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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zolamiller7 | @zolamiller7 | Jan 1 11:23pm

HI I had Breast Cancer in 2008 which was sucessful and it came back in 2019
as MBC-so I have spinal,rib,hip fractures and skull tumors.Have Xgeva
Ibrance,Fasolodex,and 2 others that did not work and am on Ihertu now.
Its hard to find a MBC support group which I would really like as the issues and treatment are different. Have you found one?

REPLY
2 replies
windyshores | @windyshores | Jan 2 4:34am
In reply to @zolamiller7 "HI I had Breast Cancer in 2008 which was sucessful and it came back in 2019..." + (show)
@zolamiller7

HI I had Breast Cancer in 2008 which was sucessful and it came back in 2019
as MBC-so I have spinal,rib,hip fractures and skull tumors.Have Xgeva
Ibrance,Fasolodex,and 2 others that did not work and am on Ihertu now.
Its hard to find a MBC support group which I would really like as the issues and treatment are different. Have you found one?

Jump to this post

@zolamiller7 have you tried breastcancer.org? There are dedicated threads that are only for those with MBC.

How was yours found/diagnosed?

I hope you find breastcancer.org helpful!

REPLY
leighhall | @leighhall | Jan 2 12:32pm
In reply to @zolamiller7 "HI I had Breast Cancer in 2008 which was sucessful and it came back in 2019..." + (show)
@zolamiller7

HI I had Breast Cancer in 2008 which was sucessful and it came back in 2019
as MBC-so I have spinal,rib,hip fractures and skull tumors.Have Xgeva
Ibrance,Fasolodex,and 2 others that did not work and am on Ihertu now.
Its hard to find a MBC support group which I would really like as the issues and treatment are different. Have you found one?

Jump to this post

Hi! I have the same problem as you. I had mastectomy in 2014. No radiation or chemo, took tamoxifen about 3 years. It caused too many side affects at work. I started having problems 3 years ago. The doctor checked for heart problems, no checking for cancer even when I told him it didn’t feel like a heart problem. He knew I had breast cancer but never checked for that. Symptoms kept getting worse, went to a different doctor 4 months later & she ran a whole bunch of tests and found Mets to lungs , ribs, spine, hips. I was on Ibrance & Letrozole for over a year & a half until it quit working. They tested me & found out the cancer had a Pik3CA mutation. I am now in a stage 1 clinical trial of a drug that targets it. I have been on it about a month, no side effects yet. Hopefully it works. Only my close family members know about my diagnosis no one to really discuss things with. I don’t want my family to worry about it. Doing ok otherwise.

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1 reply
Zebra | @californiazebra | Jan 2 2:07pm

Metastatic BC patients: Keep an eye on @leeann66 as she's in a stage 3 clinical trial for Tropion (other clinical names too). It's for MBC patients when other treatments have failed. She's had really good results so far with tumors disappearing. Side effects are tolerable. Here's a link to that discussion to read her own comments about it all. Her last update was 12/10/23 after her most recent scan.
https://connect.mayoclinic.org/discussion/something-new-in-the-treatment-arsenal/?pg=1#chv4-comment-stream-header

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slebonfan | @slebonfan | Jan 7 5:13am

I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with 28 lymph nodes removed, chemo and radiation. My chemo was not completed because I was allergic and my Oncologist said he was fine with it because I had enough treatments. I also did 35 days of radiation and was on tamoxifen for 4 years. During those 4 years I started having pain my my right thigh and hip. I was referred to PMR by my primary and then to several different PT's. I was also given steroid injections in my hip and groin and did pool therapy. The pain was just getting worse and nothing was helping. I was given gabapentin and muscle relaxers and no relief. I didn't want to take any opioids or narcotic pain relievers because I wanted them to figure out what was causing this pain. I went from walking 4 miles per day to having a cane and then having to crawl up my stairs. My primary sent me for a 2nd opinion and that Dr knew my Dr and did absolutely nothing but send me back to him. I kept asking for images or MRI or anything to look and see what it was and kept being told it was from my hip, there was a tiny spur. He actually told me he can't order an MRI on my thigh! Finally my PT sent a note and told him I should be sent to Orthopedics because there didn't seem to be any soft tissue problems. He VERY reluctantly sent me and they did an X-ray of my hip which went low enough to show the 4.9 cm lesion in my femur. I was sent for an MRI of my femur (the test I was told they couldn't do) I Saw my results on the portal and ended up waiting a week to talk to someone in Orthopedics because the Dr was on vacation and got tired of waiting so called my Oncologist. He looked at the MRI and asked me if I could get to Rochester the next morning for a PET scan. I was told to stay off my leg as much as possible because there was a pathological fracture in my femur. The results of the PET scan showed it was in my hips, sacrum, iliac crests, liver and cervical spine. I had surgery a week later to have a rod put in my femur and I'm on Kisqali, Letrozole and Xgeva now for the rest of what life I have.

