receives Herceptin and chemo.
As for the status of Herceptin for HER2+ DCIS, while Herceptin is not approved, there are two clinical trials currently underway:
- Neoadjuvant Herceptin for Ductal Carcinoma In Situ of the Breast: To determine the effect of a single dose of Herceptin (trastuzumab) on the proliferation rate of Her-2/neu over-expressing ductal carcinoma in situ (DCIS) http://clinicaltrials.gov/ct2/show/NCT00496808
- Radiation Therapy With or Without Trastuzumab in Treating Women With Ductal Carcinoma In Situ Who Have Undergone Lumpectomy: This randomized phase III trial is studying radiation therapy to see how well it works compared with or without trastuzumab in treating women with ductal carcinoma in situ who have undergone lumpectomy. http://clinicaltrials.gov/ct2/show/NCT00769379
Should these trials show positive results, I'm sure the results will quickly be applied to women who have HER2+ DCIS and HER2+ microinvasions. However the caution here is the one that Liz mentioned - the side effects of Herceptin. Herceptin comes with the risk of very serious side effects, which can be life threatening and/or cause permanent damage:
Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling cardiac failure, cardiomyopathy, and cardiac death [see Boxed Warning: Cardiomyopathy]. Herceptin can also cause asymptomatic decline in left ventricular ejection fraction (LVEF).
There is a 4-6 fold increase in the incidence of symptomatic myocardial dysfunction among patients receiving Herceptin as a single agent or in combination therapy compared with those not receiving Herceptin. The highest absolute incidence occurs when Herceptin is administered with anthracycline. http://www.rxlist.com/herceptin-drug.htm (see Warnings & Precautions section)
The incidence of congestive heart failure among those taking Herceptin is about 2%, as compared to less than a 0.5% among those not on Herceptin. The incidence of cardiac dysfunction among those taking Herceptin ranged from 4% to 28% (depending on the Herceptin protocol), as compared to 1% to 7% among the control group (who received identical treatment except for the Herceptin). These risks are important to keep in mind before taking Herceptin for a microinvasion (if it ever becomes approves).
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Tumor size classification within TMN staging: http://caonline.amcancersoc.org/cgi/content/full/56/1/37
When there aremultiple foci of microinvasion (extension ofcancer cells beyondthe basement membrane into the adjacenttissues with no focusgreater than 1 mm in greatest dimension),the size of only thelargest focus is used to classify the microinvasion.(Do notuse the sum of all the individual foci.)
In classifying multiplesimultaneous ipsilateral primary carcinomas(infiltrating, macroscopicallymeasurable), the largest primarycarcinoma is used to designateT classification. Separate Tclassifications are not assignedto the smaller tumors, andthe tumors are not added togetherto arrive at a T classification.Most conservatively, tumorsare defined as arising independentlyonly if they occur in differentquadrants of the breast. Therecord should reflect that thisis a case of multiple simultaneousipsilateral primary carcinomas.0 -
Beesie-
You always come around when your needed with great information
. When I was diagnosed 2 years ago and was just learning about the cancer world, your posts and links made it so much easier for me to understand my diagnosis. It takes alot of time to keep up with the forums and stay current, it's obvious you definitely give up alot of your time to help others. And you're almost 5 years out from diagnosis and yet you continue to stay current and reach out to help others with what you learned. Thank you so much for helping me and I'm sure there are so many others that feel the same way
Please visit us often and share what you continue to learn.
Liz
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Liz, now you are "my Beesie" Thankyou! You realize I hunted you down and waited for you to see my post...thank goodness, then you connected me with Amy! Thanks again...I hope I can help others to come,,,because unfortunately, there will be others
Have a Good weekend, the sun is finally shining here
Laura xo
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Liz, thank you!
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Beesie, you're VERY welcome
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Laura-
you're so sweet....
