Final path. report finds IDC.
Went in for my follow-up today, the drain was removed, the area is healing well. The final path. report was in and my BS tells me that cancer cells were found but my nodes were still found to be clear of malignancy. I asked him how many sentinel nodes I had, he said there were 2 but one was devascularized so he removed both. The report says, "multifocal invasive ductal carcinoma. No special type. Nuclear grade 3. Ranging in size from 0.1 cm to 0.3 cm in greatest linear extent." He said the IDC was stage 1 and that I made the right decision to have a mastectomy but now I need to start thinking about Tamoxifen to protect my other breast. I asked if Tamoxifen was an option or necessity at this point, he said he couldn't tell me and suggested that I discuss this further with an oncologist.
The path. report also states:
The DCIS was extensive and multicentric. The primary tumor measured up to 5 cm in greatest dimension.
Margins are uninvolved by invasive carcinoma and DCIS.
Although I knew this was a possibility going in, I wasn't expecting to hear that IDC was present.
Comments
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Hi Chocomousse - It is quite common that we learn a lot that we did not know once the final pathology report comes in. I believe this is especially true after a mastectomy when more breast tissue is examined beyond what was examined by the initial biopsy. It is a disturbing shock as we are struggling with coming to terms with the original diagnosis. Finding out there is more and that it is more extensive than originally reported is as upsetting or more upsetting than the original diagnosis. After my mastectomy I learned I also had LCIS in both breasts and DCIS in one. Not fun.
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You're right. Both the news and my reaction surprised me because I knew this was a possibility yet I started hyperventilating.
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Yes, it is a bit of a shock when you are told at first “just DCIS" and then hear the words invasive later. It doesn't sound like it will affect your prognosis or treatment all that much though, considering it was in small amounts and your nodes were negative.
I'm not sure why finding IDC would cause Tamoxifen to be recommended “to protect your remaining breast" if the DCIS didn't already cause that recommendation - breast cancer doesn't really spread from breast to breast. I could see them now saying it would be recommended against the slight risk of distant recurrence, or maybe even to protect any remaining tissue in the cancerous breast. I could be wrong, but both DCIS and IDC raise the risk of another breast cancer so any increased risk to the other breast should have already been there. Definitely something to discuss with the oncologist.
My mother had a mastectomy for Stage 1 with DCIS and chose not to take Tamoxifen or aromatase inhibitors after, but she was 75 at diagnosis and figured the risks from the drugs outweighed the risk of a new cancer over her remaining lifespan. I had a lumpectomy and am taking Tamoxifen but I was 45 at diagnosis, so the risk/benefit scenario was a bit different. What you'll need to know to make a decision is the risks from cancer (either recurrence or new) and the risks from the meds (may vary according to your health history).
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Hi Chocomousse:
I am very glad your nodes were clear, only two were removed, and the margins are uninvolved. That is really excellent news, and I am relishing it along with you:
I am sorry about the IDC found and changing from Stage 0 to Stage 1; this is the kind of upgrade that no one wants. I also started out with a DCIS diagnosis, and ended up with 5+ cms of DCIS (on each side), plus a 1.5 mm IDC, one micro-invasion (<1 millimeter), and a few additional foci "suspicious for micro-invasion" (all on the right).
0.3 cm is quite small. Size-wise, a 0.3 cm tumor is T1a: "Tumor >1 mm but ≤5 mm in greatest dimension." I read that the "mean" size of T1a tumors is 0.3 cm diameter.
FYI only, my pathology report stated the minimum size of the margins for the DCIS and for the IDC separately. It also reported the grade of the DCIS and IDC separately. Lastly, several tests were done to confirm the presence of invasive disease in my case, and there was not enough tissue remaining to test the HER2 status of the IDC. You can check your report to see if the 0.3 cm IDC cells were specifically tested for ER, PR and HER2 status. If not, you might ask if further tests will be performed, or if not, why not (just so as to understand).
I also met with a medical oncologist ("MO") to discuss tamoxifen, but my situation differs because of the bilateral MX.
