calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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What I find most interesting regarding the NCCN guidelines is that they are, from year to year, a moving target. From the time of my diagnosis to now, the guidelines for my type of BC have changed. Less treatment is now being recommended. I think the wisest thing to do when reading the guidelines is to read several years of guidelines and look for trends. Furthermore, I think what's going on here is a group think mentality. Not saying that that is a bad or a good thing. However, I think one has to be mindful that certain groups might think and behave differently from other groups. Not long ago I read that depending upon what part of the country one lives in, the decision to do lumpectomy vs mastectomy ( all things being equal) will be affected. I read patients in the northeast's preference was lumpectomy. Whereas in the south, the preference was mastectomy. Researchers do not have an explanation at this time for factors that might be influencing this decision. From this discussion, it is interesting to note that there are so many differences of opinion especially since there is so little quantifiable evidence to make a hard recommendation.
I still find it fascinating that despite little hard evidence to support aggressive treatment for the smallest HER2 tumors, that Dr. Slamon's recommendations are not well known in the trenches. Is it possible that each major institution is working in a vacuum? I also am intregued by the lack of difference of opinion at JH. Hmmmm....0 -
I have posted here before but thought I would add my info. I am also outside the range of this Topic, my IDC was 8 mm, grade 3, very high FISH (7 fold higher). I am getting treated at MDA. I started off as DCIS at biopsy, and at that point there was no question of chemo it was just surgery. But once the pathology came back from my BMX there was just no question. I am doing AC-TH. I understand the known risks of Chemo and even know that mist of the drugs are still new and long term risks are unknown. But I also know that I am decreasing my probability of having a recurrence. I am afraid all this in the end is a game of odds and each one of us feels comfortable with certain decisions. Hoping that all of us fall on the side of the curve with no recurrences.
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DCIS is far more likely to be HER2+ than IDC, so in the transition from DCIS to IDC (as well as in the failure to transition from DCIS to IDC) may be where there is uncertainty and confusion in determining the true risk based on HER2+.
So perhaps one could have some DCIS that is HER2+ as well as some IDC that is not HER2+, and end up being considered HER2+ for the IDC that is present. That could be one explanation for why there would be far more small, supposedly "HER2+" tumors that so rarely get into the blood stream, even though HER2 positivity is most active in the earliest developmental period.
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Interesting considerations and postings. I agree with Hopeful .......hope we all land on the side of the curve with no reoccurrences. I remember my first MO saying that there would probably never be enough of us (>1mm but <5mm HER2+ sisters) to do a study to validate any benefit to chemo/Herceptin. Maybe sometime in the future there will be a retrospective. In the meantime I'm hoping I get through the first five years post surgery without recurrence as I understand that's the greatest risk. Blessings to all!</p>
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Weird....the last part of my comment is cut off....not enough of us to ever have clinical validation........but maybe a retrospective someday in the future.
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Chacha - there are a few retrospective treatment studies out now for tumors our size (combined with t1b's), but yeah, nothing randomized, double-blinded. Maybe our numbers will continue to increase as technology for detection gets better. Nothing to help us right now, though.
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Thanks, Dance........or even better, maybe they'll find a cure before then!
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Now you're talking chacha!
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I am close - 7mm IDC ER- HER + grade 3, neg nodes and we were told at Memorial in NYC that TH (Taxol/Herceptin 12 wks) is the way to go, but no studies on long term for under 9mm t1A and B tumors.
TH is very attractive since no Taxotere, which apparently has 6% chance permanent hair loss - very scary - and no Adriamycin, with the 4% cardiac issues which could prevent future Herceptin use.
Any TH'ers here with info on long term for t1A and t1B? I know that Dana Farber has about 400 patients on TH.
I wonder what Slamon would think of TH vs TCH?
I was told TH much less toxic than TCH - no need for neulasta, 12 weeks instead of 18 weeks, no Taxotere.. And, Taxol weekly slightly beats Taxotere every 3 weeks in long term stats.0 -
Hi Driftway and welcome! I think the THX12 is a very viable treatment regimen, but yes, no long term studies on it yet. That's why MD And wouldn't recommend it for me yet -said the trial data isn't in yet. I would have preferred TaxolX12 with H (a kinder, gentler regimen), but I decided I'd follow their advise, except I did stop at 4 tx instead of the full 6. I too was very afraid of Taxotere and permanent hair loss - that's one of the reasons why I used cold caps - saved my hair!
I hope this helps! Hopefully those who have done TaxolX12 will chime in. I also know fluffqueen had a tumor around your size and did Taxol - you may want to PM her.