When I met Amy, I was at the point of trying to move on but couldn't resist checking in once in a while and fortunately found Amy,you and now a few others that were newly diagnosed. I remember how scary it was when I was initially dianosed and how hard it was to connect to with someone who had microinvsive DCIS that was her2+++. We are very rare and information on us "rare birds" just doesn't exist. Having our own forum will make it easier for us to connect and allow us to exchange information
My intention is for all of us to be able to share our experiences, feelings, knowledge, offer support or just to be a sounding board to those who need one. It's totally normal to go through several different motional stages when you are diagnosed with a life threatening disease, such as cancer. But at one point there has to be acceptance, that's a big part of healing and movin on. I promise it does get easier with time and you will be at that point too before you know it. Look at me when I was diagnosed my kids were 8months, 5, 10 and now they are almost 3, 8, almost 13 see how time flies by. Have a great weekend
, it sounds like you'll need the sunglasses since the sun is shinning where you are.xoxo, Liz
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Hi All,
I guess that I never realized that Her2+ DCIS was rare. I don't want to scare anyone, but perhaps my story can encourage women in this situation to continue with their follow-up care.
October 2007, I was diagnosed with a 9cm DCIS tumor at the age of 33 (Her2+, ER+, PR+). There were a few small microinvasions. My surgeon, after the mastectomy, described it as some tiny microinvasions in the middle of a "lake" of DCIS. I had a SNB and the nodes were clear. The treatment plan after surgery was Tamoxifen for 5 years.
I had DIEP reconstruction last year and have been feeling fine. I was checking in with my oncologist every 6 months, taking my Tamoxifen, and getting a mammogram and breast MRI once per year.
This past October, 2 years after my initial diagnosis, my tumor markers were up when they checked at my regular appointment. And by "up", I mean that one that was 37 years ago was now 2104. So that lead to a biopsy of lymph nodes under my arm, PET/CT, and bone scan. The cancer had spread and I have mets in my arm, spine, sternum, rib, pelvis, and more than 13 mets in my liver. I had not felt sick at all.
This was shocking to me and my family, as you can imagine. My surgeon and the chief of surgery at UW medicine (who happens to be a family friend) went over all the pathology reports and scans again, trying to figure out if they missed something. They didn't-- all it takes is one little cancer cell to escape. My cancer did not spread through my lymph nodes (in fact, they are still clean), instead it looks like it spread through blood vessels in the chest wall.
I'm on chemo and herceptin now and am hoping for treatments to keep me alive for several years. But to go from DCIS stage 0 to suddenly have a recurrence and be Stage IV is totally crazy. And I hope what has happened to me can warn others-- keep seeing your oncologist, keep going for your mammograms or MRIs or whatever. Stay on top of things, ladies! And I hope this never happens to any of you.
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Petjunkie,
1st of all I want to say I am so sorry that your going through this and that cancer is a nasty unpredictable disease as you have experienced. Even with the most agressive of treatments it would not have brought down your recurrence risk to zero which was already low to begin with from what you have posted. Your message on the importantace of vigilance is a clear and appreciated.
However, after skimming some your posts on other forums, your situation is complicated; you were PR+ but you have taken Progesterone, also there are some new studies showing that being ER+ and her2+ can complicate matters too.
1. I copied & pasted your post from the Night Sweats forum 2/24/10 " I took progesterone after my mastectomy for DCIS (with microinvasions) for two years. It was a quality of life choice for me, for complicated reasons I won't go into here. I was also on tamoxifen. I've had a recurrence and now am stage IV with mets to liver and bones. At age 35, not what I expected. Can't blame only the progesterone, of course, but since my cancer is ER+/PR+, I was essentially feeding my cancer cells with progesterone."
2. You're inconsistent with your diagnosis; some of your posts state that you had microinvasions and other times your posts state that you had a microinvasion?
I copied the following posts you posted, they are in "quotations":
"I had stage 0 DCIS with just a microinvasion of IDC."
and in another post you stated "I had a 9cm DCIS in October 2007, there was a microinvasion in the center of the DCIS that was like 2mm"
but yet in the above post along with a few other posts you stated "October 2007, I was diagnosed with a 9cm DCIS tumor at the age of 33 (Her2+, ER+, PR+). There were a few small microinvasions."
There are inconsistencies in your posts, which make a huge difference in what your original diagnosis was and what may have led to your recurrence.
If you had any type of invasive cancer, you would not have been at stage 0 DCIS, please see the below staging information ......Stage 0 means that the tumor was completely contained with-in (inside) the duct(Ductal Carcinoma In Situ) and did not break through the duct.
