calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Bravemamma, my understanding would be posterior margin would be chest wall, since posterior anatomically means towards the back of the body. I see you were a bilateral as well. I don't meet too many of us on here. Which is a good thing! I see you did TCH as well. Fun times.
Wendy that makes sense. I never researched node limits since I was negative. Thanks for the explanation!
Interesting how it seems all 3 of us who were small chested had close margins after MX. My suspicion is because there just isn't much of a fat layer between the breast tissue and the skin/chest wall in small breasts, especially if you have low body fat in general.
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Hi Bravemama34:
As always, please confirm it with your team, but I believe that "posterior" refers to the area near the chest muscle.
For example, in the 2016 ASCO guideline which is applicable to whole-breast radiation after breast conserving treatment (lumpectomy) for DCIS, it describes margin sizes as a consideration and describes them as:
" . . . which margin is close [i.e. anterior excised to skin or posterior excised to pectoral fascia v margins associated with residual breast tissue])"
I read this as meaning that the posterior margin is the one closest to the pectoralis (chest) muscle.
This is also the understanding I have from my surgeon. According to my pathology report, all margins were 2 mm or better, except in one DCIS focus at the posterior margin (1 mm). My notes reflect that the surgeon referred to this unique 1 mm posterior margin as being "by the chest".
BarredOwl
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my lymph node micromet was read as less than 1mm!!!i wonder why it was not isolated tumor cells. i wonder if there were more than one micromet to lymph node and the 'cumilitive' amount was more than 1mm. what do you think?
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BraveMama:
I think if your size is less than 0.2mm in lymph node and the total count is less than 200. then it is called isolated tumor cells.
Mine is 0.16mm. So it fit in that criteria.
Here is what I have in my PATH report:
Number of Lymph Nodes with Macrometastases (> 2 mm): Specify number: 0
Number of Lymph Nodes with Micrometastases (> 0.2 mm to 2 mm and / or > 200 cells): Specify number: 0
Number of Lymph Nodes with Isolated Tumor Cells (<= 0.2 mm and <= 200 cells): Specify number: 1
Size of Largest Tumor Deposit: Specify (mm): 0.16
Extranodal Extension: Not identified
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my mistake. mine says less than 0.1cm micromet not 0.1mm.0 -
dancetrance- im half way done with chemo. not fu. hair loss is probably the worse because you always look sick. but otherwise doable. cant wait for jan 9 which is last day of chemo.thank you Barredowl. it is more clear for me now.
i wonder how worried i need to be for close DCIS margins. but IDC margins were not close. and all we can do is radiation anyways.
this whole thing is so unfair at this age or any age really
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Yep.
Just gotta play the cards you are dealt in life. On a bright note - I'm 5 years+ out and feel fantastic - keep your eyes on the light at the end of the tunnel!
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Wendy, I had isolated tumor cells in my lymph node too. My BS was aggressive and removed 16 lymph nodes around the area of the tumor cells. I was surprised and grateful that I was still considered node negative. My tumor was small but was ready to travel so I was relieved when my oncologist offered me chemo with herceptin and perjeta. You are doing the right thing getting a second opinion. Believing in your treatments will help you get through this.
Dancetrancer, well said! Thanks for always giving us "newbies" hopeful advice.
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CWhitney,
May I ask how big is your tumor?
I just saw my MO today. He seems not worry about the ITC at all. He also not recommend chemo+herceptin even if my HER-2 comes back as negative. That is mainly because he thought my tumor is 2mm and it is ER 100% + with Ki67 8%. He thought the risk of taking those aggressive therapy is more than the tumor itself.
He also said, if HER-2 comes back as negative, there is no point to do oncotype DX for me too.. because the tissue is too small.
I actually did call the company to do the oncotype, they said it has to be minimum 2mm. So I am on the borderline again..
Next week I am going to ask second opinion from other MO/RO to finalize my treatment plan.
Wendy
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Wendy, my tumor was 6mm. Most of the studies recommend chemo and herceptin for anything over 5mm. My oncologist was more or less offering me chemo to "mop up" any stray cell that could have possibly traveled in my blood. Both my oncologist and BS were also not worried about the isolated tumor cells. Good luck with your second opinion tomorrow!
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After sent my specimen to another lab to get second try for the FISH test, I got my HER-2 result back as not amplified. A big relief for me!
