calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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Hi JoniB I'm sorry it came back but happy you caught it. I'm doing herceptin only my first treatment was 3/24/17 and I will be taking hormone pills too. I will see my MO in April and he will be starting me on tamoxifen but I see alot of people using Arimidex so I'm wondering if it better? My MO wanted to let me do the herceptin first to make sure I don't have any side effects and if I do he can tell want meds is causing it. When did you start your Herceptin and have you had any side effects? Thank you JoniB
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Hi Robin1234,
I have been on Herceptin jus short of a year. My final treatment is next week! I haven't had any problems with Herceptin except for the runny nose that is often reported. I didn't have a port so some nurses have really bruised me trying to find my vein while others have no difficulty at all. Other than the time commitment it's been a fairly easy treatment and I feel so fortunate to be given this drug.
As for Arimidex versus Tamoxifen, Arimidex is used for menopausal women. So if you are not yet in menopause, this would not be the drug for you.
I wish you all the best as you begin your treatment. Keep in touch and feel free to ask any questions you may have.
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JoniB - congratulations on the slide in to the finish line. That is fantastic
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Thank you joyandpiece .. looking forward to using my vacation days for a vacation rather than treatment!!
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JoniB congratulations you're lest herceptin treatment and I hope you get to go on a great much deserved vacation. Thank you for letting me know what the difference between the two Meds. Wish you all the best and please keep in touch.
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I am WAY past menopause but was prescribed Tamoxifen due to my history of osteopenia/porosis.
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i was also diagnosed with severe widespread osteopenia and i'm only 34. but i'm still on AI and lupron. we are thinking about IV bisphosphonates but because i want to try to have another child in a year or year and half, they are very hesitant
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The results from the APT Trial (ClinicalTrials.gov number, NCT005424510), which influenced treatment guidelines for this group, have been discussed above. Here again are the links to the 2015 publication:
>>Tolaney (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 publication, "The median follow-up time was 4.0 years. . . "
Seven-year follow-up data was recently released at ASCO 2017:
>>Tolaney (ASCO 2017), Abstract No. 511, "Seven-year (yr) follow-up of adjuvant paclitaxel (T) and trastuzumab (H) (APT trial) for node-negative, HER2-positive breast cancer (BC)"
>>http://abstracts.asco.org/199/AbstView_199_191222.html
In this abstract, "With a median follow-up of 6.5 yrs . . ."
Results from abstracts may be preliminary in nature. Those with pending treatment decisions should be certain to discuss any outside information with their medical oncologist, to ensure accurate understanding and applicability to their particular situation.
BarredOwl
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Barredowl thanks for posting this. This is great news for us who went with the TH regimen.
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I had 13 (!) tumors (or to be more precise per the path report: "multiple foci of invasive carcinoma"), ranging from a few isolated cells less than 1mm to the largest at 2mm. None of that showed up on the biopsy, by the way. Only after lumpectomy path did we find out that I had any IDC at all: original screening MRI and then follow-up diagnostic mammo & ultrasound only saw 2.3cm DCIS (all the IDC was within or very close to the DCIS from what I recall, good margins, no lymph involvement or LVI). Anyway, after the lump path my BS said that the multifocality meant that she would now recommend a mastectomy (before, based on the size/location of DCIS, she said I was a good candidate for either mast or lump). When I met the MO after mastectomy, she was more concerned about the multifocality than the ER-/PR-/HER2+ status. She said it indicated a more aggressive cancer (can't say I disagree!). So long story short I'm doing Taxol/Herceptin. It's so frustrating to not "fit" into any diagnosis that I can easily type into a cancer calculator or anything like that. I know it's good for treatment that we are able to dive in so deeply into subtypes and finding extremely small tumors, but it takes away the ability to take those general statistics ("5 year survival rate for Stage 1 is close to 100%!") seriously or deceive myself into thinking positively, even if we know now that the reality was always more complicated. I was going to post this in the multifocal thread but I realized I would be posting the exact same thing and also I didn't want to "invade" the Stage III thread.
edited to add: my MO also talked about putting me on Perjeta, pending the details of the APHINITY trial results presented at ASCO.
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I'm surprised to read that some have received Herceptin without a chemo drug prior. I've seen on quite a few different threads where ladies have asked for it without chemo but having trouble convincing MO to do it. And to get Insurance to pay. Hopefully it will be a new protocol that is successful in knocking out Her2 positive cancer
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Beatmom, I was very surprised when I was offered Herceptin without chemo and my insurance company didn't question it either. I'm keeping my fingers crossed.