Primary tumor (T)
- TX: Primary tumor cannot be assessed
- T0: No evidence of primary tumor
- Tis: Intraductal carcinoma, lobular carcinoma in situ, or Paget disease of the nipple with no associated invasion of normal breast tissue
- Tis (DCIS): Ductal carcinoma in situ
- Tis (LCIS): Lobular carcinoma in situ
- Tis (Paget): Paget disease of the nipple with no tumor. [Note: Paget disease associated with a tumor is classified according to the size of the tumor.]
- T1: Tumor not larger than 2.0 cm in greatest dimension
- T1mic: Microinvasion not larger than 0.1 cm in greatest dimension
- T1a: Tumor larger than 0.1 cm but not larger than 0.5 cm in greatest dimension
- T1b: Tumor larger than 0.5 cm but not larger than 1.0 cm in greatest dimension
- T1c: Tumor larger than 1.0 cm but not larger than 2.0 cm in greatest dimension
- True Mico-invasive DCIS means that no invasive component is larger than 1mm in it's greatest dimension.
I don't know if you have visited the forum www.her2support.org , it's a rather small forum with many members who are living long, full lives while being at stage4. They are very knowledgeable in stage 4 her2+ BC and this forum is specifically for those who are her2+. There are also some miracle stories on that forum too. If you want to know of specific members I am refering to, just PM me and I will let you know. One of the members went to clinical trials in Seattle and has been NED for 6 yrs and continues on Herceptin alone. I don't mean to sound antagonistic in my above comments/posts, micro-invasive DCIS that is her2+ can be very complicated and many times there is much more to the story. That's why it is extremely important to seek our several opinions with a cancer diagnosis and then sit down with your doctors to discuss the risks and benfits. Cancer is a crap shoot and as I stated above even with the most agressive treatment, would not have brought your risk down to zero. Stay strong.
Wishing you the very best,
Liz
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petjunkie, I'm so sorry that you are going through this.
I second everything that Liz said, and I'll add a bit too.
HER2+ DCIS is actually not rare. In fact, HER2+ DCIS is very common. What's less common, and more complicated, is DCIS with a microinvasion that is HER2+. And what's more concerning is an amount of invasive cancer larger than a microinvasion that is HER2+.
From what you've said, your initial diagnosis included at least one area of IDC that was 2mm in size, and possibly there was more than one area of IDC. This means that your initial diagnosis was not DCIS and was never Stage 0. I understand that you did more DCIS than invasive cancer but staging is always based on the invasive cancer. (I had 7+cm of DCIS but with just one 1mm microinvasion, I'm Stage I.) In fact it sounds as though your diagnosis probably wasn't DCIS with a microinvasion - it seems more likely from what you've said that your diagnosis was Stage I T1a invasive cancer that was HER2+. Even though you only had a small amount of invasive cancer, this is a diagnosis that is high risk. So from the start, you had a serious diagnosis.
In the end I know it doesn't make any difference whether you went from Stage 0 to Stage IV or Stage I to Stage IV- you unfortunately now are Stage IV. But for those reading, there is a difference between those two situations and I think it's important that those who are Stage 0 with HER2+ DCIS to understand this.
Good luck with your chemo and Herceptin treatments. I hope that they are wildly successful. And Liz's suggestion about visiting http://her2support.org/ is a good one.
(((Hugs))).
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Liz,
I'll be blunt with you-- I find it strange and a bit creepy that you searched all my prior posts and quote things here like you're trying to catch me in a lie or something. Frankly, it's no wonder why no one posts in this forum if this is the kind of response they get when they share their story. I posted here with the hope that it would encourage women to continue being vigilant, since so many women with DCIS are told they are done after surgery and/or radiation, and some think it's all over and they don't really need to keep seeing their docs.
