calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Dance trance...so interesting to read your thread and yes we seem to have very similar situations and are very determined to make the best decision! Just curious, who did you see at md Anderson?
So I have seen 5 of the top med oncs in Los Angeles, from 3 different institutions and as mentioned had the entire breast oncology team at Johns Hopkins say no chemo based on this beginning as DCIS and then having a less the 2 mminvasive component. Dr. Glaspy, from UCLA was the 2nd med onc that's saw and he was so convincing that it propelled us into more appts to try and figure it out. Honestly every dr I have seen has been amazing and all have 20+ yrs in field. So far I have 12 med oncs saying no chemo and 2 from UCLA saying chemo...once chemo has been put on the table it is hard to ignore!0 -
Lmont, I know!!! It makes you feel like, uh-oh...I better do something, or I'll regret it. Well, at least it does depending on your personality...I'm a worrier...love my life...wanted the best chance to live it a long time! At the same time, didn't want to overtreat and regret any possible long-term chemo effects...such a TOUGH decision! It's a very personal decision - has so much to do with your risk tolerance. I saw Dr. Gonzalez, she was fantastic and extremely convincing (obviously, since I went ahead w/tx). I am curious what she'd say about a 1.6 tumor...at what point DOES size make a difference, ya know? Although you are even younger...and is the IDC Gr 2 or 3? Hmmmmm...so many factors. Who are you seeing?
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Dance trance, my DCIS was nuclear grade 3, my her2 invasive component was also 3....high grade.
We are seeing dr. Vincent Valero...it will be interesting to see what he has to say and if it is in line with what you were told. We go July 17 th so I will keep you posted, seeing dr. Slamon next week.
Ya it is kind of maddening to have really good doctors make really good arguments on both sides of the fence. Hopefully in 5 yrs from now there will be more info on this small her2 stuff. Hoping to eventually be convinced, one way or the other and be able to move forward and feel good about it. It seems my young age is a big player for the no chemo group, saying there is a longer time for more toxic risk to happen...but then the chemo group is saying I am so young it would be a tragedy if it came back..sigh!
One thing is for sure, I think I have earned a M.D from all the research I have put into this!
On a side note I will be going back to the o.r on Tuesday to have my right expander that has shifted into my armpit be put back into place. This needs to happen before radiation begins...this surgery is actually what is buying me some more research time, and allowing us to make our trip to Texas .0 -
LMont79.....sorry you are here....but this is a wonderful group of women who will support you in whatever decision you make! Do keep us posted on your consults at MDA and Dr. Salmon. Blessings to you!
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Lmont, awesome - looks like he was on the same study as Dr. G.
Early Stage, HER2 Positive Breast Cancer Patients at Increased Risk of RecurrenceI won't be surprised if he recommends chemo, despite your IDC being even smaller than mine - since it is high grade and you are even younger than me. They told me being younger increases your risk for recurrence. They did an analysis of their data and found young age to be a higher risk factor. I can find that study for you if you'd like it. It will be very interesting to hear what Dr. V has to say!
My experience at MDA was fantastic. It's a big place, but everyone is so helpful. I had to go by myself. I stayed at a local hotel (I'll look it up if you want a recommendation) that was great - had a reduced rate for MDA patients - and had a free shuttle to MDA. Once at MDA, if I looked lost, workers stopped to ask me if I needed help...I didn't have to ask. And in the doc's office, they offered me a warm blanket. Very smooth operation, very kind!
Can't wait to hear what Dr. Slamon has to say. WOW! Psyched for you to get to meet him!
LOL, my local doc tells me I know more about my specific subtype of cancer than the majority of oncologists. I'm actually pretty dang sure he's right! Except for Dr. Gonzalez...wow, she knew the research on this specific topic forwards and backwards!
Good luck with your surgery - that "shift" does not sound fun!
