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

Posted by rraw @rraw, May 25, 2020
@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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@sequoia

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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😂🤣😂

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@sequoia

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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So true

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@auntieoakley

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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Thank you so much for this response, I've thought of it often over the past week. My uncle died from multiple myeloma, so I'm a little familiar with it, he died about 12-13 years ago. It's not a very common cancer so I'm always surprised how much I hear about it. It was a rough cancer for him, my Mom donated her stem cells for him that allowed him to live about 2 years past what he would have. The story about your friend and then your husband is incredible, I'm glad you told me.
I know my daughter didn't just have the test for the breast cancer gene, it was a panel of various ones, but is there something specific you'd recommend she get tested for?

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@rkuhn

Thank you so much for this response, I've thought of it often over the past week. My uncle died from multiple myeloma, so I'm a little familiar with it, he died about 12-13 years ago. It's not a very common cancer so I'm always surprised how much I hear about it. It was a rough cancer for him, my Mom donated her stem cells for him that allowed him to live about 2 years past what he would have. The story about your friend and then your husband is incredible, I'm glad you told me.
I know my daughter didn't just have the test for the breast cancer gene, it was a panel of various ones, but is there something specific you'd recommend she get tested for?

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I have something called cowden syndrome. Which pretty much means everyone in my fathers line got cancer. In the past they died and sometimes pretty young, but today I am still here 17 years and counting. My brother has a bad actor cancer, and he is way past his best by date. It is rare but my hat size prompted my doctor to test me along with family history.
Some weeks are definitely harder than others. Are you feeling a little more hope this week?

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@auntieoakley

I have something called cowden syndrome. Which pretty much means everyone in my fathers line got cancer. In the past they died and sometimes pretty young, but today I am still here 17 years and counting. My brother has a bad actor cancer, and he is way past his best by date. It is rare but my hat size prompted my doctor to test me along with family history.
Some weeks are definitely harder than others. Are you feeling a little more hope this week?

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I hadn't heard of cowden syndrome, I'm glad you're still encouraging others!
My daughter actually ended up in the hospital over the weekend, she was increasingly feeling bad and starting having a fever that wouldn't go away. They discovered her blood counts levels are ALL extremely low. She was able to get some concentrated care over the weekend, and now her level are so/so – some are better, some are slightly worse, and some are the same. She was scheduled to have her last round of chemo tomorrow (#6) but that is being put off for at least a week, she's not strong enough to endure that yet. So I was a mess this weekend, she's fared her treatment well so far, this threw me for a loop. On the way to see her at the hospital, I was talking to God about how much I hate cancer, and I heard this quote by Joni Eareckson Tada: "Sometimes God allows what He hates to accomplish what He loves." God holds my daughter in the palm of His hand and nothing can take her from Him, and I rest in that.

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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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Dorothy and the Wicked Witch….😂That’s Funny! Glad to know I am not the only strange chick with HER2– & HER2+ at the same time!

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