BarredOwl
Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC; Bilateral mastectomy and SNB without reconstruction 9/2013
Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.
Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).
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Thanks guys. I know that even with the finding, I'm incredibly fortunate.
My regular doctor mentioned that I might have to consider hormone treatment too. I guess they're assuming that although nothing unusual was found in my left breast, there's a greater risk that cancer could develop there given that it developed in my right breast. The DCIS was something like 90% estrogen receptive and 15% progesterone receptive. I also have multiple, large uterine fibroids so I think I'm estrogen dominant.
Regarding my margins, I was summarizing above. The report specifically states:
Margins: Invasive Carcinoma: Margins are uninvolved by invasive carcinoma. Invasive tumor cells are present greater than 1 cm away from all margins.
DCIS: Margins are uninvolved by DCIS. DCIS is present 0.7 cm from the posterior (closest) margin.
As far as further testing, there is a section that says:
Histological Grade: m Nottingham Histologic Score: Unable to be performed due to minute tumor size. Nuclear grade: 3
Re the IDC, it says no special type. Does that mean the cells hadn't differentiated into a specific type yet?
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Just wanted to send you a hug chocomousse. No one who is told they have DCIS wants to hear that they have been upgraded to an invasive cancer from pathology. It is fairly common though as I have read that 20-30% of the time, pathology will show an invasive cancer. Hugs
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Hi Chocomousse:
Very nice margins, and even better ones with the IDC component.
There are various types of IDC. It sounds like you have ordinary IDC, not any of the subtypes listed here (tubular, medullary, mucinous, papillary, or cribriform):
http://www.breastcancer.org/symptoms/types
It is upsetting still to learn there is IDC present, no matter the size.
BarredOwl
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Thank you April.
Thanks Barred! Happy to hear that my margins are good.
BC.org women are a strong bunch. Thanks for being there for me.
My BS said my IDC was stage 1, not 1A. According to the info. in the link, a tumor needs to be 2 cm+ to qualify as 1A.
http://www.breastcancer.org/symptoms/diagnosis/staging -
Hi Chocomousse:
My reference to "T1a" actually referred only to the size component of the TNM system, and not the actual stage.
However, now that you have raised the question, please note that Stage IA is not a higher stage than Stage I. Stage I is subdivided into Stage IA and Stage IB, with Stage IA being the lowest kind of Stage I.
The BC.org page is confusing. This is a much better explanation of TNM breast cancer staging from the AJCC (cited previously by Beesie), with a chart:
https://cancerstaging.org/references-tools/quickre...
See the T1 info at top (center), and the little chart in the bottom half (center) of the first page.
Stage IA does indeed include a broad range of tumor sizes, but they are all less than or equal to 2 cms ( ≤ 20 mm ) in greatest dimension:
T1 Tumor ≤ 20 mm in greatest dimension, can include any one of:
T1mi Tumor ≤ 1 mm in greatest dimension
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
If a T1 tumor is node negative (N0), and M0, it would be "T1, N0, M0" which is listed in the chart as Stage IA. Again, Stage IA is the lowest possible kind of Stage I, which is good.
In addition, treatment guidelines often distinguish between sizes of Stage IA, with a first cut-off at 5 mm or less.
"Stage IA" would not be inconsistent with the staging information provided by your surgeon (Stage I). However, I am not an expert, and would defer to your surgeon or medical oncologist on the question of the exact stage under the TNM system.
BarredOwl
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Saw my Oncologist today, he said no further treatment is necessary. I'm done! He said I dodged all of the treatment bullets by having a UMX, IDC tumors less than 1 cm, negative margins and negative nodes.
He said that having cancer in one breast doesn't increase my chances of getting cancer in the other (I have no family history) so my chance of getting cancer in the other breast returns to that of the general female population in the US which is 12%. He said that Tamoxifen would decrease my chances by half to 6% but that small benefit isn't worth the side effects.
He ordered two blood tests which I haven't heard of, a CEA and a CA 27 29.
He's still going to run my case by the tumor board but said he was sure they'd agree with him.
