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.

@resort

I was recently diagnosed with Grade 3 HR positive breast cancer. I had mastectomy. On pathology report, it says "lymphovascular invasion present". I also had micromestatatis on sentinel node. No other lymph nodes removed during the surgery. I do not know how common and how significant this "lymphovascular invasion" means. Did you doctor share more information with you about this?

Thanks!

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If I am not mistaken, lymph node involvement does not mean metastatic breast cancer. It was discussed at a conference and a patient advocate said the use of the word "metastasis" for lymph node involvement in reports is highly confusing (or alarming) for the patients and would be better if avoided. Do you think you can message your surgeon about this for a formal clarification (and relief)?
I hope all is clear after your mastectomy and wish you a speedy recovery, and a healthy life.

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@eku

If I am not mistaken, lymph node involvement does not mean metastatic breast cancer. It was discussed at a conference and a patient advocate said the use of the word "metastasis" for lymph node involvement in reports is highly confusing (or alarming) for the patients and would be better if avoided. Do you think you can message your surgeon about this for a formal clarification (and relief)?
I hope all is clear after your mastectomy and wish you a speedy recovery, and a healthy life.

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Thank you very much for your reply. I’m most concerned of the word “lymphovascular invasion present”. It means cancer is present in blood. Don’t know how common it is.

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Sorry to hear about your mets. I hope your chemo was approved and you are improving. Prayers for you.

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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.

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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

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@zolamiller7

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

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@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?

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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

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@resort

Thank you very much for your reply. I’m most concerned of the word “lymphovascular invasion present”. It means cancer is present in blood. Don’t know how common it is.

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@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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@zolamiller7

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

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@zolamiller7 have you discovered breastcancer.org?

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@zolamiller7

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

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

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