calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Thanks Rosamond & dancetrace - On my way out the door now - staying overnight near Dana Farber. Have not met w/ an oncologist yet. Local hospital - met w/ surgeon and lining me up w/ radiologist. I asked about an oncologist but they seem to like to do that after surgery...? But I will be seeing one tomorrow as I get my second opinion at DF, so relieved to have that discussion now. Yes, I have good overall health, so hopefully that's a good predictor.
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thank you so much dancetrancer. I will repeat to myself your advice over and over!
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peg645, my statistics are just about the same as yours. Age 60 at diagnosis, stage 1A, 5mm tumor, no nodes, ER+ (but only 26%), PR- and HER2+. I was just below the cutoff of 6mm for standard Herceptin recommendation, but my onc showed me statistics indicating that without chemo/Herceptin there was a 25% chance of recurrence even with such a tiny tumor. So I decided on the weekly taxol/Herceptin regimen which was fairly uncommon at the time. As I researched more about HER2+, I am very glad I went with taxol/Herceptin. In fact, I was the first person for whom my onc recommended this treatment. He had heard about the great results with the study at Dana Farber (published later). I had only minor side effects. I worked throughout treatment, although I missed one day a week because I used cold caps to save my hair (cold capping basically takes up the whole day). I hope your consult at Dana Farber gives you the info you need!
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Reporting back briefly from Dana Farber. Like night and day how you're handled, and the information they provide. Saw the oncologist and surgeon, and two additional support professionals were squeezed in as well. I can stay in my niece's house after surgery, so my excuse to have it done there. LOL. If I had it done at home, I have no one nearby, and my house is out in the middle of nowhere. Lumpectomy for now. Radiation, chemo & herceptin afterwards. All depends on the outcome of the surgery of course. Oncologist thinks I'll be fine to work. Wonderful to have so many fears put aside that originate with poor choices in treatment in years past. I am so buoyed and confident. What a change.
And speaking of work, just found out our contract renewed for another 3 months! Whew! Will have health insurance, and be able to pay the mortgage, and bills, etc., etc. But what a day - walked in this morning and they said we had to finish the contract across country, then this afternoon said we're staying put. Arrrggh!!
Also having genetic testing. Price has dropped dramatically since my scare last year.
A lot happening going forward.
PatinMN - thanks for your response. Wow - we do sound similar. And everything I read about "our" situation does bring one right back to the study at Dana Farber. I just read about cold capping - must dig to research it some more. I have very, very fine hair. Wonder if it makes a difference. Also interesting reading your timeline - wondering if mine will be similar. I expect I'll have surgery early July. Thanks for touching base. So glad for this forum.
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Peg - wonderful news about Dana Farber, and your contract renewal. These first days and weeks after diagnosis are such a whirlwind, it really helps to have great people on your side. You sure didn't need the extra worry about your employment situation mucking things up! By the way, my timeline was sort of messed up by the fact that I developed a cracked root and had to have a molar pulled before I started chemo. Otherwise I could have started chemo/herceptin earlier, but they assured me there was no problem waiting that long.
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Peg,
So glad everything worked out at Dana Farber, it's really comforting and reassuring to feel that you've picked a good team and they have your back. I just finished 12 wk Taxol/ herceptin in April and cold capped ( my husband was my capper) the cold caps work really well with that protocol. There are a lot of of us here, and I know you'll find this a great supportive place
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Peg, so glad you had a good experience at Dana Farber. FYI I too am a successful cold capper - and have very fine hair. I had to do Carboplatin and Taxotere with Herceptin (this was before the Taxol regimen was fully established). Everyone I've seen do Taxol and cold caps seems to have had great success. Check out the cold caps thread if you are interested/have more questions:
https://community.breastcancer.org/forum/6/topic/735873?page=460#idx_13777
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peg645, it sounds like you have a sound treatment plan and some relief from work worries. I wish you all the best in your journey, and I know that many here in this forum will be able to listen and advise you about cold capping and chemo/Herceptin. My tiny tumors were never recommended for the regimen that you'll be going through, and I have wondered whether or not I should have sought out an oncologist who would have provided me with chemo and Herceptin. At the end of the day, I chose to follow the opinions of a tumor board and a second opinion and go with tamoxifen as my tumor was over 90% reactive to estrogen, slightly to progesterone, and highly amplified for Her2/neu, but tiny. Two years this summer, and all is well. One day at a time! Good luck to you.
