calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
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VR - thanks for that article - very interesting read!!! It seems to me that more articles are saying IF you decide to do treatment, lean towards the less toxic option of Taxol+H. Makes sense to me.
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The way I am reading this article...I feel like it still does not include T1a in the study- we were just lumped with T1b
It says :
"Of the 406 participants who went on to receive treatment, half of the
patients had T1a/T1b tumors (≤0.5 cm to ≤1.0 cm) while the other half of the
patients had tumors categorized as T1c/T2 (>1.0 cm to ≤3.0 cm). Sixty-seven
percent of the patients were HR-positive and 33% were HR-negative
(Figure). "While it lists T1a/T1b...I feel the study only had T1b because in () it lists .5cm-1cm as the tumor size.
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That's very interesting dejaboo - I didn't catch that when I read the article (rather quickly obviously, lol). Would be good to look at the original study to see for sure who was included in the study or if that was just a typo. I don't have time to research it so if someone does, have at it.
I'm planning to leave for Europe in 2 days and still have not finished packing nor do I have the itinerary figured out...yikes! 0 -
Lesliecusana, I had weekly taxol and herceptin. I got the standard taxol dose of 80 mg per meter squared. My invasive tumor was between 3 mm and 5 mm. (They couldn't say for sure because the biopsy got 2mm and the lumpectomy got 3 mm; the total invasive size would be 5 mm if the biopsy lopped off the end of the tumor.). My side effects from taxol were not bad at all. I used cold caps to save my hair. I would think with your tiny dose of taxol (awesome!) you won't even have to worry about losing your hair! There is a weekly taxol thread, although most of the women posting there have had AC first, followed by weekly taxol, and their taxol side effects seem much worse than those of us who had taxol without AC.
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Hello, I was diagnosed with Dcis, high grade, in March 2014, had a partial mastectomy 4/08/14, senital node biopsy, no cancer in the lymph nodes,, however, the cancer was upgraded to stage 1a, due to several micro- invasive foci all less than 1mm,, main focus is a 0.2cm (2mm) Her2+ , not responsive to hormone therapy. I am in the grey area for Chemotherapy plus Herceptin, due to the tumor is so tiny. I chose to have the chemotherapy (Taxol)and herceptin, followed by the radiation. The treatment will start around May 20,2014. My oncologist recommended that I get a port. I really don't want to go thru another painful procedure. Is this port really necessary?
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PatinMN, thanks for the response! I was thinking I'm the only one who decided for chemo in the less than 5mm group! I go today and plan to question my MO rationale for the dosing! For Pete's sake if I'm am doing it I want it to be enuf to do its job and make the herceptin work! And I don't have a port so lots of sticks in the future! I did get a short haircut that I like MO said hair loss possible! I'm ok with that part of it! Madee53 do you know you chemo dose? I'm trying no port for now! Got a big bruise on my forearm from my 1st one not to mention a different stick for labs too! Wish you well!
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dejaboo, What I have been told about studies is there are just not enough t1a patients out there to conduct one well that's for Her+ ones anyway! That most that are found at diagnosis are larger!
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That is probably true lesliecusana. But I dont like that they make it sound like T1as were included in this study...When it reads like they actually werent. Then they should have just said T1b.Hopefully someone that is good at reading these studies will reply & correct me if I am wrong in my interpretation.
Dancetrance have a great trip!
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I had a port, and am glad I did. With 12 weekly infusions plus 12 or 13 more herceptin only, I decided to go for it. I don't remember anything at all about the insertion of the port - I was completely out of it (they used propofol). It was tender for a while, but not bad. My first infusion was the day after the port insertion - no problems. Leslie, I'll be interested to hear what your MO says about your taxol dose.
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From someone who 24 months ago was diagnosed with DCIS minimally invasive (0.16mm invasive component), with 4% ER+ and small amount of HER2positive, all upgraded to T1a after surgery AND has since January 2014 has gone over the the dark side of metastatic HER2+++ cancer -- I'd say HER2+ cancer is evil and sneaky.