REPLY
4 replies
Zebra | @californiazebra | Jan 7 5:47am
In reply to @slebonfan "I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with..." + (show)
@slebonfan

I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with 28 lymph nodes removed, chemo and radiation. My chemo was not completed because I was allergic and my Oncologist said he was fine with it because I had enough treatments. I also did 35 days of radiation and was on tamoxifen for 4 years. During those 4 years I started having pain my my right thigh and hip. I was referred to PMR by my primary and then to several different PT's. I was also given steroid injections in my hip and groin and did pool therapy. The pain was just getting worse and nothing was helping. I was given gabapentin and muscle relaxers and no relief. I didn't want to take any opioids or narcotic pain relievers because I wanted them to figure out what was causing this pain. I went from walking 4 miles per day to having a cane and then having to crawl up my stairs. My primary sent me for a 2nd opinion and that Dr knew my Dr and did absolutely nothing but send me back to him. I kept asking for images or MRI or anything to look and see what it was and kept being told it was from my hip, there was a tiny spur. He actually told me he can't order an MRI on my thigh! Finally my PT sent a note and told him I should be sent to Orthopedics because there didn't seem to be any soft tissue problems. He VERY reluctantly sent me and they did an X-ray of my hip which went low enough to show the 4.9 cm lesion in my femur. I was sent for an MRI of my femur (the test I was told they couldn't do) I Saw my results on the portal and ended up waiting a week to talk to someone in Orthopedics because the Dr was on vacation and got tired of waiting so called my Oncologist. He looked at the MRI and asked me if I could get to Rochester the next morning for a PET scan. I was told to stay off my leg as much as possible because there was a pathological fracture in my femur. The results of the PET scan showed it was in my hips, sacrum, iliac crests, liver and cervical spine. I had surgery a week later to have a rod put in my femur and I'm on Kisqali, Letrozole and Xgeva now for the rest of what life I have.

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@slebonfan
That is a heartbreaking story. Prayers for you.

REPLY
eku | @eku | Jan 8 7:06am
In reply to @slebonfan "I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with..." + (show)
@slebonfan

I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with 28 lymph nodes removed, chemo and radiation. My chemo was not completed because I was allergic and my Oncologist said he was fine with it because I had enough treatments. I also did 35 days of radiation and was on tamoxifen for 4 years. During those 4 years I started having pain my my right thigh and hip. I was referred to PMR by my primary and then to several different PT's. I was also given steroid injections in my hip and groin and did pool therapy. The pain was just getting worse and nothing was helping. I was given gabapentin and muscle relaxers and no relief. I didn't want to take any opioids or narcotic pain relievers because I wanted them to figure out what was causing this pain. I went from walking 4 miles per day to having a cane and then having to crawl up my stairs. My primary sent me for a 2nd opinion and that Dr knew my Dr and did absolutely nothing but send me back to him. I kept asking for images or MRI or anything to look and see what it was and kept being told it was from my hip, there was a tiny spur. He actually told me he can't order an MRI on my thigh! Finally my PT sent a note and told him I should be sent to Orthopedics because there didn't seem to be any soft tissue problems. He VERY reluctantly sent me and they did an X-ray of my hip which went low enough to show the 4.9 cm lesion in my femur. I was sent for an MRI of my femur (the test I was told they couldn't do) I Saw my results on the portal and ended up waiting a week to talk to someone in Orthopedics because the Dr was on vacation and got tired of waiting so called my Oncologist. He looked at the MRI and asked me if I could get to Rochester the next morning for a PET scan. I was told to stay off my leg as much as possible because there was a pathological fracture in my femur. The results of the PET scan showed it was in my hips, sacrum, iliac crests, liver and cervical spine. I had surgery a week later to have a rod put in my femur and I'm on Kisqali, Letrozole and Xgeva now for the rest of what life I have.

