Micro-invasive DCIS that is her2+++
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I think I belong to this thread and reposting my DX here (Sorry I have also posted under thread "calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+"
Age - 28 - No family history of any kind of cancer on either parients side.
1)03/2013 - Initial DX of DCIS Comedo Necrosis Grade 3 via core needle left breast ER / PR -VE
2)03/2013 - Did MRI - Along with the area of concern they found something suspicious on right breast (BI-RADS - 4) did biopsy and came benign
3) 04/2013 - Lumpectomy revealed 4.5 Cm high grade extensive DCIS along with 5 foci of micro-invasion each one less than 1mm (Did not report individual sizes, does it matter?).
Micro-Invasion margins were all -VE (all greater than 0.5Cm Except Anterior/Posterior superficial margin of 2mm towards skin). DCIS also all margins -VE but Anterior/Posterior Superficial towards skin margin of 1mm and deep margin of 1mm. Doc said nothing can be done about deep margin as he shaved everything he could till wall so this can be only taken care by radiation.
- Lumpectomy specimen DCIS is weakly positive for ER (20%) and weakly positive for PR (50%).
- Micro-Invasion is ER / PR -VE , HER2 + by FISH (HER2/C-17 ratio of 3.0), Ki-67 positive (20%)
4) Scheduled for reexcision & SNB in 2 days. I am hoping will get -ve margin for DCIS and micro-invasion greater than 0.5Cm and -VE nodes.
I am just worried about micro-invasion even if less than 1mm (but 5 of them). I want to go for kids and really do not want to take any toxic in my body. Any though will be appreciated (Again got lot of reply via PM, thanks for that).
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Sorry for posting at multiple threads.
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12 years out. Her2+++, microinvasion.
Bi-lat mastectomy, ooph and hyst. No drugs.
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Heartly Congratulaitons climbinghigh,
Such a great relief.
Thank you for posting and encouraging people like me.
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Best of luck to you.
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My mother picked up my pathology slides yesterday, we are going to see the BS in 2 hours... I see they added my report with an addendum which says I am ER- PR- and HER2+ so I belong here. I have 2 areas of DCIS with microinvasion. I am going to the dr. inclined to ask for a bilateral mastectomy after all I've read... I'm terrified but I feel like the news keeps getting worse...
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Laura - you are in the most difficult time of this journey....the waiting and deciding on options. Just know that you are not alone! Take your time to make the MX decision....nothing requires an immediate decision. God bless you!
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Thank you Chachamom!
Saw the BS yesterday, he was wonderful and explained everything. I have to have a mastectomy, no doubt, just because there are 2 areas and then benign calcifications also, just to spread out... getting the brca test next week just to rule out and getting an MRI once they get approval... then will meet the plastic surgeon and figure out the plan, leaning to bilat mx even though nothing was found in the mammo on the left... he felt my lymph nodes which feel good, no swelling at all and they look good on the mammo and he said the MRI will also give us an idea but they of course will do an SLNB at surgery and will get staged then... so the waiting begins... can I have some info on possibility of lymph node involvement? He said he'd be surprised if there was any... its just that one last niggling thing that's got me feeling just a little more worried than I wanna be...
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I'm not qualified to give any prognosis of Lymph node involvement......the fact that your surgeon would be surprised is a good sign! I'm glad you have a good relationship with your BS....that is SO important! I, too leaned toward bilat MX even though there was no evidence of cancer in my left breast. My BS talked me out of that and indicated I could have the left MX when I had the reconstruction, which is what I did. I'm not sure I would do that the same way if done again, but I understand he (BS) didn't want me to rush into that decision based on emotion. If I would give you any advice, it would be to come to the PS with all the questions you have before the surgery (MX), have your homework done on the types of reconstruction (if you are having that, I assume) and if possible, have your PS talk to your BS so that if skin saving or other surgical procedures can be done at the MX that will improve the reconstruction outcome is considered. I have Kaiser ins, that has a class specifically for choosing what type of reconstruction is best for you.....which a found very informative and reassuring. You might check to see if your insurance or doctors know of something similar you can participate in.
Blessings!
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Oh my gosh! This forum is for me! I have DCIS with 3 spots of micro-invasion. Each, 1mm. I had one node removed in separate surgery and it was negative. Actually since I am posting post surgery, I don't really have it any more...I hope. My first oncologist appointment was Tues. She explained my report and I discovered I am HER+. >3. I am also Est + and prog -.
Im still new to this and have not started radiation. The HER+ twist has me terrified.
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Hi Motherofone, I think I speak for all of us when I say that finding out you are HER2+ is a pretty scary moment. The good news is that you only had a micro-invasion, so the prognosis is the same as regular DCIS, which is really good! My diagnosis was about 4 1/2 years ago and I can tell you that the fear does subside. We are among the very lucky ones, with a great prognosis
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amyob, thank you for responding. May I ask your treatment? Im so distraught. I can't even concentrate.
