HER2 Positive-anyone 10 years out?
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Hello. I had a lumpectomy to remove a very small hormone positive and HER2 negative DCIS in 2023, but I am 9 years out from the HER2 positive and hormone negative breast cancer that was treated in 2016. I still think of all the women dealing with BC (which is why I I am back here today) and always fear recurrence but I take better care of myself and in some ways, feel healthier than ever.
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Thank u for giving us hope! 9 years is amazing! What treatment did you have?
I'm 2 years out. Very small tumor with large area of high grade DCIS
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Snm, it seems that you had a similar diagnosis to mine. I haven't been on this forum for ages and our diagnosis used to be posted automatically. Not sure why that changed. Here is what I copied from my profile :
01/2016 Invasive or Infiltrating Ductal Carcinoma (IDC) Left, 1cm, Stage IA, Grade 3, 3 clear nodes, ER-, PR-, HER2+
I had a lumpectomy, three months of weekly taxol and trastuzumab, radiation and a year of trastuzumab every three weeks.
02/2023 Ductal Carcinoma In Situ (DCIS)Left, Stage 0, Grade 3, ER+, PR+
Another lumpectomy in the same breast but no more radiation in that breast. My onco didn't think tamoxifen was necessary but a yearly mammo and ultrasound.
Denny123, it sure is good to hear from women like you! I wish you many more years. You certainly seem to know how to make the best of them 🙂
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hi Mam how you now?
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@chandkousar75 It looks as though k4katz hasn't been active in our community since 2011. Do you have a specific question we can help you with?
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Hello Ladies, checking in sending you love and strength miss everyone. Haven't been here since last year but l have been here when l was first diagnosis 2007. If someone reading this, don't give up you got this! and please stay off Dr.Google come here for encouraging words.
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@hopefaith1 Hope that you are doing okay. I do use google for explanations for a ton of terms and possible solutions. I am not one to believe in snake-oil treatments and take all with a grain of salt.
I am also on a lot of online support groups and do learn a lot there.
I am at 23+ years of MBC de novo.
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hi everyone, I'm at a cross roads with treatment decision. im diagnosed with mild foci of idc and dcis which was classified as stage 1 er&pr negative her2 positive breast cancer my oncologist recommend no chemotherapy no radiation and told me the targeted therapy with herceptin is in a grey area, is there any ladies out there that has refused herceptin and how are you doing now? also for the ones who did what side effects did you experience im especially worrying about the effects of the heart.
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Shorty, I did do herceptin and it wasn't bad at all. Something to consider if you decide to do it is to have them run the infusion for an hour instead of a half hour. Some gals who did have problems with herceptin had the duration of the infusion increased to 90 minutes and it really, really helped. My first infusion was run at 30 minutes but it felt wierd so they increased the infusion time to 60 minutes.
As far as heart concerns, I had a MUGA scan every 3 months and I think once every 3 months is standard protocol. Here is a description that I found which explains a little more about a MUGA scan. "This mode of imaging uniquely provides a cine type of image of the beating heart, and allows the interpreterto determine the efficiency of the individual heart valves and chambers. MUGA/Cine scanning represents a robust adjunct to the now more common echocardiogram".
I was triple positive and I am now 16 years out. I would get a second opinion on treatment recommendation.
Sending you positive wishes.
Elizabeth
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@shorty123 I have been on Herceptin for 20 years, sometimes alone and otherwise with a chemo. I have an echo every 3-4 months (tons easier than a MUGA scan), and my heart is fine.
I have no side effects from it and have my infusion for a half hour. There is a Herceptin injection available, but the side effects from those can be hard.
I am at almost 24 years of Stage 4 MBC de novo and credit my longevity to Herceptin.
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@ denny123& cowgirl13 Thanks for responding.. I know everyone is different and im glad you all are doing well. I am just wondering because it was all dcis if taking herceptin with all the side effects and possibly heart issues or continue monitoring.. sigh!!
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@shorty123 All treatments have a long list of possible problems. Since I have been on Herceptin for over 20 years, I do follow it closely. And the problems are rare. You should get an echo (which is lot easier than a MUGA) every 3 or 4 months. And if your ejection fraction is low, you can discontinue Herceptin for a few months, and then get retested.
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@shorty123 In my 20+ years of Herceptin, my EF went down only one time, but must have been a fluke since it went right back up. My EF is always in the mid 60's which is excellent.
Actually, every treatment has a very long list of possible problems. If one lady out of a million had a problem, that has to be documented. So it is best to not dwell on the possibilities of something bad happening.
Herceptin is a miracle and very easy. I think that it is worth it to get it just for the possibility of avoiding any recurrence.
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@shorty123 Good luck and keep us posted!
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celebrating 12 years 4 months since my diagnosis of ER/PE-HER2+ stage II breast cancer. I started coming to this site back in 2013 and kept “searching” for survivors with my diagnoses. I’m so happy to be here and post today. Love ❤️
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@girlstrong luv it! Thank u so much for returning, means so much to me!
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@girlstrong - Congratulations on 12+ years! That is wonderful news, and we are so happy for you. Thank you for sharing this hopeful update with everyone.
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