Metastatic breast cancer: Anyone else?

No x-rays. Straight to MRI. I go for another consult today. I'm really just impatient for the testing I need, the PET scan and biopsy. To deal with this, I need to know what I'm looking at. I'm only 52! I have 2 girls in college and I'm just not ready to be done!

@kerirutledge did you have an x-ray first or did your docs go right to MRI? I am sorry you are dealing with this. I had a grade 3 cancer in 2015 w/LVI. I don't react to every pain but have sought assessment of hip issue and get told to go to PCP for x-ray. Keep us posted on your progress!

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.

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 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.

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 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.

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?