2 years ago they weren't typically offering chemo or Herceptin for people with minimally invasive DCIS. I chose a mastectomy which had good margins and sentinel nodes were negative. I went home happy after a DIEP flap reconstruction from the NORA. It's only in the last half year they realized it might be prudent to treat this group more aggressively and use Herceptin for a year. And only in the last year they've added Perjeta to work with Herceptin.
I wish I'd asked for scans of at least body and perhaps brain. From the beginning I had a lymph node under my arm that wasn't found to be a sentinel node but that had been small pea sized for years and no one was concerned. Sure enough, that one node finally got a little bigger, was then biopsied and showed HER2+ (ER-) cancer which got the ball rolling on the scans and final diagnoses. After 4 rounds of Taxotere-Herceptin_Perjeta the liver tumors are smaller, and I just got my 5th infusion yesterday and I feel pretty good. Yes, there are side effects but I'm still riding my horse and walking the dogs. House is kind of a mess. I'll be in Herceptin & Perjeta "indefinitely" (til disease progression or I don't tolerate).
HER2+++ SUCKS!
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Wow Miche, definitely makes me feel better about getting chemo& herceptin for my tiny 1.1mm strongly her2+++ tumor! I guess it's encouraging there are dr who are treating smaller t1a!
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Well MO said she wasn't sure what happened last week of 1st infusion(she was out of town)! I am suppose to be getting 70mg of taxol not 6mg. So I feel a little better!
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I'm glad you got that straightened out!
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Dejaboo - according to this summary of the Tolaney study, t1a's were included and made up about 20% of the population studied. I suspect the first report we read had a typo.
Dr. Tolaney acknowledged that the study has limitations. It was a single-arm, nonrandomized trial, and about 20% of enrolled patients had T1a tumors that already have a very favorable prognosis. Also, two-thirds had hormone receptor–positive tumors, and this may be associated with late recurrence.
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Dr. Winer suggested that the results were practice-changing. For this population, the paclitaxel/trastuzumab doublet “should be considered one of the standard strategies for recurrence prevention,” he said.
“This doesn’t mean that every single patient with node-negative HER2-positive disease has to be treated with trastuzumab and chemotherapy, and there are patients with T1a tumors who almost certainly should not be treated systemically,” he said in an interview with The ASCO Post.
The T1a population accounted for 20% of subjects, while 9% had relatively large T2 tumors. “This was not just a population of patients with tumors less than 1 cm, and in spite of that, the outcome was very favorable,” he noted.
“We think that for most women with stage I HER2-positive breast cancer, trastuzumab plus paclitaxel is an entirely reasonable, and certainly appealing, regimen because of its low-toxicity profile,” he maintained.
The APT study also “speaks to a larger point,” he said, “and that is the development of effective targeted therapies provides the opportunity not only to improve outcomes, but to back off toxicity by limiting some of the chemotherapy. The challenge now is to determine in whom a completely chemotherapy-free regimen might be a possibility.” ■
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Glad you got your Taxol dosage amount straighten out. I am curious on how the second day went without the port. How did you do?
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well decide to get port if that answers ur question! Lab tech had a hard time finding vien but infusion nurse didn't! Hope I can get it before next thurs treatment!
one are for a years worth of pricks seems worth it! 0 -
should said one arm for a years worth of pokes!
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Thank you Dancetrance. It would be interesting to know if all the T1a patients in the study had 5mm tumors...Since that is the cut off before they become T1b. My guess is all 20% were 5mm in this study...None being 1.1mm-4mm.I do like that they said: about 20% of enrolled patients had T1a tumors that already have a very favorable prognosis.
MicheTheVanquisher -I am very sorry to see your new dx. Do you feel that node had cancer when you were Originally dx in 2012 and they missed it? "From the beginning I had a lymph node under my arm that wasn't found to be a sentinel node but that had been small pea sized for years and no one was concerned. Sure enough, that one node finally got a little bigger, was then biopsied and showed HER2+"
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Hi ladies, I need your advise. I'm 37yo. I had a double mastectomy, with SNB and tissue expander placement 4/22/14. I'm ER+/PR+ >95%, HER2+++, grade 3, 0 nodes, largest IDC 2mm, DCIS multifocal and at least 1.4 cm.
