calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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Further to my message of earlier today, it should be understood that NCCN prepares Guidelines for Professionals. Patient guidelines are derived from and are a synopsis of a Professional version, subject to both editorial delay and editorial error. Therefore, at any point in time, a Patient guideline document may not accurately reflect the actual content of the corresponding current NCCN consensus guideline. For this reason, I use and cite to the Professional version.
As of today's date, the information provided on this question in the Patient guidelines reflects the content of an older, outdated version of the NCCN consensus guidelines that has since been replaced and superceded. The Patient guideline is not current, and is not in accord with the current guideline. Please do not rely on the Patient version.
I have sent NCCN a message to alert them.
BarredOwl
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I didn't post the link (I copied and pasted the link, it wasn't a screen shot. Don't know why the entire page didn't show, maybe because it was the mobile version) to challenge what you wrote, I posted it to provide the source for what I said previously. Interesting that 2014 NCCN treatment guidelines can be considered out of date just one year later.
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I wish that the new guidelines had been in effect in 2012. I had <5mm, neg. node her2+. Had BM. Then in 2014.... 50 lung mets. I have finished 7 taxotere and H&P and am in my 14 month of H&P
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Hi Chocomousse:
I am glad you realize the Patient version is out of date.
I worry that a person who read the text of your Sep 24, 2015 08:48PM post (currently unedited) as written would be mislead as to the content of the NCCN guidelines and what they recommend. As written, it is a declarative statement with no qualifier that it is outdated information.
I worry that a person who read the text of your post from earlier today 18 hours ago (edited 18 hours ago) and following the link would be led to outdated information. The text of that message gave no hint that the linked document is outdated.
BarredOwl
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Beatmon, that really stinks. I was in a similar situation a little later in 2012 (5 mm IDC) and was given the option of taxol/herceptin - although the study results hadn't come out yet my MO had heard good things. It was a hard decision to make, but I went ahead with the TH. Has the taxotere and H and P cleared up the lung mets?
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Beatmon, I am so sorry to hear you recurred with mets just 2 years after your diagnosis. It is not a common occurrence, for tumors our size, but, unfortunately, the risk is there. Hence, the reason for this thread, and the reason chemo for our size tumors is controversial. There are many here who did not do chemo and haven't recurred. It is such a crap shoot.
I see you got your Stage IV diagnosis just shortly after finishing your reconstruction. It must have been such a hard time for you, thinking you were done, only to find out you had recurred. Thank you for joining us and letting us know what your situation is. I hope your treatment is keeping the mets under control. Hugs!
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Ok BarredOwl and Dancetrancer...I have gone to the NCCN guidelines and NEJM and the beginning stats on this link
. I am pretty new to this...dx June and Aug of 2015...bilateral idc... triple positive in left...ER/PR+ HER2- in right. IDC tumors (DCIS in both) are <1cm. There is some confusion on the measure of the HER2+. So my MO is unsure if he should go with adj or not. The HER2+ tumor measured .6cm on the MRI and .4cm+ on the biopsy but there was no evidence in the mastectomy. So, he says I'm on the line. He doesn't want to overtreat or undertreat so he is seeking a second and third opinion. I am searching myself. Am I understanding correctly that NCCN and NEJM are good with no adj for tumors <.5cm but acknowledge ~77% 5 year nonrecurrance rate. And Dancetrancer your stats (no worries, I get that they are very "unscientific"
) are 13/42 had no treatment with 6 METS and 1 local recurrance = ~ 47% nonrecurrance without treatment and 29/42 had treatment and no recurrance = ~70% nonrecurrance rate with treatment? Can I just tell you...if i'm doing my numbers correctly...UGH! I am recovering from my double mastectomy with immediate recon (TEs)...5 weeks out. I REALLY want to skip adj therapy but I am 43 with 2 school-aged kiddos. I'd like to be done with this life interruption
. I have many friends and family with experiences they willingly share. I'd love your opinions. I really do not like the numbers that go with the no-treatment...but I equally do not like the side-effects of therapy. If anyone would like to sway me one way or another...I'm open. Of my friends with experience, those who have gone "alternative" are at METS, so I'm scared both ways. I don't want to be led by fear. I do find those who have gone before offer MUCH wisdom...so please feel free to share (maybe of the 6 with no treatment and no recurrance did they have mastectomies? how many of those with METS had double mastectomy?). Thanks in advance...PS I meet with breast cancer specialist Wednesday.0 -