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dancetrance,
i would love that study if you have it. i also will try and post some of the studies i have researched for other women like ourselves..it takes a lot of time to find the studies so sharing them is invaluable.
will keep everyone posted about what Dr. Slamon has to say ( appt june 27) and then also will stay in touch until we leave for texas
xoxo
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Thanks for keeping us posted! FYI: when I asked my first MO if my age (57 and postmenapausal) had anything to do with him not recommending chemo/Herceptin with my .3cm HER2+ IDC, he said " no".......but everything I've seen since leads me to be convinced that as Dance says, the younger age increases recurrence risk and should be taken into account.
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Lmont79 - I too was originally told no chemo for my 4mm HER2+, ER/PR+ tumor Grade 3 with no nodes.... until I started reading the latest research and my MO consulted three HER2+ experts and brought my case forward for panel review. 2 of the 10 on the panel said chemo, and all 3 experts on HER2+ suggested I do 4 treatments with cyclophosphamide, taxotere with Herceptin for a year. I start Tamoxifen mid-July. I had already started rad tx when they asked me to consider. It was such an interesting journey. When I did - I knew I had made the right one, started sleeping again, and was completely at peace with my decision. Chemo completed last Friday and I don't regret my decision one bit despite the challenges. Weary, but rich from the journey. Good luck... you will know. vjm xo0
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Here is the age study for t1ab patients:
Theriault RL, Litton JK, Mittendorf EA, Chen H, Meric-Bernstam F, Chavez-Macgregor M, Morrow PK, Woodward WA, Sahin A, Hortobagyi GN, Gonzalez-Angulo AM.
Source
Department of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.Abstract
AIM:
This article evaluates the risk of recurrence for patients who have small node-negative breast cancer by age and tumor subtype.METHODS:
One thousand twelve patients with a T1a,bN0 breast cancer diagnosed between 1990 and 2002 who did not receive chemotherapy or trastuzumab were included. Patients and tumor characteristics were compared using the χ(2) or Wilcoxon's rank sum tests. Survival outcomes were estimated with the Kaplan-Meier method and compared using the log-rank statistic. Cox proportional hazards models were used to determine association of breast cancer subtypes and age at diagnosis with other covariates.RESULTS:
Median age was 51.5 years. There were 771 hormone receptor (HR)-positive, 98 HER2-positive, and 143 triple-negative breast cancers (TNBC). Six hundred ninety-three patients were > 50 years, and 33 patients were ≤ 35 years. For 5-year survival estimates, there were 118 deaths and overall survival was 94.6% (95% confidence interval [CI] = 93.2%, 96.1%). After adjusting for breast cancer subtype and other tumor characteristics, patients ≤ 35 had 2.51 (95% CI = 1.21-5.22) times greater risk of worse recurrence-free survival (RFS), and 2.60 (95% CI = 1.05-6.46) times greater risk of worse distant RFS (DRFS) compared to patients > 50 years old. Compared to patients with HR-positive disease, patients with HER2-positive breast cancer had 4.98 (95% CI = 2.91-8.53) times the risk of worse RFS and 4.70 (95% CI = 2.51-8.79) times greater risk of worse DRFS, and patients with TNBC had 2.71 (95% CI = 1.59-4.59) times greater risk of worse RFS and 2.08 (95% CI = 1.04-4.17) times greater risk of worse DRFS.CONCLUSIONS:
In this cohort, patients with T1a,bN0 breast cancer, young age and breast cancer subtype were significantly associated with RFS and DRFS.0 -
Hi
I was stage 1 er pr negative,
Her2 positive.
Tumor size .2mm
No nodes
Mactomy left breast
No treatment
Diag 2009
Reconstruction still not done
Hugs,
Margie0 -
Hi, Cookie!
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lmont79 - could you give us an update on what Dr. Slamon had to say? Thanks!0
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Sorry for the delay...I had surgery on Tuesday for my shifted expander and everything was much more than we anticipated, especially the recovery! We did meet with Dr. Dennis Slamon on wed (I was not at the top of my game post surgery, but my hubby did great!)
