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??

Interested in more discussions like this? Go to the Breast Cancer Support Group.

windyshores | @windyshores | Dec 6, 2023

In reply to @sirene "What was your original diagnosis? Was it in your nodes then? 🙏🏻" + (show)

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.

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)

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

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/

chickenmom10 | @chickenmom10 | Dec 6, 2023

In reply to @zolamiller7 "Greetings- my cancer came back after 12 yrs in the ribs,spine,hip and skull - it was..." + (show)

Sorry to hear your cancer came back. What kind of was your first cancer diagnosis?

windyshores | @windyshores | Dec 5, 2023

In reply to @zolamiller7 "Having a hard time finding a support group for Metatastic Breast Cancer-the treatment is intense and..." + (show)

@zolamiller7 have you discovered breastcancer.org?

windyshores | @windyshores | Dec 5, 2023

In reply to @resort "Thank you very much for your reply. I’m most concerned of the word “lymphovascular invasion present”...." + (show)

@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!)

zolamiller7 | @zolamiller7 | Dec 5, 2023

Greetings- my cancer came back after 12 yrs in the ribs,spine,hip and
skull - it was not monitored well and its spreads-At lst very painful but
with 3 drugs-Ibrance/Fasolodex,Xloda,Orsercu its slowed down a bit but
the Xgeva (every 3 mos) has helped heal @ 25%-Radiation to the skull
lower back adn thinking of more to L2,L femur, and hip but with chemo
Inhertu I
feel like I dont want to do both. Has anyone done both at once?
Seems like overload. thanks

Colleen Young, Connect Director | @colleenyoung | Dec 4, 2023

In reply to @zolamiller7 "Having a hard time finding a support group for Metatastic Breast Cancer-the treatment is intense and..." + (show)

@zolamiller7, you're in the right place to connect with other women living with metastatic breast cancer. I moved your post to this discussion:
- Metastatic breast cancer: Anyone else?
https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/
I did this so you can easily read the stories of other MBC members and connect with members like @eku @resort @miles5513 @leeann66 @meme5 @wandering @adanab @boogz @tessspike @ampeltekian @hockeymom25 @mjwhearts22 @mssewest and more.

Zola, I look forward to getting to know more about you. Is this a recent diagnosis for you? What treatment are you on? How are you doing?

zolamiller7 | @zolamiller7 | Dec 4, 2023

Having a hard time finding a support group for Metatastic
Breast Cancer-the treatment is intense and the issues deep
Would really like to be in a group for women w/ MBC.Thanks

miles5513 | @miles5513 | Apr 3, 2023

I have metastic triple negative breast cancer. I am being treated with Keytruda & cancer Dr. Is considering a?Chemo. Drug with Keytruda. I am scheduled for a CT scan this week April 3rd, 2023. Anyone else diagnosed with Metastic Triple Negative Breast Cancer? What treatment(s) receiving? Thank you for any replies.