HER2 positive & HER2 negative: I have both at the same time

Posted by rraw @rraw, May 25, 2020

Anybody experiencing both at the same time?

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I know your daughter is glad you are on her team. I was in my 30s with my initial diagnosis, and the conversations with my mom were the best. I know you both are going through it right now so if I can offer support please let me know. The good news is with immunotherapies we are living longer with MBC. I read an article in the last few days talking about someone who was over 6 years out. To me that is hope. Is your daughter confident with her medical team? Does your daughter have children who would be concerned about genetics?

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@rkuhn

My daughter was 23 when she was first diagnosed with HER2 negative breast cancer in Nov of 2018. Had a lumpectomy right away, followed 4 rounds of chemo and 30+ rounds of radiation. Then in April of this year 2021 she was diagnosed with HER2 positive, same breast, different area, and a bone biopsy determined it's stage 4 cancer. She's having chemo #6 next week (in addition to the immunotherapy – herceptin/projetta). We do not have a history of breast cancer in my family, and her genetic markers are negative for the breast cancer gene. It's really terrible, I wish so much this wasn't happening to her.

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My heart goes out to you. My daughter was diagnosed in February age (42) with HER negative, ER/PR +. She decided on a double mastectomy with reconstruction. As a mother it is so hard to accept that your "baby girl" has to go through this. I read all the time about breast cancer and treatments to educate myself so I can feel more in control. It helps me cope. I have learned through all the reading that there is hope with all the treatments available. Everyone is different and there are miracles out there too! Keep the faith and I will pray for you mama. It's hard.

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@auksst

My heart goes out to you. My daughter was diagnosed in February age (42) with HER negative, ER/PR +. She decided on a double mastectomy with reconstruction. As a mother it is so hard to accept that your "baby girl" has to go through this. I read all the time about breast cancer and treatments to educate myself so I can feel more in control. It helps me cope. I have learned through all the reading that there is hope with all the treatments available. Everyone is different and there are miracles out there too! Keep the faith and I will pray for you mama. It's hard.

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Your daughter's diagnosis was exactly what my daughter's was almost 3 years ago. It seem like things are "out of order" for our daughters to have breast cancer. She really hopes to have children someday, but with the stage 4 diagnosis I'm not sure that'll be possible. I guess I'm the reverse, I can't research too much because of her staging, which gives her 3-5 years. Only God knows her last day here on earth, I'm so glad I don't know it, but I struggle immensely with her diagnosis. I have 4 younger children (ages 10-16) who are watching her go through this. I'm definitely praying for a miracle, they do still happen. I had a friend encourage me to find a support group for Moms with children who have cancer and I've not found one in my area (or they all meet remotely, which I don't want to do).

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@auntieoakley

I know your daughter is glad you are on her team. I was in my 30s with my initial diagnosis, and the conversations with my mom were the best. I know you both are going through it right now so if I can offer support please let me know. The good news is with immunotherapies we are living longer with MBC. I read an article in the last few days talking about someone who was over 6 years out. To me that is hope. Is your daughter confident with her medical team? Does your daughter have children who would be concerned about genetics?

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She does have a good team of doctors. I agree, treatments change and get better, but I want to be realistic and not think that I have time with her that I don't. She's not going to live a long life, she won't have children, and it breaks my heart. When she was little, I was a single mom, and we were SO close as she was growing up. She doesn't have the breast cancer gene, there isn't a history in my family. There are times I just really struggle with her reality and as her initial diagnosis date approaches, it gets harder (though I don't let her know).

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@rkuhn

She does have a good team of doctors. I agree, treatments change and get better, but I want to be realistic and not think that I have time with her that I don't. She's not going to live a long life, she won't have children, and it breaks my heart. When she was little, I was a single mom, and we were SO close as she was growing up. She doesn't have the breast cancer gene, there isn't a history in my family. There are times I just really struggle with her reality and as her initial diagnosis date approaches, it gets harder (though I don't let her know).

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Just remember, none of us have a “best by” date stamped on our back. I read research papers every day, it gives me a constant source of hope. There is an army of people around the globe working on this.
The reason I asked about children and genetics is there is other genes besides just “the breast cancer gene” that can predispose a person to breast cancer. I have one of the other genetic predispositions.
I am going to tell you a story that will hopefully give you hope. My best friend was diagnosed with an incurable cancer (multiple myeloma) in 2004. She passed after a brutal year in 2006. In 2010, just 4 years later, my husband was diagnosed with multiple myeloma. His cancer is currently under control and he is not on any treatments for it. It will start moving again, as it always does but there are a dozen treatments left in the box to treat him with, and more all the time.
I make it a point to enjoy every day with him. The day he was diagnosed the average lifespan of a myeloma patient was around 30 months. That was 11 and a half years ago. MBC is starting to get multiple tools in the box to treat with. This is making our lives better and longer all the time.

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@auksst

My heart goes out to you. My daughter was diagnosed in February age (42) with HER negative, ER/PR +. She decided on a double mastectomy with reconstruction. As a mother it is so hard to accept that your "baby girl" has to go through this. I read all the time about breast cancer and treatments to educate myself so I can feel more in control. It helps me cope. I have learned through all the reading that there is hope with all the treatments available. Everyone is different and there are miracles out there too! Keep the faith and I will pray for you mama. It's hard.

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Yes keep the faith! I had Stage 3 – exactly like your daughter. Double mastectomy etc. I'm here and last week said no cancer – that makes it 3 yrs free. I went through it with flying colors. Well, let's say I went through it. My husband remembers some pretty bad days. I wasn't thrilled about the 3 'tattoos' I had to have to set up the radiation. But I'll take 3 pin dots over cancer any day.
Emotions were on the edge going through it and I could feel crying coming on with no real reason. So I'd say ok, I'm going to cry now, but it's nothing in particular. We would almost laugh while I was crying. Five minutes later, back to reading again. We laughed a lot at the absurdity of cancer. I think about it every day. I'm thrilled to be here. You are blessed with a daughter, and I know she'll make it through as I did.

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@happy2bhear

Yes keep the faith! I had Stage 3 – exactly like your daughter. Double mastectomy etc. I'm here and last week said no cancer – that makes it 3 yrs free. I went through it with flying colors. Well, let's say I went through it. My husband remembers some pretty bad days. I wasn't thrilled about the 3 'tattoos' I had to have to set up the radiation. But I'll take 3 pin dots over cancer any day.
Emotions were on the edge going through it and I could feel crying coming on with no real reason. So I'd say ok, I'm going to cry now, but it's nothing in particular. We would almost laugh while I was crying. Five minutes later, back to reading again. We laughed a lot at the absurdity of cancer. I think about it every day. I'm thrilled to be here. You are blessed with a daughter, and I know she'll make it through as I did.

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That's wonderful news! Thanks for sharing. I can tell you have a positive attitude and I know that makes all the difference. Blessings to you!

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Yes. One breast was Her2+ and one was Her2- I called them “Dorthy and the wicked witch!”

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@angieklima

Yes. One breast was Her2+ and one was Her2- I called them “Dorthy and the wicked witch!”

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Comic relief is so important. Lol. Thank you.😂

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@auntieoakley

Comic relief is so important. Lol. Thank you.😂

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Humor is so important for us going through this journey. I had one breast mastectomy. I am now known as the Unaboober 🤣

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