Diagnosed with sarcoma? Let's share

Hi @suzanneb, caregivers are always welcome. By your sharing your and your husband's experience, other people who are newly diagnosed with Ewing's-like sarcoma will know they are not alone. It is so helpful to find fellow unicorns. How often do you return to Mayo for check-ups now that he is 7 years post treatment?

Thanks!
We were up in April for a round of scans and the next time they will see him is in two years. His dr said that at this point my husband, Travis, would be more likely to find something to check out before they would. He said soon he won't be scheduled for regular scans and they will see him as needed if we call.
Makes me happy and gives me anxiety all at once. He's never been worried about a scan, but I've gotten so used to them for reassurance!

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

You need to get into Mayo Clinic, in my opinion. They have non-ivasive radiation (proton beam therapy) and all of my doctors were sarcoma doctors. They saved my life. There is a good Mayo in New York - Rochester. Get in there ASAP before you do that other radiation that is invasive. Good luck, Wendy.

Hi @wendy76, welcome to Connect.
How frightening this must all be. We're here and we're listening. You may consider getting a second opinion at Mayo Clinic at one of our 3 campuses in MN, FL or AZ http://mayocl.in/1mtmR63 Our sarcoma experts may also be able to consult with your cancer care team locally. It's worth a call to find out your options.

Wendy, do you have friends and family close by to help you and your girls while you're in treatment?

@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.

If you decide to go the Mayo route, you should ask one of your local doctors to call and make the arrangements. My husband was under the care of a local Mohs surgeon for Squamous Cell Carcinoma - Spindle Cell. When the local dr decided that it was beyond the scope of local medicine he called Mayo. We live 6 hours away. When we arrived, we had an appt with a Dermatologist, Radiation Oncologist, Chemo Oncolgist, General Surgeon and Plastic Surgeon - all at once - in the same room. While Mayo is certainly accommodating, without the local doctor's liaison, I don't think we could have done that on our own.

Get your doctor to recommend you to Mayo and you will get in faster. Plan on spending the day there because you will see all the doctors in the same day. They are all so advanced. Good luck. Let us all know what you do and decide.

Hi @wendy76,
You're asking good questions. Each person and situation is different. If you call Mayo Clinic http://mayocl.in/1mtmR63, they can answer your questions specifically tailored to your situation. Gaybinator and Me67 are quite right that it can help to have your doctor call, but it is not mandatory that a referral be made by a doctor. You can call to ask your initial questions.

Thinking of you today, Wendy. I know today you started chemo. I'm sure it was a long day. Just wanted to let you know that we're thinking of you.