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Hi Chocomousse:
With a large amount of ER+/PR+ DCIS, tamoxifen is a an option. The risk/benefit analysis is a very personal one, and patients will often come to a different conclusion under similar circumstances because of their different personal risk tolerances. For example, one person may want to reduce risk as much as possible no matter what, while another may feel the benefit achieved does not significantly outweigh the risks. Your oncologist seems to be saying that he thinks it would be reasonable to decline tamoxifen, although the decision is ultimately yours.
One thing you might consider asking is whether cells from the 0.3 mm focus of IDC were specifically tested for ER, PR and HER2 status. If not, you could ask if such testing is still possible. Even if such results might not ultimately affect the treatment recommendations or your decision, such information might influence your comfort level with it.
Above you mentioned that the report says, "multifocal invasive ductal carcinoma. No special type. Nuclear grade 3. Ranging in size from 0.1 cm to 0.3 cm in greatest linear extent." You may wish to inquire if the "multifocal" nature of the IDC could raise your risk in some way. I have no information on whether it would or would not affect your risk of a contralateral cancer. It might be nice to seek input on that question before the tumor board meets, to get the benefit of their pooled knowledge.
I have not done a lot of research on contralateral breast cancer risk in patients with a breast cancer diagnosis. If you are interested in learning more, these relatively recent articles seem to agree that risk increases with certain features (e.g., early age at first diagnosis). They also discuss the limitations of the various studies:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC432454...
http://www.breast-cancer-research.com/content/16/5...
http://jco.ascopubs.org/content/31/4/433.full
If you are interested in how others evaluated the tamoxifen question, please see Beesie's detailed analysis of her situation broken down by type of risk, and her personal risk tolerance considerations. She had 6+cm of multi-centric high grade DCIS with comedonecrosis, one 1mm microinvasion of IDC, clear nodes and UMX. I had to read it several times. Please note that I am not knowledgeable enough to know the strength of the research underpinning the considerations she cites, but it is an interesting post:
https://community.breastcancer.org/forum/68/topic/...
I did not seek a second opinion at this stage, but when I engage in second-guessing my treatment decisions, sometimes I wish I had done so. After you hear back from the tumor board, if you have hesitancy or doubts or would simply appreciate a second independent perspective, you could seek a second opinion if you wished.
BarredOwl
[Edited to add: The most serious risks of tamoxifen are uterine malignancies, stroke and pulmonary embolism.]
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Hi Barred,
Thank you for your input. I read Beesie's post and the others. It seems that a lot of factors are involved in a doctors decision to prescribe Tamox. I have several other health conditions not related to the BC which I'm sure he considered.
I'm ok with his decision.
I looked into the 2 tests he ordered and it seems that they're used to determine if there are cancer cells in my bloodstream or other organs. If they come back positive my treatment plan may change.
I'm not sure if he was refering to HER2 testing or an oncotype test but he said, as does my pathology report, that the IDC tumors were too minute to perform histological grade testing.
Regarding the 12% number, he said that women born in the US have a 12% risk of getting cancer. For males, it's 30%. I found that number corroborated here: http://www.breastcancer.org/symptoms/understand_bc... I guess opinions differ but he said that my risk of getting BC in my healthy breast was not higher as a result of having it in the other breast.
I read a post about Paraneoplastic Syndrome in the IDC forum and wonder if I've been experiencing this. Before the MX, I couldn't go 3 days without experiencing debilitating nausea, sometimes with retching. I was taking nausea meds about twice a week and took my last one about 2 days before the MX. It's been over 2 weeks since my surgery and I haven't had one episode since which is a record for me. I haven't gone this long without feeling sick in almost two years. I'm wondering now if this was related to my body launching an immune response to the DCIS or IDC. I also have/had (as of my last PET scan back in March) an enlarged Thymus, the Thymus gland produces T cells. I wonder if it'll return to normal now that the cancer is gone.
