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Topic: Micro-invasive DCIS that is her2+++

Forum: DCIS plus HER2-positive Microinvasion —

Meet others with this diagnosis.

Posted on: Feb 15, 2010 09:35PM - edited Apr 28, 2010 04:03PM by Liz08

Liz08 wrote:

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. 

Dx: 1/16/08, Stage T1mic, DCIS,
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Sep 8, 2017 01:50PM HeartdesiresLife wrote:

Hello...I wonder if anyone can comment on how accurately small microinvasion can be tested for HER2 status? I had bilateral mastectomy with sentinel node biopsy on 8/25/17 and DCIS 7.1cm on the left with 0.7mm microinvasion and during the estrogen testing, it seems the sample basically just disappeared according to the medical oncologist who spoke to the pathologist. Pathologist was also unable to definitively say whether it was the microinvasion which tested positive for HER2 (FISH) and not the DCIS as the sample they took may have gotten some DCIS as well. I guess one way to help figure this out would be to test DCIS itself and if HER2-, then it would be the microinvasion which tested HER2+. Of course if DCIS is HER2+, then back to square one.

I will probably end up requesting a second look at the pathology along with a 2nd medical oncology advice but I was wondering about anyone's input about testing for something so small.

Also in regards to Taxol/Herceptin, anyone receiving or have received modified/less than the standard regime of 3 months combined and 9 months of Herceptin? I tend to be hypersensitive to medication's effects, so I wonder even if I decide to go this route whether I will be able to tolerate it.

Thank you very much!

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Oct 12, 2017 08:19PM HeartdesiresLife wrote:

I posted on a different topic but just in case my experience may help shed some light...

8/25/27 bilateral mastectomy with sentinel node biopsy, no reconstruction

pathology showed:

left breast 7.1cm DCIS, high grade with 0.7mm microinvasion which was HER2+

right breast 1.4cm DCIS, high grade

UCLA oncologist recommended Taxol/Herceptin as extra insurance

City of Hope oncologist said no further treatment and no labs/scans for monitoring and only self exams/physician exams unless an issue arises due to risk/benefit of such a small invasion

USC oncologist concurred with City of Hope's recommendation

When USC oncologist was asked about taking Herceptin only, her response was for someone who was physically fragile and would have greater benefit of receiving something vs nothing, yes Herceptin only could be given. But Herceptin is not effective without the synergistic effect of chemo. As for Perjeta, this medication is indicated for those with metastatic HER2+

I forgot to ask if my case can be presented to a tumor board but I have reached a certain comfort level of not pursuing further treatment.

Everything about breast cancer is scary but I think the most intimating is metastatic breast cancer. So on a positive note a friend sent a Wall Street article about a metastatic breast cancer patient being cancer free due to immunotherapy little while ago...since it was Wall Street article, it wouldn't let me read the whole article without being a subscriber but below link is from an open source with what I presume is the same article.

https://www.msn.com/en-us/news/money/immunotherapy...

Once again thank you for those with past experiences who have guided and continue to guide us newbies along.


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Oct 15, 2017 01:28AM lara0729 wrote:

Hello,

I've had a bit of a roller coaster with my diagnosis -- initially DCIS in the left breast (9 cm, pr/er negative, HER2 not tested), no lymph involvement. They could see on the MRI that I have a lot of "reactive" lymph nodes, so my BS has been saying that my case is not straightforward.

Had a unilateral mastectomy (I'm BRCA1&2 negative) with 8 nodes removed on 9/25 and was told my lymph nodes were clear. Then pathology came back that 1 lymph node had a micro-met of 1.2 mm that is pr/er negative, HER2 positive. The analysis of the breast tissue and large DCIS mass didn't find any invasive disease, but the pathologist comments said "assume microinvasion is present in unsampled tissue." My BS sent the tissues off for second opinion but I haven't heard back on that. Meanwhile, I met with an oncologist and they are saying I can choose between TCH (4-6 cycles every three weeks, Herceptin for a year) or Taxol + Herceptin (every week for 12 weeks, Herceptin for a year).

I'm not sure which way to go...if feels like I "barely" have cancer -- but of course I'm worried about recurrence. The DCIS came up very fast. I had a mammo last year that found nothing, then this summer my left breast grew very fast, and that prompted me to go in early for a mammo (which of course turned into biopsy, MRI, etc.). I'm 41 with two small kids (5 and 7) and work full time...there is never a good time to deal with cancer for anyone, but the timing for me is about as bad as it can be with everything going on in my life right now.

Any advice on TCH vs. Taxol + Herceptin? I've read about them as treatments, but it's not clear to me how they compare to each other in terms of reducing the rate of recurrence.

Heartfelt thanks,

L
Dx 8/29/2017, DCIS/IDC, Left, 6cm+, Stage IIA, Grade 3, 1/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 9/25/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy Targeted Therapy 11/1/2017 Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel)
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Oct 15, 2017 02:05AM stephincanada wrote:

Heartdesireslife,

If you will not receive systemic therapy, what kind of screening will you have on a go-forward basis? Are your breasts dense? Mammograms are notoriously poor screening tools for dense breasts. MRIs are more effective.