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The "C" in TCH is Carboplatin which is also pretty harsh.
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When we met with Dr. Slamon and asked about TH instead of TCH he also, like Md Anderson, said the data from Dana Farber wasn't concluded yet and so it was unknown if TH would have enough synergy for the Herception. I did have a very highly respected medical onc tell me however, that she would recommend the TH instead of TCH because she felt that the info Dana Farber had so far looked promising. Also, however, drift way, it is worth noting that my invasive spots were 1.65mm and .8mm which is significantly smaller than yours....not sure if that was reason for the one m.o recommending TH? I am leaving this am to go to MD Anderson to see a m.o and that is on my long list of questions...will let you know if they have any more current info on that. I fly home Thursday
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lmont - thanks for the update and safe travels.
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Lmont- good luck with you visit. I will be in the 8th floor getting number 5 infusion of Taxol tomorrow:) Do let us know what they tell you. It would be very interesting to see the opinion at MDA.
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dance and laprofessor - how did you decide on TCH? Here in the east they feel that dose dense AC-TH and of course TH are better tolerated and recommended for the grey area sub 1 cm.
Did the 3-6% risk of permanent alopecia of taxotere get trumped by the approx 1-4% risk of cardiac on acth?
Lmont - thanks for asking Slamon my very question on TH, and his answer is what I thought, it's too early to recommend.0 -
driftway - TCH was recommended to me b/c I had rads BEFORE chemo (this is unusual, long story), and you can get something called radiation recall when you do chemo after rads (flare-up of rads burn). Rads recall is worse with ACTH than TCH.
Even if I didn't have that issue, I would have chosen TCH over ACTH b/c of the heart issue. Yes, I was very fearful of the permanent hair loss risk with Taxotere, BUT, I used cold caps to save my hair - so that took that risk away.
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Lmont79
Hi there just came across this I am 32 dx at 30. Had 2 mm micro invasion same as you tons of oncs said do nothing and one said tch I landed on doing the th I felt I had BMX and I was comfortable with the research thus far with th I even considered h alone but my onc really said whats the point if your going to do it do it right. Anyway I found the th very doable I used cold caps did t lose my hair and had intestinal diareah problems and a sour stomach throughout and was tired but I worked a d raised my 8 month old baby thud 12 weeks. So it s definatly less toxic. I think it comes down to your comfort level I was scared of the long term effects muscle aches bone issues and things associated with the tch I found for me th was the happy medium and with BMX I felt I was doing what I needed too! Hope this helps like everythi g In bc it's a personal decision as to how much or how little treatment to persue pm me if you would like!0 -
I'm not sure I quite fit the criteria. My IDC was only 3.5mm but because of the Paget's, it is considered as involving the skin so it is classified as a t4b instead of a t1a.
My Oncologist said that the size was irrelevent when it comes to a grade 3 Her2+ tumor and she wants me to start the TCH as soon as possible (within the next two weeks). She also would have been willing to put me on Herceptin only or even refuse both but she was pretty persuasive in explaining the benefits and risks of the options. She said there were other options but felt this was the safest one that was still agressive enough.
I also have the added complication of being type 2 Diabetic so we will have to manage that as best we can as well.
I'm in the US, age 47, dx this year, Grade 3 3.5mm t4b IDC, ER/PR- HER2+ - Recommendation TCH 6 treatments 3 weeks apart, Herceptin for a year 3 weeks apart. I will probably be starting in a week or two. (I'm still in the appointment setting up phase for all the scans and tests.)
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Hello, Jinkala! Sorry you have been inducted to the club no one wants to join. It sounds like you are in good hands.
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Welcome Jinkala! I believe you are in the right place, even though the staging is different. If you had only had the Pagets, would they have still recommended chemo? If not, then it appears it is the 3.5 mm Her2+ IDC that is driving the chemo decision.
Sorry to hear about the diabetes, that could make it more challenging. I developed prediabetes from the steroids. We are hoping it goes away in time (and of course watching my diet/exercise). Hope all goes well for you!!! Keep us posted!
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If it had only been the Pagets and the DCIS and nothing else, there would have been no chemo. I even asked the Oncologist if it were just because of the skin involvement with the small IDC and she said no, that it was because of the grade 3 and the HER2+. I think the pathology report said the HER2 was 3+?
She also said that she finds that younger women tend to have more aggressive breast cancers so with my age, she felt that being aggressive was warranted despite the very successful removal of the cancer.
I think another poster on this thread mentioned being with Kaiser and that's the HMO that I am with as well. They have really been wonderful through all this and seem really dedicated to recommending the best course of action while still being willing to work with the feelings of the patient.
