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Topic: < 5 mm HER2+ IDC...why NOT chemo???

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 27, 2012 10:57AM

dancetrancer wrote:

I've read thread after thread and all of the info, opinions are running together in my head.  I've only had since yesterday to absorb all of this (was up til 1 a.m reading).  I know this is a controversial topic, but I want to hear why you WOULDN'T recommend chemo for < 5 mm of IDC her2+ (mine is 3 mm).

I had my tests run at Emory (I was there for a 3rd opinion on radiation).  They found the IDC (3 other facilities missed it, including UAB) and tested it for Her2.  Transferred my results to UAB.  Found out I was HER2+ yesterday.

UAB told me yesterday afternoon, lets cancel your radiation, meet with onc to discuss chemo next week.  Go ahead and rip your rads stickers off.  So I did.

Today they call me and say, nope, we talked to the onc and they said chemo isn't warranted with your small cancer.  Come back in to get the marks drawn back on, b/c we want to start rads ASAP next week, you are already behind schedule.

So, I've got a call into Emory to see what their onc says.  WTF.  I'm so sick and tired of sleepless nights, changing opinions, thinking I'm going to die if I don't do chemo (OK, I know that's overreacting, but you all know how it goes) and convincing myself to do it, then I hear, nope, you don't need it.  I could do without this emotional rollercoaster, thank you very much.  Now I'm afraid to NOT have chemo and am paranoid about recurrence.

HELP talk me down off the ledge please!  (LOL, just kidding, but d*mn!) 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 12:14AM fluffqueen01 wrote:

Dancetrancer...before my her2 report came back, my BS said if it was negative, that I was in the gray area for chemo due to size (a smidge under 1cm and only a small part of that invasive,rest was lcis and dcis).

The positive her2 changed all that. I immediately needed herceptin. I interviewed 3 oncologists. All three said chemo with herceptin. I said why not just herceptin? They said that the herceptin studies were done with chemo, and there is not enough long term info on herceptin alone, so at the moment, they operate on the side of what they do know, and that is the two together work.

Concerning radiation...I am kind of surprised they encourage that. None of my docs recommended that. I insisted on meeting with a RO before Bmx, and even he said no, unless it was in my lymph
nodes. Im glad to have that in my back pocket for later in case it comes back.

The onc I settled on recommends herceptin for virtually everyone that is her2+, feeling that it is very sneaky and little cells like to hide. It is very expensive, however my insuance company aproved it immediately. I suspect that the the cost I was given anf the cost that actually transfers between the docs and insurance might be substantially different, otherwise it is about 70,000 I think.

I also take tamoxifen, although it annoys me as I was not that er/pr positive.

My chemo plan as a little different than many and I think beter tolerated. Very little nausea, tired a litle, some joint pain. I had taxol weekly for 12 weeks so it was never dose dense. If you go the chemo/H route, ask your docs. Two of the ones I interviewed recommended that. The other suggested 18 weeks of a trio that included adrymiacin. Ummm...no thanks.

Hope the other two know what they are talking about. Read all about side effects and preparation on this board. It is so helpful. Everyone reacts a little differently and as TLG mentioned, we now all have a masters (I think mine is a doctorate) in BC treatments. My doctor and his nurses were very thorough in telling me, but even so little thins slip their mind or they might happen to me and no one else. (for example, two kidney stones while I was on chemo that they dont know if they were trigged by chemo or just a freak coincidence).

Ask lots of questions here and of your docs. And find one you really like because you have to feel comfortable with them. Interview others if needed. In my case, I wanted someone that considered me part of the team and wasnt offended when I rolled in with two pages of questions and studies in my hands. I think he likes it know. Keeps him on his toes.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 28, 2012 04:05AM suzieq60 wrote:

I found this statment that you ladies with smaller HER2 bc should take note of:

"Trastuzumab significantly improves outcome for high risk, early stage, HER2-positive breast cancer patients. The landmark studies of trastuzumab in early stage breast cancer generally included patients with either larger sized tumors or lymph node involvement and they found that chemotherapy and trastuzumab dramatically reduced the risk of breast cancer recurrence by more than 50%. But, what we have not grasped is the risk of recurrence for smaller HER2 positive tumors. We now know that even women with HER2 positive tumors less than 1 cm face a substantial risk of recurrence, which approaches almost 25% at five years. Trastuzumab is an extremely effective targeted agent, and patients and physicians should discuss its use in women with these smaller tumors."

