Micro-invasive DCIS that is her2+++
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Unfortunately, I had a MX & will be starting radiation in 2 weeks. I had a large area (7 cm) of DCIS & multi-focal microinvasion. I had 2 positive margins for DCIS & close margins for microinvasion. I just finished up Taxol & am continuing with Herceptin. I was told without rads that I had a 15-20% chance of recurrence in that breast. Too high for my liking. So hesitantly I am going forward. I am SOOO worried about how this will impact my reconstruction.
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miscraw - ah man, your case sounds so much like mine. I reluctantly went ahead with rads for close margins after MX, too. I'm sorry. I know how awful it was to go through that trauma of doing an MX thinking you wouldn't need rads. Hugs! Regarding rads, yep, it is scary regarding recon. You cannot control what happens - just gotta do what you need to do to prevent recurrence, as yes 15 to 20% risk was too high for my liking, too.
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So glad to have found this topic. This was my diagnosis. I have been worried since I passed the 5 year mark and asked my oncologist if I graduated to only seeing him once a year instead of every 6 months. He quickly said "not with the type of cancer you had" . I was not expecting that response and have been worried since.
How often do you others have go in for a check up ??
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Hi Sammy, I am six years out and have only gone for annual checkups. I also had a bilateral mastectomy, and in addition to my DCIS, they found 1 mm of IDC that was Her2+++. I had no further treatment.
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Amyob
Thank you for posting the staging info.
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Glad you have taken this intiative, although I fall between two stools, as they say. In March 2015 diagnosed HER 2+++, Hormone negative, both invasive and noninvasive microcalcifications. This was a recurrence from a large--4 cm--highly invasive, visually growing to oncologist bc tumor. Due to size had 16 was Taxilpaxil and Herceptin followed by 3 cycles Cytoxin plus Adriomyacin ( was to have 4 but my medical oncologist said he didn't want me to go through t last one--literally lost 20 lbs from my already underweight body and had scary black and purple sores spreading out from my mouth). Had a total of 12 months of Herceptin, which caused no problems at all. Imagining before a lumpectomy indicated the tumor had vanished. A disbelieving surgeon admitted he was wrong: I had had a complete pathological, cytological, physiological cute. Radiation was dismissed b/c node negative; I could have it in t future if needed.
Four yrs 6 months later the microcalcifications were detected during yearly mammo. Had 3 hour procedure for 16 clip biopsies via imaging. Ended up with port surgery again, four nodes culled, and 2 lumpectomies b/c the first surgery did not get all malignancy. Still questions there b/c margins too minimal (1 mm). Rec'd 12 weeks Paciltaxil and Herceptin, which I had to fight for. Oncologist has never seemed to get that this was a recurrence with HER2+++ as aggressive as the first time. A month after treatment, which was far worse this time (with over 6 weeks uncontrolled nausea, near constant fatigue, and t development of terrible neuropathy in my feet that has greatly affected my balance--have taken 3 serious falls. Had high intensity radation for four wks.
Treatment had first hospital (military) far superior to a Johns Hopkins hospital in Washington DC. Have had few and very short (last one by my watch: 6 minutes) appointments with my medical and radiation oncologist
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I was diagnosed 1 month ago, so I am new to this with no family history of cancer and I'm just learning the terminology and researching as fast as possible.
My first surgery was a lumpectomy on 4-1 along with removal of the left nipple (Paget's disease) with a reexcision on 4-12 to provide clear margins and then a SNB on 4-18. Pathology report shows T1mic (1mm) M0, N0 (0/1), grade 3, HR-,PR-, HER2+++.
My first oncology visit was 4-4. After telling me how aggressive my tumor was, I was told that based on micro size of invasive tumor that chemo/herceptin would not be recommended (tumor size required to be 6mm) and that RT would be the only recommended course of treatment -- I have not yet met with the radiation oncologist.