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thanks Jinkala - I've updated the thread to include your stats! My last opinion at MD Anderson told me the same thing as you - b/c I was younger, my risk was higher, and biology trumped the tumor size. Even though I was grade 2, they still felt I should have chemo. Some of the studies posted also showed increased risk if you are er/pr negative, which applies to your case. I'm so glad you are happy with your onc, etc. - makes all the difference in the world!
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Diagnosed with IDC with 3mm tumor with mammogram.Surgeon recommended MRI which picked up another tumor of 6mm in different area of same breast . The 6mm tumor ended up HER2 positive. Both were ER + and PR- grade 3 It took 3 weeks after the biopsies to find out about the HER + as they have to send that out special for testing. . I had a mastectomy and glad I did because the mammogram didnt pick up 4cm of DCIS and most important the 6mm tumor. Sentinnel node was negative but few microinvasion extracellular of lymph nodes classifieds as neg. Oncologist recommended 6 treatments of Cytoxin, Taxotere with Herceptin and then Herceptin for a total of one year. Im waiting for results of the BRCA testing for removal of ovaries if comes back postive. Also will have other breast removed if positive. Im in it to win it and the beast will disappear forever..!! Ladies to go through all of this we need to treat ourselves to something really awesome. A trip , a new bike or at least one laugh a day for the rest of our lives. Eat well and live well.......
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Welcome Deb! Best wishes on the BRCA test - hope it comes back negative, but it sounds like you are ready to do whatever needs to be done no matter what. I feel ya on the in it to win it!
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Jinkala, I'm with Kaiser too...and very happy with the care I am getting. I won't be having chemo or Herceptin (after many consults and tests) due to the size (3mm)....which concerned me a lot since there are others with similar sized IDC who get the whole treatment due to the HER2 +.
I'm glad to see from your experience that it is not a cookie cutter treatment plan based on an HMO formula! I AM older (57) and grade 2
Dance: do you have any correlation on your stats for this thread that include the age difference? It would be interesting to know how that effects the chemo or no chemo ?
LOL....I'm still trying to get me head wrapped around the fact that I'm considered, "old"
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Chachamom - I don't exactly feel 'younger' a lot of the time lately. LoL
Yours is ER+/PR+ so you do have a few more options to choose from so there is that difference. I think they do rely on some level of cookie cutter plan for treatments but they do take the patient's feelings and individual case peculiarities into account as well.
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Welcome Jinkala! I struggled for a long time with my wee tumor size (4mm no nodes) and now feel really at peace with my decision to do the chemo and year of Herceptin (although I have had some side effects that have tested my resolve). I am now finished the four Taxotere, Cyclophosphamide and Herceptin and doing herceptin every three weeks. Feeling stronger every day and wishing you all the best on your journey! vjm
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Welcome Deb! xo vjm
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chacha - I don't have ages for everyone, but here is what I do have:
no tx, recurrence:
age 34 (don't have ages for the others)
no tx, no recurrence thus far:
under 35 - one person
35 to 45 - two people
45 to 55 - one person
over 55 - two people (including yourself)
tx, no recurrence thus far:
under 35 - 2 people
35 to 45 - 8 people
45 to 55 - 7 people
over 55 - none
Let me know if you want the ages broken down any farther. Hope this helps!
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Welcome to the new strong women that have joined the club!
Sorry, I didn't write sooner, but my trip to md Anderson was extended and then it has been a crazy week so finally sitting down for the first time to check in. Our trip to Texas was incredible, md Anderson was absolutely amazing and the doctors we saw were fantastic. I have decided, after consulting with Dr. Valero to begin TCH chemo this week. He spent a very long time with us and really covered all of my medical history ect.... At the end of all that he said what pretty much every other dr has said....it's a tough call and there is little to no info on women in our shoes. He referenced several studies, even ones Md Anderson was involved in and pointed out all the holes when it comes to IDC that is her2+ and less than 10mm. So he felt that in situations like ours it is important to look at the 'whole picture' for each individual patient (med history, age, age at pregnancies, whether you breast fed, family genetics, ect...) and make a decision based on the whole picture. He recommended TCH because I am so young, had kids before 30, I have a huge huge family and no one has cancer on either side and I have no genetic markers, ect... he felt like this cancer turned on and wanted to spread ( my her2 made 19 copies of itself) it just happened to be caught before it did and we have no way of knowing if anything got into the bloodstream.
Soooooo we have decided to move ahead with chemo, I start on tuesday and I feel good about our decision. It was a tough one to make but having a decision made seems to have been half the battle0
