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All TopicsForum: DCIS plus HER2-positive Microinvasion → Topic: Micro-invasive DCIS that is her2+++

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 6/8/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/8/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 9/7/2016 Herceptin (trastuzumab) Targeted Therapy 9/8/2016 Perjeta (pertuzumab) Radiation Therapy 11/30/2016 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.

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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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