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Metastatic breast cancer: Anyone else?
Breast Cancer | Last Active: Mar 12 3:44pm | Replies (213)Comment receiving replies
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.
Replies to "I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with..."
@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.
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!
Oh geeez! I had a similar repeated dismissals when I lived in Fl. and kept saying what is this in my left arm pit for I think it was 2 years than finally in late 2018 into 3/27/2019 there was imaging ordered and a biopsy in 1/19. It was the same LBC that was in left breast in 2012.
which I had a double mastectomy for. A lot of the dismissals for imaging is due to insurance.
Anyway, if you have good insurance that should not have been the issue. An oncologist and Breast Cancer Center affiliated with a University Hospital is ideal. This way there is a team that reviews all your issues and not just one doctor . I only have one or two Bone bc tumors found this past month. We left Fl. during the pandemic. 2 cm and the other sm. unknown as they will not biopsy it as apparently any BBC is staged at 4 & they just treat it w/ Pharma and CTs? I've managed to be in otherwise good health after 3 BC surgeries etc. is a wonder, but I do avoid processed sugars and have always eaten more vegetarian than carnivore... I have been caregiving in dif. capacities to family during my whole BC journey and it's been incredibly stressful and so now I am trying to turn the focus on my own health for a change. So I hope you are too! Best for each day to you!
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@slebonfan
That is a heartbreaking story. Prayers for you.