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Hi Chocomousse:
My oncologist didn't break things down for me quite as completely as Beesie's did! Beesie's post is a nice comparison for you (albeit smaller IDC, and differing lifetime risk), because she had a UMX. Beesie also noted that the more serious side effects may be of greater concern in people with certain pre-conditions or family history. The risks become more important in patients for whom the benefit is smaller.
My 1.5 mm IDC was not extensively tested either because of insufficient sample.
I am glad you are feeling so much better.
BarredOwl
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Dear Chocomousse:
I've been thinking more about the question above of possible HER2 testing of the 3 mm IDC.
In my case, despite its small size, the "grade" of my T1a 1.5 mm IDC was fully determined (Grade 2). I specifically asked about HER2 testing and was advised that there was inadequate tissue for HER2 testing in my case. Your case may be different from mine, since the IDC is twice as large at 3 mm.
Please note that a HER2 test is a completely different test from the determination of grade or from the Oncotype DX test.
http://www.breastcancer.org/symptoms/diagnosis/her...
HER2+ tumors are aggressive, so determining HER2 status is very important. HER2 status can affect prognosis and treatment recommendations.
Current guidelines from the National Comprehensive Cancer Center (NCCN) (version 3_2015) now recommend routine HER2 testing in cases such as yours (node negative tumors ≤ 0.5 cm). For example, the NCCN guidelines state:
"A determination of the HER2 status of the tumor is recommended for prognostic purposes for patients with node-negative breast cancer. More importantly, HER2 tumor status also provides predictive information used in selecting optimal adjuvant/neoadjuvant therapy . . ."
If a node negative IDC ≤0.5 cm is found to be HER2+, then the guidelines recommend considering this treatment:
"consider adjuvant chemotherapy with trastuzumab"
Note that the guidelines do not mandate such treatment ("consider"); however, patients with small T1a tumors do elect this option for themselves.
Many BC.org members with small T1a tumors (Tumor > 1 mm but ≤ 5 mm in greatest dimension) have had HER2 testing, including some with small 1.5 mm IDC. Some have elected treatment with trastuzumab-based therapies.
calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
In the interest of making as fully informed a decision about your treatment as possible, in light of all important prognostic factors, please consider asking specifically about whether HER2 testing can be done on the 3 mm IDC.
BarredOwl
[Edited to add: Please also check your pathology report for the word "pending", which may indicate that samples are under further evaluation or were sent out for testing, and that a supplemental report will be issued. In such case, please inquire as to the status of any supplemental report(s). Otherwise, please do not assume that there was inadequate tissue from mere non-reporting. The guidelines introducing routine HER2 testing are relatively new, and the lack of testing may represent a simple oversight or error by the pathology lab. It is best to ask the oncologist to contact the pathologist directly and specifically ask the pathologist if HER2 testing of the 3 mm focus can be done.]
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that's me. 1.5 mm of idc. It is her2 + by a lot...and I did chemo. Don't regret it for a second
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Hi Tresjoli2:
I was thinking of you.
Hi Chocomousse:
It is surprising that grade could not be determined for a 3 mm IDC. Grade is often determined for much smaller T1a tumors, and can even be determined for some micro-invasions.
Similarly, as discussed above, I now know that many people have had small T1a tumors successfully tested for HER2, like Tresjoli2 (1.5 mm). There is even a separate Forum for "Micro-invasive DCIS that is HER2 positive".
This makes me think there might be some error or misunderstanding about the 3 mm focus.
TShire described an issue that she had with the size of the tumor reported in her surgical pathology. It was much larger than predicted by imaging, and it changed her stage. She was puzzled and insisted that the surgeon follow up with the pathologist. Lucky she did, because there was indeed an error, as she said (emphasis added by me):
"And amazingly, there was a lab error on the original pathology- tumor was 1.3cm NOT 2.6, which puts me squarely into Stage 1A. I'm so glad I pestered my surgeon into re-checking with the lab. They accidentally measured the entire specimen, not just the tumor. I feel like they owe me flowers or something for the week of shock and despair when they originally staged me as [stage] 2a."