Heisforme why don't you try to get into the ATEMPT trial. 75% are randomized to tdm1 which has very few side effects. The other 25% get the standard herceptin and taxol. Odds are in your favor
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Heis,
I had a 7mm tumor no nodes they couldn't get me into the Attempt trial at UCSF because I'd had bc once before 25 yrs ago... Anyway my docs there said the same thing about over/ under treating and I wound up doing 12 wks taxol/ herceptin. I finished mid April and now am doing herceptin alone. Doing the weekly taxol is a lot easier than dose dense and of course the herceptin has few side effects. If you can get into the trial that would be great . I cold capped and so did not lose my hair during treatment ... But if you don't do taxol and get the TDM1 arm that's not even an issue. Bottom line is it fun? Not really but it's very doable and I say this as someone who's done chemo before. Good luck on making your decision and the ATTEMPT trial is a great idea
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Hi Heisforme:
I'm on the road, so I don't have all my links or the guideline handy. But the last time I checked (Oct 16, 2015), the NCCN guidelines for professionals (Version 3_2015) 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 (category 2B)"
"Category 2B: Based upon lower-level evidence, there is NCCN consensus that the intervention is appropriate."
The category 2B" designation applies to "adjuvant chemotherapy with trastuzumab". The highest level of consensus is category 1, so category 2B reflects a lower level of consensus. (We're not rolling in data.)
In addition, the ± symbol reflects that chemo and trastuzumab may or may not be selected. Thus, patients will work with their doctors to decide what to do in their particular case. That means an informed decision has to be made in light of all the applicable factors. There will be a risk/benefit analysis. That is not exactly the same thing as saying that for any patient it is fine to forego adjuvant chemo and trastuzumab.
In the discussion of the NEJM paper, Tolaney et al. state: "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." Again, I think they are saying that an informed and personalized decision must be made.
I am glad you are seeking a second opinion. Will the second opinion include a review of imaging and the biopsy and surgical pathology also? It might be nice to get a second pathology review. (I wish I had done that.)
In any event, you may wish to ask about how much play there could be in the size determination(s) (what is the error range of the determinations). Is this less than or equal to 5 mm (T1a) or could it easily be greater than 5 mm but ≤ 10 mm in greatest dimension (T1b)? If it were really T1b, what do the guidelines say, and what would be their recommendation regarding chemo plus trastuzumab in that case?
They are probably focusing heavily on the HER2+ tumor, but I wonder if the HER2-negative tumor is large enough to separately warrant consideration of chemo? If so, an Oncotype DX test might be helpful to have for the HER2-negative one. What size is the HER2-negative one? For example, if the Oncotype test supported chemotherapy based on the HER2-negative one, that might make a decision clearer (favor treatment).
You may find these 2014 articles of interest as well regarding small HER2+ 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 size, 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. They mention that other studies had less favorable outcomes, as you already learned. There could be a variety of reasons for that, including the small size of the study groups.
If you rely on these or other articles (or anything said here) to aid in your decision-making, it is always best to discuss your thinking with your oncologist to be sure the reasoning and facts are sound
By the way, there is a more active bilateral thread than the one you posted at:
https://community.breastcancer.org/forum/109/topic...
I'll check in again early next week, when I have better access.
BarredOwl
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heisforme -
BarredOwl gave you great information to review. What if it is only 4 mm (the smallest possibility according to what you wrote)? What would you decide? The guidelines say to consider chemo and Herceptin - to make a decision based upon your individual factors. Factors that increase risk of recurrence are things like young age (under 50) and being ER/PR-. Discuss that with your onc. I would also get a 2nd or 3rd or more opinions until you feel more comfortable with your decision. I had I think 4 opinions, plus had a tumor board done on my case. Unfortunately the docs were split which didn't help me too much, but the time I put into discussing with each doc helped me come to my own decision about the risks of recurrence vs the risks of chemo/Herceptin.
Also note the Taxol X 12 regimen is now being done for small tumors, and it is much less toxic than the TCH I had or AC-TH.