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Dear Motherofone, I had a bilateral mastectomy with no further treatment, but there are others who had lumpectomy and radiation with our diagnosis, and possibly unilateral, too. It has been a while since I've visited the board, but still have email notifications on for this thread so I can help people the way I was helped through this awful time. I know how distraught you are. In fact, the tears are welling up in my eyes just thinking about that terrifying experience we share. I'm so sorry you have to face this. The people on this board have a lot of experience and advice to share, and you can learn much and gain confidence by reading and asking questions. I am sure you have tried to find people with the same diagnosis and look up their posts, which is how you found this thread
I think a lot of us have come to the board looking for information about our diagnosis, and seen the posts by people who have a larger Her2+ component. This is why the Moderators were asked to create this forum of our own, for real Micro-invasive IDC (1mm or less), to avoid the confusion and fear. I know it's hard to believe, as it was for me, but you have a very good prognosis Research has proven this. There is a lot of good information in this thread and members who have done their homework on our diagnosis. I hope scrolling through and reaching out will help you through this.... sending lots of love your way. ~amy 0 -
At first I was diagnosed with DCIS but after a lumpectomy the diagnosis changed to invasive DCIS with one area of invasion. This didn't show on mammogram.
Re excision lumpectomy did not result in clear margins so then I proceeded to a mastectomy.
It was disappointing as I thought I had found the lump early And would only have radio after lumpectomy.
I am going to have chemo, radio and I'm already on letrozole for ER+. Then Herceptin for HER+. I think
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Sugar, DCIS is never invasive. You have invasive ductal cancer. Your pathology changed on excision. It is important to make this distinction for other women coming along and being frightened or confused when they have DCIS.
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Thanks MelissaDall.... for the clarification. Just read up on IDC and the literature states that sometimes the Cancer types can be mixed. It
was very frightening for me hearing the news whatever the cancer type.
Definitely the DCIS ladies are the luckiest and should not panic as it's the easiest to treat and more straight forward. Positive thinking girls.
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Since posting last a lot has happened. I started radiation and have now complete 23/31. Only 2 more of those left are whole breast. I'll be so happy to be done with radiation. The burning and itching is very uncomfortable. I have also visited a second Oncologist. She was great. Her daughter in law is also HER2+ so I really felt she had a special interest in us, HER2+ patients. She explained just as the first oncologist said, "Your cancer is too small for chemo and Herceptin, but too bad (due to micro-invastion) to participate in the DCIS study with Herceptin only. But she did not leave it there. She felt that the HER2+ needed to be addressed. She said that there are not many of us out here with this diagnosis, so studies will likely not be done on us. She suggested doing Herceptin without chemo - 4 infusions, 3 weeks apart to address the HER2+ issue. She said it was too good a drug to not give it a try. She reminded me that there were no promises since Heceptin only with DCIS with micro-invasion has not been studied, but she felt it was worth the gamble and so did I, so I did my first infusion a couple of weeks ago.
Has anyone else done Herceptin without chemo? Did cancer return?
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hello i just met with my oncologist first time today and I had a mastectomy left breast for multi centric/multifocal DCIS - i just learned there was DCIS micro invasion that is ER/PR negative and HER2 + . its so small that no treatment is warranted. can anyone talk about their experience with recurrence? I am petrified! I am 41 with 3 small kids and am trying to brave -)
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Hi again missygirl! I just answered your post on the other thread.
As you may have read in the posts above the DCIS Dx changes to IDC once the stage moves from 0 to 1. I only mention it, because I don't want you feeling confused over the Dx when you read other posts on the subject.
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Hi Missygirl,
I'm sorry you are going through this. I was 40 when I was diagnosed, with two young children, so I can relate to the feelings you are having. If you had a true microinvasion (the IDC was 1 mm or less), studies have shown that prognosis is the same as someone with just DCIS, which is very, very good
I had a bilateral with no further treatment. That was over 4 1/2 years ago and there are others here with this diagnosis who have been disease-free much longer. The chances of recurrence are extremely low. I hope this helps a little. 0 -
Hi Missy,
Sorry to hear that you too are HER2+, I too was originally told no treatment other than radiation and a drug for E+ which I will take for at least 5 years. That was not enough for me. The HER2+ thing scares me. My invasion was too small for Chemo and normally I would think that was a good thing, but honestly, I was still worried. My thoughts were, "What, just wait until it comes back even bigger and more aggressive?" Soooooo, I went to oncologist # 2. Without me sharing my concerns, she echoed them. She also told me her daughter in law is also HER2+. She suggested the 4 rounds of Herceptin, even though she openly admitted there was no study to prove that they would help. Anyway, it was what I wanted to hear. I want to be aggressive about this. I want to knock out this HER2+ thing and I truly believe I will with my infusions.
I wish you all the best. It is a big decision and you must find a doctor who is willing to think outside the box.
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We are a small group indeed, I was on three chemos, Hereceptin, was one of them it is in the testing stage...I have made in 5 years and now up for the Breast MRI....scared as hell.