I met with the oncologist who basically said he wouldn't recommend any further treatment because the risks outweigh the benefits, and I was 95% cancer free, those are good odds (his words, not mine). But he also said he hasn't seen a lot of HER2+ patients with small tumors, he was going to discuss my case with the cancer board and we will meet again in a couple weeks, so his course of action could change.
At first it sounded like a great plan, no chemo or hormone therapy, but I'm really starting to second guess everything. I've read so many women with similar diagnosis that get treatments. So what are your suggestions? Is there anyone that chose no treatments and regretted it?
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Monicas, sorry for you recent dx! As for getting treatment it's ultimately your choice if offered! I wasn't offered at first and the Her2+++ was scaring me! So went for 2nd opinion and was offered weekly taxol and herceptin! For me it's all about getting herceptin and if it has to come with a low dose of chemo so be it! I know there were risk either way I just thought it was the right choice for me! Why no hormonal treatment if ER+/PR+?
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Regarding hormone therapy, Doc said side effects outweigh benefits?? This is all new to me, maybe I need second opinion ? ?
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Monica...a second opinion is a great idea. Keep in mind though, presenting your case to a tumor board is also a great idea as well. You will be getting many opinions from the tumor board. Likewise, you may also wish to consult with some of the major medical centers, if you haven't done so already. Good luck!
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Monica, I vote second or maybe even third opinion. My diagnosis is like yours - DCIS 0/1 nodes with micro invasion of 1mm. First doctor said no chemo or Her. Doctor 2 is much more concerned about the HER2+++ and has suggested Herceptin on it's own, 4 infusions, 3 weeks apart. I start next week. She said she has not proof it will help but her gut tells her it is worth a shot. There are so few of us with DCIS and micro invasion with HER2+++ my second doctor said they would never study us. She has only a few patients in our boat and they are all doing herceptin alone, even though there no suggestion to use the drug without chemo.
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Hello, there seem to be a lot of different opinions about how to treat the the small invasive tumors that are her2+. My Dcis , high grade was upgraded to Stage 1a, due to several micro- invasive foci, all less that 1mm, and the 2mm tumor that is her2+, ER-/PR-. My oncologist also consulted with other doctors, stated he did not want to just blow off the tumors because they were so small, stated the her2+ status is the important factor. Stated he did not want me to come up with liver cancer 10 years later. Then there is the factor that the tumors are not responsive to hormone therapy. They all agreed with him, so I will be starting chemotherapy(Taxol) for 12 weeks, targeted therapy is Heceptin for one year. He also explained that using Herceptin alone tend not to be effective. Had surgery( partial mastectomy) on 4/08/2014, in California, Stanford University Hospital, Radiation will follow the chemotherapy.
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I ended up with hormone therapy only as my 3mm and 1.6mm Her2/neu highly amplified tumors, along with my DCIS, were very positive to estrogen. Sometimes, Monicas, I wonder if I should have had Herceptin or Herceptin/Taxol, but a tumor board and a separate onc, both from a National Cancer Center, who conferred with many oncs across the country, agreed with this plan. A third opinion was more on the fence and wanted to bring my case to yet another tumor board, but I thought enough was enough. Because I am doing something that is research-based and logical for the amplified estrogen, I'm at peace. I have no discernible side effects from Tamoxifen. I actually lost some weight on it-20 lbs to be exact, bringing my BMI right in the center of the normal range, and reducing fat in my body, which stores estrogen.
No one has a crystal ball, and life is too short for regrets and second-guessing. Each day is a gift. My advice is to make a decision after gathering several opinions, and trust that the decision will be the right one for you. Then, take charge of any lifestyle factors that might help enhance the course of action, and look forward.
Good luck!