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 28, 2012 07:25AM dancetrancer wrote:


I am very fortunate regarding the work situation b/c I will be able to take time off if chemo is decided upon. So, I do not have that issue as a factor in my decision making process. 

LadyGrey, thanks for your input. I guess since you are > 5 mm and had a higher grade that did indeed make the decision a little clearer for you. I appreciate the honesty about the chemo side effects. I am the type of person who does NOT want things candy coated. I definitely want to know the good, the bad, and the ugly. If I feel it is warranted, the bad is not going to stop me. It may scare the heck out of me, but it won't stop me if I feel it is something that is needed to potentially save my life. That is the ultimate question, which apparently there aren't any easy answers to, in my case.

Teagal, is your tumor a ½ INCH? Or 5 mm? Big difference...1/2 inch = approx 1.3 cm tumor. I haven't researched the Herceptin alone question, but it is a good one. You said your husband posted only a 5% reduction in risk - can you post a link to the source please?

CTMom, do you wish you knew your Her2 status, or are you glad you don't, seeing the controversy that exists over treatment for < 5 mm? Just curious. I wonder if I would have been better off never knowing.

Fluffqueen, you say only a smidge of your tumor was invasive - was that smidge < 5 mm? Just curious, since you had 3 MO's say yes to chemo, so you had quite a level of agreement there. Regarding rads, the reason it is advised in my case is b/c the margin was < 1 mm and even though it was only DCIS in that region, the margin was anterior, so no barrier between it and the skin like there would be if the margin was close posteriorly (which I had, too, BTW) where the pec fascia provides a good barrier to DCIS spreading. Two NCI rated facilities concurred on this.  Regarding insurance - herceptin has to be pre-approved?  Thanks for the input on the Taxol being spread out over 12 weeks...I hadn't heard that before...not a bad idea at all to make it less intense. I will ask, thanks!!! Oh and LOL on rolling in with pages of questions and studies in hand. You pegged me, guilty as charged. My RO said she loves this...but I think she's getting real tired of me by now. I'm the "difficult" patient. Gosh, hate that reputation. Can't change my stripes though!

Susie, I read that exact quote in one of the many articles I am reading. However, I read one article that went on to say that for t1A (< 5 mm), the risks of chemo may not be worth the benefit. This is the only time I kinda wish my tumor was just a bit bigger, LOL. I would like an easy decision. Give me the d*mn EASY button! LOL Those don't exist in the bc world, though. At least it seems never for me.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 07:36AM voraciousreader wrote:

Dancetrancer...You mention that your husband looked at the benefits of chemotherapy and Herceptin and mentioned it would only reduce your risk by 5% of recurrence.  Please remember, when they mention the word "recurrence" that usually refers to metastisis.  Furthermore, when you read the literature...please note the difference between relative and absolute risk.  Relative risk, which doctors usually report in their studies, is quite misleading when compared to the absolute risk for YOU.  Statistics can be funny.  For example, according to studies, Tamoxifen, for ER+ tumors, reduces the RELATIVE risk of recurrence by almost 50%.  However, if your chances of recurrence, following surgery was, say 10%, then taking the Tamoxifen would, in ABSOLUTE terms, ONLY give you a 5% benefit.  Also worth noting is that each of the added therapies, might only give you a few percentages of ABSOLUTE benefit.  However, added together, they might give you double digit benefit.  Furthermore, as a tumor grows more aggressive, the amount of absolute benefit of a therapy usually increases.  So for those folks with a less aggressive tumor, the amount of absolute benefit each therapy gives is quite small.  The good news about aggressive tumors (grade3), is that they usually respond better to chemotherapy and following treatment, the ABSOLUTE benefit will approach that of a person who has a less aggressive SAME STAGE tumor.

There are some women who are more adverse to risk and will do more aggressive therapy and are happy to take the risk of ONLY getting single digit % absolute benefit.  While others, might be less inclined. 