I didn't feel it was necessary to get into the details of my microinvasions because my post was long enough already. But if you want the story, fine. There was IDC found in the biopsy of my tumor (which was conducted immediately after my ultrasound). It was .7mm. After my mastectomy, they found two other specks of IDC, each around .5mm. That was it, the rest was DCIS. So, was this three different micro-invasions? Or was this one microinvasion that was partially hit during the core needle biopsy? There was no way to know if we were looking at one microinvasion of around 2mm or three different microinvasions of .5mm, .5mm, and .7mm. My oncologist told me that it was still considered Stage 0 because the invasive cells were inside the duct. DCIS and IDC cells look different even if they are both still confined to a milk duct. A microinvasion does not HAVE to break through the duct to be considered a microinvastion.
I get excellent treatment at the Seattle Cancer Care Alliance and have a world-famous oncologist and breast surgeon. I really don't believe that she lied to me about my staging, or that there was any cause at my initial diagnosis for more aggressive treatment. A mastectomy was all that was warranted, and my whole team agreed that chemo was not appropriate at that time.
As for the progesterone-- progesterone did not increase my risk of recurrence. What it does is make it possible for any cancer cells left in the body to grow faster than they would have otherwise. So, would my recurrence have been detectable in October if I hadn't been taking progesterone? It's possible. It's possible though that the progesterone made the cells multiply faster and without it my recurrence wouldn't have been detectable until more years had gone by. But it really doesn't change the fact that cancer cells had escaped the breast and were circulating through my body, and a recurrence would have happened no matter what. PR+ is not the same as ER+ and breast cancer recurrences are not linked to progesterone in the same way they are linked to estrogen.
I wish everyone here the best, and I'm sorry for what my post resulted in here. None of us should have to defend ourselves when we share our story with others on this board. Frankly, whether people with DCIS and microinvasions consider themselves stage 0 or stage 1 doesn't matter. The risk of recurrence is still quite low. What matters is that women with any kind or type of breast cancer at any stage continue to communicate with their doctors, educate themselves as best they can, and get the best care possible. So I'll wish that for all of you here, and I'll not return to this forum again.
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Dear Petjunkie,
With all due respect, I think Liz was only trying to get the story straight to avoid confusion and to prevent any unnecessary distress. Since people who truly have microinvasive DCIS that is Her2+ technically have Invasive Cancer, and are not generally offered chemo or herceptin, this puts us in a scary place. Is it "creepy" that she looked at your old posts? Nothing wrong with trying to figure out something that seems confusing, is there?? So many of us have gotten really scared, because we don't have the chemo/herceptin security blanket, when people accidentally leave information out of their story. She was just trying to prevent others from getting frightened. This is a new forum and I know that you were trying to help, too...sigh This is so hard for all of us to go through.... I guess it's perfectly normal for eruptions to occur. I remember a post by PatMom from Feb. 14th about these kinds of things and looked back on it last night. I think she expresses her thoughts beautifully and, with her permission, I have copied/pasted them:
Hearing the words "It's cancer" is terrifying and life changing. Stage may make a difference in the treatment options, but so do other factors like age, and general health, and specific health issues.
We can't read minds, and sometimes we don't take the time to read someone's previous posts and/or profile to find out what other factors may be at play in someone's decisions before commenting.
We all have difficult days, no matter what stage we are at. We get scary news, we have other things happen in our lives (yes, there is life beyond cancer), we find out that we or someone we care about has had progression. We also get good news, and want to share that with our sisters because that might be just the ray of hope that someone else needs at this moment.
The larger the community, the greater the opportunity to hurt or offend someone. This unfortunately is a huge community. That means a great amount of support, but also the potential to offend.
If someone posts something that bothers you, let them know gently in a PM, the way you would take a friend aside if they said something hurtful. Or ignore it, or put them on ignore status, or roll your eyes and move on.
This is similar to cooking with steam. If you don't vent it at all, you can have an explosion. If you don't vent carefully, you can get burned, and if you take the lid off totally, you lose the power of the steam.
Think before you hit submit, vent carefully, and be forgiving of someone who vents in the heat of the moment.
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Petjunkie-
perhaps if don't want your posts read, you shouldn't post them! The purpose of this OPEN forum is to OPENLY share information which requires reading each others posts and writing our own experiences as well. I encourage new members to go back and read all my posts. When new members have sent me a PM because they are newly diagnosed and want to connect with someone who had truly "microinvasive DCIS that was her2+++", I have responded to please search my posts. Exchanging accurate information such as diagnosis specifics, experiences and treatment are necessary for us to learn from each other.