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Actually, that is not my understanding of what either the scientific literature or clinical consensus guidelines from NCCN provide for T1b-sized tumors:
T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension
Again, as noted as recently as the previous page in this thread, the NCCN guidelines for breast cancer (Professional Version 2.2016) do not indicate that chemotherapy plus trastuzumab should be given in all HER2+ cases where the tumor is larger than 5 mm.
For example, if a person has IDC, that is node negative (N0), with a Tumor 0.6–1.0 cm, that is hormone receptor-positive, HER2-positive, then the NCCN guidelines provide (See pdf page 17, chart BINV-5):
"Adjuvant endocrine therapy or
Adjuvant chemotherapy [z,aa] with trastuzumab [x] followed by endocrine therapy"
Footnote z: "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."
As you can see it is also within the guideline for certain patients with "T1b" disease to receive endocrine therapy alone. The decision whether or not to add chemotherapy plus trastuzumab is made after a personalized risk /benefit analysis, in light of all applicable factors.
A recent 2016 ASCO guideline appears to be in accord with the NCCN position:
"Selection of Optimal Adjuvant Chemotherapy Regimens for Human Epidermal Growth Factor Receptor 2 (HER2) –Negative and Adjuvant Targeted Therapy for HER2-Positive Breast Cancers: An American Society of Clinical Oncology Guideline Adaptation of the Cancer Care Ontario Clinical Practice Guideline"
Denduluri (2016): http://ascopubs.org/doi/full/10.1200/JCO.2016.67.0182
(You can access a PDF version for free under the "PDF" tab.)
"Trastuzumab Plus Chemotherapy in Patients With HER2-Positive T1a-b N0 Disease
Trastuzumab therapy can be considered in small, node-negative tumors ([less than or equal to] 1 cm)."
See original for more discussion.
[EDIT: See ERRATA (correction) to Denduluri: http://ascopubs.org/doi/full/10.1200/JCO.2016.71.6175]
This is probably one of the more relevant and most recent clinical trials for those with HER2+ T1a and T1b size tumors (single-arm):
Tolaney (2015): http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion
PDF Version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281
They conclude: "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 recommend that patients consult the information in the guidelines applicable to their specific case, including relevant studies, and then confirm their understanding with an expert medical professional.
The NCCN guidelines for breast cancer are available with free registration here:
BarredOwl
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Hello: thank you so much for this thread. It helped in my decision to go ahead with treatment. My invasive portion measured 3mm with no node involvement. My doctor though recommending Taxol/Herceptin, let me decide. I had a lumpectomy and agreed to start treatment which was yesterday. Though my oncologist said I could not get the Oncotype test because I'm Her2+, my surgeon pushed for it and was approved. I got the scary results today that if I would have decided against treatment, I would have a 46% chance of recurrence. I guess my message if you are Her2+ and leaning towards no treatment, push to have an Oncotype test done. Good luck to you all in your journey.
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Finkpa - welcome. I tried to have an oncotype done on my tumor. First answer was, no, if it is HER2+ it is redundant - your results will come back as need to treat. Being a type A personality, I pushed further (not necessarily recommending that!), and got someone to agree to run the test - but my tissue sample was too small anyways.
I wonder if the oncotype would always show a high recurrence if you are HER2+, no matter what the size of the tumor? ???
In other news, I moved to another state recently, and had my first appt with a big NCI cancer center here (Moffitt) yesterday. The oncologist here was of the opinion that "you received a lot of treatment for a small tumor, I would say your prognosis is excellent". Reading between the lines - he feels I was overtreated. I do, too - b/c I did TCH. I don't personally feel Taxol + Herceptin would have been overtreatment for my case (maybe, but still undecided on that). But they wouldn't do Taxol back in 2011. It was either TCH or nothing. He also was ok with me deciding to stop Tamoxifen after 1.5 years (due to growing endometrial polyps like crazy and needing 3 d&c's). He said since I had a BMX and the tumor was small, I could feel comfortable going without it. Plus, he said since I am 5 years out, if something was going to recur, it likely would have by now (although I know being ER+ I could recur farther out, the highest risk for HER2+ is in the first 3 years).
Lastly, he recommended I be followed by their "survivorship" program once yearly, instead of him. If I have an issue, I can come back to see him, but as long as all is well, he doesn't feel I need to see an oncologist for monitoring any more. This was a great visit. "Excellent prognosis, you don't need me, off to survivorship" Wahoo!!!!!! Another huge step in my story. So grateful.
