calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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I hear ya!!!!!!!!
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Hi everyone!! Great to read so much good news of good reports months and years out!!!!! Thank you all for continuing to write. I haven't written in a while but wanted to check in to say today was my last Herceptin, God Willing. Have an appointment in Feb with my oncologist and will hopefully get the port out in latter Feb. It's been over a year since treatment started and I'm so grateful that so far so good and the treatment plan is done. I'm also extremely grateful to live near a wonderful hospital and to be able to get excellent care there. As I've said in prior posts, I was really on the fence about getting the treatment the oncologist recommended and what I took away from this forum convinced me to do the whole thing. Of course someone else could read the same posts and decide it's best not to - which is why I'm so glad and grateful dancetrancer began the forum and others have generously contributed. For me, also realizing I'm really very fortunate to even have the opportunity to decide what to do when so many people, especially in other countries, just can't even get treatment if they want it, makes me feel humble and grateful. 2104 is a year of healing for all of us everywhere I trust. Thank you all for being here.
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montana, wonderful post! So excited for you to be done with Herceptin and be getting that port out! Port removal was one of the best days ever for me!
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Dejaboo- thanks for posting. Always great to hear such news!
Montano- Congratulations on being done with the treatment. I agree that this is a great thread. Even though I am outside the range I still learnt a lot from the posts.
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Just joined the website today, although I have certainly read many posts over the past 4 years for encouragement. I can happily say I am one of the 406 participants for this clinical Phase II study: I was diagnosed with IDC on 7/20/09 with a .09 cm tumor that was Her2+ with slight ER+. I was treated at Mass General & it is now 4 1/2 yrs. later with no disease recurrence. I was grateful that my oncologist recommended my participation in this trial.
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Thank you dancetrancer, hopeful123 and everyone for your support and encouragement!! Congratulations codi10!! Am participating in a breast cancer after care free exercise program that is amazing. Very grateful for that too. In time now that Herceptin is done want to lose weight, clean up my eating much, much more and just be healthy. Onward to whatever's next, hopefully all good for all.
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Thank you, montana 8000. I meant to say that the tumor was slightly < 1 cm (.9 not .09) I was 54 at the time of diagnosis; now I am 59. Both my mom (age 94) and sister (age 69) are also bc survivors. Both of my mom's sisters had bc and my sister and I (that's all the women in 2 generations) and yet I was tested for the BRCA 1&2 gene at Mass General and was negative. Just happy to be here in the US receiving the best care possible!
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Awesome codi - welcome! We are fortunate indeed to have access to such care.
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Hi! Newly dx at the age of 33 years old. 2 cm tumor ER+, Her2+, lumpectomy, currently going through 6 rounds of TCH then radiation. Stage 1 - negative nodes
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I was t1A in June 2012 and had a mastectomy with nipple removal. Nodes were negative. No one suggested treating the HER2+ status, just the 6% of the tiny invasive component that was ER+. I chose not to take tamoxifin. 18 months later I have mets in my liver, HER2+ and ER-. Do I wish I'd done my homework better and asked for Herceptin? You bet! Everyone was so happy about the clear margins and negative nodes it was hard not to be happy myself. We've moved across the country and the docs here found the mets by exploring a an area she thought might be "cording" under my arm but was actually a swollen node. An area the oncologist on the west coast wasn't concerned about when I asked 6 months ago. Also, the cancer center here has done Herceptin trials and they are a little more focused on HER2+. My new oncologist called the ER+ = tamoxifin a "red herring". Just started herceptin, perjeta, taxotere. Bummer is I feel great, was just getting back to normal after the surgeries. Had no idea there was anything wrong.
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Miche, welcome to the thread. I am very sorry to here your cancer has returned.
(( May I ask, how many millimeters was the invasive portion of your cancer? I find it interesting that your recurrence is ER negative. I wonder if the Tamoxifen would have done anything to prevent that recurrence anyways, since it is ER-. I don't know, just thinking about it. Perhaps it may have recurred regardless of whether you took Tamoxifen or not.
P.S. I see you are on the cold caps thread, too - I had great success with cold caps and wish you the same!
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My initial diagnoses showed 6% of the invasive cancer (<5mm) to be ER+ and 65% to be HER2+ yet my oncologist suggested tamoxifin. I decided against the tamoxifen--and my new oncologist called the ER+ a red herring. Should have pain attention to the HER2 status and been on Herceptin. Tamoxifen wouldn't have done anything to the HER2 invasion.
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Miche - I'm really confused about them describing 65% of your tumor as being HER2+. Usually they will say your tumor is "X" millimeters or centimeters large. Then they will describe how strongly that tumor is ER+ based upon a percentage. Lastly, they will test the tumor for HER2 and deem it either HER2+++ or not (two types of tests may be done to confirm). Describing HER2+ as a percentage is something I've never heard of. Confusing!
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You're right, Dancetrancer, I was wrong, just writing it from memory--remembering seeing something about 65% and assuming it was referring to the HER2 at 3+ , FISH with a ratio of 6.9. My memory for numbers was all wrong! The ER+ was weakly positive 4% (AQUA at 16). Ki-67 markers elevated at 29%. The largest infiltration was 0.16mm but the entire infiltration was multifocal. Still, no large areas of infiltration and negative sentinal nodes. In short, it didn't put me into the group of getting some chemo or Herceptin. And then my Onc was pushing tamoxifen so hard I didn't think about the HER2. Sorry about the confusion.