He basically said the same thing that Dr. Glaspy said in regards to biology trumping anatomy when it comes to small t1a her+ tumors. He recommended TCH with a year of herceptin. He was "astounded" that the 7 different medical oncs from johns Hopkins said no chemo. He also made the point that from what he knows about her2 + that it is the strongest in its beginning stage...meaning right when it breaks out and becomes invasive is when it has the most strength and he believes has the potential to get into the blood stream. He was glad to hear we were going to MD Anderson and thought that would be an important opinion to have as we try and make a decision. One thing I will say is that UCLA is not following the NCCN guidelines for treatment of t1a tumors and those guidelines seem to be a significant consideration for the 12 other med oncs that say no chemo.
So to Texas July 16th....0 -
Fascinating lmont! I can't believe you had surgery and then an MD appt the next day - wow! I sure do hope you are feeling better and healing quickly!
Thank you so much for posting what Dr. Slamon had to say. It is reassuring to me that he has the same opinion as MD Anderson. I had never heard about HER2+ being strongest when it first breaks out. Dr. Slamon sure would know how it behaves biologically, given all the years he studied HER2+.
It does make one wonder if some institutions just go "by the book" (aka NCCN standards) only.
Best wishes for your MDA appt!
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If that is true, was any explanation given as to why the overwhelming majority of those very early stage HER2 positive bc patients do not go on to develop further breast cancer?
A.A.
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B/c the recurrence rate is estimated at ~ 25%, which is not a majority. I didn't need a majority (> 60%) estimated recurrence rate to make me scared enough to do chemo. It's a personal decision, however, b/c of the risks of chemo and Herceptin. I would never push my decision upon someone else, given that the research on this is obviously not as clear as we'd all like it to be. That is not my intention with this thread, and I hope no one thinks it is. My intention is to provide information to allow each person to make their own individual decision, and provide support to each other, no matter what is decided.
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Thanks for the update Lamont. I hadn't heard the "biology trumping anatomy" Before...although that's what I told both my MO's and my BS that was my concern. I hadn't heard that the HER2+ was strongest in the beginning either!
Well.....I hope my "anatomy" and age will help in my case!0 -
I hope so too, Chacha! I do think being older is an advantage here.
BTW, Dr. Gonzalez put out a podcast about HER2+ where she talks about biology trumping size. When I brought this point up to the first MO who told me absolutely no chemo, he said there is no good data to confirm that. I pointed out the MD Anderson study, and he said that is just one study, and it is retrospective, so you can't draw conclusions from it. Unfortunately, there are so few of us that it is highly unlikely that they will ever do prospective/randomized double-blinded trials for our size tumor. So all we have to go on is retrospective studies, and our gut.
When I told that MO that I knew this topic was controversial, he firmly said "No it isn't. You don't need chemo." Well, you can tell his mind was made up pretty firmly from the start, eh?
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Hmmmm.... Very, VERY interesting regarding aggressiveness... Really begs the question of how well known this is and if Slamon is correct, why haven't the guidelines been updated to reflect this knowledge? Also Dancetrancer, a majority begins, technically speaking, at 51%...
Hope everyone is doing well! Happy 4th!0 -
LOL, VR, you are, of course, correct...claiming chemobrain! Ba-ha-ha!
Good question, I suspect the guidelines have not been changed yet b/c the studies have been retrospective and there aren't a ton of them out there. I wonder what Dr. Slamon would say to your question.
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Hi All! I found this thread last night and I got butterflies! I finally found a thread where we all have the same questions about treatment.
I was 40 in March and had my first mammogram...and here I am now (41)! Wow... so glad I turned 40 last year instead of 39.
Surgery on May 16 removed a 3 cm mass of DCIS with 2 IDC tumors - .4 cm and .3 cm, both with LVI, both ER+/PR+, HER2+.
Saw my local MO here in Louisville, KY and he strongly suggested Herceptin (tx every 3 weeks for a year) and Tamoxifen (5 years). But he didn't know for sure, so referred me to a breast cancer oncologist in Nashville at Vanderbilt (Dr. Ingrid Mayer). I took a day trip, and she recommends Taxol/Herceptin weekly x 12, then Herception for 9 months every 3 weeks, and Tamoxifen (5 yrs).
