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Posts (2)

Jul 21, 2017 · Diagnosed with sarcoma? Let's share in Cancer

@colleenyoung Yes, I feel a great deal of support from family that is not local and friends that are local. My family members have been taking shifts staying with us and helping with the kids. My mom is on her way back this week to stay indefinitely until this is all over. And local friends have been bringing meals, helping with housework, and offering to take the kids often. It doesn’t take my worries away completely, but it helps and I feel very lucky. I’ve been wondering what the process would be like if I were to call another place like Mayo. Would it be a long process of medical record exchange and reviews and wait time until someone could actually look over all of my medical history? I worry that it would delay my treatment that is scheduled to start 5 days from now. And how would sarcoma experts from Mayo be able to consult with my local team of docs?
@me67, thank you for your helpful personal advice… I’m going to look into what can be done on a consultation basis since it isn’t realistic or feasible for me to leave my kids and travel back and forth to a far away place.

Jul 21, 2017 · Diagnosed with sarcoma? Let's share in Cancer

Hi everyone. I likely have osteosarcoma but due to confusing pathology results, the jury is still out as to whether it is a primary sarcoma of bone or a secondary carcinoma metastasis from another location. I am being treated at UVA in Charlottesville, VA where there is no sarcoma clinic. I’m happy with my oncologist, but I’m scared that I should be somewhere else that specializes in sarcoma. I am a 40yo mother of 2 girls who are 8 and 5 so I also can’t even fathom how I could relocate for treatments anyway. My story goes like this… In February ’17, I noticed mild unexplained hip flexor pain. I gave it time, tried PT, and chiropractic care but it only got worse. I put myself on crutches for pain by April/May. I had an MRI on 5/15/17 that showed a lesion in my right femoral neck and that was the day that my world came crashing down. I was told to be non weight bearing because I was at risk of fracture and I had to wait to get in to see an ortho oncology specialist that was only at UVA one day per week. On 5/24/17, while waking up, I stretched and my femoral neck broke, aka, I broke my hip, just lying in bed. I was transported by ambulance to hospital and lay in bed for 7 days with a broken femur, waiting for the specialist to operate. I had a hip replacement on 5/31/17. I have been working on PT rehab and have started radiation treatments. I am all set to start chemo on 7/26 which will involve 2 cycles of 6-day inpatient infusions on Ifosfamide and Etoposide while having radiation and then will switch to 4 cycles of 3-day inpatient infusions of Cisplatin and Doxorubicin once radiation is complete. I’m scared that I am not at a sarcoma clinic and that I don’t know if I need this hard core course of chemo but I’m willing to do anything to save my girls’ mother! I’m still waiting for results from a breast biopsy to rule out breast cancer as primary site of origin. All other MRIs and PET scan are clear. My main concern is my beautiful children and their wellbeing. Thank you for starting this group @colleenyoung