calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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Lmont - thanks for the update! I thought MD Anderson was fantastic as well! Dr. V sounds great. I am so happy for you to be at the point of having made a decision - I know it's a toughie, and yes it is indeed half the battle. It's tough to be in limbo!!!
Did he recommend the full 6 treatments? Dr. A did for me as well, but I stopped after 4 due to side effects. I am continuing the Herceptin only for the year.
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Lmont- I am sure you are relieved having made the decision. I like MD Anderson because they give you the data and discuss both the positives and negatives. My MO said this is my recommendation based on the data but you can chose from anywhere in this spectrum based on what you are comfortable with. Chemo is doable you will be done before you know it. Good luck with the treatments.
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LMont79 - I hope you are more peaceful now that you have made your decision. I will be thinking of you on Tuesday. vjm
ps I, like Dance, did only 4 cycles. Now Herceptin every 3 weeks - supposed to be a year, but I may bail at half way point based on my concerns about s/e's and my research in to optimal dosing.
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Lmont, thanks for the update.
I am near NYC and for under 1cm (I'm 7mm IDC grade 3, 0 node, ER-; HER +) they recommend Taxol/H for 12 weeks, and at 1 cm go with AC/TH. They are not fans of TCH, feel AC/TH is better tolerated - see article I posted above.
I have decided to go with AC/TH mainly because the actual cardiac problems is more near 1-2%, and that is still their preferred treatment here especially for ER -.
What concerns me is almost everyone else is getting TCH, especially out west. I do worry about the 8 week wait for starting Herceptin, but the MOs reassure me this is not too long.
I wish some early stage folks ER-, HER+ who got AC/TH could chime in, and wondering if anyone went through the dose dense AC followed by 12 weeks Taxol/Herceptin for early stage, and if so how did it go....
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My MO mentioned some of the other chemo drugs but she felt the TCH was the best one for me right now. She is concerned about the heart issues with the one combined with the Herceptin and with me having a fair amount of heart disease in my family history, I'm more comfortable with that choice as well.
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Driftway- as I mentioned to you in the other thread, the same MD Anderson recommended ACTH for me for 8 mm ER 8%,PR-,her positive. I do worry about cardiotixicity but since we don't have anything to stop this after Herceptin I feel I should do this. It is doable I only have 6 more weeks of Taxol left.
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Thanks for the report Dance! Yes, I know it's not scientific....but it makes me feel better! :-)
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I'm so glad Chacha! It does appear age is a factor in the MO's recommendations.
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Hi there,
I'm so happy I found this thread (well, you know what I mean
). I'm 28, and was dx in late july. I am er per neg, her2 +3. I had prophylactic bmx on august 2. I had 5cm+ of dcis, and 4mm idc "emerging from the background," with additional micro invasions possible. Grade was 3. 0/8 nodes positive.
My mo at Beth Israel in NYC offered a few options, and she is presenting my case to a group of other drs, but she was leaning toward taxol x12 with herceptin for a year. I saw Dr. partridge at Dana Farber before my bmx, and will consult with her about chemo when she returns from vacation.
Here's a weird question: my breast surgeon disagrees somewhat with my pathology. She feels that there was more idc than the pathologist found (since they aren't actually looking at the whole breast, just the slides). Has anyone else experienced this? Has anyone gotten a second opinion on pathology?
Thanks everyone for sharing your stories.0 -
Hi toastiecat and welcome!!
Yes, I have obtained 4 path reviews of my slides. The first 3 did not find my IDC (it was 3 mm). (The reason I had multiple path's done was b/c of close margins, a discrepancy in that, and it was affecting whether I would do rads or not.)
Sooooo...your BS is right, it is possible that some IDC can be missed - even if it is in the slides! And then on top of that, as you said, they only take a representative sample from the breast. There is no way they can look at every single cell from the MX sample. So it is indeed possible that additional IDC could be missed. How possible? I don't know the answer to that.
You have several factors in addition to the HER2+ that are higher risk for recurrence, according to what I have read - being er/pr neg, Grade 3, and your young age. Not sharing that to scare you, as I assume you've already read the thread, but to help you have additional questions to discuss with your MO at your next consult.
Please keep us posted on your next opinion and once you've made a decision, I'll add your stats to the thread. Glad you found us!
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Thanks dancetrancer! I spoke with my dr at Dana farber, and she was very positive about the TH protocol for me. It seems likely that this is what I'll go with, and I'm tentatively scheduled to start on 9/7. A couple of loose ends to tie up first -- consulting with my surgeon to see if she thinks we should take more slides, and seeing if I can get in this clinical trial, which is TH plus pertuzumab.