Dx 5/26/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 6/7/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/7/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/7/2016 Perjeta (pertuzumab) Radiation Therapy 11/29/2016 Whole-breast: Breast, Lymph nodes
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Oct 15, 2017 09:38AM BBwithBC45 wrote:

I have very dense breasts (well, the remaining breast), but my insurance will not approve MRI. I had a mammogram last May. The results were benign, but I don't feel relieved at all.

I really feel like I should be getting an MRI. I'm not in an income bracket where I could afford to pay for one out of pocket without creating hardship in other areas.


Saved my hair with cold caps. Dx 1/4/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/12/2015 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/17/2015, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 2/2/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Targeted Therapy 3/3/2015 Herceptin (trastuzumab) Chemotherapy 3/3/2015 Taxol (paclitaxel) Surgery 6/1/2015 Reconstruction (left): Tissue expander placement Hormonal Therapy 6/8/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/30/2015 Reconstruction (left): Silicone implant Surgery 3/8/2016 Reconstruction (left): Silicone implant Surgery 6/6/2016 Prophylactic ovary removal; Reconstruction (left): Fat grafting Surgery 10/10/2016 Reconstruction (left): Fat grafting Surgery 7/17/2017 Reconstruction (left): Fat grafting
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Oct 15, 2017 09:51AM JoniB wrote:

BCwithBC45 do you mind revealing your insurance carrier? I have had yearly MRIs since 2008 and I'm scared of changing carriers at work since my current carrier has always covered. Perhaps it's because I definitely had an invasive component - although small at 3 mm.

Two time breast cancer survivor. Recurrence after 8 years. First time 3 mm ER-, PR-, HER2+. Recurrence 4mm - triple positive.
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Oct 15, 2017 11:07AM BBwithBC45 wrote:

JoniB,

I sent you a private message.

BB


Saved my hair with cold caps. Dx 1/4/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/12/2015 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/17/2015, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 2/2/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Targeted Therapy 3/3/2015 Herceptin (trastuzumab) Chemotherapy 3/3/2015 Taxol (paclitaxel) Surgery 6/1/2015 Reconstruction (left): Tissue expander placement Hormonal Therapy 6/8/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/30/2015 Reconstruction (left): Silicone implant Surgery 3/8/2016 Reconstruction (left): Silicone implant Surgery 6/6/2016 Prophylactic ovary removal; Reconstruction (left): Fat grafting Surgery 10/10/2016 Reconstruction (left): Fat grafting Surgery 7/17/2017 Reconstruction (left): Fat grafting
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Oct 15, 2017 01:32PM HeartdesiresLife wrote:

Dear Stephincanada,

Going forward nothing other than monthly self palpation check, about 2 weeks following the start of my period and once a year or twice a year physician palpation check of the underarms and chest area. So no mammogram, ultrasound, or MRIs or labwork checking for cancer markers unless new symptoms/changes.

Another writer had written in about seeing their breast surgeon twice a year and seeing their oncologist twice a year, separated by 3 months...so every 3 months there is an exam by breast surgeon or oncologist. That schedule makes sense to me. So I'm going to try that but instead of breast surgeon, my thinking is with an OB/gyn.

BBwithBC45, I would think insurance would approve at least the initial MRI but if even the initial MRI was denied, then a mammo + ultrasound may work for the dense breast for the extra assurance. Ultrasound is much cheaper than MRI with contrast, so I think there will be higher chance of insurance approving it.

Lara0729...getting that 2nd pathology review sounds like the right thing to do and I got 3 different oncology opinions about chemo, so maybe at least a 2nd medical oncology opinion would be good for you despite everything else you need to juggle in your life. Also I learned the hard way, it is profoundly advisable to seek the experts from larger institutions rather than smaller near home facilities despite the convenience. Wishing you the best on this rocky journey!

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Oct 17, 2017 11:23PM HeartdesiresLife wrote:

Just trying to see how to put in my correct diagnosis without using the preset MyProfile options...

_________________________________________________________________________

diagnosed at the age of 46, 7/7/17 left 7.5cm DCIS high grade

8/25/17 bilateral mastectomy with sentinel node biopsy

left 7.1cm DCIS, high grade with 0.7mm microinvasion - hormone receptors negative, HER2+

right 1.4cm DCIS, high grade

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Aug 17, 2018 08:39PM heaterc wrote:

Hi, i know this is an old post but was hoping for a little more info. Diagnosed with dcis grade 3 er+pr-her2 positive .5mm microinvasion. Age 45. Lumpectomy Oncologist is taking to tumor board regarding treatment. Based on what i read here same diagnosis and if i interpret this correctly no treatment?

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Aug 21, 2018 09:24PM HeartdesiresLife wrote:

Dear Heaterc,

Because you have estrogen positive microinvasion, I wonder if the anti-hormone therapy would be recommended for you. Also for me personally from 3 oncologists - one said yes to chemo/Herceptin and 2 said no. I'm almost one year out post mastectomy and I went with the no treatment advice.