8 years ago when I was diagnosed for the first time no one would give me Herceptin alone and they didn't think I should have chemo either.
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Hi
I live in South Africa. in May 2017 I was diagnosed with DCIS L breast. Because of an awful family history I elected genetic testing and was found to be BRAC 2 positive. I opted ( easy decision) for a BM with BSO. Results were= sentinel node neg , clear margins, but smuggled away in my L breast was a previously undetectable ) 6 mm IDC ER-PR-HER2 pos. I had immediate reconstruction and am delighted with the early not yet completed results. My ONC has recommended Taxol x 12 weeks with Herceptin 3 weekly for a year. I have had my first round of chemo and I have not yet had any side effects. I receive the Herceptin subcutaneously into my thigh. It takes 5 mins to inject, stings a bit but otherwise no problems. I am so grateful for an early diagnosis and a good prognosis
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Dear Aquarian, Welcome to the BCO community. We are so glad that you reached out and shared your story here with out members. Please feel free to PM us if you need any help with navigating your way around the boards. We hope you will stay connected. The Mods
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Welcome Aquarian! That is so interesting that you have the subQ injection of Herceptin. I had heard a tiny bit about it when I was in active treatment, but I don't recall anyone having it done here in the US. I wonder if they are doing it here anywhere yet. Wishing you all the best!
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Thanks. SubQ Herceptin is relatively new here but its gaining ground fast.Its been well established for years in Europe and other centres. Im also trying out the cold caps-will post my results
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Awesome! I did cold caps and saved my hair on TCH. Good luck!
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Aquarian I had a similar diagnoses in May 2016 and found out I was brca2 also. I just finished my last herceptin two weeks ago and I'm feeling positive. Good luck with your treatment.
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Hello, thank you very much for the wealth of information and to dancertrancer for starting this topic. My breast cancer size isn't in this topic range but I wanted to write in as I will be receiving my second medical oncology opinion tomorrow.
8/25/17 bilateral mastectomy with sentinel node biopsy, I was 46 at mastectomy and am now 47 years old
pathology report from the mastectomy -
left breast: 7.1cm DCIS with microinvasion 0.7mm - grade 3, comedo necrosis, hormone receptors negative, HER2+
right breast: 1.4cm DCIS, grade 3, comedo necrosis, ER essentially negative and PR negative
UCLA oncologist recommended Taxol/Herceptin 3 months and then Herceptin for 9 more months for "extra insurance" even for the extra tiny invasion. Tomorrow I will be seeing an oncologist at City of Hope and then an oncologist at USC for a 3rd opinion the following week. My guess is that both of these oncologists will recommend Taxol/Herceptin. UCLA oncologist also recommended starting Taxol/Herceptin at 6 weeks point of the mastectomy which is about now but that the treatment can start within 3 months of the surgery.
While I'm nervous about the potential side effects of Taxol/Herceptin (not the hair loss, everything else is worrisome), what keeps coming back to my mind as faced by many people who wrote in on this topic is that should the cancer return as metastasis, I don't want to regret that I didn't do all that I can to counter the risk at the time. Also it looks like patients with initial pure DCIS who had large, palpable, high grade, comedo necrosis, negative hormone receptors, HER2+, young(er) age, perimenopausal (I seem to be somewhere between pre and peri - even though missing the period may be more due to stress) are the ones more likely to develop invasive cancer in the future and unfortunately that describes me rather well.
So to some degree, I'm looking at the microinvasion and HER2+ positive status as a blessing in disguise because now chemo/target treatment is an option. If I had just pure DCIS, I assume most oncologists would not provide further treatment.
In the back of my mind, what I'm hoping for from City of Hope and USC is that there is even an "easier" Taxol/Herceptin regiment such as half the dose or half the Taxol time...but I imagine this is just wishful thinking!
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Heartdesire, I had a similar diagnosis of high grade dcis in both breasts but a 6 mm invasive cancer that was her2. I was 42 years old. I had taxtotere/perjeta and a full year of Herceptin and it was all very doable. The worst part was losing my hair but it came back fast and super thick! I am a year and a few months out and I feel great. I still think about bc everyday but I am not consumed like I was by it. Good luck!!!!
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Hi HeartDesiresLife!
Thank you and welcome to the thread! I have not been here in a long time - that's a good thing! Those of us with tiny HER2+ tumors have a great prognosis overall.