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Ah, now it makes sense to me! If your largest infiltration was 0.16 mm that is super duper tiny! Even if multiple sites of microinvasion, you would still be classified as a microinvasion, not even t1a (unless you meant 1.6 mm). chemo and herceptin for t1a's is so controversial, it would be even less likely to be recommended for a microinvasion. I am saying all this to hopefully make you feel less upset about not getting chemo and Herceptin. I don't think many, if ANY, docs would recommend it for a microinvasion. And if you were only 4% ER+, the benefit of doing Tamoxifen would be much, much less compared to someone who was highly ER+. For what it's worth, I think you did everything you could for your particular diagnosis. Despite that, you recurred. It is so not fair! Cancer sucks.
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I am updating. I finished my last herceptin on January 20. At the beginning, of march I had a PET and 3 nodes lit up. The biopsy came back positive. It's hard not to think about "I should have just done the chemo the first time around"! I have surgery Monday then in May I start rads after that 4 taxotere/ perjeta/ herceptin.
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SLB11, I am so sorry to hear this. So you did one TC and then a year of Herceptin - right? I know it is hard, but you just can't Monday morning quarterback yourself on this. The official guidelines do not recommend chemo or Herceptin for anything under 5 mm. Doing chemo and Herceptin for our size tumors is controversial. None of us knows what is the best decision - we make the best decision we can given the information we have at the time. So many times it feels like when we make a decision we are throwing a dart at a target and going with whatever it tells us to do. If only we had a crystal ball.
It is so unfair to hear you had a recurrence in your nodes. And for it to occur just a few months after a year of Herceptin - I am shocked, too.
Did you have a PET prior to treatment? Most don't, but some do to get a baseline before treatment. It makes me wonder if you had some spread even before you had treatment, and they just missed it with the SNB. I can't believe Herceptin for a year wouldn't wipe it all out, though. So unfair. Did you have your PET post treatment just for regular screening purposes, or did you have swollen nodes present that they wanted to check out? 0 -
SLB11- So sorry to hear about the recurrence. There is literature that shows that a fraction of Her2 positive cases may not respond to herceptin but that in those cases using a combination of taxotere/ perjeta/ herceptin may work better. So it may just be that yours falls in this category so don't blame yourself about not doing the chemo. I am keeping you in my thoughts and prayers.
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SLB11 so sorry to hear of a reaccurance. I saw so many different oncologist when I was first diagnosed and everyone one of them recommended different treatment plans or no treatment plan and I remember hearing over and over "there just aren't a lot of studies on your type of cancer diagnosis". That lack of knowledge puts us all in the difficult position of having to choose our treatment plans and cross our fingers that we chose right. I think that might be one of the hardest parts of cancer! I know someone who had a very similar diagnosis as me and we both did full chemo with a year of herceptin and she is mets, there are also woman on this thread that didn't do chemo or herceptin and are cancer free...it's soooo hard to know and mostly it just seems so unfair! Please keep us posted on your surgeries and progress. Sending lots of love and will hold a place for you in my heart xoxo
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I had a PET before I started any treatment in January 2013 and August 2013, both were clear. In March 2014, it showed the positive nodes. My oncologist was shocked! I just had surgery yesterday. Thank you guys so much for the support! I will keep you updated!!
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slb11 I am completely shocked too. I hope you are recovering quickly and do keep us updated!
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Hi Dance Trancer, good on you for compiling this information!!! It shocks me a little to find that most countries (including my own) do not routinely collect more detailed information on cancer diagnoses, treatments, recurrences and survival. Wouldn't it be great to have this kind of info available at a national/international level.
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absolutely agree mjm!
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SLB11- wishing you a speedy recovery from the surgery. It is definitely shocking. It is a good thing that you were being monitored and could catch it. Sending positive vibes your way. Do keep us updated.
mjm- I couldnt agree more. This thread is definitely a great resource, even for someone like me who had 8 mm IDC. I always come back here to check on my fellow fighters and survivors.
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Hi all,
I had surgery Monday and the port placed. The port is way more sore than the surgery site, which I didn't expect!! Other than that getting back to normal!
Shawna
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Shawna, so glad you are on the other side of surgery and feeling like you are getting back to normal! And yeah...those ports can be surprisingly painful! Feel better soon!
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Shawna,
Happy to hear the surgery went well, hope the port starts feeling better. Keep us posted on your progress, sending lots of love!!!
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I am just reading the past few years of this thread! I am having a hard time with my MO saying no other treatment after Lx and Rads! 1.1mm high grade ER-PR- Her3+IDC and 1.5 cm high grade DCIS! I have appt with HER2 specialist @ Duke Dr. Blackwell this wed! Not sure if she will say the same! It seem alot of you have fought for more treatment! It's esp hard since mom was DX 9/13 with IDC and now 3bIBC and had my first mamo and now all this DX since 10/13. I'm wondering the meaning behind it all! Is it a fair warning for my future? BTW BRCA-
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Leslie- Maybe you ask your oncologist to go through the statistics for recurrence for just Lx+ rads and for Lx+rads+chemo+herceptin for your specific case. Once you have the information then you can make an informed decision. Also I believe dancetrancer had a second opinion even on her pathology, you can check her status and it has the details. Might be something for you to look into to make sure that it is only 1.1mm. You may also want to ask your oncologist about Herceptin alone, and Taxol+Herceptin (lighter version of chemo+herceptin). At this point you are doing the right thing of gathering all the information. Each doctor has his or her own bias so no harm getting more opinions.
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Ditto to what hopeful123 said, I couldn't have said it better myself. Thanks hopeful and best wishes leslie - keep us posted upon what you decide. There is no wrong answer - we make the best gut call we can based upon our situation and recommendations we receive.
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