I was not looking forward to chemo, but would do whatever is necessary to be cancer free. RT will eliminate any remaining tumor cells in the breast but I am very concerned about the possibility of microinvasion of the vascular system and metastisis. The oncologist consented to have my tissue samples sent to a specialist at Moffitt to reexamine/redo the pathology and provide a second opinion.
I realize that clinical tests don't support chemotherapy and targeted therapy for a tumor this small, but that's because testing on patients with this diagnosis has not been widely undertaken due to the rarity of this diagnosis.
When I visited my surgeon and reiterated the oncologist's opinion, he concurred with the oncologist and then tried to calm my fear by reasoning that because of the small tumor size and negative lymph node that the likelihood of vascular invasion is very small.
My thought is that RT will clear the breast tissue, but without a systemic treatment, the rest of my body is vulnerable. Frankly, this worries me. I read a statistic that shows that Stage 1 is 100% curable, but look at my stats: Paget's accounts for about 4% of breast cancer- I'm in the small 4% group, HER2 markers account for about 20% of breast cancers- I'm in that small group, so if there is a small possibility of vascular infiltration- I'd probably be in that small %, as well.
I'm very interested in what others with this diagnosis are receiving, or have received, as treatment or what you can share about recurrence rates.
Thanks for any responses and sharing your experiences.
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Thanks for pursuing and having this forum added. I think it will be important and valuable to those with this diagnosis. Just having completed my surgery, I have been researching the internet and could find very little pertinent information and discussion. So thank you again for establishing this forum.
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so I had 1.5mm of IDC, and I chose taxol and herceptin. There is a thread on here for women who have less than 6mm of IDC who are on this regimen. IMHO her2+ isn't something to mess around with. You might want to consider a second opinion
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JerseyShoreGirl, welcome to the Breastcancer.org community! We're sorry that you're here, but glad you joined us!
You may also like to check out and join the conversation in the links below:
And if you decide to pursue a second opinion, here's more information on how to do that, from our main site.
Hope this helps! Let us know how you're doing!
The Mods
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Chemo is not recommended for < 1 mm of HER2+ IDC. For those between 1 mm and 5 mm, it is controversial - some oncs recommend, some don't. > 5 mm, it is recommended.
If you are less than 1 mm you are microinvasive - very, very little risk of recurrence. I know it is scary but try to find some reassurance in that fact!!!
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Hi JerseyShoreGirl and Dancetrancer:
I think a second opinion, including review of pathology, should be helpful.
I note that with ER - PR- negative disease, one does not have the option of systemic endocrine therapy.
The following discussion is not a comprehensive discussion of all types of HER2-positive microinvasive disease.
I note that for ductal, lobular, mixed or metaplastic histology, node-negative (N0), hormone receptor-negative, HER2-positive disease that is "Microinvasive", the National Comprehensive Cancer Network (NCCN) guidelines for breast cancer (Version 1.2016) provide:
Consider adjuvant chemotherapy with trastuzumab (category 2B)
It is further noted: "The prognosis of patients with T1a* and T1b** tumors that are node negative is uncertain even when HER2 is amplified or overexpressed. This is a population of breast cancer patients that was not studied in the available randomized trials. The decision for use of trastuzumab therapy in this cohort of patients must balance the known toxicities of trastuzumab, such as cardiac toxicity, and the uncertain, absolute benefits that may exist with trastuzumab therapy.'
"There are limited data to make chemotherapy recommendations for those >70 y of age"
"Category 2B" indicates that "based upon lower-level evidence, there is NCCN consensus that the intervention is appropriate. (Category 1 is the highest level of consensus.)
Thus, with the type of microinvasive disease (T1mi Tumor ≤1 mm in greatest dimension) noted above (bold text), chemotherapy plus trastuzumab is an option to consider. This entails a case-specific, personalized assessment of risk / benefit as part of an individualized decision-making process.
The risk assessment is complicated by the fact smaller tumors are a less studied subset of HER2-positive disease, and the available studies are small. For example, with T1a or T1b tumors, there is quite a bit of variation between studies regarding the magnitude of the risks of recurrence (loco-regional and distant) that they face. In addition, for these smaller tumors, there is not as much clinical evidence available about the results of treatment.