Wishing you all similar outcomes and strength to make it through whatever treatment path you choose.
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I am happy about you are doing great!
Now I am pushing my MO to order oncotype test with my 2mm tumor, he told me before that is too small, but I want to have another try for the test, just not want to miss any treatment that will benefit me.
But I just not sure if my MO will agree to do the test, plus how accurate the result is for tumor size like 2mm. Genomic Health confirmed that they can do test with tissue >=2mm though..
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Like I said, I am not pushing to do the test. I suspect it will provide redundant information, and in fact, may make one overestimate the "scary factor" of the IDC since I am not sure it even considers the size of the tumor. But, I could be wrong, as I'm not researching this stuff heavily any more. Discuss with your oncologist!
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Hi DanceTrancer:
Good news!
BarredOwl
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dancetrancer - that is great news!
I saw my MO the other day and she thought I made the right choice to not seek further treatment for my 2mm IDC. She let me decide.I appreciated the fact that we were able to discuss all the pros and cons FOR ME without being told what I had to do.
I say FOR ME because every person and every cancer is different. Good luck to everyone. It is a tough choice to make.
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Such great news, dancetrancer!
I am over 3 years out and going strong
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Congratulations Rosamond!!!!!
Yayyyyyyy!!!
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hello ladies,
I am so glad to see this thread. I am 33 and was just diagnosed with DCIS-MI, and opted for BMX. Path shows largest invasion of 3mm, her2 positive, node negative, ER+10%. My Surgeon and his tumor board says No chemo, one MO says either Taxol plus Herceptin or Tamoxifen, second MO says Taxol plus Herceptin due to the biology of tumor.
I need help making this decision. I am still looking to go see a third MO.
If there is anyone in my situation who received Taxol plus Herceptin, can you please share you experience and some of the side effects you had so that can help me get some idea?
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Dear life1, I just finished six cycles of Taxol with Herceptin. I was terrified of what chemo would be like but it was not as bad as I thought. The worst side effect was losing my hair, although I didn't lose all of it, and feeling tired. Keeping active helped with the fatigue though. By the fifth and sixth dose, my taste buds we're bothered but it only lasted a few days. I have heard that Taxol effects everyone differently but from what I gathered, it is "gentler" to most. Good luck with your decision!
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Hi Dearlife, and welcome to the board. I'm so glad you are getting multiple opinions. Only you can make the final decision, but getting input from multiple onc's really helps, IMO.
Hopefully you will hear from more members who did Taxol + H (thanks cwhitney!); there are several here who have done that regimen.
If you do decide to do chemo, and are concerned about the hair loss, you may wish to investigate cold caps to prevent hair loss.
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Hi Rosamond, I just sent you a private message if you can reply to that pls.
Thanks
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we are in similar situations Dearlife1. diagnosed 3 mo ago just turned 34 with a toddler. i am done with four c ycles of TCH. except hairloss i really have no other side effects. no fatigue. some taste bud chances but after all it's a poison. no mouth sores. no neuropathy. still have all my eyebrows and lashes. still work full time. i'm also on lupron shots have done 3 so far with absolutely no side effect but i hear it may come later. no hot flashes.so though chemo sucks, really really does, it's very doable.
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Bravemama34, thats good....gives me some relief. I still want to look into cold caps. Has nnyone tried hair wigs? I have heard most of them are not comfortable as they make our scall feel really warm.
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Wigs feel itchy.
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i had waist length hair before chemo. before i lose it, i custome made one exactly like my own hair (cost 4 grand however). i wear this wig ALL the time except when we turn off the light and go to bed. i dont notice it anymore. it's very very natural. no one can tell. i work with new people all day long and no one has given a strange look. it was not as comfortable in the bignning. but the more you wear, the more it adjusts to your head shape and trust me that you will forget about it. i think cold caps are also a good idea. i just know myself. i'm not as deligint as i need to be and may not have done a good job with all the steps required for cold caps. look into it though.0 -
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 idc 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. Im going for a 2nd opinion on February 27th to try to get help with this I'm so confused. I'm reaching out to all the sisters on here to see if you guys have any information to help me alone this unsure gray area process. Thank you
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as a triple positive, I wouldn't take any risks. I did taxol and herceptin, and I only had 1.5mm of IDC. But I was 40 with two small kids. I knew I would never forgive myself if it came back, and I hadn't done chemo. No regrets...
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