I think it is great that your oncologist is consulting a tumor board. But if possible maybe you can consult a 2nd oncologist from a different cancer facility.

Wishing you great peace!


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Sep 3, 2018 07:09PM heaterc wrote:

just wondering if this discussion is still active

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Dec 21, 2018 08:42AM Magicunicorn wrote:

Hi All, just want to introduce myself and looking to connect with others with DCIS with microinvasion. I had bilateral mastectomy on Dec17 (left breast had extensive DCIS, right breast prophylactic). The surgeon called me last night and said they foind two spots each less than 1mm with invasion which tested ER/PR negative and HER2 positive. I am about to meet with two oncologists but the surgeon told me in her practice she has not seen chemo and herceptin recommended for such small invasion. No lymphatic and no blood vascular invasion, clear margins around the IDC, close to the skin for the DCIS. I am 31 and i am very very worried about the HER2 and the fact they were two spots. Has anyone been given chemo for similar diagnosis? Thanks

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Dec 21, 2018 09:33AM - edited Dec 21, 2018 09:39AM by MCBaker

Mine was 3mm, much larger than yours, but my DCIS was 10cm. You can ask about herceptin alone, but it is quite expensive, and your insurance might not approve it.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Targeted Therapy Nerlynx
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Dec 21, 2018 10:00AM - edited Dec 21, 2018 10:10AM by Magicunicorn

Hi MCBaker, i see you did taxol and herceptin. May i ask what was the recommendation based on-the size of the IDC solely or anything else. I read that Herceptin alone ha not been proven to be very beneficial without Chemo. And you are so right about cost of herceptin if its not approved by insurance, its scary

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Dec 21, 2018 10:15AM MCBaker wrote:

Based on HER+ status. If it had been hormone positive and HER negative, it would have been pills, Onco said that there is no other choice. Given how nasty HER+ is, a ten percent chance of recurrence is not worth the gamble. It is early, but I wish we would have gotten it earlier, in just DCIS grade three, stage 0. Then just mastectomy would have worked.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Targeted Therapy Nerlynx
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Dec 21, 2018 11:21AM Magicunicorn wrote:

I know this feeling- I felt devastated when i reveived the call that among the DCIS they found 1mm spot of invasion and its HER2+. Did you get second opinion on the chemo recommendation? I am planning to meet with at least two cancer clinics to compare opinions

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Dec 21, 2018 11:35AM MCBaker wrote:

I am doctoring with the Mayo organization, so I don't think a second opinion is necessary. They do a lot of teamwork, presenting and discarding and deciding for each individual as an individual.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Targeted Therapy Nerlynx
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Dec 21, 2018 12:30PM Magicunicorn wrote:

Yeah, that makes good sense. I am going to Dana Farber in early January and i know they did a study on early stage her2+ for 12 weeks taxol and herceptin, so i am curious if this will be the recommendation for microinvasion as well. How are you doing with your regime so far? I hope everything is well

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Dec 21, 2018 12:59PM MCBaker wrote:

Just begun. Not too much to report yet.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Targeted Therapy Nerlynx
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Dec 21, 2018 06:44PM - edited Dec 21, 2018 06:46PM by Tresjoli2

I just wanted to say i had 4cm of DCIS and 1.5mm of IDC. I was at Beth Israel, but consulted at Dana Farber. It was recommended i do 12 weeks of taxol and a year of herceptin. Her2+ is nothing to mess with IMO. Good luck with your decision making...

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/23/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 21, 2018 07:08PM Magicunicorn wrote:

Thanks Tresjoli2, seems like we are homies :)) i know her2 is nothing to mess up with but i was so hoping i could avoid chemo! How was taxol for you? Any long term side effects so far

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Jan 11, 2019 08:19AM Lindachow01 wrote:

have u done any of taxol? Any Side effects?

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Jan 11, 2019 08:56AM Magicunicorn wrote:

Hi-just wanted to post an update. I was seen at Mass General and Dana Farber this week and both oncologists said they will not treat me with chemo and/or herceptin for such tiny tumor because they believe that the risks outweigh the benefits.

I trust both hodpitals and in my opinion DF is one of the best cancer centers, but I keep reading about others with similar diagnosis who had Taxol and Herceptin and I am freaking out that I am not doing enough. Dana Farber told me my risk of distant reoccurrence is ~1-2% and I should worry to put a seat belt and sunscreen and try to live my best life without letting this tiny HER2 consume me.

I aksed why some patients are given chemo and some not and was told that chemo is person specific and they cannot discuss others treatment but maybe it was people with more focis for example. Needless to say, i am unease because i found numerous women with 1-2focis less than 1mm who had Treatment.

I am considering going for a third opinion. Do you think a smaller local hospital will be more likely to give me at least herceptin? I cant help but worry what if it comes back and i didnt do anything (besides mastectomy). That thought doesnt give me peace...


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