As part of this process, patients should seek expert professional advice from medical oncologists regarding whether any clinico-pathologic features of their disease may present added risks, and request information about their estimated risk of distant recurrence with or without systemic treatment. As part of the analysis, patients should not hesitate to investigate the risks of specific systemic treatments, including serious side effects, and their estimated magnitude in light of their overall health, personal medical history and risk factors. For some patients, in light of their personal risk tolerance, the potential benefit in terms of risk reduction may not be seen to outweigh the potential risks.
Here is one recent study that influenced treatment guidelines in this area and led to revision of the NCCN guidelines in 2015:
Tolaney et al. (NEJM): http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion
In this study, it appears that 9 patients (2.2 %) had microinvasive disease (Table 1), illustrating the lack of data applicable to this group. The discussion acknowledges that patients may decide the question differently: "However, the study does not provide data to support the use of trastuzumab-based chemotherapy in all patients with small HER2-positive tumors, and there will be many patients with T1a disease and some with T1b disease who will decide with their physicians to avoid the toxic effects of a trastuzumab-based regimen."
I am a layperson, with no medical training, so please confirm all information with a medical oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.
Sending positive thoughts for good decision-making your way.
BarredOwl
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* T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension
**T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
NCCN guidelines for breast cancer are available for free with registration here (click on "Breast Cancer" at very top of page:
https://www.nccn.org/professionals/physician_gls/f_guidelines.asp#breast
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I had 3 mm of IDC and my Oncologist said I was in a grey area regarding Chemo. She recommended a second opinion from Mayo Clinic. The Oncologist at Mayo agreed that Chemo was the best option. I'm glad that my Dr. was willing to request a second opinion. Best wishes with your decision.
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Hi JerseyShore. We have similar diagnoses and at the same time except I am triple positive with micro-invasion. I had a double mastectomy two weeks ago and now am suffering from an infection from one of my tissue expanders and had to have it removed. A set-back! Anyhow, the last time I spoke with my breast surgeon, she told me that I might not need chemo/herceptin because of how small the cancer was. I was shocked. My case is going to a tumor board soon and I am hoping they don't have the same opinion. I am only 42 and have 3 small children and I will do anything to up the chances of no recurrence. With all of my research, I fully expected to be in treatment for the next year and although I was not looking forward to it, I wanted the extra insurance. By the way, I spent my summers at the Jersey Shore and own a house there!
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Hi, i was diagnosed with DCIS on core biopsy, operated Right Mastectomy with sentinel node biopsy on 6th May. Histopath showed 5×5×5.5 cm DCIS, multiple foci of microinvasion less than 1 mm & 1 focus of 2mm, grade 3, with comedo necrosis. Margins free & sentinel nodes negative, ER PR Neg, HER +++
i was told no chemo, RT by my surgeon but i consulted 2 oncologists. One prescribed Paclytaxyl + Trastuzumab. The other onco told me i was in a grey zone & better to opt for chemo. I am 48 yrs, in a dilemma about assessing the risk benefit ratio of taking chemo...
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Hi Suji and welcome to Breastcancer.org,
You're sure to get lots of answers and advice here soon from our very helpful members. Please let us know what you decide and if you need any assistance at all while you navigate our discussion boards.
We look forward to hearing more from you soon!
--The Mods
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Hi Sujii. It is a grey zone, and yes you do have to weight the pro's/con's. I welcome you to read this thread for those of us in that grey zone, > 1 but less than 6 mm of HER2+ IDC:
https://community.breastcancer.org/forum/80/topics/781897?page=21#idx_603
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Hi Suji:
I understand you are saying the 2 mm tumor was specifically determined to be ER-PR-HER2+. Please advise if that is not the case.
