Radiation dilemma! IMRT vs Proton

[Lisam81]

Hi, I have another radiation question if anyone has any opinions or help that would be greatly appreciated! The mapping is complete now for my dad and the tumor next to his heart causing the SVC syndrome. The verdict came back that on paper it shows IMRT would be slightly less radiation to the heart vs proton therapy. This is not at all what I had thought. IMRT on paper after the imaging and models and mapping show slightly more radiation to the lungs and less to the heart and proton shows less to lungs and slightly more to his heart. This is all on paper after the mapping and a weeks worth of the doctor figuring it out. All the studies I have read show proton spares the heart more than IMRT so I am some kind of confused on this. The doctor left it up to my dad to decide which one he wanted to go with but said it may be harder for insurance to approve proton now that his mapping shows IMRT spares the heart slightly more than proton, on paper.

I spoke to patient intake at Jacksonville proton therapy center for Dr Bradford Hoppe as recommended on here and was told by the lady since dad’s cancer is metastatic he is absolutely not eligible for proton therapy, but SBRT. This is all so confusing but something needs to be done quickly as his tumor has enlarged next to his heart. Do we push for proton despite what the radiation oncologist said his mapping outcome shows or go with what he’s recommending which is IMRT?

[Seaspray298]

I am stage iv and I just finished radiation imrt for a lymph node in my mediastinum that was pushing on my heart and esophagus. Was told any radiation to this area could cause heart problems years from now. Breast radiation patients know all about this. At our stage, not too worried about years from now. Side effects are pretty bad about 1 week after. Go on Inspire.com to get more support for this. Let me know if I can help as I am a few weeks ahead of your dad.

[Lisam81 in reply to Seaspray298]

Thank you! Do you feel that if you were offered proton therapy and could have received it that you would have chosen that over the IMRT you received?

[GMC1]

Hi again Lisa,

I am confused. What is the difference between IMRT and Steriotactics, do you know? I am sorry about the Proton not working. Do they do Cyberknife there? Being so close to his heart is the problem and I understand your confusion. Steriotactics are very easy, and quicker usually.

If "this" was new for us, I would chose Cyberknife if I had a choice, then Steriotactics, then Ptotons. I do not know anything about IMRT. I know something has to be done quickly so I don't suggest the immune drugs but they have worked wonders for some people and Ed's last scan said it was finally stable after 3 months on Opdivo. No more coughing up bloody sputum.

I have found that Medical and Radiation Oncologist don't often work together. It is like two foreign countries and sometimes you have to make the journey between them for treatment yourself. So, has anyone even suggested one of the immune drugs?

Keep us posted.

[Lisam81 in reply to GMC1]

Hi! No, proton IS still an option for my dad in Orlando but the radiation oncologist said the computer models showed IMRT would cause radiation to his heart slightly less than proton therapy but more to the lungs, so he is recommending IMRT over proton. This goes against all the research I have read on proton so I’m confused. We can still push for proton though.

I called Dr Bradford Hoppe’s office that you recommended for proton for second opinion and the patient intake lady for Dr Hoppe said that my dad isn’t eligible for proton because it’s stage IV, which confused me also?

[Denzie Moderator Volunteer]

Lisa, what you’ve shared is contrary to everything I know about IMRT vs proton therapy. I do know this- I'm not a radiologist and couldn’t begin to understand the mathematics that goes into the mapping process.

The doctor is basing his recommendations on his experience. The only question I have is this the radiologist who will be managing your dad’s treatment either way? In other words. Does this radiologist have access to both types of treatment or is he suggesting the stereotactic body radiation because they don’t have proton therapy at their site? Doctors tend to recommend only what is available through their facility.

[GMC1 in reply to Denzie]

Denzie,

Is SBRT the same sort of treatment as IMRT?

[Denzie Moderator Volunteer in reply to GMC1]

Intensity modulated radio therapy is a form of stereotactic body radiation. It uses X-rays rather than protons. It’s my understanding that proton radiation drops off as it hits the mass and the X-rays tend to travel a bit into the surrounding tissue. Does that answer your question?

[GMC1 in reply to Denzie]

Yes, I think so, thank you. When Ed had the protons, they used 4 plastic lenses shaped to varying debths, probably using one on each side, front and back. So interesting. They are given to the patients when treatment is completed. Wish I had kept one

Whereas, he has just completed whole head radiation for 6+

Buckshot size areas. I wanted Cyberknife but was advised the Steriotactics do/can effect surrounding areas to a lesser degree, but, with that many they felt the whole head would be better, especially since he had previously had 3 treated by Steriotactics.

