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SRS vs WBR and does it matter who does the radiation?
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SRS vs WBR and does it matter who does the radiation?

› Forums › General Melanoma Community › SRS vs WBR and does it matter who does the radiation?

  • Post
    • July 20, 2013 at 12:15 am
    Janet Lee
    Participant

      My husband, Don, was diagnosed Stage 4 in January, had radiation to his pelvic area, had Cyberknife on his first brain met, which then had to be surgically removed. He has a lot of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two new small brain lesions.

      My husband, Don, was diagnosed Stage 4 in January, had radiation to his pelvic area, had Cyberknife on his first brain met, which then had to be surgically removed. He has a lot of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two new small brain lesions. But one month later, two more new brain lesions have showed up.

      We decided this week to move to from Dana Farber (our oncologist very unexpectedly left there) to Mass General and Dr. Keith Flaherty, who we've heard a lot of good things about. 

      Initial recommendations were to do WBR, but there are so many questions and concerns about WBR, and the trend seems to be more and more toward doing SRS whenever possible. There are many pieces to this problem-solving puzzle, such as timing, what if Ipi doesn't work, getting the brain stable for PD-1 trials, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions, and that is what we will probably do. 

      My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don has had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

      We are staying positive and optimistic but the nuances involved in fighting this disease are mind-boggling. Learning from the people on this forum has been a life-saver in more ways than one!

      Janet

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    • Replies
        • July 20, 2013 at 12:45 pm
        awillett1991
        Participant
          Janet,

          I’m so sorry you guys just keep getting hit and hit with this. When I had my SRS in November it was explained to me that the radiation oncologist is the one who designs the specific program for your tumor. Then during the prodedure all of the many, many radiation beams focus from all around on that one spot where the tumor is to minimize damage to healthy cells. I’d think you’d want someone with some knowledge and experience. Each center seems to think their machine is the best and there are differences (you can google) between whether you have a plastic mesh frame that bolts to the table, or a metal frame that bolts to your head. I’m not aware of any scientific paper saying one is better than another, maybe someone can chime in on that and WBR.

          For myself I do reserve WBR a last ditch effort. I’m not really sure if its as effective with Mel either, I don’t know know. Certainly more risk.

          Warmly,
          Amy

          • July 20, 2013 at 12:45 pm
          awillett1991
          Participant
            Janet,

            I’m so sorry you guys just keep getting hit and hit with this. When I had my SRS in November it was explained to me that the radiation oncologist is the one who designs the specific program for your tumor. Then during the prodedure all of the many, many radiation beams focus from all around on that one spot where the tumor is to minimize damage to healthy cells. I’d think you’d want someone with some knowledge and experience. Each center seems to think their machine is the best and there are differences (you can google) between whether you have a plastic mesh frame that bolts to the table, or a metal frame that bolts to your head. I’m not aware of any scientific paper saying one is better than another, maybe someone can chime in on that and WBR.

            For myself I do reserve WBR a last ditch effort. I’m not really sure if its as effective with Mel either, I don’t know know. Certainly more risk.

            Warmly,
            Amy

            • July 20, 2013 at 12:45 pm
            awillett1991
            Participant
              Janet,

              I’m so sorry you guys just keep getting hit and hit with this. When I had my SRS in November it was explained to me that the radiation oncologist is the one who designs the specific program for your tumor. Then during the prodedure all of the many, many radiation beams focus from all around on that one spot where the tumor is to minimize damage to healthy cells. I’d think you’d want someone with some knowledge and experience. Each center seems to think their machine is the best and there are differences (you can google) between whether you have a plastic mesh frame that bolts to the table, or a metal frame that bolts to your head. I’m not aware of any scientific paper saying one is better than another, maybe someone can chime in on that and WBR.

              For myself I do reserve WBR a last ditch effort. I’m not really sure if its as effective with Mel either, I don’t know know. Certainly more risk.

              Warmly,
              Amy

              • July 20, 2013 at 3:20 pm
              POW
              Participant

                Janet, SRS is a much more complex and technically challenging treatment than is WBR, especially with multiple small mets. It's like the difference between an eye dropper and a fire hose. Furthermore, SRS needs an experienced team that includes a neurosurgeon so they can custom-design the treatment so as to avoid hitting critical regions of the brain (each person's brain anatomy is a little different so it helps to have a neurosurgeon looking at the images). Since Don has decided to make Mass General your primary melanoma center and they are the ones who are recommending SRS, I would go to them. After all, it's only one or two visits for SRS– it's not like going 5 days a week for 2 weeks for WBR.

                Just my 2 cents. 

                • July 20, 2013 at 3:20 pm
                POW
                Participant

                  Janet, SRS is a much more complex and technically challenging treatment than is WBR, especially with multiple small mets. It's like the difference between an eye dropper and a fire hose. Furthermore, SRS needs an experienced team that includes a neurosurgeon so they can custom-design the treatment so as to avoid hitting critical regions of the brain (each person's brain anatomy is a little different so it helps to have a neurosurgeon looking at the images). Since Don has decided to make Mass General your primary melanoma center and they are the ones who are recommending SRS, I would go to them. After all, it's only one or two visits for SRS– it's not like going 5 days a week for 2 weeks for WBR.

                  Just my 2 cents. 

                  • July 20, 2013 at 3:20 pm
                  POW
                  Participant

                    Janet, SRS is a much more complex and technically challenging treatment than is WBR, especially with multiple small mets. It's like the difference between an eye dropper and a fire hose. Furthermore, SRS needs an experienced team that includes a neurosurgeon so they can custom-design the treatment so as to avoid hitting critical regions of the brain (each person's brain anatomy is a little different so it helps to have a neurosurgeon looking at the images). Since Don has decided to make Mass General your primary melanoma center and they are the ones who are recommending SRS, I would go to them. After all, it's only one or two visits for SRS– it's not like going 5 days a week for 2 weeks for WBR.