Here is a live link for dancetrancer's thread for HER2-positive "T1a"-sized tumors:
https://community.breastcancer.org/forum/80/topics/781897?page=21#idx_603
Regarding dancetrancer's thread, please note that the NCCN guidelines changed some time in 2015, thus treatment advice from earlier in the thread may not reflect current practice. Please also note that some patients with ER and/or PR-positive, HER2-positive disease have the added option of long-term endocrine therapy, and choose to rely upon this. In addition, some patients had co-morbidities concerning for treatment; some patients posting in the thread have tumors larger than 5 mm; and some are younger or older than you. In addition, even in cases where risk/benefit profiles are identical in all aspects, people with different personal "risk tolerance" may decide the same question differently. Thus, each person must come to their own personal decision.
Under the AJCC staging system, a 2 mm invasion is not a "micro-invasion" ("T1mi"), but is considered "T1a":
https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
T1mi Tumor ≤ 1 mm in greatest dimension
T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension <== 2 mm tumor is "T1a"
T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
Please see my post above from May 5, 2016:
https://community.breastcancer.org/forum/111/topics/748406?page=15#post_4708806
Although my post of May 5 focused on "microinvasive" disease, the content of the post is still current per NCCN guidelines (Version 2.2016) and is equally applicable to ductal, lobular, mixed or metaplastic histology, node-negative (N0), hormone receptor-negative, HER2-positive disease in which the Tumor is >1 mm but ≤ 0.5 cm ("T1a"):
Consider adjuvant chemotherapy with trastuzumab (category 2B)
Note: "The prognosis of patients with T1a and T1b tumors that are node negative is uncertain even when HER2 is amplified or overexpressed. This is a population of breast cancer patients that was not studied in the available randomized trials. The decision for use of trastuzumab therapy in this cohort of patients must balance the known toxicities of trastuzumab, such as cardiac toxicity, and the uncertain, absolute benefits that may exist with trastuzumab therapy."
In the Tolaney study, where patients received paclitaxel plus trastuzumab, 68 patients (16.7%) had T1a-size tumors.
Sending postive vibes for decision-making your way.
BarredOwl
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Hello everyone. 2 weeks ago I was diagnosed with high grade DCIS with microinvasion HER2+++ ER/PR- Also they are concerned about something in the other breast. So, I'm waiting for an MRI and an appointment with the plastic surgeon. My breast surgeon felt that this could be easily treated with either a lumpectomy with radiation or a mastectomy and no radiation. My question is this: will I need Hercepten? And she also said " no chemo needed". Anyone have any advice or other input? Oh, my tumor is 1.6 cm and there is an area of calcifications that are 7.5 cm long AND I have another area of calcifications they haven't biopsies yet. The needle biopsy of the lymph node was negative.
Thank you!
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we have very similar diagnosis. Unfortunately and to our surprise I had micromet to my lymph node so we ended up doing chem
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- Thank you bravemama34. I guess we will wait and see what the actual lymph node shows after surgery. It just seems like my surgeon was so non chalant about everything. And they don't seem to be in any hurry at all. The waiting is aweful.
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Hi everyone I'm hoping this site is active in need some info. I was diagnosed on 11/7/16 with dcis stage 0 grade 3 in the left breast at 41 and on 12/27/16 I have a bilateral mastectomy with reconstruction. I went back to my surgical oncologist on 1/5/17 and got my surgical pathology report my RT breast had no cancer in it and she took 3 lymph node out and all clear. My LT breast was 5cm dcis grade 3 and 0.25cm area of single invasive focus it was widely clear margins and 4 lymph node taking out all clear, clear chest wall, blood and nerves system. I'm EP+ 30% and PR+ 15% her2+ fish. Went to see a medical oncologist on 1/18/17 and he gave me 3 options 1) tamoxifen 2) tamoxifen and herceptin every 3 weeks for 1w mouths 3) chemo taxol x12 and herceptin 12 months and tamoxifen. I was going for a 2nd opinion but they miss my date up I was supposed to have it on 2/27 but they called me today and said it's 3/27/17. I'm not sure want to do I don't want to under do it but I don't want it overy do it either. Does anyone have the same as me and what did you do? Thank you for your help
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Hi Robin1234:
You said that the single invasive focus is "0.25cm". That would be 2.5 mm. A 2.5 mm focus is not "microinvasive". Per this summary of the AJCC staging (7th edition), a 2.5 mm focus of invasive breast cancer is T1a in terms of size only.