We are a new forum and are our diagnosis is very rare. The majority of DCIS is her2+ but being diagnosed with "microinvasive DCIS that is her2+++" is not very common. Just about anyone who is diagnosed with IDC that is her2+++ is automatically offered chemo/herceptin expcept for those who truly have "microinvasive DCIS that is her2+++" and are node negative. According to most doctors including the ASCO article I posted on the 1st page of this forum "Tmic is considered a separate pathologic entity with good prognosis, but its clinical significance and management remain controversial. I believe most if not all of us HAVE NOT been offered chemo/Herceptin for our "her2+ microinvasive DCIS" since we were told the the risks outweighted the benefits with our "good prognosis".
I recall when initially dianosed, reading a recurrence story that was bazzaar and ran scared to my doctors sharing the horror story and my doctors told me that more then likely there is more to the story then was shared and guess what....there was much more to her story then the member posted. Recently we had a member on another forum share a story about her recurrence but left out the fact that she had a micromet in her node among other things. There are quiet a few of these sceneros I came across by reading posts. Her2+ cancer is very complex, that's why it is sooo imporant to seek out several opinions and then a treatment decision needs to be made between the doctor(s) and patient.
As far as staging, I believe Beesie made it crystal clear and Amy's staging guidelines are also an excellent resource. Stage 0 means the cancer is totally contained with-in the duct therefore not able to travel either by node or bloodstream. Only invasive cancer that has broken through the duct can travel by node or bloodstread otherwise it's not possible!!!!!!!!!! You said your cancer traveled through your bloodstream then it had to be invasive and not contained, therfore NOT STAGE 0.
Your message of vigilance is much appreciated and it's your choice if you choose to post on this forum or not. You are more then welcomed to visit and post; this forum is not an exclusive club but we ask that accurate information, especially pertaining to diagnosis and treatment be posted, otherwise our learning is flawed by misinformation.
As Amy suggested, please read the posting by Patmom from Febuary 14, 2010 she sums things up very well. Also, I'm so sure the members on www.her2support.org can be very helpful to you, they are a very knowledgable, caring and extremely supportive strickly for those who are her2+++.
Wishing you the very best.
Liz
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Hello and good morning to you all.
I guess I am a bit confused about microinvasive DCIS that is HER 2+++. Being that DCIS is contained in the duct, how is it microinvasive? I thought we were talking about DCIS with microinvasive IDC .1 mm that is HER2+++(which I am.) I was also not offered chemo/Herceptin because the risks out weighed the benefits. I am assuming that your DCIS was HER2+++ and your IDC microinvasion was not? I just want to make sure that I am posting in the correct forum
Thank you and have a great day!0 -
Dee, semantically you are absolutely correct!
DCIS is not and cannot be microinvasive. I tend to say "DCIS with a microinvasion" but the most correct description of our diagnosis is "DCIS and a microinvasion".
As for the intent of the forum, Liz can correct me if I'm wrong but I believe the forum is intended for those who have DCIS and a microinvasion that is HER2+++.
I think the distinction you raise is very important. It's been discussed in this thread before but I'm not sure that it's really clear. Those who have HER2+ DCIS should not assume that their microinvasion is also HER2+. It is important to know if separate testing was done on the microinvasion to determine the HER2 status. It can be different. It is well established that a much higher percentage of DCIS is HER2+ than IDC and since the vast majority of IDC evolves from DCIS, this means that the HER2 status can change along the way. Just one more area of confusion about this diagnosis!
For all the women who have DCIS that is HER2+, at this time (based on current medical knowledge) this diagnosis is not treated any differently than any other DCIS. It's also not clear whether the prognosis for HER2+ DCIS is any different than the prognosis for HER2- DCIS - the few studies done on this have had conflicting results. So the concern and questions come into play when someone with DCIS also has a microinvasion that is HER2+. It's the HER2 status of the microinvasion that is relevant. Current medical standards recommend chemo and Herceptin for invasive cancer that is as small as 5mm. Recent studies suggest that patients with any size of invasive tumor that is HER2+ will benefit from chemo and Herceptin. But from my understanding (again Liz can correct me if I'm wrong), none of these studies have specifically looked at invasive cancers as small as microinvasions. But... if a patient with a 2mm invasive cancer that is HER2+ has a riskier prognosis and therefore benefits from chemo and Herceptin, might not the same be true for someone who has a 1mm invasive cancer that is HER2+? That's the unknown and that's the dilemna for those with this diagnosis.