I'm so glad you are getting several 2nd opinions. I found it extremely helpful. Keep us posted on what they say and what you decide!
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Thank you very much Cwhitney and dancetrancer - I think the 3rd opinion at USC may be the tie breaker. City of Hope's oncologist who is a HER2 and TN specialist said no further treatment. He said he is a member of National Cancer Board and asked for input from his fellow members and he said thus far 5 replied and they all said they would not treat something less than 1mm. Of course I'm relieved that I don't have to face Taxol/Herceptin but also apprehensive about not having the "extra insurance". The justification for not having further treatment is that chemo is not going to be effective against DCIS and likelihood of metastasis from 0.7mm (that UCLA pathology even found such a small microinvasion) is minimal and side effects of chemo/target therapy would be the higher risk. What was really scary was that the oncologist said that I don't need any scanning or labwork and that self exam and Dr's exam should be all I would need for the future.
It would be very ironic if USC's oncologist states that it can go either way - which is probably a reasonable opinion. But I will put on hold shopping for wigs for this week and wait to see what USC's opinion is.
There seems to be a strong element of chance/luck in breast cancer and for me, much depends on how accurate UCLA pathology is. I will have to look into getting another set of eyes on the pathology slides.
Just when I was getting myself psyched for Taxol/Herceptin...but there has been that tiny voice that I should trust my body to heal itself. Then again there have been loud rantings fearing that I was going to drop dead soon.
So I really hope USC will be the key!!!
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Heartdesireslife,
If you doctors don't want to treat you with Taxol because the risk of adverse effects is greater than the benefit, would they consider giving you H and P without chemo? Do you know what your KI 67 score was?
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Dear Stephincanada,
UCLA oncologist didn't mention Perjecta. So I didn't know what Perjecta was. It was only after reading Cwhitney's post and others' posts here that I realized some patients receive Perjecta. I didn't ask about receiving just Herceptin with or without Perjecta because it didn't occur to me to ask since the City of Hope's oncologist was rather certain in his recommendation that no further treatment was needed. I mean he even said no labwork or scans and just self checks at least monthly, about 2 weeks after your period begins and Dr's examination. But I will present the question to the USC oncologist, even if she advises no further treatment. LIve and learn...
My Ki67 score was 10% but I don't believe this had much bearing on City of Hope's recommendation. For him, it was all about the size - in contrast to what I have read in these posts that it is not about the size, it is about the HER2+ status. I believe at least 50% of DCIS is found to be HER2+ and because the microinvasion was so small, it couldn't be said definitively that it was the microinvasion which was HER2+ or the DCIS. During the hormone receptor testing, I believe the sample just disappeared according to the pathologist.
Odds/probability and as many wrote, it will largely depend on my level of comfort and essentially which provider I trust more. Between UCLA's oncologist and City of Hope's oncologist, my husband and I felt more confident towards City of Hope's oncologist. With both oncologists, we didn't request the oncologist to see. Even though with City of Hope, I believe the nurse scheduling the appointment did look over my records and saw that as I was HER2+, she matched me up with their HER2 specialist.
So I'm really hopeful that the USC oncologist will shed more light. USC's oncologist, we did request and that is why it took some time to get an appointment as the oncologist reviews the records and once an okay is given, then an appointment is made.
Also I was told by the breast surgeon that I wouldn't need radiation even though there was a close margin on the left side to the chest wall because it was DCIS. I will be checking with the radiation oncologist later to see if this opinion is shared. I should have done this few weeks ago but I guess I was afraid I would get the news that the radiation oncologist recommends radiation. But actually if that was the case, I think the radiation office would have called. But I will be checking to make sure soon.
Breast cancer seems to be a full time job.
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Yes, indeed, it is a full time job! Argh!
As of my last reading (I haven't looked at the latest recommendations), chemo/Herceptin is not recommended for HER2+ tumors < 1 mm. So - yes - you look at the HER2+ status, but you do also look at the size of the tumor, your age, etc.
Regarding radiation - I had multiple close margins after BMX - the close margins were for the DCIS component. One surgeon said no. Another said you need to see rad onc. Rad onc said I definitely needed rads. 2nd rad onc said I needed rads. I think it really depends on how tiny your margins are. I believe mine were < 1 mm. So do check on this!
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BTW followup after BMX typically does not involve scans or bloodwork. You only get scans if an issue is suspected.
