1. < Breast Cancer

Metastatic breast cancer: Anyone else?

Posted by rae3 @rae3, Oct 6, 2016

Hello...I am new to this site. I had BC originally in 1989 with lumpectomy, chemo and radiation. After 4 months of pains, thought to be muscular from lots of tennis, xrays revealed cracked vertebraes in the spine and led to MBC diagnosis, to the bones. I have been receiving xgeva and faslodex injections once a month since February 2015. One round of radiation in August to the hip eliminated that pain by reducing the tumor. Just wondering if there is anyone out there in a similar situation and how are you doing??

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eku | @eku | Dec 6, 2023

Hello @zolamiller7
1. Have you checked if your hospital/clinic offers an MBC support group? Mine did for a while and it was my favorite.

2. I've just received this today: May be I'll "see" you there 🙂
https://www.survivingbreastcancer.org/event-details/mbc-support-group-with-nancy-gaulin?fbclid=IwAR1RAdtnmfkxr902aXEZ3BQlJnuttpyBgUd2Mt2C_DCOiAOQ3GH39kBMNWw

3. There is a newly diagnosed MBC support group (if you are in the first 2 years of your diagnosis): https://www.facebook.com/groups/288605145721462

4. Project Life has some great online programs where you meet with fellow MBC diagnosees:
https://www.projectlifembc.com/

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sirene | @sirene | Dec 6, 2023
In reply to @windyshores "@resort I had lymphovascular invasion and am 9 years out from diagnosis. It is helpful to..." + (show)
@windyshores

@resort I had lymphovascular invasion and am 9 years out from diagnosis. It is helpful to know if it is in the lymph or blood vessels, and also if it is "focal" (meaning only around the tumor) or "extensive." I have read that LVI can be seen as equivalent to one positive lymph node but don't know how accurate that is. It is possible that surgery removes LVI. One of my docs said that the significance lies more in the fact that those cells showed an ability to "go somewhere." But many of us with LVI do fine. It sounds scary but docs never even mentioned it to me: I had to ask. (I also wondered if the biopsy could create the appearance of LVI!)

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What was your original diagnosis? Was it in your nodes then? 🙏🏻

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1 reply
windyshores | @windyshores | Dec 6, 2023
In reply to @sirene "What was your original diagnosis? Was it in your nodes then? 🙏🏻" + (show)
@sirene

What was your original diagnosis? Was it in your nodes then? 🙏🏻

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No it was not in my nodes. Grade 3 mixed IDC and ILC with some DCIS, 1,5cm, ER+ PR+, HER2-, Oncotype 8. LVI was in lymph vessels and focal. I did 5 years letrozole after two mastectomies.

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1 reply
sirene | @sirene | Dec 6, 2023
In reply to @windyshores "No it was not in my nodes. Grade 3 mixed IDC and ILC with some DCIS,..." + (show)
@windyshores

No it was not in my nodes. Grade 3 mixed IDC and ILC with some DCIS, 1,5cm, ER+ PR+, HER2-, Oncotype 8. LVI was in lymph vessels and focal. I did 5 years letrozole after two mastectomies.

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How did they find the recurrence?

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1 reply
windyshores | @windyshores | Dec 6, 2023
In reply to @sirene "How did they find the recurrence?" + (show)
@sirene

How did they find the recurrence?

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I was responding about LVI, not stage 4. I do not have recurrence (despite the thread topic). I often ask how anyone knows, but it seems people mostly seem to find out via imaging for another reason! Sorry for the tangent.

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1 reply
sirene | @sirene | Dec 6, 2023
In reply to @windyshores "I was responding about LVI, not stage 4. I do not have recurrence (despite the thread..." + (show)
@windyshores

I was responding about LVI, not stage 4. I do not have recurrence (despite the thread topic). I often ask how anyone knows, but it seems people mostly seem to find out via imaging for another reason! Sorry for the tangent.

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Thanks for the clarification. I misunderstood.

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1 reply
windyshores | @windyshores | Dec 6, 2023
In reply to @sirene "Thanks for the clarification. I misunderstood." + (show)
@sirene

Thanks for the clarification. I misunderstood.

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@sirene I should probably stay out of a thread on stage 4, to avoid confusing people...I just saw a post on LVI come up...

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slebonfan | @slebonfan | Dec 8, 2023

I've also got Metastatic Breast Cancer.

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2 replies
eku | @eku | Dec 9, 2023
In reply to @slebonfan "I've also got Metastatic Breast Cancer." + (show)
@slebonfan

I've also got Metastatic Breast Cancer.

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@slebonfan
I'm sorry about your diagnosis. A friend of mine says "welcome to the worst group with the best people in it".
Would you like to share your story? When was your diagnosis? What is your subtype and sites of metastases? What are you prescribed?
I hope you are well mentally and physically. 🌻

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2023
In reply to @slebonfan "I've also got Metastatic Breast Cancer." + (show)
@slebonfan

I've also got Metastatic Breast Cancer.

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@slebonfan, I add my welcome. Like @eku, I look forward to learning more about you and how you are doing.

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