Metastatic breast cancer: Anyone else?

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 🙁

I would talk to my doctor about this, compression fractures are painful if they happen. This kept me out of the saddle for a year, now I must be very careful (walking only) but I can occasionally ride if I can make the time. Since I refuse to take opioids except in extreme situations, I have been given lidocaine patches and those help a lot. Sadly this is a common product of MBC, my doctor says walking or swimming are the best things to keep my spine as healthy as possible. Swimming is out so walking it is. I also remember to be careful walking down stairs or hills as that is more impact. Thankfully we have a fabulous orthopedic clinic 60 miles away.
Are you having spine pain? Do you have lesions or loss of bone density?

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.

Hi @leighhall, that's amazing that the stage 1 clinical trial drug is not (yet) causing any side effects. Do you know the name of the drug or the clinical trial? I'd be interested in learning more. It sounds like it might be a targeted therapy for Pik3CA specific mutation. Is it?

Hi Colleen.
Yes it targets the Pik3CA mutation. I started it Dec. 18 so I don’t know how long it will take for side effects. I think they are still recruiting patients for it. I take 3 100mg capsules twice a day, then a fulvestrant shot every 2 weeks.

I would talk to my doctor about this, compression fractures are painful if they happen. This kept me out of the saddle for a year, now I must be very careful (walking only) but I can occasionally ride if I can make the time. Since I refuse to take opioids except in extreme situations, I have been given lidocaine patches and those help a lot. Sadly this is a common product of MBC, my doctor says walking or swimming are the best things to keep my spine as healthy as possible. Swimming is out so walking it is. I also remember to be careful walking down stairs or hills as that is more impact. Thankfully we have a fabulous orthopedic clinic 60 miles away.
Are you having spine pain? Do you have lesions or loss of bone density?

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.

Welcome, @mjwhearts22. It is my understanding that metastasis to the skin can sometimes be treated, but not cured. Have you had any treatments like electrochemotherapy, special dressings or even antibiotics? These may be options depending on a variety of factors. Do you have pain?

I had stage 1 BC IN 2015-2016. Recently I began having upper back pain. I was thinking pinched nerve, poor posture over a laptop, etc. An MRI revealed cancer in vertebrae and ribs. I'm impatiently waiting on more tests, as I only found out 5 days ago. So...I am in the boat with you.