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Hi all - I'm very happy to report that the repeat cardiac echo was normal, and that the "abnormal" echo turned out to be a calculation error by the hospital cardiologist who read the study. Although I'm obviously dismayed they could make that error and put me through such stress, I am so happy my heart is fine after all and that I can (and already did) continue the Herceptin. I never would have known of the error if I hadn't expressed my concerns to the echo tech. They are not supposed to tell you anything as the official cardiology read is the bottom line, but he kindly looked back at the abnormal study and admitted what had happened.
Peg, sorry you have had to join our "club" but happy you found your way to Dana Farber, BC.org and this thread. Sounds like DF has been great and you are on track to get what pretty much everyone currently thinks is the right Tx for a 6 mm tumor like yours. I worked through two of the three months of Taxol. I probably could have slogged through the last month and RT with some accommodations but was happy I didn't have to. I took off two weeks after lumpectomy, sentinel nodes but again, I could have been back in a week if I really had to. I hope your finances will allow you to take care of yourself though. Some people work through all of Taxol/Herceptin and RT, others need more time to rest. I was convinced I'd be a "work through it" type of gal, but that was not to be. Fortunately I could absorb the financial hit. I highly recommend joining a BC.org chemo thread now or at some point before starting Taxol. There is usually one for people starting each month - just search (insert month) chemo group. I learned so much that may have helped me avoid some side effects and deal with those I had. I'm still on a closed Facebook group that came out of the BC.org thread and can easily imagine being virtual (if not real face to face) friends with some of these women for a long time to come. Their support has been invaluable to me!
Best of luck to you - keep us posted!
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TT,
I am so glad to hear that!!!! Mistakes are unsettling to say the least, especially that sort of mistake but at least there was a happy resolution.
Peg,
Like Dancetrancer, I'm also a successful cold capper, they work great with the taxol/ herceptin protocol I did. They're definitely worth the time and trouble for the privacy they afford one.
I didn't work during my 12 wk treatment as I had a lot of trouble with the big D and would have spent more time. In the bathroom than my office. My husband and I work together (we're writers) and it's hard to concentrate on work when one is pounding Imodium. Within a couple of weeks after my final chemo , we were back in our office and back at work again. You should do fine, and everyone here is very kind and helpful.
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TTfan, I too am glad that your repeat echo was normal.
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TTfan, great news! Yay!!
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I am four years out this past may, no reacurrance
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Congrats Allie'sMom on 4 years! I'm just a week or two myself from my 4 year dx anniversary. Still NED! Much to be grateful for.
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Congratulations! These are the kind of updates I love to see!
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Thank you all so much. Every year it gets easier to breathe a sigh of relief
I pray for you all to have the same outcome
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congrats for all the positive cancerversaries! So encouraging for those of us behind you
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This is my first time posting, although I've been tracking this thread for a while. I started out with DCIS. Then the first lumpectomy found 5 tiny IDC tumors (largest is 2mm). Earlier this month the sentinel node pathology showed isolated tumor cells. My oncologist recommended no chemo, but will do Taxol & Herceptin if I insist. My surgeon also recognizes this is a tough borderline call. (I'm fortunate to have a great team and some of tge best medical experts in the country nearby)
As hard as chemo would be, I think it would be easier if I didn't have to make the decision. I'm scheduled for a second opinion next week. I swing back & forth in my thinking. The stakes are so high! While I'm told my chances of recurence are in "single digits", the doc also said if it comes back it will most likely be in 2-3 years & will be Stage 4! But the chemo would only lower my risk a few points.
This decision strikes me as a crazy kind of cruel. Maybe it's because I'm just now getting my brain around how aggressive HER2 is. I'm a former nurse, so understanding a lot of the details, and generally I take things in stride... But, geez! Hoping to get to a place where I can live out my life with a reasonable amount of peace.
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had a 1.5mm tumor, and just under 1mm of micro invasion in my dcis. I chose taxol and herceptin. My fish score was 4.8! So way high for her2. Studies out of Dana Farber show women with tiny tumors who do herceptin and taxol have spectacular results. As in no recurrences for most of them. Was worth it for me. I decided I couldn't live with myself if it came back and I hadn't done taxol and herceptin. I would never forgive myself. And since I already managed to get cancer before 40...
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bump
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Tresjolie,
Mine was larger than yours at 7mm, but still in the small zone, nodes were clear and I did the same thing. The guys at UCSF recommended it for me as my HER2 was 3 so....glad I did it. My old oncs at Cedars Sinai were reluctant since before the Dana Farber study I was in what they called a grey zone but since I'd already had cancer 25 years ago in my 30's (TN) I wasn't going to fuck around with HER2, I'd never be able to forgive myself if I didn't try everything I could to prevent a 3rd go round
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Sula dog your fish was 3?