It is possible that the additional micro-invasions you have may not have been able to be characterized. In contrast, the inability to assess the grade or conduct a HER2 test on a 3 mm invasion is unexpected and is not consistent with the experiences of others on these boards. I do encourage you to investigate by requesting the doctor to ask the pathologist.
BarredOwl
[Edited to correct "stage" to "grade" in last paragraph].
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Hi Barred,
The nuclear grade of the IDC was 3. I don't have the path. report in front of me but I do recall a test that was pending. I'll report back later on that.
Got my blood test results. My CEA is 2.3, normal is below 5. My CA 27-29 is 33.3. The normal range for that is anything below 38 so I'm kind of high normal so although I know that these tests are inconclusive, it's still scary given that a lot of people have much lower scores. They are both normal tho so I am grateful for that.
Just read this: "This test is far from perfect, as some women with metastatic disease never have an elevation in the tumor markers. Benign conditions, such as ovarian cysts, fibroids, liver and kidney disorders, and benign breast problems can result in elevated CA 27-29 levels. It can take 1-3 months after starting a new treatment for results to begin to decrease, so we typically wait 2-3 months to recheck CA 27-29."
I have a tiny cyst on the outside of one ovary and multiple uterine fibroids so these may be the cause of the elevated score.
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Hi Chocomousse:
Thanks for the update. Glad the tumor marker results are both normal.
With diagnoses like yours or mine, some doctors do conduct these tests, whereas others (like mine) do not. Some doctors may do it to obtain a baseline for comparison purposes.
For your information only, this ASCO guideline (2012) on follow-up does not recommend these marker tests in an asymptomatic patient with no clinical findings, but acknowledges that more research is needed:
"The use of complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic ultrasounds, computed tomography scans, [18F]fluorodeoxyglucose–positron emission tomography scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination.
. . . Research is also needed to establish the clinical utility of breast cancer tumor marker testing for the follow-up and management of breast cancer and ultimately to develop clinical practice guidelines for tumor marker testing that are risk based and/or specific to tumor subtypes (eg, triple-negative breast cancer). More research is also needed to evaluate the effectiveness and quality of different models of survivorship care and to identify subsets of patients who would benefit from the various models of care."
This is the main page for breast cancer follow-up:
http://www.instituteforquality.org/breast-cancer-f...
This is the source document for the quote above (Full text link):
http://jco.ascopubs.org/content/31/7/961.full?sid=...
In contrast, the routine testing of tumor markers (eg, carcinoembryonic antigen (CEA), CA15-3, CA27.29)) is more commonly done in the metastatic disease setting, and is noted in this context in the NCCN (Version 3-2015) guidelines:
"Monitoring includes periodic assessment of varied combinations of symptoms, physical examination, routine laboratory tests, imaging studies, and blood biomarkers where appropriate. . . .Rising tumor markers (eg, CEA, CA15-3, CA27.29) are concerning for tumor progression, but may also be seen in the setting of responding disease."
BarredOwl
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Wishing you all the best, and it sounds like you are going to be just fine. I had a lumpectomy for DCIS, which revealed a microinvasion (less than 1mm). They were able to do HER2 testing on that little micro, so I'm a little confused about why not with you.
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Thanks. It doesn't bother me that he ordered them for whatever reason but it seems like the prudent thing to do and provides added confidence to make sure your patient isn't in the abnormal range for those markers when recommending no further treatment.
I looked at my path. report again and the only thing that says pending is in the lymph nodes section. Next to biomarkers, it says pending. Under that, there's a section that says: Does the tumor meet current institutional criteria for reflex OncotypeDX testing? The answer is no.
In the 'Invasive Breast Cancer Summary' section, next to Histologic Grade: m Nottingham Histologic Score, it says 'unable to be performed due to minute tumor size.' This is the only section where the tumor size is mentioned as an obstacle to testing.
I don't see where HER2/neu testing is mentioned in the report so there's nothing there that states that HER2/neu testing couldn't be performed due to the size of the tumor. I'll ask my BS if that test was done.
