Terry Posted June 6, 2004 Posted June 6, 2004 I REALLY like your treatment approach. I am new to this. My husband was diagnosed with Stage IV NSC LC just a few weeks ago. I want to learn more about RFA. How did you find the doctors who did your procedures? We live in upstate NY. Although NJ is a manageable distance, I would prefer to find a doctor in New York City, where we can stay with friends. I have found via the internet a doctor in New York City who performs Gamma Knife. I asked our radiation oncologist about Gamma Knife. He says my husband needs to do Whole Brain Radiation first because of the number and size of brain tumors (4 lesions, largest is 3 cm.) Should I accept his assessment or should I pursue treatment on my own? It is hard for me to "question authority" but I can do it if it is necessary. It sounds as if you are managing your own treatment. Did you approach the RFA and Gamma Knife doctors on your own or did someone refer you? What are the scans that you do every 3 months - CT or PET? I love your philosophy to treat NSC LC as a chronic problem instead of a terminal one. Terry Quote
Geoff Posted June 9, 2004 Posted June 9, 2004 My mom just had whole brain radiation she had a lot of lesions, probably more than 8. However the radiation oncologist we saw at Sloan said that if the patient had up to 4 lesions he would consider treating them steriotactically or individually instead of whole brain. I’m not a Dr. and I don’t know your husbands case but I remember hearing our doc say that. We are going to the Sleepy Hollow branch of sloan near Terrytown. Feel free to PM me for more info. Geoff Quote
Terry Posted June 9, 2004 Posted June 9, 2004 Thanks Terri and Geoff, Thank you Terri for the detailed account of how you are handling your treatment. You are an inspiration for me and I am impressed with your logical approach. We must all find our own path and your testimony is definitely going to help us find ours. You have given me the courage and determination to take a proactive role. The fact that I had to learn about RFA and Gamma Knife from the internet and a support group, and not from the doctors, is a BIG clue. I did lots of research on RFA and the procedure seems so promising. There are a few hospitals in Boston that perform the procedure, including Mass. General. Since I have a brother who lives in Boston, I like the idea of going there. Of course, if there is anyone out there who has considered RFA and dismissed it, feel free to add to the discussion. Thank you Geoff for the feedback regarding whole brain radiation. I will be on the internet tonight researching steriotactic radiation. My instincts tell me that treating these things individually is a better approach but we went with the WBRT because my husband was so anxious to start doing SOMETHING. His headaches have decreased since WBRT and he can now get through the day without any ativan (anti anxiety medication). Being the caregiver is definitely an easier job than being the patient, but there are special challenges a caregiver struggles with. My husband does not want to know the details and would rather just do what the doctors tell him. I somehow need to find the right balance between pushing him and respecting his comfort zone. By the way Geoff, we have an appointment at Sloan-Kettering June 28. I will keep your offer to PM you in mind. Thanks all, Terry Quote
Geoff Posted June 9, 2004 Posted June 9, 2004 Terry, I found out that Rhode Island Hospital also does it which as you know is pretty close to Boston: http://www.lifespan.org/services/oncolo ... lation.htm In regards to the whole brain radiation our onc said that at least in my mom the way the tumors were situated there was probably a lot of microscopic cancerous activity which the whole brain radiation would take care of. Hang in there, I’ll be praying for you guys, Geoff Quote
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