Moonbeam Posted July 26, 2019 Posted July 26, 2019 Good Morning all. As everyone knows, my husband's results from PET/CT and MRI to lumbar spine were not great. However, trying to focus first on the spine. He was discharged on Wednesday and we are home until Sunday. On Monday, we will meet with some members of his "team" specifically, the neurosurgeon, radiation oncologist, and finally, his oncologist...whom I'm beginning to learn is the most important part of his team. Didn't meet with us while we were there for the week and we will see him Monday, but we are dealing with lung cancer and the metastasis to L%. Anyhow, they are recommending radiation first for 5 days and then the following week, a surgery/procedure to remove the lil tumor and then cement the bone at L5. This is where I don't know the lingo or terminology with this. However, I read that there should be a week or two between these two options. Meaning...radiation then surgery or surgery then radiation. Anyhow, that has had metastasis to spine, one spot, what was your treatment? What did your team do? We are getting a second opinion but can't get to them soon enough. So I'm just wanting to make sure "which comes first" and what is going to give him the best possible outcome in regards to the spine. I'm sorry if I may be making no sense. ask any questions and I can clarify or add to this. Thank you. XX
Rower Michelle Posted July 26, 2019 Posted July 26, 2019 Moonbeam- This makes perfect sense to me. Two members in my KC LC support group had spinal Mets. One person had 5 days of targeted radiation, after getting a second opinion from a major cancer center in Texas. He just finished the radiation and will continue the targeted therapy without surgery The other member had radiation, surgery, cement followed by targeted therapy and IV Zomeda to strengthen the bones The idea is to use radiation to shrink the tumor so that the surgery is “minimal”. Once the zapping takes place the pain threshold drops pretty significantly to allow better mobility and preparation in advance of surgery. Hubby has been in so much pain, the docs are probably wanting to address that issue first? Does Moffit do remote second opinions? Perhaps you could contact the Bonnie J Addairo Foundation to see if they can help grease the wheels to expedite a second opinion? They have a directory of experts in your area. The good news here is that both of my friends here are doing really great. They are pain free, with no activity restrictions. There are some pretty amazing options available to us these days. Hugs to you my friend.
Moonbeam Posted July 26, 2019 Author Posted July 26, 2019 Michelle - Thank you so much for your response. Our second opinion will be from the "major cancer center in texas" However, we don't see them until August and he can't wait that long given his back issue and pain. We are heading back to Tampa for his CT simulation, followed by, what you mentioned, 5 days of targeted radiation and then a few days after, I believe a vertebroplasty. So, yes, because he is in so much pain, even though managed the best it can be, time is of the essence. This is why I wrote this this am. I figured there are many on here who have had this issue and I could / our family can, have some peace of mind. This forum has been a blessing and godsend during our difficult times and even though not doctors and can't take it as the gospel, it sure does ease anxiety. Im so thrilled for you and your results. I so pray my husband gets those results in the coming months! XXX
Rower Michelle Posted July 26, 2019 Posted July 26, 2019 For what it’s worth the second opinion in Texas wasn’t all that the family hoped it would be. KU our NCI, had a more aggressive recommendation with a great outcome. It was a helpful reminder to me that although there are “big guns” in TX sometimes the locals can be “great cowboys” too. Let’s get that pain under control & kick a**!! You’re doing such a great job!
Moonbeam Posted July 26, 2019 Author Posted July 26, 2019 So agree with you! Have a friend who recommended them for a second opinion. We are talking with our local oncologist as we are hoping treatment can be closer to where we live. Sometimes I feel my husband may get better care at a smaller place. I just don’t know. All I do know, is I want his oncologist to have hope and the determination and knowledge to push aggressively to not give up. To keep trying. My husband is young, strong and healthy and I pray he responds to treatment. And if there comes a time when he doesn’t, let’s move on. Does that make sense? I know it does. What is KU, Michelle?
Tom Galli Posted July 26, 2019 Posted July 26, 2019 Moonbeam, We had a member, I think Judy M, who had Stage IV LC and treatment involved precision radiation to all tumors. We had another, who's name I can't recall, who had a bone met (hip I believe) and had precision radiation, then surgery to cement the bone, then follow on treatment to deal with distant tumors. When thinking about the order of precision radiation and bone surgery, radiation first seems to have some unique advantages: it can kill a tumor quickly without need for invasive procedure recovery; it can be very precise to allow margins to be effectively dealt with. Last, pain relief after radiation is almost immediately felt. So I think his team is on the right track as far as treatment order goes. Stay the course. Tom
Rower Michelle Posted July 26, 2019 Posted July 26, 2019 KU is Kansas University, it’s a National Cancer Institute in my backyard. I love having the NCI, my care team is huge, lots of wonderful free resources to support health and wellness. Sounds like things are moving in the right direction.
Moonbeam Posted July 26, 2019 Author Posted July 26, 2019 I thought it was Kansas University but wasn’t 💯. I’m feeling it is after asking you all 😘
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