Also important in your decision is YOUR general health and quality of life.  Some women go into a breast cancer with chronic illnesses that chemotherapy might exacerbate.  Chemotherapy might also cause long term issues as well.  So that's why it's important to visit several medical oncologists and go over YOUR personal history and decide what treatment is best for you. 

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 28, 2012 07:54AM dancetrancer wrote:

voracious, not MY husband - TEAGAL's husband.  I was asking her for the source. 

When I see the word recurrence, I look for the word local or distant with it to determine which type of recurrence risk they are talking about. I appreciate the statistical review and definitely will pay attention to those terms when evaluating studies and how the results pertain to me, specifically.  I also appreciate the reminder to focus on my particular situation, health, etc.  All good advise. Smile

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 08:08AM voraciousreader wrote:

Dancetrancer...When I replied...I was only on my first cup of coffee...

Also wanted to tell you that SAS replied to you over at the bonfire.  You might want to check back on that thread....SAS is a nurse......

Good luck!

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 28, 2012 08:29AM fluffqueen01 wrote:

Dancetrancer-mine was multifocal, so my cancer cells are mixed in with the lcis tissue as it was explained to me. The only reason all three oncs said yes to chemo is because they wouldnt give herceptin without "mixing a little chemo" to make it work better. Those were my oncs words.

It would not surprise me in a few years to see them pull chemo out of the herceptin mix for small tumors that normally wouldnt need it.

I am far less worried about a local recurrence and continually worried about mets due to her2. Bs said she suspected my risk for local recurrence was about 1%.

Although I was on the bad side of the stats on everything but lymph nodes, so I guess I should knock on wood.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 28, 2012 08:36AM dancetrancer wrote:

OK, so normally I go from study to study to study, trying to put it all together and then use my gut after that to make a decision.  Well, I just found an article on bc.org that seems to have summarized the research very eloquently in a nice neat little package that works great for my brain:

HER2 Boosts Recurrence Risk Even for Small Breast Cancers 

The take-home for me:

Both research groups recommended that trastuzumab be considered for these HER2-positive tumors despite their small size.

However, an accompanying editorial cautioned that this therapy should generally be limited to patients with tumors of at least 0.5 cm in diameter (stage T1b or higher), since smaller size is associated with lower risk -- even within the 1-cm-and-under tumor category.

 Now, I am very risk averse and would tend to be someone who wants to do whatever is needed to prevent a recurrence.  So, despite the above recommendation, I'm still nervous.  When you read the green column, it includes this:

Herceptin can cause side effects, some of them serious. It's also expensive compared to some other cancer medicines. Because of these concerns, some doctors suggest only using Herceptin to treat small, HER2-positive cancers with specific "personality" factors. One suggestion is to use Herceptin only if the cancer is 0.5 cm or larger. Another is to give Herceptin for a shorter time than is done with larger cancers: 6 months instead of 12 months, for example. 

I am going to ask my docs if perhaps I could be given this "lighter" dose of Herceptin.  I will talk to them about Herceptin only.  If they will only give Herceptin with chemo, I will ask if I could have the "lightest" chemo dose and type possible.  To me, this would be better for my peace of mind, versus going with no treatment at all to address the possible increased risk of metastasis associated with Her2+ cancers.  It seems like the perfect middle ground, rather than going with an "all or nothing" plan.  

So that is my plan.  We'll see what the MO's say...I will report back!   

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 08:47AM teagal wrote:

Dancetrancer ~ it's 1.3 cm. My hubby will look up his source and I'll post it later. It's just all so overwhelming. I go back and forth about what to do, then read here about the side effects these so very brave women are going through and I get very scared. 

Dx 12/21/2011, 1cm, Stage I, 0/3 nodes, ER+/PR-, HER2+
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Jan 28, 2012 08:55AM dancetrancer wrote:

voracious - thank you - I did see that!  I am looking into it...and LOL on the coffee - been there for sure!!!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 08:55AM SusanHG wrote:

Hello dancetrancer,

I figured I'd chime in here since I was going through all of your agony last year at this time.  I cannot speak for HER2+ (I am triple negative), but I also had a surprise within my DCIS: a 3 mm. tumor.  I found that there were two things that helped me:  getting as many opinions as possible and finding out the risk of distant recurrence.  I am fortunate to have Roswell Park Cancer Institute within a 10 minute drive, so after being referred there from my original MO who didn't have a clue what to recommend, I was able to get a consensus from all of the breast MOs on staff there, and it took them all of a few seconds to make the decision that chemo is not warranted in my case.  Although triple negative BC is an aggressive cancer, HER2+ is the most aggressive, so the recommendations may be more strict in your case.  The MO I eventually went with at the cancer institute gave me a 1-2% risk of distant recurrence which to me, was small enough to be able to live with.  My risk of death for other factors over the next 10 years is 4 % which is a good comparison (I was 42 at dx).  There is a website called Cancer Math where you can put all your details in and they will give you all the pertinint risk numbers.  It was very helpful to me and still, on days when I question my lack of chemo, I pull the numbers up to ease my worry.  One issue that my MO did discuss with me is that chemo isn't 100% effective (only about 50%) so my risk would only go down to .5-1%, thereby still giving me a risk and therefore a reason to worry regardless.  She recommended weight loss and fat intake reduction since, for trip negs, has been found to reduce recurrnece by 40% (not sure about HER2).

Hope this helps you in some way.  Really I feel your pain.  Try to relax and put your mind in a good place in order to make this tough decision.  You need to do what you feel comfortable with.

Hugs to you and take care,

Susan

Surgery 1/19/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 1/20/2011, IDC, <1cm, Stage IA, Grade 2, 0/6 nodes, ER-/PR-, HER2- Surgery 3/14/2011 Lumpectomy: Left Radiation Therapy 4/14/2011 Breast, Lymph nodes
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Jan 28, 2012 08:57AM - edited Jan 28, 2012 02:02PM by Sugar77

Hi, this thread caught my eye. My tumour wasn't Her2 postiive; rather, it was triple negative (ER-, PR- and HER2). However, my medical oncologist recommended chemo to me.  My tumour was 3.5 mm (.35cm) and grade 3. I was 45 when diagnosed. I did the chemo two years ago and it was certainly no fun but was doable. Looking back I'm glad I did it. Good luck with your treatment.

Surgery 9/24/2009 Lumpectomy: Right Dx 10/27/2009, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 12/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 12/5/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/26/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 28, 2012 01:31PM fluffqueen01 wrote:

Chemo and radiation is the only thing they have to fight triple negs. That is why it is the least favorable one.

With herceptin now in the mix for the her2 folks, it gives a leg up and according to all the oncs I interviewed it is considered a game changer.

For triple neg, if there is no recurrence in three years, outlook is very good.

For er+ folks, while the risk goes down substantially after 3 years, it remains a possibility.

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/12/2011 Herceptin (trastuzumab)
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Jan 28, 2012 01:56PM suzieq60 wrote:

teagal - My HER2 cancer was 11mm and I was told there was a 23% chance of distant recurrence and that having chemo/herceptin, it would be reduced by 50% - so a reduction in risk of 11 or 12%. I think your DH is misreading something as this amount of benefit is quite well published. 5% reduction is a figure I've seen quoted for non HER2 tumours.
2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 28, 2012 02:43PM Beesie wrote:

dancetrainer,

VR made one really important point that I want to reiterate.  You need to distinguish between studies and reports that quote recurrence numbers that include both local recurrence (in the breast area) and distant recurrence (i.e. mets) and those that talk specifically about distant recurrence.  A lot of the data that's been presented here hasn't been clear on that.  

Here's more information from one of the studies about HER2+ T1a/b tumors: "The 5-year recurrence-free survival was 77.1% and 93.7% in patients with HER2-positive and HER2-negative tumors, respectively. The 5-year distant recurrence-free survival was 86.4% and 97.2% in the 2 patient groups."  http://www.medscape.com/viewarticle/585328   

So this means that the total 5-year recurrence risk (Iocal and distant) was 22.9% while the distant recurrence risk was 13.6%.  The role of chemo and Herceptin is to address the 13.6% recurrence risk - by having these treatments, distant recurrence risk would be reduced by approx. 50% (or is it more?) to less than 7%.  