Thanks again to everyone on his thread, it has been so helpful reading what everyone has to say.0 -
Thanks so much Toastiecat for the update! I have added your stats to the thread title. Wishing you all the best with the Taxol/Herceptin, and so glad this thread has been helpful to you!
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I am T1A, cancer 2.05 mm, no nodes, ER+, Her2+, undergone lumpectomy and Intraoperative radiation. Dr is recomending no Chemo or Her2 therapy. Says risk of recurrence for such a small tumor is less than 3% ( because of ER therapy), chemo would reduce that by a third, which would still be 2 %. Not worth the risk for reducing side effects by 1%. I am still looking at all options. Diagnosed in June 2012.
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Hi, Sheila......I had a similar situation. ...with similar treatment recommendations. I struggled with the issue of not throwing everything at the cancer.....
I recommend you get more than one opinion from a second (or third) oncologist....then you WILL eventually come to the best decision for your individual case....have faith in it. Are you pre- or post-meapausal? That seems to be another factor to consider. It is a very difficult time for you right now....blessings!0 -
Hi shila! Cha cha has given you excellent advice. This is SUCH a controversial thing with docs...ugggh. I feel for you. I had two completely different opinions from oncs. One said no way, chemo is overkill, recurrence risk with no tx would be about 10% over 10 years (cut to 5% with Tamoxifen, I think). The other said throw the book at it, recurrence risk over 5 years 25% without treatment. That's a big difference in estimated recurrence risk. If only we had a crystal ball...
Please keep us updated on what you decide and when you do make a decision I'll update your stats.
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Hi ladies,
Im preparing to start TH next week, and was wondering if you guys could answer a few questions about the experience. I found the weekly taxol group, but it seems like most of the posters had ac before, and I was hoping to hear from some of you who had just done TH. let me know if I should post on the chemo board instead...sorry if this isn't the right place for this discussion!
- did anyone not get a port? If you didn't, how did it go?
- at what point in the process did you start to lose your hair? Did anyone lose their nails?
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My wife had her breast cancer: She had received mastectomy(right) on 4 May, 2012 in the local hospital. The mecical examination result is DCIS, ER(-), PR(-), Her2/neu(-),0/19 lymph node. The doctor didn't think she should receive chemo. However, the authorized big hospital re-examined and gave the different results: Microinvasive localized breast cancer (high grade), ER(-), PR(-), Her2/neu (3+). The doctor suggested that she should receive chemo (EC) and herceptin. About 90 days after the surgery, on August 5, 2012, she began to receive chemo.Now she is still receiving chemo.It's time we should decide whether she should receive herceptin or not. We are searching the Internet for any information about it. We are very happy to find your forum. Would you please help us to decide whether it is necessary to receive the treatment with herceptin. By the way, is the treatment with chemo 90 days after the surgery effective? Thank you for your answer.
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Hi Luis! So glad you found our thread!
So, here's the scoop about small IDC's that are HER2+.
Treatment with chemo and Herceptin is controversial. National guidelines say no treatment if under 6 mm. However recent studies at MD Anderson revealed recurrence rates may be as high as 20 to 25% (that's a combined recurrence rate - distant recurrence rate is about 15%). MD Anderson recommends chemo and Herceptin for these small tumors, especially if you are younger/premenopausal at diagnosis.
Other factors to consider are in general those that are ER/PR negative seem to have higher risk than those of us that are ER/PR+. And if you have lymphovascular invasion, that also ups the risk. Even though I had none of these, MD Anderson felt my HER2+ combined with being premenopausal at dx made the risk of recurrence high enough to warrant chemo/Herceptin. My local onc completely disagreed and felt I did not need any treatment other than Tamoxifen. Soooooo...I made a gut call and decided to do the chemo/Herceptin, but stopped at 4 treatments of chemo b/c I didn't feel my risk was high enough to do 6 full chemo's. I am still doing Herceptin. The recommendation is for 1 year, but I am currently contemplating only doing 6 months due to recent studies showing higher than expected heart risk with Herceptin. There are so many unknowns with all of this, that's what makes these decisions gut wrenching.
Since you have already done chemo, I don't know why you wouldn't do the Herceptin if she is HER2+. That's what we really, really need. I'm not familiar with the EC regimen. Are you outside the US?
What size were her tumors, btw?
And yes, treatment 90 days after surgery is acceptable. My diagnosis was delayed, and I thought it was too late for me to do chemo/Herceptin. However, MD Anderson said no, not too late. I started my chemo 6.5 months after surgery.