AJCC Summary: https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
T1 Tumor ≤ 20 mm in greatest dimension
T1mi Tumor ≤ 1 mm in greatest dimension <=========== "microinvasive"
T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension <==== "T1a"
T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension
Please post your question in this thread for those like you with T1a-size, HER2-positive disease:
https://community.breastcancer.org/forum/80/topics/781897?page=22#post_4858090
Be sure to add information about the histology of the invasive disease (e.g., ductal ("IDC"), lobular ("ILC"), other?).
Please contact your current medical oncologist immediately to inquire by when systemic treatment should begin (if elected) (e.g., before 120 days from diagnosis??), and what would need to be done to set that up (e.g., any advance tests, pre-appointments).
With that information in hand, please call back the second opinion place and explain your dates of diagnosis and surgery, and that an appointment at the end of March would not permit timely initiation of treatment, if recommended. Request that a medical oncologist at the second opinion place review your situation, consider proper timing, and work with the scheduling department to see if they could fit you in sooner. They should have scheduled any second opinion review and related appointments in a manner that ensured timely initiation of treatment. The burden of knowing proper timing was on them, and they should take steps to correct any error.
BarredOwl
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I posted in the roll call for ER-PR- HER2 + thread before finding this thread. Hope I am not posting double, just summarizing here.
My Czech partner (59, post-memo pause, no history of breast cancer in the family) was diagnosed in February 2017 with DCIS G2, growth index Ki67/MIB1 10%, ER- PR-. Her2 was not checked.
Unilateral mastectomy was performed early April. Pathology of removed tissue showed clean margins of at least 15 mm, four clean SN nodes but also two separate micro-invasions, each max 1 mm, ER-, PR-, HER2 +++ and growth index MIB1 of 60% located well within the already recognized DCIS area. No angio-invasion (that is, both microinvasions were not close to any blood or lymph vessel).
Based on that, the team told us this cancer is extremely aggressive, and she would need one cycle of 4x AC, than once cycle of T. They are checking if Herceptin is indicated for such cases.
Does this sound like a normal treatment for this? To us after all the stories of the importance of clean nodes etc, it seems like over-treatment.
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slavab: I had microinvasive er-/pr-/her2+++ high grade and they said no chemo necessary at all - they said they don't do it with less than 5mm of invasive and mine was less than 1 mm. My nodes were clear too But maybe having two microinvasive spots is different? You can get a second opinion maybe.
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Slavab,
If your partner is ER-PR-HER2+, there is no other systemic treatment other than chemo and targeted therapy (Herceptin and/or Perjeta). In contrast, if she were ER+PR+HER2+, she could do hormonal therapy to to try to starve any remaining cancer cells of the estrogen that fed it.
Don't assume that her cancer wasn't being sustained by a blood supply, if there was a small invasive component to it. If the cancer in question was sustained by a blood supply, then it has entered her circulatory system and isn't confined to the space it occupied. Once cancer enters the bloodstream, it can go anywhere -- to the bones, to organs like the lungs and the liver, and (sadly in the case of HER2+) to the brain. But, if you are concerned about the recommended treatment for your partner, by all means seek a second opinion. This sounds like a borderline case, but I could be wrong.
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Hi Slavab:
Recommendations for systemic therapy in this situation are made on a case-specific basis and entail significant exercise of clinical judgment by medical oncologists. In this type of situation, a second opinion from a medical oncologist at an independent institution can be a good way to probe the medical advice received and to seek additional professional input. The second opinion process also provides an opportunity for additional discussion and questions, and may be helpful to understanding individual risk/benefit profile. She can also seek additional input about particular regimens when recommended.