Jump to this post

@slebonfan
Thank you for sharing your diagnosis story with us. It must have been difficult to go over this again. How are you feeling now? I hope the side effects of the meds you listed are mild on you. Are you back on your daily walks? I'm trying to do 2 miles a day and I feel happy on the days I can.
Sending hugs and prayers.

REPLY
tessspike | @tessspike | Jan 8 8:19am
In reply to @slebonfan "I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with..." + (show)
@slebonfan

I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with 28 lymph nodes removed, chemo and radiation. My chemo was not completed because I was allergic and my Oncologist said he was fine with it because I had enough treatments. I also did 35 days of radiation and was on tamoxifen for 4 years. During those 4 years I started having pain my my right thigh and hip. I was referred to PMR by my primary and then to several different PT's. I was also given steroid injections in my hip and groin and did pool therapy. The pain was just getting worse and nothing was helping. I was given gabapentin and muscle relaxers and no relief. I didn't want to take any opioids or narcotic pain relievers because I wanted them to figure out what was causing this pain. I went from walking 4 miles per day to having a cane and then having to crawl up my stairs. My primary sent me for a 2nd opinion and that Dr knew my Dr and did absolutely nothing but send me back to him. I kept asking for images or MRI or anything to look and see what it was and kept being told it was from my hip, there was a tiny spur. He actually told me he can't order an MRI on my thigh! Finally my PT sent a note and told him I should be sent to Orthopedics because there didn't seem to be any soft tissue problems. He VERY reluctantly sent me and they did an X-ray of my hip which went low enough to show the 4.9 cm lesion in my femur. I was sent for an MRI of my femur (the test I was told they couldn't do) I Saw my results on the portal and ended up waiting a week to talk to someone in Orthopedics because the Dr was on vacation and got tired of waiting so called my Oncologist. He looked at the MRI and asked me if I could get to Rochester the next morning for a PET scan. I was told to stay off my leg as much as possible because there was a pathological fracture in my femur. The results of the PET scan showed it was in my hips, sacrum, iliac crests, liver and cervical spine. I had surgery a week later to have a rod put in my femur and I'm on Kisqali, Letrozole and Xgeva now for the rest of what life I have.

Jump to this post

I am stage 4 with hip and femur mets, found 2 years ago. Pain developed in November and became so severe I was hospitalized. I simply had to go for opioids, but have gotten much relief for now. The docs think much of it stems from back spinal stenosis and spurs, so I am headed to an ortho/onco specialist today for a treatment plan. My onco believes the Kisqali and fulvestrant are still working. Life is going on and God is in in control. I’m living each day vs projecting a future that I don’t know!

REPLY
1 reply
eku | @eku | Jan 9 5:30am
In reply to @tessspike "I am stage 4 with hip and femur mets, found 2 years ago. Pain developed in..." + (show)
@tessspike

I am stage 4 with hip and femur mets, found 2 years ago. Pain developed in November and became so severe I was hospitalized. I simply had to go for opioids, but have gotten much relief for now. The docs think much of it stems from back spinal stenosis and spurs, so I am headed to an ortho/onco specialist today for a treatment plan. My onco believes the Kisqali and fulvestrant are still working. Life is going on and God is in in control. I’m living each day vs projecting a future that I don’t know!

Jump to this post

Hello @tessspike ,
could you update us after your visit, please? I am also having increased hip pain and my last scans said, something along the lines of, to expect a pathological fracture in the spine. I don't know what specialty to go to to talk about these. E.g. how to manage pain, what kind of exercises I can do to strengthen the relevant areas, or what kind of exercises/activities to avoid to prevent a fracture,... Kiddo was asking about going to bowling the other day and I had to tell him I probably cannot do it 🙁

REPLY
1 reply
tessspike | @tessspike | Jan 9 8:55am

Hi again! It seems finding the exactly appointed specialist can be tricky while living in a large metro area with a great choice of medical support! I know that is the reverse for so many so I am truly thankful for choices. The specialist yesterday is more focused on hips, and after several xrays he agrees with my oncology team that my biggest problem is the stenosis and bone spurs on my spine compressing nerves that were also highly aggravated by the radiation I did on my hip in late December! I do not have fractures, which is great news, so now he is urgently referring me to a spine doc with good onco experience to see about treatment. I'm open to surgery, PT, anything to get to snuggle grandbabies again and DRIVE! I am so sorry you are suffering and having such a struggle getting help. Blessings to you with prayers for a clear path to treatment for you, @eku!

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