I decided to go with that treatment plan. I feel like this is my chance to get the HER2+ cells if they are out there, and I may not have that chance again in the future if cancer develops elsewhere. I am scheduled to get a port placed next week, and my first treatment is next Friday, the 13th...whoa!
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Dancetrancer... I realize that it takes lots of evidence to update guidelines... HOWEVER... A tiny footnote???.... That might do the trick! I always say...read the book... And don't forget the footnotes because they might just tell a different story......
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Hi Lauren! It's all happens so quickly sometimes! So glad you found us and thank you for sharing your story! LVI would definitely push me towards doing the chemo. I will add your info to the informal poll I am collecting. Welcome to our little group!
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Lauren... I wish you well during your active treatment!
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I agree VR, I agree!
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Welcome, Lauren! I wish you well in your treatment.
I find it humorous (in a weird/dark way) that it's supposed to be an advantage to be older.....and to have a belly (for a successful DIEP). LOL.
THE TWO THINGS I NEVER THOUGHT I WOULD BE CONSIDERED LUCKY FOR!!! Haha0 -
Chachamom, you crack me up!
It's true, though!!! 0 -
The question I raised had nothing to do with convincing anyone one way or the other. I thought the doctor had possibly provided an answer to the question when he spoke with his patient. It is the obvious question to ask, unless one prefers not to delve into the particulars and prefers to accept the doctor's impression without question.
If the earliest HER2+ is the most likely to get into the bloodstream (i.e., more likely than later, larger HER2+), then why would the percentage of spread for the earliest HER2+ patients be as low as 25%?
A.A.
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I will try and add some clarity about my Dennis Slamon appt. although I will be perfectly honest in saying that I had had a major surgery the day before and was not at the top of my game. He did make the point that from a biological perspective he knows her2 to be strong out of the gates ( that was one of the analogies he used) especially if you are under 35 yrs old, high fish test and high nuclear grade...which for me I have all three. We did let him know that UCLA is really on an island compared to what ALL the other MO are saying, including 6 from Johns Hopkins. So far UCLA is rhe only ones who have recommended chemo. He said he was "astounded" that JH didn't suggest chemo...and I think he said it 3 times. He did say that the studies are limited at best and there is not a lot of research of women with t1a t1b her2+ tumors. He indicated that not doing chemo leaves me at a 77% chance of no reaccurance and that chemo would put me at a 97%. He also indicated that the NCCN guideline are a bit behind the times (not sure I totally agree with that but..)
At the end of the day we are going to go to MD Anderson and then try and put it all out on the table to make a decision. One thing someone told me was that the percentages are hard because cancer is so individual and there is no way of knowing how each person is effected by it.. .it's a little bit of biology, medicine, and luck as far as I can see.
Anyways, hoping to be sharp as tacks when we go to Texas in 10 days, fully loaded with questions, current studies, all the info from all the MO we have seen and get some good answers...will share when I return!
Love and light to everyone!0 -
I'm just slightly excluded from this group (7mm) but I find all this info fascinating! I'm in So Cal, just about an hour from UCLA, so I was lucky enough that my kaiser facility was pretty much in lines with the UCLA school of thought rather than the NCCN guidelines (which in 2009 had tumors 6mm-9mm in the "grey" area for chemo and at that time tumors 1-5mm were not recommended chemo) My onc also stated that my young age (38 at diagnosis) and the fact that I had discovered the lump during breast feeding my 6 month old (so considered a pregnancy-related cancer) that chemo (TCH) with herceptin was pretty much a given. I also went for a 2nd opinion at UCLA, but did not see Dr.Slamon. She had the same recommendation.
It is interesting to me to find that the guidelines have become even more strict (now even considering chemo/herceptin for the smallest of the invasive tumors) and that UCLA is still promoting it even more generously than that! I am hitting my 3 years from diagnosis this month. I have never second guessed my treatment, and am thankful that it was offered to me.
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