For information only, our local clinical consensus guidelines from the National Comprehensive Cancer Network (NCCN) (Version 2.2017) applicable to those with hormone-receptor negative, HER2-positive, ductal, lobular, metaplastic or mixed invasive breast cancer, that is node-negative (N0), with "Tumor ≤0.5 cm including microinvasive" provide for consideration of adjuvant chemotherapy with trastuzumab. (See e.g., Chart BINV-7)
Thus, in such case, chemotherapy plus trastuzumab is an option to be considered, and receiving or not receiving systemic treatment are formally within consensus guidelines.
This is a Category 2B statement:
"Category 2B: Based upon lower-level evidence, there is NCCN consensus that the intervention is appropriate."
In the appropriate case for such treatment, in the USA, trastuzumab (HERCEPTIN) would typically be included the regimen. In the appropriate case, chemotherapy with weekly paclitaxel and trastuzumab may be recommended (see Tolaney et al. (2015) below).
If access to trastuzumab (HERCEPTIN) is an issue in certain countries, and the systemic regimen does not include trastuzumab, I am not sure, but it seems possible that a stronger chemotherapy regimen might be considered in some cases. As a layperson, I have no idea, because the selection of particular regimen requires medical oncology expertise and clinical judgment. Again, a second opinion could be helpful in this regard.
As noted by ElaineTherese, with hormone receptor-negative disease, the patient does not have the option of endocrine (anti-hormonal) therapy.
Even with small tumors, negative nodes, and no lymphovascular invasion, there is some risk that some cells escaped the breast and moved to distant sites before surgery, laying the foundation for distant (metastatic) recurrence. The estimated size of this risk for the individual is one of the main considerations in recommendations for systemic drug treatments. See: https://community.breastcancer.org/forum/96/topics/854009?page=1#post_4941787
The decision requires a personalized case-specific risk/benefit analysis by a medical oncologist familiar with all of the relevant clinical (e.g., age, co-morbidities) and pathologic features of the individual patient's disease (histology, tumor size, etc). Age and multifocal disease are potentially relevant considerations. Differences in clinical and/or pathologic factors between patients may lead to differing medical advice. Differences in "risk tolerance" between patients may lead to different decisions under relatively similar circumstances.
Estimating distant recurrence risk may be more challenging in this situation, because smaller tumors are a less studied subset of HER2-positive disease, and the available studies are small. For example, with T1a or T1b tumors, there is quite a bit of variation between studies regarding the magnitude of the risks of recurrence (loco-regional and distant) that they face. In addition, for these smaller tumors, there is not as much clinical evidence available about the results of treatment (as compared with larger tumors).
As part of the decision-making process, patients should seek expert professional advice from medical oncologists regarding whether any clinico-pathologic features of their disease may present added risks, and request information about their estimated risk of distant recurrence (a) with systemic treatment; and (b) without systemic treatment. In order to weigh benefit versus risk, patients should inquire about the risks of any recommended drug regimen, such as serious side effects and their incidence, in light of their overall health, personal medical history and risk factors (e.g., co-morbidities).
Here is one recent study that influenced treatment guidelines in this area and led to revision of the NCCN guidelines in 2015 to include consideration of the option of chemotherapy plus trastuzumab for smaller tumors:
Tolaney et al. (2015), "Adjuvant Paclitaxel and Trastuzumab for Node-Negative, HER2-Positive Breast Cancer"
Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion
PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281
In this study, it appears that 9 patients (2.2 %) had microinvasive disease (Table 1). The discussion acknowledges that similarly situated patients may decide the question differently. If this study influences her thinking in any way, she should be sure to discuss it with her team to ensure accurate understanding and applicability to her particular situation, and to inquire about any more recent information.
I am a layperson, with no medical training, so please confirm all information above with a medical oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.
Best,
BarredOwl
Under AJCC (7th Edition) staging criteria, size-wise only:
https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
T1mi Tumor ≤ 1 mm in greatest dimension <=========== "microinvasive"
T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension
T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension
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The pathological analysis did not show a blood supply connection; presumably this was the very first place where DCIS was turning into aggressive IDC. And yes, it is again a borderline case.