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Hi Dancetrance:
First of all, I express my heartfelt thanks to you for your timely detailed answer.
My wife is 52 years old (not so young) and premenopausal (but at the transitional period) at diagnosis. She has no lymphovascular invasion. Her localized breast cancer is 2.8 cm times 1.8 cm times 1.0 cm. Her microinvasion is smaller than 1 mm. She is still doing chemo EC which stands for two kinds of medicine.E stands for EPI, and C stands for CTX. We are still wondering whether it is necessary to do herceptin, which has many side effects, especially on heart, as you told me in your reply.
I'm outside the USA. I'm from China.I have asked some famous doctors in China about the treatment with herceptin. Most of them told me it is unnecessary because the microinvasion is too small. Since herceptin is invented in your country, I have been trying to connect European and American doctors through the Internet but in vain. I have a friend in the USA, who is a science teacher. He is still awaiting the oncologist to reply. So I am very lucky and very happy to receive your answer.
Herceptin is still being tried in China. If we decide to do herceptin, we only need to pay for the first 6 injections, each of which costs 22 thousand RMB yuan, and the last 8 injection is free of charge. The government doesn't pay any for the midicine.
I'm still expecting to receive your reply about the necessity of herceptin for my wife's case.
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Hi Luis,
Happy to help - but I do want you to keep in mind I am not an oncologist!!! I may know quite a bit about this topic, but I'm still not a doctor. So I don't think it is appropriate for me to say "Yes, do herceptin. or No, don't". I think I can share what I have learned about it's indications as well as it's benefits/risks, but then you have to take that information and decide for yourselves whether the benefit/risk is worth it to you. I hope that makes sense!
So, your pathology sheds some light on this. You say she had DCIS but within the dcis the areas of invasive cancer were all micro, being < 1 mm. Everything I have read has said no herceptin for that size, and in fact, no chemo either. So, I am not sure why they have recommended chemo in her case. I had assumed since chemo was recommended that her areas of HER2+ invasive cancer were greater than 1 mm, but your post says otherwise. I would double check with the doctor who recommended chemo and Herceptin to make sure the size of the invasive part of the cancer that was HER2+ was less than 1 mm. Personally, if my invasive part of my cancer had been less than 1 mm I would have not done chemo nor Herceptin. I hope that helps. I cannot tell you what to do - it is a very personal decision. However I hope this information helps you in making your decision!
One additional resource for you is the John Hopkins Ask an Expert question/answer online resource. You can post a question there and a nurse from JH will write back. I've used it before. They don't always answer every single question (sometimes will say your doc has to answer you), but you may want to give it a try to get additional feedback!
I hope this helps and certainly wish you and your wife all the best!!
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Hi Dancetrancer,
Thank you very much for your warmheartedness.
I went to the John Hopkins. Their answer to the question of the treatment with herceptin is yes. I don't think that is an expert answer, because I found the proof in a British medical magazine: "Will the benefit of herceptin accrue to all the women who have her2-positive breast cancer who are treated outside clinical trials? Women with small ( 1 cm in diameter), node-negative invasive tumors were not eligible for this trial of herceptin."
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Bumping for momof2minnies.
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Hello fellow her2+++ers...I have recently finished my 4th round of TCH for my small IDC ( .8mm and 1.6mm). My onc feels like 4 is plenty for the size of invasive cancer I had and that herceptin, which I will continue for the next year, is the main 'player' or important factor in my treatment. Also, she feels that with my wbc dropping and having 2 small kids at home, rounds 5 and 6 would put me at risk for catching a flu or cold that could have complications because my wbc is sooo low. Alos rounds 5 and 6 are usually where the toxicity side effects start showing. Anyways wondering if anyone else has done 4 instead of 6 or if there are any good studies about it. The m.o that I saw at m.d. anderson says i should complete the 6 rounds because that is the 'protocol' and I have already committed to chemo. I am trying to find the balance between taking what I need but not overdoing the toxicity if I don't need to. any thoughts or experiences would be great...thx!
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Lmont, I went through EXACTLY the same struggle. I decided to stop at 4 for the very same reasons - felt the treatment risks started outweighing the benefits for the small size of our tumors. I found a study which helped me feel much more confident stopping at 4:
The study did not use TCH, but it did include HER2+ patients and Herceptin, and they fared well, too, with the 4 cycles.