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thank you for sharing your advice and experiences. I meet with my onc on Monday, but I think I'm going to forego chemo. Too much damage to my body for a very small chance the cancer spread. Then look forward to all the good that is yet to come!
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Hi Everyone.
Glad this thread is still here but sorry we all need it.
A little over and a year and a half since diagnosed and so far so good. Had a mammo, ultrasound and biopsy on the same breast last week and it was what they expected, fat necrosis. VERY grateful. Once one has cancer they need to check every suspicion they can't 100% say what it is just from an ultrasound. I was being a bit over anxious about something and pushed for the ultrasound and they had to do a mammo first. The mammo was fine in terms of the dense tissue, it just wasn't absolutely clear from the ultrasound so they had to biopsy. We are so lucky to have wonderful health care, albeit it's not as lucky we need it. . I'm going to do my best to stop being so paranoid and just appreciate so far so good. Otherwise I'm going to have a lot of holes in my breast and markers left in it from excessive worry causing ultrasounds! I still see all my doctors so that I'm seeing one of them at least every 3 months. Larger DCIS and 5mm invasive cancer, sentinel node negative, very strongly HER2+++ and both ER/PR neg. Am very glad I had lumpectomy, 12 weekly Taxol / Herceptin, 30 radiation treatments and a year of Herceptin. We'll see what happens. Yes there are some downsides: weigh gain, now have heart risk factor from having treatment, loss of hair, pre-diabetic. BUT, for me the upsides are more than worth it. It's all an individual decision we all need to live with. I initially wasn't going to do any treatment, then went for the whole thing and am glad I did. If I get it again and or worse down the road, I'll know I did all I could given the time I was diagnosed. But that's me and what I can live with. My hair's growing back thick like it was before. I'm exercising (some days more than others and always walk my dog a lot) and the other health issues are for me relatively minor. Trying to deal with it mostly with diet and exercise and finally agreed to take lowest dose of Lipitor generic for 6 months to get my cholesterol (which went up) down plus it has heart benefits. If it weren't for what I took away from some of the posts on this forum, I may not have done chemo. I was so on the fence and my oncologist was very surprised when I went back in and said yes I want to do it all: lumpectomy, chemo, Herceptin and radiation. I had finally decided I would do radiation in addition to the lumpectomy prior to accepting chemo and herceptin. And I feel so lucky I was offered and encouraged by my oncologist to do it. She was very aware it was a gray area for my diagnosis and let me know that I needed to weigh all the factors, but had just come back from the yearly MD Anderson conference where they were talking about even smaller invasive Her2+++ than mine would likely benefit from chemo / Hereptin. She offered the treatment that was being used in the study that wasn't completed at that time, but suggesting good results, which it ultimately had. I appreciate her forward thinking so very, very much. And I so appreciate everyone sharing their experience here. This is the only site I look at for personal experience and this forum in particular has been invaluable to me. I wish everyone the absolute best whichever paths we all take. Sending love and light to all.0 -
Hey montana - so happy to hear your lump was fat necrosis! I have had several similar scares - all fat necrosis. Uggh! Congratulations on the 1.5 year cancer-free anniversary. It's such a great feeling, isn't it? So glad this thread has been such a help. Love and light back to you!
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Thank you so much dancetrancer (and everyone) for the support! Am very sorry you've had several similar scares yourself, but so glad for you they turned out to be fat necrosis too. The waiting is not fun, but at least it's waiting with an excellent chance it's all ok. And yes, 1.5 yrs cancer free is great! God Willing getting to 3 yrs will be an even bigger sigh of relief.
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Leslie I am in your neck of the woods in NC (Mebane)!
I had TC plus Herceptin for my 7 mm IDC. What I really don't understand is why some doctors do not consider DCIS cancer. There was a question as to whether I had clear margins from DCIS and this nags at me all the time. They had clear margins on the IDC. I did go to UNC and I guess all you can do is go by the recommendations of your doctors who I know have your best interest at heart but boy cancer sucks!!
~Karen
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