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??

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

Zebra | @californiazebra | Apr 3, 2023

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

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resort | @resort | Jan 9, 2023
In reply to @eku "If I am not mistaken, lymph node involvement does not mean metastatic breast cancer. It was..." + (show)
@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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1 reply
eku | @eku | Jan 9, 2023
In reply to @resort "I was recently diagnosed with Grade 3 HR positive breast cancer. I had mastectomy. On pathology..." + (show)
@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!

Jump to this post

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.

REPLY
1 reply
resort | @resort | Jan 8, 2023
In reply to @windyshores "I had breast cancer in 2014, grade 3 with lymphovascular invasion. I had a double mastectomy,..." + (show)
@windyshores

I had breast cancer in 2014, grade 3 with lymphovascular invasion. I had a double mastectomy, no chemo or radiation, hormone treatment only. With arthritis, osteoporosis and fractures, I have a lot of bone pain. How do we ever know to ask for a bone scan for MBC? I am sorry you are dealing with this!

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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!

REPLY
1 reply
wandering | @wandering | Dec 23, 2022

I have not had the surgery to bolt my jaw. I am elderly (78 on Sunday) and figure I might die before I go through that. Before or if I have it done I want to talk to patients of the oral surgeon before I do that. He said it could be a 7 hour surgery, at least a week in the hospital, and several weeks with no solid food. Oh joy. I might have it done at some point if my jaw gets unbearable. So far I'm OK. I've been in the hospital 4 different times since I was diagnosed with metastatic breast cancer and have no desire to make a return visit. Just on hold at the moment.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2022
In reply to @wandering "I was on Xgeva for 6 years.  Caused me to have osteonecrosis of the jaw (ONJ). ..." + (show)
@wandering

I was on Xgeva for 6 years.  Caused me to have osteonecrosis of the jaw (ONJ).  Very serious.  Will eventually need to have my jaw bolted with a metal plate.  ONJ is a major side effect of Xgeva so you might want to check on that.

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Hi @wandering! Welcome back. So good to hear from you. Although I'm saddened to hear that you are dealing with osteonecrosis of the jaw (ONJ). With the jaw bolted are you still able to eat and chew or are you using a feeding tube?

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wandering | @wandering | Dec 16, 2022
In reply to @wandering "Rae3: welcome to our group. I suppose not where you wanted to be after 16 years..." + (show)
@wandering

Rae3: welcome to our group. I suppose not where you wanted to be after 16 years but ---. Anyway, I too am getting xgeva shots (every three months) and faslodex every month. My tumor markers are on the rise so my dr is looking into something else. Have an appointment next month so we should have a plan after that. Keep in touch and keep that good attitude.

Jump to this post

I was on Xgeva for 6 years.  Caused me to have osteonecrosis of the jaw (ONJ).  Very serious.  Will eventually need to have my jaw bolted with a metal plate.  ONJ is a major side effect of Xgeva so you might want to check on that.

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1 reply
meme5 | @meme5 | Nov 21, 2022
In reply to @colleenyoung "@meme5, here are some related discussions that you may be interested in: - Ribociclib: Looking for..." + (show)
@colleenyoung

@meme5, here are some related discussions that you may be interested in:
- Ribociclib: Looking for information about efficacy and side effects https://connect.mayoclinic.org/discussion/rebociclib/
- Ibrance and Liver Lesions: What's your experience? https://connect.mayoclinic.org/discussion/ibrance-and-liver-lesions/
- Ibrance and Letrozole: Newly Diagnosed Treatment https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/
- Abemaciclib (Verzenio) and fulvestrant (Falsodex) Treatment https://connect.mayoclinic.org/discussion/abemaciclib-and-falsodex-treatment/
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

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Thank you.. very helpful info!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022
In reply to @meme5 "So I met with my oncologist yesterday. He wants me back on letrozole, which I took..." + (show)
@meme5

So I met with my oncologist yesterday. He wants me back on letrozole, which I took for five years. My MBC is still estrogen positive. Also a new pet scan to have a new base to compare from the old one in July before the lymph nodes were removed. Then scans every 3-4 months. Also after pet scan may put me on either Kisquali, Ibrance or Verzinio. I m checking with my insurance (Medicare RX) to see which drugs they cover and co pays. My drs office does have someone who deals with insurance and pharmaceuticals to obtain a co pay I can afford.
I would like to know how others have faired on these drugs. Was one better than the other as far as side effects? Does your body eventually adjust to the side effects so they become easier? Thanks for any impute. I am glad to now have a plan in place.

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@meme5, here are some related discussions that you may be interested in:
- Ribociclib: Looking for information about efficacy and side effects https://connect.mayoclinic.org/discussion/rebociclib/
- Ibrance and Liver Lesions: What's your experience? https://connect.mayoclinic.org/discussion/ibrance-and-liver-lesions/
- Ibrance and Letrozole: Newly Diagnosed Treatment https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/
- Abemaciclib (Verzenio) and fulvestrant (Falsodex) Treatment https://connect.mayoclinic.org/discussion/abemaciclib-and-falsodex-treatment/
- Deciding whether to go on abemaciclib (brand name Verzenio) https://connect.mayoclinic.org/discussion/hi-and-a-question-about-abemaciclib-brand-name-verzenio/

REPLY
1 reply
eku | @eku | Nov 10, 2022
In reply to @miles5513 "Today, Nov. 10, 2022 I get the results of the PET Scan I had for the..." + (show)
@miles5513

Today, Nov. 10, 2022 I get the results of the PET Scan I had for the metastatic breast cancer that is in my liver. I pray results are good. If anyone else has MBC please reply what treatments are receiving. I appreciate replies. I am on Keytruda, a drip every 21 days. Chemo was suspended because blood work came back liver enzymes were high. I was diagnosed with MBC in June, 2022. I had a complete mastectomy in May of 2019. Never thought I would get MBC. My lymph nodes were clear with mastectomy; however my ondex? Was high at 27. Anyone else have other types of treatment for MBC? Thank you for your replies & God Bless. Miles5513

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I, too, pray your results come back good.

Not all MBC are the same. Mine is ER/PR positive, HER2 negative. I'm on Verzenio and anastrazole. The first couple of months were difficult (diarrhea, hot flashes, etc.) but then the body adjusts I guess. I have no problems with these two. I space verzenio and the meals about an hour.

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