My wife started with the AC cycle today.
This afternoon, when coming back from that, I found a follow-up email from the AVL/NKI. They more or less stated that they would consider chemo seriously, but in a different regime. Their recommendation would be not first AC, than T with or without herceptin but directly a paclitaxel-herceptin combo according the so-called Tolaney regime. Much less aggressive, less side-effects but as effective according the latest evidence that is continuously coming in.
Came to late for the first cycle, but we will try discussing it with the oncologist.
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BarredOwl, thanks for the info. Somehow, it appeared above my post but after I wrote it, must have crossed somehow.
Problem here is that in our hospital, their idea of good doctor-patient relation is that for once they do not shout at you, they tell you what is the only option you get at their place, and then they let you sign a paper that they discussed everything extensively with you, that you are aware of all alternatives, and agree with their decision.
Maybe I am a bit negative here to these people, that's because I am seriously upset about this all (apart from the concern and stress about my wife).
As you can see in my post, the Dutch AvL/NKI has the same idea. In discussions, they also mentioned that things are not that straight forward with this DCIS pre-cancer and then micro-invasive cancers. Some go quickly from one to another, and then into problems with mts despiute everything, most fall in the standard scales, but some actually never need surgery; changes for them of getting killed by a car before the DCIS grows into ICA is much bigger. Lot of research going on to figure out who needs the adjuvant therapy and who not.
I posted on that in the layman's guide to DCIS thread
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Hi Slavab:
I was just providing general information above. Sorry about the nature of medical care you experienced. Very frustrating, particularly in areas where reasonable medical minds may differ and clinical judgment is involved.
The development of invasive cancer from DCIS is an active area of research. However, that is a separate question from the recurrence risk of a patient who has already developed such an invasion.
Once any invasion is present, the pathologic diagnosis is "invasive" breast cancer (Stage IA or higher), and is no longer non-invasive DCIS (Stage 0).
When DCIS and microinvasion are both present, it is sometimes called "DCIS-MI", but despite the name, DCIS-MI is an "invasive" breast cancer diagnosis.
Whenever "invasive" breast cancer is present (regardless of invasive tumor size, nodal status, or lymphovascular invasion), there is some risk of distant spread outside of the breast, which may lead to later distant (incurable metastatic) recurrence. Hopefully, the doctors provided an estimate of the distant (metastatic) recurrence risk in her particular case. Drug treatment is designed to reach any cells at distant sites.
In the USA, the option of chemotherapy plus trastuzumab is "considered" for node-negative patients with small, HER2-positive invasive tumors, even when there is no evidence that the tumor broke into nearby lymph channels or blood vessels. This is based on studies like Tolaney (2015) above.
Longer Explanation:
The presence of any invasion, no matter how small, is considered to be Stage I disease [or higher]. Under AJCC staging (7th edition), you can see that tumors that are pT1, N0, M0 are considered to be Stage IA. The note to the right of the table makes clear that T1 includes T1mi (invasive Tumor ≤ 1 mm in greatest dimension (i.e., microinvasive tumors)).
https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
Different clinical consensus guidelines regarding adjuvant systemic therapy apply to patients with Stage 0 (pTis N0 M0) disease versus those with Stage I disease (pT1 N0 M0, pT1mi N0 M0):
Pure DCIS (Stage 0 disease) is never treated with chemotherapy or HER2-targeted therapy under consensus guidelines.
In contrast, reflecting a differences in the risk of distant metastatic recurrence due to the presence of "invasion", in the appropriate case, in the USA, some patients with HER2-positive microinvasive disease may receive systemic adjuvant chemotherapy plus trastuzumab. Such treatment, when recommended, is formally within NCCN guidelines (Version 2.2017) applicable to HER2-positive, node-negative (N0), ductal, lobular, metaplastic or mixed invasive breast cancer where the "Tumor ≤0.5 cm including microinvasive".
Best,
BarredOwl
[Edited first line of "Longer explanation" to add: "or higher"
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