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horsegirl - I hear ya. Definitely is torture being in such a grey area. Chemo below 5 mm is still not officially recommended. But if you are younger (under 50) the risk is a bit higher. My 2nd opinion at MD Anderson advised me to do chemo/Herceptin even though I was only a 3 mm HER2+.
I did TCH. It was much harder than I expected. It put me into instant menopause. The high steroids caused pre-diabetes, which I still have 4 years out. I had to stop Herceptin 6 months in because of declining heart function (which has returned to normal). It definitely entails high risks...but, I'm still cancer free...thus far...would I be without having done the chemo? I will never know.
I for sure wish I had done the Taxol/Herceptin, so if you are leaning towards chemo, consider what I call "chemo-lite".
You had isolated tumor cells in the nodes? I would take that also into consideration. Did the docs tell you that meant it has a higher chance it might have escaped further? Those are the questions I'd ask.
No easy answers for you, but, lots of understanding and support for this difficult time!
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tresjolie,
Yeah, one of my MOs went over it with me and it was pretty strong "florid" I believe the term was 3+ I believe. It was grade 2 and some grade 1 which is an improvement from my grade 3, TN back in '9
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Thanks. My IHC was 3+ but my FISH was 4.8 and so far I haven't found anyone whose FISH ratio was that high. Always makes me nervous that it was that high. I also had a lot of comedonecrosis in my dcis and had all high nuclear grade grade 3 stuff going on. Another reason I went for it.
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dancetrancer, that's a lot of side effects! Especially disheartening to have to stop the targeted therapy. I wouldn't have expected that.
I'm 59. When my doc mentioned my age as a factor in considering chemo, I had to ask if I am young or old, LOL! Happily I am still young According to him. The docs have seriously considered the isolated tumors cells (.11 mm) in the first node. But aparently the research about using them as an indicator for higher risk is not panning out. So it's kind of a non- factor to them. Intuitively, it sounds importantant to me, but I'm not the expert.
I am interested in any research happening about tiny Tumors and isolated tumor cells. Learning as fast as I can.
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Tres,
I was basically grade 2 stage 1a , type T1b since the tumor was only 7mm, no nodal involvement and until the Farber study came out there was some debate about what to do with me. So I did 12 was Taxol/ her spring and now am on herceptin alone til the end of the year. I'm also taking arimidex.
Back in 90 I had a 1cm TN tumor with again no nodes but because it was grade 3, and very aggressive they gave me CMF chemo for 8 rounds. I think the thinking now is any HER2 gets some form of chemo and herceptin, and I don't regret doing it. My MO at UCSF says it's a bit of overkill with smaller tumors but hey, whatever hopefully works
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Hi Horsegirl:
Did you see the study citations a little higher up in this thread? Just in case, I am copying them over below for convenience:
An article originally mentioned by cloudynight is available for free via HHS at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC431386...
The article was also recently summarized in the ASCO Post at:
http://www.ascopost.com/issues/may-25,-2015/high-invasive-disease-free-survival-with-adjuvant-paclitaxel-and-trastuzumab-in-small,-node‑negative,-her2-positive-breast-cancers.aspx
(The ASCO link is not working, but if you copy the whole thing (through aspx) and paste it in your browser, you will get there.)
You may find these 2014 articles of interest as well regarding HER2+ T1a node negative disease:
http://jco.ascopubs.org/content/32/20/2142.abstrac...
http://jco.ascopubs.org/content/32/20/2151.abstrac...
If you click to get the full text or pdf, at the bottom of the page there is an option for patientACCESS at no cost I believe. The full length articles are quite readable. There are interesting tables separately reporting T1a characteristics treatments and outcomes, and breaking out ER negative 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.
Please note that these are N0 patients using the criteria of the American Joint Committee on Cancer (AJCC), I believe. It is not clear to me exactly what your nodal status is from your profile, although pN0i+ is considered node negative (N0) for TNM staging purposes.
If you rely on these or other articles to aid in your decision-making, it is a good idea to discuss your thinking with your oncologist.
FYI, I had a 1.5 mm IDC and micro-invasion, but HER2 status was not able to be determined.
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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thank you! I will go through all the research again so I don't miss anything.
I'm pN0i+ The diagnosis section question assumes this as 1, but I know it's considered 0 of 2. Will see if I can fix this on my diagnosis.
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Hi all, pardon the interuption because I am don't fit into this topic, but I can't find a forum that is quite "right" for my question, and I hope you point me in the right direction?
Update-Her2 neg.
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