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This is my first time ever posting on the breast cancer board, though I have been lurking for 2 months. I have Micro-invasive DCIS with that is HER2 positive, weak ER+, PR-. I am 39 years old with 3 small children & decided to undergo a bilateral mastectomy with immediate reconstruction on August 1, 2014. I am currently getting fills weekly for tissue expansion. I had been told all along, even before surgery that it was the only treatment I needed. My oncologist called me Friday & basically said she changed her mind. She wants me to do 12 weeks of Taxol with Herceptin for 1 year. THEN she wants me to do 5 years of Tamoxifen. To me this sounds like way overtreatment. I am seeking a 2nd opinion on Wednesday & am even considering a 3rd opinion. It just seems like there isn't a clear cut answer for treatment & I am scared. I don't want to go through chemo if it isn't warranted, which is what she told me a week ago! Then came back with a different treatment. Anyone in a similar situation?
Thank you!
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Miscraw - how large is your invasive component?
What I know for HER2+ cases:
< 1 mm standard is no chemo. (this is true microinvasive)
1 mm to 4 mm tx very controversial (I did tx for 3 mm but had varying opinions - saw 3 onc's. Wish I had done Taxol instead of TCH - Taxol is a much gentler chemo).
5 mm and up - tx for HER2+ recommended routinely now, from what I have seen.
For more information on the 1mm to 4 mm range see my thread:
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I m so glad to have found this forum . I just found out yesterday from oncologist that I have DCIS with micro invasion. Originally, the pathologist only saw DCIS; so both my surgeon and I were really happy with the news. Then,upon request for a revision of tissue samples by one of the oncologists,they found microinvasion in addition to DCIS. The waiting period to see the oncologist after receiving what I thought was the final pathology result was a reminder of the anxiety I had while waiting for biopsy result, the surgery, and pathology reports on the removed tissue samples. I thank God I don't have to go through radiation or chemo because of the size of the invasion, but at the same time a bit anxious because the only treatment I had was surgery (mastectomy). There is always the thought of "what if my surgeon did not completely remove everything". I don't want to live in fear because it is not healthy and I need to focus on staying healthy. I will have reconstruction surgery in January and hopefully won't have any more surprise findings. I understand now why people call the cancer journey a roller coaster ride.
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norchinu Joined: Dec 2014 Posts: 1
Post a reply18 minutes ago norchinu wrote:
I have recently been diagnosed with DCIS with 2 areas of microinvasion in my left breast. The lesion was HER2 plus 3. . I am BRACA 1 and 2 negative and the lesion is estrogen negative so I am not a candidate for tamoxifin. I have had 2 lumpectomies and do not yet have clean margins. My surgeon is recommending a 3rd but my instincts tell me that with the microinvasion I should just go through with a mastectomy.
I am also 59 (today is my birthday) and the mastectomy would avoid radiation over my heart which I would like to do. My surgeon tells me that I should try again for the 50% success rate of a repeat mastectomy but I am unsure.
If anyone has any thoughts I would appreciate them.
Thanks and my prayers are with all of you.0 -
Dear Norchinu, Happy Birthday!!! I am so sorry you are going through this terrible time, but on the bright side, you have been blessed with a great prognosis! I can understand your uncertainty about having a mastectomy, especially after going through two surgeries already, but I don't understand why your surgeon says it's a 50% success rate. I would think with such a small area of DCIS, they should be able to get the whole thing pretty easily with a mastectomy. I have a similar diagnosis, although my DCIS covered a larger area and I had only one micro-invasion; My estrogen was also slightly positive. I decided to have a bilateral mastectomy with reconstruction at the start, to avoid radiation, tamoxifin, and fear of recurrence. Also, with the Her2+++, I did not want to play around. I am five years cancer free now! There are others with our diagnosis who have opted for lumpectomy and are doing just as well. Perhaps they can give you their point of view, but my advice would be to go ahead with the mastectomy. Sending you lots of love and strength. Love, Amy
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Happy Birthday Norchinu! It is not an easy decision. I chose mastectomy because the cancer was on my left breast and wanted to avoid radiation to the area. My surgeon, bless her heart, whispered to me as she was getting me ready for surgery that she would do the same thing to avoid radiation to where the heart is. To me, MX is the lesser of the evil. Praying for you to make the right decision
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The majority of cases can avoid radiation when an MX is done for DCIS and all nodes are clear. In rare cases they cannot get clean margins even with MX - that was my case. This was because I was small breasted, the area of DCIS was large (6 cm+), and I had little fat between my breast tissue and chest wall and skin. So although I did the MX to try to avoid rads on my left side I still had to have it due to very close margins. I AM THE RARITY. If you really want to avoid rads, MX usually is effective in achieving that goal.
MX and reconstruction is not a walk in the park, though. You will lose sensation and recon can be challenging for some. there are many factors to consider.
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Thank you Dancetrance for mentioning that. It is true MX n recon is NOT a walk in the park. Currently, I'm having axillary cording in my left arm. PT said 99% of the time it will resolve itself. Hopefully, I don't fall in that 1%. I have heard that some people develop neuropathy with mastectomy. There are possible complications with either choice-MX vs. lumpectomy with radiation.
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I had some cording, too, with the 3 nodes I had removed. It did resolve almost 100%. You are still early out. I think your chance of it resolving is excellent, especially if you are in PT. They can do some soft tissue techniques to release it now, before it gets too developed.
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