I would also get a 2nd path analysis, or more. I had that done in my case and was really glad, as my IDC was missed on my first 3 paths. Eeeks! Always good to have more brains giving input.
I also cold capped and saved my hair. It helped me a lot to feel more in control of the side effects of chemo and have fewer losses to bear.
Please do not be swayed by the data I initially listed on my intro. It is SOOOOOOOO not research based. I think I need to take that stuff down as it appears it is scaring the heck out of newbies. So sorry! I was really paranoid during the time of my diagnosis when I wrote that!
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heisforme - you've gotten to that place most of us found ourselves in where no matter how much research you do, there is no one right answer and you have to decide anyway. It's a hard place to be for something so important. But it's good to remember that the reason they/we don't know the answer yet is that the differences in outcome are so small and the chances of disease free survival so good no matter which route you choose.
I'm a 4 mm person and went with the Atempt trial. Veterans Day will be my very last treatment and I am in the Taxol/Herceptin arm. It wasn't fun but as Suladog says, definitely doable.
Hoping you can come to peace with a decision soon!
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Hi Heiseforme:
Further to my message of Oct 30, I checked the NCCN.org web site and the NCCN Guideline posted is still Version 3_2015 (professional version). Further to my comments above, I checked what is provided for ductal carcinoma (IDC) that is node negative (N0), hormone receptor-positive, HER2 positive and 0.6–1.0 cm:
Adjuvant endocrine therapy ± adjuvant chemotherapy with trastuzumab
A footnote includes this caveat: "The prognosis of patients with . . . T1b tumors that are node negative is uncertain even when HER2 is amplified or over-expressed. 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."
Note that in contrast to the smaller T1a size tumors, adjuvant endocrine therapy is not phrased as "consider" but is outright recommended for T1b size tumors. The full text discussing adjuvant HER2-targeted therapy begins at page MS-36 (page 110 of the pdf).
It is frustrating not to have a definitive size and to have to consider alternate scenarios. After DanceTrancer's comment above regarding her pathology, please do consider obtaining a second opinion review of the pathology slides to ensure that as much solid information as is available can be gleaned from them.
By the way, I had 1.5 mm of IDC (plus some micro-invasion). A number of histological tests were done to determine the invasiveness of the 1.5 mm IDS, and there was not enough tissue remaining to determine HER2 status (so I didn't really decide).
I hope you have a productive meeting with the Oncologist on Wednesday and get a good sense of the risk/benefit analysis in your case. Let us know how you are doing.
BarredOwl
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Bilateral mastectomy and SNB without reconstruction 9/2013
Dx Right: Stage IA: 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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I also had 1.5mm of IDC and a very high FISH score with high grade DCIS. I did the chemo. It really wasn't that bad. I'd do it again. I wanted no stone unturned and was OK with potentially being over treated. For me, if I didnt, and the cancer ever came back, I wouldn't have been able to forgive myself. But it's such a personal decision. Good luck with whatever choice you make. I wish there was more evidence for gals like us.
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Wow! Thanks to all!!! To answer some questions/suggestions...yes, this second opinion is beginning with all my slides to do another pathology report. My HER2- tumors were the dcis (measured 1.2cm and 1.5cm) and idc measured "microscopic" so the docs (yes, there was a board at my center) are all focusing on the HER2+. These last few days I have been "getting used to" my te's and getting a bit more sleep. My anxiety is lower so I'm hoping that will help me keep my mind focused during the doc visit. I will ask about the atempt trial. I am fortunate to have new friends near who have taken the time to meet with me and encourage me as you all have. Chemo is not fun, but doable. I hear that. I will take a look at the articles and other board as well...as soon as I get the kiddos and hubby to bed. I will be back to let you know what the doc says and where we are in the decision.
I honestly thought that once I chose my team (docs) and plan of attack I would be on "the ride"...so this new news of a smaller than expected tumor raising MORE questions and decisions has been a bit unnerving. Thanks again for helping me get focused and informed. My need for some control is getting fullfilled
Ps if we decide chemist I'm very intrigued about the cold caps!0 -
Heisforme, if you end up doing weekly taxol + herceptin, the cold caps work very, very well with that regimen. I lost hardly any hair. Best wishes to you as you navigate through this decision
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Hello Ladies!! This is my first post, I have been reading for a couple of weeks.