Because this issue has affected a couple of other women here who I've been corresponding with, I've been reading up on the studies done on small HER2+ tumors.  As the above quote indicates, there is no question that small HER2+ tumors are significantly more aggressive than non-HER2+ tumors.  There is no question that recent studies are suggesting that T1a/b HER2+ tumors do warrant chemo and Herceptin. There is no question that chemo and Herceptin will significantly reduce the risk of distant recurrence for those who have T1a/b HER2+ tumors. The missing piece of the puzzle is the question as to whether there is any significant difference in the risk of mets between T1a and T1b tumors - and if there is a difference, if it's enough to tip the scale when considering the benefits vs. risks of chemo and Herceptin.  This data doesn't seem to be available anywhere - I've been doing a lot of searching recently and have come up with nothing that answers this question. That's the grey area where you fall and that's why you are getting so many differing opinions.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 28, 2012 02:53PM Maja2213 wrote:

Dancetrancer -  Definitely go to another place to get answers.  You need as much info as possible. 

I was 4 mm.  Er+/pr+ (but only weakly so) and Her 2+.  Have they done a FISH test to confirm the Her2+?  That's usually first.  I did have the Oncotype test while waiting for the FISH results.  I had a lumpectomy in Nov 2010 followed by 12 weeks of taxol and herceptin.  Then 9 months of Herceptin every three weeks.  Radiation last May and June.  I finished the Herceptin the week after Christmas 2011 and just got my port out two days ago. 

Once I had the Her2+ diagnosis combined with being only 44, it was highly recommended by my MO that I have chemo.  What did change because of the small size was that he (and the 2nd consult at Mass General) recommended not doing TCH therapy.  They recommended just Taxol and Herceptin to try avoiding as much chemo damage to the body as possible. 

With surgery, chemo and Herceptin, radiation, and tamoxifen one MO said my chance of recurrence went down to 15%; the other said 10%.  Without Herceptin, my recurrence rates were supposed to be double. 

I just think another look would be great because you really are about my age and only 1 mm off in size.  

Dx 10/1/2010, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Jan 28, 2012 03:11PM dancetrancer wrote:

Thanks Beesie, that is exactly what I have summized...your review of the salient points is excellent, as always.  Thank you very much for your input.  

 When you look at that study, did you notice that they looked for what other factors were significantly associated with recurrence-free survival and distant recurrence-free survival?  Look at the table on page 5703 and also read the results section under MDACC on page 5702.  They say, regarding recurrence-free survival, that "HR status, age, menopausal status, and nuclear grade also were significantly associated with recurrence free survival."  Later on, they note that "In addition to HER2, only age was significantly associated with distant recurrence-free survival.  There were trends towards a significant association with HR, grade, and menopausal status."   

To me, this means if you have a small (< 1 cm) tumor that is Her2+, plus you have any of the other characteristics noted (ER neg, age 50 or under, pre-menopausal, and grade 3), your risk for recurrence goes up more than someone who is HER2+ and doesn't have these other factors.  There was no significant association noted/found based upon whether you were T1a or T1b (look at the table).  Sooooo...am I wrong in inferring that this means size doesn't matter???  If so, why the national guidelines saying no chemo/herceptin for < 5 mm?  Is it just because of the dearth of research on these very small tumors, so they won't make a firm recommendation?  That is my suspicion.  So, it is left up to the cancer patient to get lots of different opinions and then make their own decision.  Well, if I am correct in my thinking, perhaps I should use those other factors that are "significantly associated" to help me make my decision.  I have 2 of those 4 additional characteristics:  young age and premenopausal.  50%...hmmm...for some, that may make them say, nope, not doing chemo.  However for me, I feel it swaying me towards chemo.  Now if I can just find a doctor who agrees with me...?  Is my thinking flawed in some way? 

Not sure why I always fall in these lovely grey areas, LOL (I think you know my history with the radiation controversy).   

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 03:17PM - edited Jan 28, 2012 03:18PM by voraciousreader

Yes. It is the dearth of clinical trials including enough women with that small of tumors that prevent them from making recommendations. And the recommendations that they are making for those small of tumors are mostly based on retrospective analysis.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 28, 2012 03:20PM voraciousreader wrote:

That's also why I think IMHO when they do update the recommendations, there will be one big, long footnote explaining the level of evidence.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 28, 2012 03:23PM dancetrancer wrote:

Maja, yes, they did do a FISH test to confirm it.  No oncotype, was told it was too small for testing (I believe the Her2 trumps it).  I'm curious - what did your Onco come out as?

