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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@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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I’m so sorry you have lost your mother.

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@windyshores

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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Oncologist says the x-ray is "reassuring." But it does not account for the pain, in my view. I am going to do further investigation starting with a PT.

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@nlb122

The time from diagnosis to surgery for me has been very long due to several factors in my large medical group. Initial confirmation of HR, PR+, HER2 - from biopsy on 6/2 until MRI changing plan from lumpectomy to mastectomy on 7/29 has been 8+ weeks. Oncologists started me with letrozole end of June due to the delay. Vacations, loss of surgeons, low staff, covid, few surgical openings at any one of the hospitals has been frustrating. While the doctors say my disease is a very slow progression, I wonder if others have experienced time to treat the same as mine. Surgery this week, but what still lies ahead?

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I am having the same issues as nlb122 at Mayo in Phoenix.. I am having to wait almost 4 months to have surgery. I have same numbers as you from my biopsy. My Oncologist put me on letrozole. The doctors say not to worry it's slow growing. From the MRI my nodes look good but Its agony waiting. I'm having a mastectomy on one side with reconstruction and a new implant on the other side.

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I had much the same experience so understand the feelings that emerge during the wait time. I had the same profile with surgery eventually almost 3 months after initial testing and final oncology appointment 12 weeks after diagnosis. At that point, I was told that chemo effectiveness can diminish to 75-80% of typical treatment. With an Oncotype score, you will be able to decide if that treatment is necessary anyway. Being 75, right breast mastectomy, no lymph node involvement, oncotype27, no need for radiation and continuation of letrozole, I feel like treatment was as successful as it was going to be. I do think about the aches and pains side effects of the meds and what else it might be, so often feel like I am floating in an unknown abyss of cancer cells just waiting around to cause havoc again. So far, the only follow up testing is a mammogram of the left side 8 months later followed by ultrasound and mri as ordered. Is there anything else that can be done at this stage of the game? I wish you well. Keep moving and doing all that seems natural and hope and pray for the best. It will be fine. Please let me know your path going forward and thanks for connecting. Take care.

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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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How did you use the algorithm?

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@janet2

I am having the same issues as nlb122 at Mayo in Phoenix.. I am having to wait almost 4 months to have surgery. I have same numbers as you from my biopsy. My Oncologist put me on letrozole. The doctors say not to worry it's slow growing. From the MRI my nodes look good but Its agony waiting. I'm having a mastectomy on one side with reconstruction and a new implant on the other side.

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Hi @janet2, it is not uncommon to have treatment (endocrine therapy and/or chemo therapy) before surgery to help shrink the tumor. This can help ensure "clear margins" for surgery, meaning that they can get the tumor and a significant margin of healthy tissue around the tumor.

How are you doing on letrozole? When will you have your surgery?

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@ilcpfightee

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

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There are several of these "predictive" algorithms online. The Tufts one looks at ipsalateral recurrence. The one below is similar. It's not as specific as, say, personal genomic testing bug relies on current data bases so somewhat useful. I had the Oncotype test done and that was reassuring. Not a guarantee against recurrence, but the low score was better news than a high score.

https://cts5-calculator.com/
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@polianad22

How did you use the algorithm?

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The Tufts algorithm looks at recurrence risk for ipsilateral cancer. To that extent it's a bit limited. I think all of these algorithms are pretty much the same in that they look at variables for which there are breast cancer data pools including age of first cancer, number of cancer-free lymph nodes, and size of cancer mass. I assume that they also assume that the cancer was surgically or otherwise removed. But here's one of the algorithms online:

https://cts5-calculator.com/
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@callalloo

The Tufts algorithm looks at recurrence risk for ipsilateral cancer. To that extent it's a bit limited. I think all of these algorithms are pretty much the same in that they look at variables for which there are breast cancer data pools including age of first cancer, number of cancer-free lymph nodes, and size of cancer mass. I assume that they also assume that the cancer was surgically or otherwise removed. But here's one of the algorithms online:

https://cts5-calculator.com/

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Thank you

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