HER2- and ER/PR+

Posted by beautybldr @beautybldr, Aug 3, 2022

I have just been given this diagnoise and am looking for info on treatment

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@windyshores

My oncologist said PCP should do x-rays to start. The x-ray will show arthritis. I have 7 vertebral fractures, 3 since my cancer, and those are attributed to osteoporosis. Good luck to you!

ps what is unusual is that the hip pain only happens with pressure, as with lying on it, not with movement

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Hi, I have the same kind of pain so laying in bed at night (I sleep on my side) gets uncomfortable. They Diana’s bursitis. I have cancer in my lower spine (L5) and small lesions I’m both hips but they said the pain is from bursitis. Exercising my hips helps reduce the pain. Good luck hope that is helpful!

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@windyshores

@zolamiller7 So sorry you are dealing with this. I hope you have good care and feel good about your doctor.

If you don't mind, how did you know to get tests on your bones? And what tests? I am having increasing hip pain that is different from arthritis. Not anxious yet but feel like I will get it checked.

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The bone scan is called DEXA. The DEXA scan will give you a score on bone density & the chance for fractures. Some of the AI’s or hormone suppression meds can cause bone loss. I just had a scan before starting on meds. It can help you decide which medicine you would do better with. Best wishes on your journey!

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@rene1636

The bone scan is called DEXA. The DEXA scan will give you a score on bone density & the chance for fractures. Some of the AI’s or hormone suppression meds can cause bone loss. I just had a scan before starting on meds. It can help you decide which medicine you would do better with. Best wishes on your journey!

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Thanks but I am all caught up on DEXA's and on Tymlos for bones. I was on AI's for 5 years and stopped almost 3 years ago. I was curious about scans for mets. DEXA's aren't used for that, I don't believe.

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@windyshores

Thanks but I am all caught up on DEXA's and on Tymlos for bones. I was on AI's for 5 years and stopped almost 3 years ago. I was curious about scans for mets. DEXA's aren't used for that, I don't believe.

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Thanks all. I have a PCP appointment tomorrow. I have been caring for my mother, who died a few days ago. I am going to get an x-ray but that will be misleading since I have arthritis. I will ask for a PET scan at some point.

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@windyshores

Thanks all. I have a PCP appointment tomorrow. I have been caring for my mother, who died a few days ago. I am going to get an x-ray but that will be misleading since I have arthritis. I will ask for a PET scan at some point.

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I am so sorry for your loss.

I have mets to the bones and they do a PET on me every few months to check on the metastasis. They inject me with "contrast" and after about 3 hours do the scan. DEXA is not used for checking bone mets. I sincerely hope that you don't have it but it'd be nice if you could get that PET out of the way soon.

Probably it varies from person to person, but I did not have any bone pain before the diagnosis and my diagnosis came de novo (I was stage 4 from the start).

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@windyshores

Thanks all. I have a PCP appointment tomorrow. I have been caring for my mother, who died a few days ago. I am going to get an x-ray but that will be misleading since I have arthritis. I will ask for a PET scan at some point.

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I am sorry to hear about your mom. Losing my mom was was really hard thing for me.
I am really glad you are pushing for that PET scan.

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@callalloo

P.S. I used the 'calculator algorithm on the Tufts website and it yielded a very low risk of recurrence. Which is very reassuring as I declined radiation and anti-hormone drugs. And my oncologist didn't suggest chemo after the OncotypeDX results.

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What is the site for that? I can't find it online.

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X-ray of two hips and SI joint showed only mild degenerative changes. I messaged my oncologist. Yes losing my mother is hard and hard to focus on my own health right now.

Concerned about contrast with PET.

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@ilcpfightee

What is the site for that? I can't find it online.

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I don't have it available. Someone posted the link on Mayo Connect and I clicked on it there. It looked like a similar algorithm used in the U.K. If I find either, I'll post it/them.

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@ilcpfightee

What is the site for that? I can't find it online.

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Here's the link to the recurrence algorithm on Tufts University's website.

https://www.tuftsmedicalcenter.org/ibtr/

What I found interesting was that I didn't do chemo, radiation or drugs and I entered my data for 'with drugs' and 'without drugs' and it yielded less than a 1% difference in risk of recurrence either way!

That was reassuring since the 'rule of thumb' is that the anti-hormone therapy 'may' reduce the risk of recurrence by 40-50%. And it correlated with the low recurrence risk from my OncotypeDX test.

If you enter different data, including age, you can see how the risk 'prediction' changes and why it's critical that young females, many of whom don't even get breast exams or mammos until their late 30s, to be made aware of the importance of screening for lumps and oddities. The same cancer I had would be far more aggressive in a young woman, possibly due to higher estrogen levels?

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