I did, however, get breast MRI's due to my mutliple close margins. However, that is very much NOT the norm. Typically it is just a physical exam.
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Re: "As of my last reading (I haven't looked at the latest recommendations), chemo/Herceptin is not recommended for HER2+ tumors < 1 mm."
The above is not entirely accurate. For ductal, lobular, metaplastic or mixed invasive cancer, that is hormone receptor-negative (ER- PR-), HER2-positive, and node negative ("pN0"), the current version (as well as previous versions) of the NCCN guidelines for breast cancer (Version 2.2017) provide for consideration of chemotherapy plus trastuzumab for those with "Tumor ≤0.5 cm including microinvasive" (i..e., T1mi or T1a):
====> "Consider adjuvant chemotherapy [aa,gg] with trastuzumab [bb,cc] (category 2B)"
Thus, in such patients, treatment plans that either include or do not include chemotherapy plus trastuzumab would be formally within current treatment guidelines.
There are footnotes (aa, gg, bb, cc) that accompany this statement, which I would be inclined to discuss with a Medical Oncologist to ensure accurate understanding of the general guidance provided.
Medical advice entails a personalized risk/benefit analysis. Understanding of recurrence risk profile and the potential benefit of treatment is made more challenging by the more limited clinical data addressing either distant (metastatic) recurrence risk and/or the potential benefit of treatment applicable to those with T1mi, T1a or T1b size tumors, as compared with the data available for larger (T1c or above) and/or node-positive tumors.
The NCCN guidelines for breast cancer can be obtained at no charge with free registration here:
Please note that the charts up front are current as of April, 2017. However, the Discussion section is under revision and has not yet been updated to conform with recent revisions. Therefore, the Discussion section may not be current in some respects.
The main treatment guidelines for adjuvant (post-surgical) systemic therapy for those with early stage invasive HER2-positive disease are located in (1) Chart BINV-5 (hormone receptor-positive, HER2-positive) or (2) Chart BINV-7 (hormone receptor-negative, HER2-positive)
Guidelines address the typical case, and there may be appropriate exceptions in the individual case. The guidelines are not a substitute for case-specific advice from a medical oncologist, but instead should be used to better inform discussions with your treatment team.
BarredOwl
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AJCC Staging Summary - Tumor size information on page 1, top, center:
T1 = Tumor ≤ 20 mm in greatest dimension
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
T2 Tumor > 20 mm but ≤ 50 mm in greatest dimension
T3 Tumor > 50 mm in greatest dimension
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Dear BarredOwl, I'm sorry you have to do so much educating but I'm extremely thankful for the information and I certainly hope you have your info saved somewhere very convenient to copy and paste!!!
Dear Dancetrancer, thank you always for your encouraging words and your willing to share your experiences - they are truly invaluable.
I feel better equipped with my list of "if and so" questions for USC now!
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I will let Barred Owl take over on current guidelines from here - she obviously is keeping up more than I am! I am way too busy to read and keep up with the current guidelines (and that's a GOOD thing!).
I had no idea that they now were including microinvasive HER2+ ER/PR- as possibly being appropriate for chemo/Herceptin.
Very surprised! Glad you have multiple 2nd opinions to help you decide!!!
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I learned a lot from this thread, so I am very grateful dancetrancer started it and continues to support so many here.
In some years, the guidelines were updated several times, so I got in the habit of checking the latest version on-line. I have been hoping for a new update for a while, along with an updated Discussion section, but no such luck lately. I encourage those with pending decisions to check the current version of the NCCN guidelines for breast cancer on-line, to review the adjuvant systemic therapy chart that is applicable to their particular situation, and to review the footnotes and request an explanation of the underlying studies re distant recurrence risk profile and the potential benefit of treatment from their Medical Oncologist.
When, as here, the guidelines include "consideration" of an option, it is possible that reasonable professionals may differ and a second or even a third opinion may be of value.
Technically, this thread focuses on T1a-size tumors (Tumor > 1 mm but ≤ 5 mm in greatest dimension), although a number of posters have T1b-size tumors (Tumor > 5 mm but ≤ 10 mm in greatest dimension) or even smaller T1mi tumors (Tumor ≤ 1 mm in greatest dimension). There is another thread for "DCIS plus HER2-positive microinvasion" here, but it is less active than this one.
HeartdesiresLife, I hope your next appointment goes well. Perhaps you can request consideration by a multidisciplinary Tumor Board there as well, given the issues with the HER2 assessment that you mentioned.
BarredOwl
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