Another area of confusion is the HER2 status itself for those diagnosed with DCIS and/or DCIS and a microinvasion. When I was diagnosed, back in 2005, it was very common that DCIS would not be HER2 tested and microinvasions often were not HER2 tested. Some of us got those results; most of us didn't. HER2 status didn't impact treatment for those with this diagnosis. However as medical science progresses, new studies are done and new information is available. What was not seen to be important before (HER2 status of the microinvasion) might be important now or in the near future. Something that still isn't considered important today (HER2 status of the DCIS) might be important 2 years or 5 years or 10 years from now. To be honest, I'm glad that I don't know the HER2 status of my microinvasion. At the time I was diagnosed, it wouldn't have changed my treatment but if I knew that my microinvasion was HER2+, today it probably would worry me. Yet 4+ years out, there would be nothing I can do about it. I don't usually like to bury my head in the sand but in this case, I glad that I can. DCIS and a microinvasion that is HER2+ is a confusing, and possibly concerning, diagnosis.
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Dee-
as Beesie explained "DCIS with a Microinvasion" or "Microinvasive DCIS" is a confusing diagnosis and for most of us if not all of us who have that diagnosis, whether it was her2+ or her-, as long as the node(s) have been completely clean and nothing questionable in the pathology our treatment has been the same regardless of the her2 status as for those with plain "DCIS with a Microinvasion" or "Microinvasive DCIS" .
By clinical definition a true microinvasion is "IDC that is 1mm or less in its greatest dimension".
We have not been offerend chemo/Herceptin since the doctors have stated that the risks of chemo/herceptin outweighed the benefits with our risk already being low.
With the complexity of this diagnosis I can't stress enough to please consult with several physicians regarding treatment, so that nothing questionable in pathology missed.
Wishing the very best,
Liz
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Hi Beesie, I have been keeping up with your posts and since were touching on some pathology, I wanted to see if I am interpreting mine correctly..."solitary focus of microinvasive breast carcinoma, grade 2 of 3,consisting of rare tumor cells(less than 10 cells) in the periductal stroma...now would this lead you to believe that it had not formed actual tumor yet or is not measureable in mm..I had 2nd opinion from onc and he said he had not seen something like this in 30 years REALLY? I don't know if I should feel good or bad about that....of course knowing me, I would make it glass half empty(if you know what I mean) I ask this knowing none of us are Drc...but I am a newbie and this forum has been an awesome place for me to connect....just in and out of being frightened and only you guys get it! What do you think...Laura THANKYOU 0
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I do understand my pathology and diagnosis but was a bit confused by the title of the forum. Just a thought, maybe renaming it Micro-invasive IDC that is HER2+++ would be appropriate. Thanks0
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Laura, I'm outside of my comfort zone here. My guess - and it's just a guess - is that what you've concluded is correct. From the description is sounds as though you have only 10 cells of invasive cancer, in the breast tissue right at the edge of the duct (i.e. in the periductal stroma).
Given that you have such as small area of invasive cancer, to my comments above, I'm guessing that it is your DCIS that is HER2+ and that your invasive cancer hasn't been tested for HER2 status. I don't know that they could do the testing on only 10 cells.
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Laura,
initially one of my doctor's wasn't sure if the her2 status was tested on my microinvasion and called the pathologist to verify specifically. My hormone status and her2 status was the same for both the DCIS and the microinvasion but sometimes it's not identical. Please don't hesitate to ask your doctors about specifics about your pathology, even if they have to call the pathologist to verify this. It's your pathogy and you have to right to know specifics.
xoxo Liz
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Hi Beesie, Your right, the onc was also perplexed when she questioned the patologist, but he felt certain the invasive component was Her2pos...I know I wonder but sometimes you have to trust I guess...Thankyou for responding! I did finally learn what the periductal stroma is...Thanks
Laura
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