I will be starting chemo the last week of Nov, or first of Dec. I havent had the official appt with my MO, Scheduled for Nov 12 unless I can move it up. I had a hard time deciding whether or not to do chemo. After 2 appts with MO, and then back to Surgeon ( Better communication, female), I have decided to go ahead with chemo. I would love to try cold capping and have applied for a grant thru CCAPS. ( my biggest fear is losing my hair)
I love this wonderful forum where we can all share our experiences, and look forward to making new friends thru this
Jodi
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Hi Jodi:
Glad you have reached a decision! Hope the grant comes through.
BarredOwl
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Welcome Jodi! So glad you have come to a decision, yay on the caps!
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Ok girls! Sorry for the delay...apparently life does not slow down even with cancer! HA! Well, the specialist who prescribed 1 year chemo plus targeted therapy decided no chemo. That's right. She recommends NO CHEMO!!! WHAT!?!?! We are still in shock. She said recent studies have come out that have caused many mo's to "pull the reigns a little" on going with chemo with the small tumors! She said the studies (out apparently the last couple months) have not shown enough difference in recurrance rates between the chemo vs non-chemo groups. Apparently both show a 90% ish chance of non-recurrance within the first 5 years. I (very honestly here) am a bit bummed. With my first diagnosis in June, I had a 99+% cure rate...yep, he used the word cure. So I was hoping to get to the 98% group. Aren't I just spoiled?!?! I have hit that stage of thinking, "I never want to do this again...am I doing everything now so I don't?" I've watched my grandmother die of ovarian cancer, my step-mom of lung cancer, and my dad struggle with colon cancer. I meet with my mo in town tomorrow. I expect him to dismiss me. Once the breasts are gone and there is no treatment (they are talking tamoxifin) how will they monitor? I plan on being fine and living confidently in the freedom of no cancer...but I don't want to be stupid. I want to be like my friend...63 and 20 years cancer free.
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Hi Heisforme:
I wonder what studies she is referring to, whether they are retrospective or prospective, the composition of the patient group(s) with respect to HER2 status and tumor sizes, and the treatments received. I note that Tolaney et al. (Dana Farber study) came out in January of 2015, which is outside of that time-frame. Perhaps you could ask the specialist to provide you with the citations (or even copies) for the studies that came out in the last few months that have altered her view, if you are interested in seeing them for yourself.
As you know, the NCCN guidelines were very recently revised in light of Tolaney et al. to include the option of chemotherapy plus trastuzumab for smaller HER2+ tumors. Yet she is citing a trend in the opposite direction. That would be one reason to ask to see the recent studies she is relying on. Moreover, few studies have included significant numbers of T1a and T1b patients, making some studies potentially less relevant than others to this sub-group.
I guess in general, it could go either way for something around 5 mm, which is why it is such a difficult decision. But if you are unsure or uncomfortable with the current recommendation in any way, or if you would just like additional input, discussion or confirmation in view of the turn-around, you may wish to consider seeking a further opinion from another medical oncologist. Many have sought multiple opinions regarding the question of adjuvant therapy.
BarredOwl
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I would love to see those studies and I agree with BarredOwl on a 2nd opinion
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Hi Heisforme:
There certainly could be recent relevant studies that I have missed.
But the only study I can think of in the last few months that has caused practitioners to think about "pulling the reigns a little" on going with chemo in early stage, node-negative, hormone receptor-positive disease is the TailorX trial of OncotypeDX. However, HER2-positive patients are not eligible for Oncotype DX and were not included in the TailorX trial: "The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2." So, I do not think the results of TailorX speak to the HER2-postive setting or the risk/benefit of chemotherapy plus trastuzumab in that setting. Again, in this setting, the recent trend has actually been to expand consideration of chemotherapy plus trastuzumab in smaller tumors.
BarredOwl
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Heisforme where are you being treated. It is hard to believe, but so many oncologists are not aware of the most current treatments esp for her2+.
It is my understanding that her2 trumps everything and oncologists at NCI
approved institutions treat it regardless of size often
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I also believe her2 trumps everything. Please seek another opinion if you are not satisfied. I'm also unaware of studies that your MO is referring to
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Hi:
Just popping in to say I checked the NCCN web site today, and a new version of the NCCN Guidelines for Breast Cancer (Professional Version, 1.2016) is available. Some of the summary charts in the front of the document have been revised. However, the accompanying text is still under revision (so the text may be out of date and/or not match the charts in certain respects).