                    Just my 2 cents. 

                    • July 20, 2013 at 4:11 pm
                    ecc26
                    Participant

                      I would expect that as with any technique skill and experience matters. Having said that, it also depends very much on your comfort level. I agree that SRS is only a couple of appointments vs 5 days a week for multiple weeks so it's really not as much of a sacrifice as far as that is concerned. There are differences in the machines, but I don't know enough about them to say anything useful, but for me and my brain, I think I would try to go where the most experienced/specialized person/team is. Small mistakes can be costly with the brain.

                      I was not eligible for SRS/gamma knife due to the number of brain mets so I had to go with WBR, but I may be headed for SRS for "leftover" disease at a later date. We'll see what my MRI shows in a few weeks. If I end up going for SRS it will definitely be to a very experienced team/center. 

                      If you don't mind me asking, why did you choose to change to Mass General rather than just going with a different  oncologist at Dana Farber? I'm curious because we had a consultation at Dana Farber when we were hoping to get into a PD1 trial. We found out the day before the appointment that we wouldn't be eligible because of the MRI but kept the appointment anyway because we figured we might as well get their opinion on how to proceed. We're in the middle of NY state so they're not convenient at all but they do seem to be one of the best melanoma centers in the country, so I'm just curious about why you didn't stay with one of their other doctors.

                      Best of luck moving forward

                      -Eva

                      • July 20, 2013 at 4:11 pm
                      ecc26
                      Participant

                        I would expect that as with any technique skill and experience matters. Having said that, it also depends very much on your comfort level. I agree that SRS is only a couple of appointments vs 5 days a week for multiple weeks so it's really not as much of a sacrifice as far as that is concerned. There are differences in the machines, but I don't know enough about them to say anything useful, but for me and my brain, I think I would try to go where the most experienced/specialized person/team is. Small mistakes can be costly with the brain.

                        I was not eligible for SRS/gamma knife due to the number of brain mets so I had to go with WBR, but I may be headed for SRS for "leftover" disease at a later date. We'll see what my MRI shows in a few weeks. If I end up going for SRS it will definitely be to a very experienced team/center. 

                        If you don't mind me asking, why did you choose to change to Mass General rather than just going with a different  oncologist at Dana Farber? I'm curious because we had a consultation at Dana Farber when we were hoping to get into a PD1 trial. We found out the day before the appointment that we wouldn't be eligible because of the MRI but kept the appointment anyway because we figured we might as well get their opinion on how to proceed. We're in the middle of NY state so they're not convenient at all but they do seem to be one of the best melanoma centers in the country, so I'm just curious about why you didn't stay with one of their other doctors.

                        Best of luck moving forward

                        -Eva

                        • July 20, 2013 at 4:11 pm
                        ecc26
                        Participant

                          I would expect that as with any technique skill and experience matters. Having said that, it also depends very much on your comfort level. I agree that SRS is only a couple of appointments vs 5 days a week for multiple weeks so it's really not as much of a sacrifice as far as that is concerned. There are differences in the machines, but I don't know enough about them to say anything useful, but for me and my brain, I think I would try to go where the most experienced/specialized person/team is. Small mistakes can be costly with the brain.

                          I was not eligible for SRS/gamma knife due to the number of brain mets so I had to go with WBR, but I may be headed for SRS for "leftover" disease at a later date. We'll see what my MRI shows in a few weeks. If I end up going for SRS it will definitely be to a very experienced team/center. 

                          If you don't mind me asking, why did you choose to change to Mass General rather than just going with a different  oncologist at Dana Farber? I'm curious because we had a consultation at Dana Farber when we were hoping to get into a PD1 trial. We found out the day before the appointment that we wouldn't be eligible because of the MRI but kept the appointment anyway because we figured we might as well get their opinion on how to proceed. We're in the middle of NY state so they're not convenient at all but they do seem to be one of the best melanoma centers in the country, so I'm just curious about why you didn't stay with one of their other doctors.

                          Best of luck moving forward

                          -Eva

                          • July 22, 2013 at 10:00 pm
                          aldakota22
                          Participant

                            From my understanding there is not much difference in the SRS procedures.Sort of like Coke or Pepsi. I know it is a tough choice where to go but trust in Dons ultimate decesion.Will pray that all goes well.As for choice of Drs. I did see a segment on TV where Dr. Keith Flaherty is who is very influential in the targeted treatment of melanoma.I myself would feel as I am in very good hands with him as my onc.Beat the Beast.     Al

                            • July 22, 2013 at 10:00 pm
                            aldakota22
                            Participant

                              From my understanding there is not much difference in the SRS procedures.Sort of like Coke or Pepsi. I know it is a tough choice where to go but trust in Dons ultimate decesion.Will pray that all goes well.As for choice of Drs. I did see a segment on TV where Dr. Keith Flaherty is who is very influential in the targeted treatment of melanoma.I myself would feel as I am in very good hands with him as my onc.Beat the Beast.     Al

                              • July 22, 2013 at 10:00 pm
                              aldakota22
                              Participant

                                From my understanding there is not much difference in the SRS procedures.Sort of like Coke or Pepsi. I know it is a tough choice where to go but trust in Dons ultimate decesion.Will pray that all goes well.As for choice of Drs. I did see a segment on TV where Dr. Keith Flaherty is who is very influential in the targeted treatment of melanoma.I myself would feel as I am in very good hands with him as my onc.Beat the Beast.     Al

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