So no Cytoxan or Carboplatin?  That sounds like a GREAT option.  How did you do with just the Taxol and Herceptin combo in terms of side effects?  Did they say why 12 weeks of chemo, when some here have had only 4 weeks with the smaller tumors? 

I REALLY appreciate you chiming in, as yes, we are almost identical with our cancer stats: just 1 mm difference and you are Grade 3 vs. me being Grade 2.  

P.S.  So you did radiation in the middle of Herceptin, but after chemo?  Did they talk to you about why they did the chemo first/the order, etc.???  As you know, I'm under the gun with the RO wanting to start me on rads next week, since I'm 4 months post BMX with no other treatment thus far, and the MO she works with telling her no chemo.  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 03:25PM dancetrancer wrote:

Once again, I love this site.  I am learning SO much from all of you - thank you! 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 03:34PM - edited Jan 28, 2012 03:35PM by Beesie

dancetrainer,

The question about there being no signficant difference in the T1a and T1b results came up a few days ago in the other thread on this topic.  Here's a copy and paste of what I wrote there:

.     *************************************************************************************************     .

Saying that there was "no significant difference" means only that there was no difference that was certain at a 95% level. So maybe there really was no difference at all, or maybe there was a difference but it was only significant at the 80% level (just as an example).

Looking at the numbers quoted, part of the issue may be sample size. It's mentioned that there were 965 patients, of whom 10% were HER2+ - let's say that's 96 women. Of those, 2/3s had T1a tumors and 1/3 has T1b tumors. So that's roughly 63 patients with T1a tumors and 33 patients with T1b tumors.

Of the 96 women who were HER2+, 77% were recurrence-free and 86% were distant recurrence-free over 5 years. Personally I don't think that the recurrence-free numbers are relevant to this discussion because that includes local recurrence. Tumor size may be a bit of a factor in local recurrence but other factors such as margin size are much more critical. So it's only the 14% who had a distant recurrence - approx. 13 women out of the 96 - that's relevant to the question as to whether tumor size makes a difference or not. So it's all a question of how that small group of 13 women was split between the T1a and T1b tumors.

I pulled up a statistical significance calculator, and discovered that with the sample size split the way it is between T1a and T1b tumors, you need some pretty extreme results in order to reach the 95% statistical significance level. For example, if only 6 of the 63 T1a women had a distant recurrence (9.5%) while 7 of the 33 T1b women had a distant recurrence (21.2%), the results would only be 89% significant and therefore the conclusion would be that there was no significant difference in the risk of distant recurrence in patients with Stage TIb vs Stage TIa disease. We only reach the 95% statistical significance level when no more than 5 of the T1a women (7.9%) and no fewer than 8 of the T1b women (24.2%) have a distant recurrence. So to me this suggests that the statement that there was no statistically significant difference between the T1a and T1b results really holds no meaning, given the small sample size in this study.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jan 28, 2012 04:01PM - edited Jan 28, 2012 04:03PM by AlaskaAngel

dancetrancer,

Part of what they also haven't defined well in regard to premenopausal importance is what the total effect on the menopausal status actually is for a particular woman with chemotherapy and with different chemotherapy regimens. Hormonal measurement doesn't tell the entire story, nor does cessation of periods, although it is better than nothing to go by. Often younger women will go through chemotherapy and cessation of their periods, only to have their periods resume later on again.

In my situation at age 51 I was premenopausal at dx. After CAFx6 (which is documented as being equivalent to ovarian ablation plus tamoxfen), I was still somewhere in the range of not being totally postmenopausal after just the treatment with chemotherapy. But after just 2 weeks of tamoxifen following CAFx6, I had vaginal pain and dryness, lack of libido, etc. I then used the Estring for several years and it helped somewhat. But I still might not have become fully menopausal even then, because at 56 years of age (5 years after chemotherapy and 1 3/4 yrs of tamoxifen), the Estring stopped being helpful and libido disappeared entirely and vaginal dryness was much worse. There is no clear answer to when in that sequence I would have been postmenopausal and presumably, more protected from recurrence.

With chemo you get repeated cell death (although probably not stem cell death), plus some indefinite effects upon menopausal status that depend on the woman's individual make-up and age.