There has been no change in chart BINV-5 regarding ductal carcinoma (IDC) that is node negative (N0), hormone receptor-positive and HER2 positive:
For tumors ≤ 0.5 cm or micro-invasive:
Consider adjuvant endocrine therapy pN0 ± adjuvant chemotherapy with trastuzumab (category 2B)
For tumors 0.6–1.0 cm:
Adjuvant endocrine therapy ± adjuvant chemotherapy with trastuzumab
BarredOwl
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I am totally confused by the story that was on the front page here about early stage HER2+ bc and high levels of immune cells....meaning that herceptin may not be needed and according to this article it could actually be bad?!!
the article is here: HER2+ article
I find this disturbing as this is the first I've ever heard of high levels of immune cells tumor infiltrating lymphocytes (whatever those are) I was treated at UCSF and this is the first I've heard of this immune cell deal. Anyone know anything about this. As far as I know this stuff was never even mentioned to me, I have two more herceptin treatments to go and now I'm wondering if this should have been checked.
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Suladog I saw that too. I think it is brand new research. And I got the impression too new to have clinical implications
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Hi:
I agree that it seems to be early correlative work. The association found is said to be in conflict with the result of an earlier study, so it may be incorrect. Also, from the commentary on BC.org:
"Still, the researchers who did the study said there may not have been enough women diagnosed with tumors with high levels of tumor-infiltrating lymphocytes in the study. Only 94 women were classified as having tumors with high levels of tumor-infiltrating lymphocytes and only eight of these women had a recurrence. So it's likely that the study couldn't detect a benefit from Herceptin in this group of women because the numbers were too small."
This type of "correlative" study requires clinical tissue samples for study, and they can correlate what is observed in the samples to individual outcomes such as recurrence-free survival. Even if the observations were correct and meaningful, it would probably have a ways to go (studies to confirm and extend findings, validation, diagnostic regulatory approval) before being used in the clinic.
There is a large body of literature about tumor infiltrating lymphocytes (TILs) in solid tumors, including breast cancer. Here is a recent article:
http://annonc.oxfordjournals.org/content/26/2/259....
BarredOwl
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Further to Suladog's question of yesterday and replies above, the original JAMA Oncology abstract featured by BC.org is here:
http://oncology.jamanetwork.com/article.aspx?artic...
This study was also presented as an abstract at SABCS in December 2014:
http://www.abstracts2view.com/sabcs14/view.php?nu=...
At that time, Onclive and MedScape published summaries of the study with some facts (and additional speculation):
OncLive: http://www.onclive.com/conference-coverage/SABCS-2...
MedScape: http://www.medscape.com/viewarticle/836326
Google this title to access w/o reg: Breast Cancer With High TIL Levels: Skip the Trastuzumab?
OncLive quotes Dr. Perez, lead author of the study:
"We need to do additional studies to corroborate our findings. I would not change the standard of care today," Perez said.
Per MedScape, another researcher characterizes the work as "hypothesis-generating." MedScape also notes that only 10% of the patients had high STILs as defined.
As for the comparison across treatment arms A and C of RFS in those with high STILs treated with chemotherapy alone (90.9%) versus those with high STILs treated with chemotherapy plus trastuzumab (80.0%), per OncLive, the difference was not statistically significant:
"As a separate component of their research, Perez et al also compared the treatment arms head-to-head by S-TIL status. Among patients with high S-TIL levels, there was a nonsignificant trend toward improved RFS in patients receiving chemotherapy alone versus combination therapy with trastuzumab (P = .22)."
In contrast, for the vast majority of patients, the addition of trastuzumab was beneficial and statistically significant.
"In patients with low S-TIL levels, there was a significant RFS benefit for patients receiving standard of care with trastuzumab versus chemotherapy alone (P <.0001)."
Per MedScape, the base study included a range of tumor sizes and stages:
"The pivotal, three-arm N9831 trial demonstrated improved clinical outcomes when adding trastuzumab sequentially or concurrently to chemotherapy in women with stage I-III HER2-positive breast cancer (J Clin Oncol. 2011;29: 4491 -4497)."
BarredOwl
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