BTW, I stopped Herceptin at 6 months for the same reasons - thinking the treatment risks (heart issues) outweigh the benefits for my size tumor...it's a risk either way, tough call, but was the way I decided to go. I'm so very glad I did the 6 months of it, though!!!
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I, like Dancetrancer, did four rounds of Taxol/Herceptin/Cyclophosphamide for tumor 4mm as per my Onc's recommendations. Now Herceptin for 17 total treatments - this may end at 12 before December r/t cardiac challenges. Still recovering from s/e's of chemo but no regrets. Will continue to exercise, eat well, and get my head around this past year .... and celebrate
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dancetrance and vjm: thank you both for your replies and info....I decided to stop at 4 and will continue with herceptin for the next several months, evaluating my heart along the way. If heart is healthy and strong will continue with herceptin to complete the recommended 1 year course. I will also begin radiation Nov 12 (for 30 rounds). Glad to hear there are a few other women with very similar diagnoses doing the same regimin. lots of love and support!!
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Same back to you lmont! So glad you have made a decision - I know how much better I felt once I stopped waffling on the chemo call. Wishing you fast recovery and congrats on being PFC!!!
P.S. IMO, rads was a breeze compared to chemo.
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Hi Luis and ladies
My oncologist said that HER2+ trumps everything...
From what I can see from my reading, scientists seem to be focusing on the molecular behaviour of cells re breast cancer.
I had DCIS grade 3 (2.4mm) and all the features were replicated in my IDC grade 3 (3.4mm). Luckily, there was no blood or lymph node invasion.
In my case, surgery, chemo, radiation and Herceptin were strongly recommended and I'm doing them all.
Knowing what I have learned about HER2+ - aggressive, fast-growing, tendency to spread - I would have discussed the possibility of aggressive treatment with my oncologist even if I'd had a tiny tumour. But that is just a personal view. I am not an oncologist.
Hope by now you have made a decision after discussing with your oncologist.
Good luck
Alice
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I could really use some perspective from all you ladies who are following this. I am 54 years old and have been classified as t1a - invasive ductal carcinoma that was measured at 2 mm. Sentinel node biopsy was all clear and lumpectomy was benign tissue, which showed that all IDC and DCIS was removed with the core biopsy alone. My pathology report says that the IDC was nuclear grade 2 and strongly hormone positive. Estrogen receptors at 90% and progesterone receptors at 90%. The IHC score was 2+ and the FISH score was 2.8 (amplified). Ki-67 index was 12%.
I had my lumpectomy and node biopsy just 2 weeks ago. Saw the radiation oncologist this week, and he said that I'd probably do some chemo and herceptin (due to the HER2 status) first before starting radiation. From there I went straight to my appt with the medical oncologist. She seems to think that the benefits of any chemo and herceptin treatment are not worth the toxicity and risks for someone like me. So now I'm really confused!
The MO is recommending hormone therapy and radiation with no other treatment. I told her I am worried about future recurrence, but she says the odds of any cancer cells escaping into my bloodstream and growing into a cancer somewhere else in my body is so remote. She said she wouldn't deny chemo for me if I felt I really wanted to be that aggressive, but she seems to think it is just not warranted. I think the fact that it was so strongly positive for hormones is part of her decision, as well as the size - just 2 mm. Obviously, an estrogen blocker will certainly help my prognosis. But I can't get past all the scary statistics for HER2 positive tumors.
She is presenting my case next week to the tumor board at our local hospital since I am so conflicted about it all. But she told me not to expect to hear too much disagreement from what she already told me.
Is there anybody out there like me who can offer some thoughts? What decision did you make? How did you decide that? And what do I need to take into consideration? I have read all I can about this, and I just hate that there is not much research to help us out. Most people would do the happy dance to know chemo isn't needed, but I am so worried that by not treating with herceptin and chemo now that I will pay for it in the future. I could use some advice. Thanks, ladies!
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It's a tough situation, I don't envy being in your shoes. Initially I was offered chemo as being optional...then upon having more slides done, my pathology was revised from one 4mm IDC to 10 foci of varying sizes. That made chemo a definite. Other contributing factors were my family history, my age (28) and being hormone negative. I'm doing weekly Taxol and Herceptin.
Before this additional news, when I was weighing chemo or no, one option that was offered to me was Herceptin alone. Herceptin is pretty mild SE wise, with the exception of the possible heart issues.
It's really difficult decision, made even harder because we're lay people. I struggled with not feeling qualified to make this big a decision about my health. I would strongly encourage you to seek a second opinion if you haven't done so already. Even if you love your MO, another voice is always good.
Best of luck!
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