With surgical ovarian ablation, you don't get the cell kill but you get definite menopausal status, although still with limited hormonal production from other parts of the body. We don't know how much the addition of trastuzumab would provide in terms of protection.

If you can get chemotherapy due to the HER2  positive aggressiveness, it would most likely be given with trastuzumab. There is no definite information yet as to whether the trastuzumab is capable as a single agent for early stage bc of handling the risk. As a single agent, it would have whatever advantages there may be to being given with an intact immune system (which chemotherapy would not allow).

Each person has a different comfort level with the choices, but the important part is understanding where the weaknesses are for each choice and where the strengths are. As others point out, the recommendations go by what has been proven, not what "might be".

With chemotherapy, the permanence of full postmenopause is uncertain. But one can also add aromatase inhibitors after chemotherapy. They don't affect menopausal status other than that they don't work until one is menopausal, in preventing some production of breast estrogen. (I'm not sure whether that should say "menopausal" or "postmenopausal".)

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/2/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/11/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/9/2002 Breast Hormonal Therapy 11/14/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 28, 2012 04:07PM whippetlover wrote:

Dancetrancer, you have a huge decision to make and have had some excellent advice. Beesie has given you excellent and logical information. The latest studies reported at the 2011 San Antonio Conference are worthy of study in terms of your decision. Go onto their website and search for 'small her2+'. There are many reports of both current and retrospective studies. Some of them are reported as posters, such as this one;

http://www.abstracts2view.com/sabcs11/viewp.php?nu=P4-09-03

It is from an extremely reputable study centre.

Those who are telling you that you have a 23% risk of recurrence are not looking at the difference between local and distant recurrence. Beesie has clearly pointed this out to you. Also, the difference in absolute risk is critical as voracious reader explained.

It is a difficult decision. You do fall into a 'grey' area. So did I, over 7 years ago when neither herceptin or chemo were offered for < 1 cm her2+ cases. My tumor was 5x5x8mm, so technically t1b. I had neither chemo or herceptin and am still recurrence free. I suppose it was easier for me as there was no decision to make. It was just the current protocol back then. However, there are lots of retrospective studies. If I had my time over and I would definitely have herceptin...maybe not chemo.

Good luck with your decision. 

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Jan 28, 2012 04:10PM dancetrancer wrote:

Beesie, thank you, I follow what you are saying, and it makes sense, although I wish it weren't the case.  I was trying to make the grey and little more black and white, but it just isn't happening.  LOL  I have a habit of trying to make the research tell me something, when it isn't possible. 

voracious, thank you so much for your input as well.

Comes down to again, which possible adverse event I'd regret more.  Metastasis or some type of long-term consequence  from the chemo/herceptin.  If I can get a "softer" chemo that will sway the scale for me. 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 04:38PM - edited Jan 28, 2012 04:39PM by dancetrancer

whippetlove, that study sure does give one pause to lean the other way, or at a minimum, think twice about chemo.  Of course we don't have the whole study, so hard to analyze fully.  Comments from the peanut gallery?

Results:

  • Among 658 patients with tumors < = 1 cm, 494 were HR+, 109 were HER2+, and 55 were TN. 232 were T1a tumors, and 426 were T1b tumors.
  • Median age was 58 yrs, median f/u 3.5 yrs
  • 5 year DFS (disease free survival) was 97.9%, 95.6%, and 93.5% in patients with HR+, HER2+, and TN tumors, respectively.
  • TN status was associated with worse DFS while HER2+ was not
  • In the HER2+ group, 5 year DFS was not different among patients who received chemo +/- trastuzumab (32%) and those who did not (p= 0.588)
  • TN status remains an independent risk factor for worse DFS in T1bN0 (HR 3.68, 95% CI 1.17-11.6), but not in T1aNO (HR 2.04, 95% CI 0.26 - 16.3)

Conclusions:

  • TN, but not HER2+ status, was associated with worse DFS  in tumors ≤1 cm
  • DFS was not different in HER2+ patients who received chemotherapy +/- trastuzumab vs. those who did not.
  • Further studies are needed to evaluate the benefits of chemotherapy +/- trastuzumab in patients with T1abN0M0 tumors.
Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 04:50PM voraciousreader wrote:

