Diagnosed: Myxofibrosarcoma July 11, 2014

sarcoma treatmentFrom a patient interview on Sept. 5, 2014

Christine was diagnosed with myxofibrosarcoma on July 11, 2014. She was referred to Dr. Sant Chawla and the Center by her surgeon who works closely with the Sarcoma Oncology Center. Christine’s doctor highly recommended she come to the Center for her treatment because they are the sarcoma specialists.

 

Christine shares her personal story of her experiences with the Sarcoma Oncology Center:

I like being here. I like it a lot. I had some special needs. I was really nervous and they took care of me… went above and beyond to take care of me. They made me feel really comfortable; they are really good at that and so that was really good. It’s really important to them that you are comfortable. Dr. Chawla is really invested in what he does. Dr. Kumar has got an excellent bedside manner. Dr. Quon is so nice…all the doctors here are amazing. It’s a good fit for me and I’m really glad we found this place with their specialty of course. It’s a good fit with the specialty and a good fit with the way they are with me. Their bedside manner, their community… it feels like a community here rather than the doctor’s. I’ve heard other patients say that as well.

They work as a team. I’ve never had so much quality time with doctors. They told me to make a list, they all told me. You make sure you know everything you want to ask because you’ll forget. I had a list one day, it was my second day of chemo and I asked ‘what about this’….’what about that…?’ Dr. Chawla was knocking out (answering) my questions saying what’s next…what’s next? They do a lot. It’s also a teaching facility here.

I was talking to some other people here, who thought I was so lucky to have gotten the referral here so quickly when they said they’d been waiting two years or so to find a place like this. That, to me, made me feel really lucky that my surgeon works with these guys.

When I come there are other patients already, and we are just sitting around. The way this facility is, the way that it’s open and the way everybody just sits together, you already get that (support group) a bit. I’ve learned so much. There’s a woman who comes here, that I come with and who I see every time I come here, we have the same days, and she’s gone through this; it’s been a while for her. She’s taught me so much and she’s so positive, she’s awesome. She’s been amazing help. And then there’s been another woman who comes here with her daughter and she’s told me so much information that I really think, I get that (support) sitting here, just during the treatment.

It’s very warm. It doesn’t feel like a doctor’s office. Here it doesn’t feel like that; it feels like coming to a place to read. It’s doctory, but it doesn’t feel so sterile and cold. It’s nice…if you want some privacy there are some rooms. They told me that the first time. If I wanted privacy they would set that up for me. I like that here you have that choice, but I think it would be a poor choice to be here private the whole time because of the support group feeling… that’s super important. This is the stuff you learn from people, if I had taken a more private route, there are so many things I would have missed out on.

Christine’s recommendations to new patients:

I would like for people to find this place and let the word get out and all that. Hearing other people’s stories, they’ve gone through two years with this before coming here, couldn’t find a sarcoma person. They’ve been looking…I think it would be good to get the word out.