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I decided to ask my oncologist instead (his nurse actually) who just told me that the HER2 status was tested but he hasn't signed off on it yet and she'd call me as soon as she has it.
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Hi Chocomousse:
The info provided on tumor markers above was FYI only. Also, just noting that practice does differ in that area for others reading the thread who may be wondering what kinds of factors may play in to ordering such marker tests.
I am very glad to hear that the HER2 status of the 3 mm IDC was tested, since practice should not differ in that area under current guidelines. That is the most important information to have.
Regarding the grade, because there were some other much smaller micro-invasions, it seems quite possible that the statement "'unable to be performed due to minute tumor size" is referring to the much smaller micro-invasions. While 3 mm is a pretty small IDC, it is not so minute that grade should not normally be able to determined. You could ask the oncologist what he thinks about that.
If in fact grade is not available, I do not believe grade would change your treatment recommendation, but I am not a doctor, so that is a point you may wish to confirm with your oncologist when you speak with him next.
Hoping for negative results for you on the HER2!
BarredOwl
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Hi. The only grade the size affected was the histologic grade. The size didn't affect testing for the nuclear grade. Knowing the histologic grade won't make a difference in my treatment and I'm not particularly interested in knowing it so that omission doesn't bother me.
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Thank you for the well wishes Barred.
Uggg. I guess the good news had to come to an end. The addendum to my pathology report came in and states the following (I'm summarizing):
The invasive carcinoma was:
ER+, 90%. 1-2+. H score: 120
PR+, 70%. 1+. H score: 70
HER2 by IHC: Positive. Score 3+
Ki67: high proliferative index 87
Haven't spoken to my Oncologist yet.
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Dear Chocomousse:
I am sorry about that news. Like your "Uggg", my thought was "Arghh".
These findings alter your risk profile somewhat, so it is likely the oncologist will revisit with you the question of anti-endocrine therapy (e.g., tamoxifen or other options) and the option of chemo plus trastuzumab, with a risk/benefit analysis.
It is good that your institution has a tumor board. After your consultations, if you are unsure or just want more input, discussion or perspective, you can always decide to seek a second opinion regarding adjuvant therapies.
Other ladies with HER2+ t1a tumors can be found in this forum started by Dancetrancer. You may want to head over there and introduce yourself:
https://community.breastcancer.org/forum/80/topic/...
The below is for information only and in case you want to do some reading on your own at some point. Your oncologist may be aware of more recent studies.
For information only, the NCCN guidelines (Version 3_2015 is still current) provide for ductal carcinoma (IDC) node negative (N0) tumors ≤0.5 cm that are hormone receptor-positive and HER2 positive (emphasis added by me):
Consider adjuvant endocrine therapy ± adjuvant chemotherapy with trastuzumab
In the text, it states: "The NCCN Panel has included paclitaxel and trastuzumab as an option for patients with low-risk, HER2-positive, stage 1 tumors." This recommendation for smaller HER2+ tumors is based in part on the recent results of the Tolaney et al. or "Dana-Farber study" as it is referred to on these boards (Tolaney SM et al., Adjuvant paclitaxel and trastuzumab for node-negative, HER2-positive breast cancer, N Engl J Med 2015;372:134-141) here:
http://www.nejm.org/doi/full/10.1056/NEJMoa1406281...
You may find these 2014 articles of interest as well regarding HER2+ T1a node negative disease:
http://jco.ascopubs.org/content/32/20/2142.full
http://jco.ascopubs.org/content/32/20/2151.full
The full length articles are quite readable and contain interesting tables separately reporting T1a characteristics, treatments and outcomes, and breaking out various subgroups. ER positive subgroups may additionally benefit from anti-estrogen therapy. Please keep in mind that when subgroups are broken out, some numbers are very small and may not be statistically significant. There are links to related articles and some citing articles at the very bottom of the linked pages.
If you rely on these or other articles to aid in your decision-making, it is always best to discuss your thinking with your oncologist.
I am sending you positive thoughts.
BarredOwl
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