Dancetrancer, we love peanuts! Actually, we pine for all kinds of nuts and nutty questions. While your senses are being overwhelmed by your diagnosis, your difficulty in obtaining the correct diagnosis and all the data concerning protocols for the characteristics of your tumor.. At the end of the day, you need to decide how risk adverse you are based on the available data. If it offers you any comfort..all of us had to do the same. Similarly, sisters with intermediate OncotypeDx scores are usually in the same quandary with being in a gray area. I wish you well. You really have been through the mill with getting properly diagnosed. I hope, ultimately, whatever you decide brings you peace.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jan 28, 2012 05:02PM SpecialK wrote:

dancetrancer - on your question for maja, could have been 4 taxol over 12 weeks, or 12 weekly Taxol.  Also, generally is is chemo and HErceptin, then radiation during the rest of Herceptin but with a break between chemo and rads (usually 4-6 weeks), then Tamoxifen/AI starts while still on Herceptin.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jan 28, 2012 05:07PM dancetrancer wrote:

whippetlover, I am seeing SOOO many studies on that site.  Thank you so much for the lead.  All, you've gotta see this one, it's exactly the kind of study I was looking for: 

Systemic Adjuvant Treatment of T1a and T1b N0M0 HER2+ Breast Carcinomas; an AERIO/UNICANCER Study.

Peron J, Vano Y, Frenel J-S, Wassermann J, Albiges L, Rodrigues MJ, Cottu PH. Centre Léon Bérard, Lyon, France; Centre Antoine Lacassagne, Nice; Institut de Cancerologie de l'Ouest, Centre René Gauducheau, Nantes; Institut Curie, Centre René Huguenin, Saint-Cloud; Institut Gustave Roussy, Villejuif; Institut Curie, Paris

Background:
Trials have shown benefit of adjuvant trastuzumab (TZM) for node-positive (N+) or T1c+ HER2-positive breast carcinomas.

Methods:
Retrospective series in 6 french cancer centers from 2000 to 2010 of T1abN0M0 HER2 positive breast carcinomas. Multifocal tumors were excluded.

Results:
Two hundred five N- cases were retrieved. Median size was 8 mm (range, 2 to 10 mm), 51 were T1a (25%), 152 tumors were T1b; 120 tumors (59 %) exhibited significant hormonal receptors (HR) expression. All patients had surgery, 65 % (n= 133) had a local irradiation. Ninety percent of HR+ patients (108/120) received hormonotherapy: 77 received aromatase inhibitors (AI) upfront or sequential; 23 received tamoxifen (TAM) alone 13 received LHRH agonists alone or in combination with TAM or AI. Forty-nine percent (n= 101) had chemotherapy (CT) (Anthracycline alone for 41 cases, taxane alone for 31 cases, sequential A/T for 28 cases and concurrent for 1 case), associated with TZM in 90 cases. TZM was administered without chemotherapy in 3 cases. Decision of adjuvant CT and/or TZM was associated with (all p<0.05) HR-negative status, Elston-Ellis grade 2/3 and high mitotic index (MI) while patients with HR+/low MI tumors were rarely treated (p<0.01). With a 41 months median follow-up, there was a statistically significant difference in invasive recurrences between TZM treated patients and others (log-rank test p=0.04). Twelve of the 112 patients treated without TZM (11 %) had a recurrent invasive disease including 6 metastatic cases and 3 fatal events. There was one invasive recurrence in TZM group. There were as much recurrences in T1a as in T1b tumors. Three of the 12 recurrences (25%) in the group without TZM occurred in T1a cases.

Conclusion:
T1abN0M0 HER2 positive tumors have a significant risk of recurrence which could be avoided by adjuvant chemotherapy associated with TZM. Interestingly, there were no differences in the risk of recurrence between T1a and T1b. Adjuvant chemotherapy associated with TZM should not only be discussed in T1bN0 HER2-positive tumors but also in T1aN0 HER2-positive cases.

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 28, 2012 05:39PM - edited Jan 28, 2012 05:41PM by suzieq60

DanceTrancer - try this one - only small retrospective one with relatively short follow up.

http://jco.ascopubs.org/content/28/28/e541

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+

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