[Lisam81 in reply to Denzie]

That is the confusing part for me too because it does go against every study I have read on proton therapy vs IMRT as well. He does have access to SBRT, IMRT and proton as it’s the proton facility in Orlando. He said IMRT is quicker and would get my dad off the table faster. When asked how much faster, he said 5-10 min faster. That’s not a huge deal to not consider proton over for my dad. He said the mapping showed IMRT distributed slightly less radiation to the heart and more radiation to the lungs than proton. That and the fact that IMRT is faster than proton per treatment is why he is recommending IMRT, though he said neither show enough radiation to the heart to cause significant issues based on mapping and “on paper”, which can change once it’s actually done as I’m sure no one can truly predict. I still feel proton might be the better choice despite what he said and it’s so confusing now.

[Seaspray298]

I don't really have an answer to your question. I go to Mayo Clinic and I trust my radiation oncologist to do what is best for me. Photons vrs. Protons!

[GMC1]

It seems to me my husband was in the pod for protons about 40 min each treatment. Five days a week for 5 weeks. The length of weeks might vary because he was in a study. One thing he had a little difficulty with was he had to have both arms over his head the 40 min. He is a big guy and this was the hardest part for him. He had some low chemo during that time.

Recently, Dr Hoppe talked with Ed's local radiologist who wanted to do more radiation and told him Ed could not tolerate more radiation to the tumor because of location to large vessels because of possible bleed out. He did say that an Intervention Oncologist might be able to put an emboli there

so he could have more radiation if necessary.

I don't know if an Intervention radiologist might have an answer for you or not. We have not gone that route yet as the immune drug Opdivo seems to be keeping him stable. We will if necessary.

You seem to be leaning toward Protons and our experience was good, you just to have to go with your gut I think. Wish Jax had helped you more.

[cbeachinn in reply to GMC1]

I'm so glad you posted this because just this week I was planning to go into my proton treatment my doctor called and said the mapping was not good and at this point I am are told IMRT would be less damaging to my body and my lungs than protons and is now suggesting I not do proton therapy even after many backflips to get the insurance company to cover it because I'm stage 4.

I too was very impressed with proton treatment on the internet versus imrt. is sort of depressing when you don't fit into a treatment protocol for a method of treatment you've gotten yourself all excited and prepared for. and I start next Monday getting the mapping and targeting done with the CAT scan all over again. A week of my life I'll never get back again wasted. but after my mapping session Monday I have a short meeting with the doctor where I plan to ask him to show me the mapping for proton vs. Imrt so that I can feel comfortable that his decision is the right one for me. There are cases where proton therapy is not best for lung cancer patients. We all want the best treatmentbut we also need the least possible damage from that treatment.

I know it's also difficult when you're fighting insurance companies and such financial issues to know whether or not the doctor is not having his opinion affected by these outside influences. Also the proton machine here locally is highly overbooked as well.

but in my case all of the issues of getting a spot in the machine and getting insurance to cover it had been handled and I was scheduled to start a proton treatment. this is strictly a result of mapping the tumor, doing all of the targeting catscans and such, then looking at all the information and seeing how the proton radiation would affect me-- particularly in that you have to breathe and hold your breath and that can move the tumor and in my case wrecking the targeting at every breath, causing a larger proton field to be needed. Where as

imrt can track through the breathing much better and more precisely treat tumors especially when they are in the upper left chest near heart and major vessels.

again thanks for all the postings on this subject since I to and going through this particular decision right now and I'm very confused about it all. but if you keep doing your research on proton therapy and lung tumor specifically you will see that it's not uncommon for this to not be the best treatment of choice for certain lung tumors.

[Lisam81 in reply to cbeachinn]

Please don’t feel IMRT is a consolation prize. I thought this at first. I was adamant about my dad receiving proton therapy. The mapping is an amazing tool to help you and it’s one I eventually came to trust. My dad’s radiation oncologist sat down with my dad and I and showed each angle and each amount of radiation each organ would receive. He explained sometimes proton is superior and sometimes IMRT is superior depending on the angle it needs to go in. In the end, my dad was blessed to receive IMRT and before he passed we found it had shrunk his tumor 30% and it was in the process of shrinking it further. IMRT was amazing for my dad and I would do it all over again for him in a heartbeat. If you cannot get proton or mapping shows IMRT is better and you trust your radiation oncologist then trust the mapping process. My dad breezed through IMRT and his tumor was pressing near his heart. I know not everyone has the same experience, but I have nothing but praise for this radiation and while I feel proton is also just as good, sometimes IMRT is comparable or better to it. I think you will do great with IMRT!!! All my best to you!!

[GMC1]

Should also say that was 5 years ago. The protocol might be different now. Husband was 77 at that time.

[judg69]

Lisa, I feel bad you are forced into this predicament and also have the question of insurance approval . The targeted radiation that I had some 6 years ago was probably similar to what you are describing as IMRT. Of course I had the radiation along with 2 years chemotherapy and surgical removal of my top right lung lobe. I was also Stage IIIA/B and thus while only marginally operable, got the approval to go ahead with the surgical removal anyway. If I am correct, seaspray and Lisa's dad are both StageIV and not normally eligible for any surgery. This thread has gotten a bit convoluted so I am not totally sure who all is inquiring about next steps, so I will simply say that at this stage I believe time is your enemy and one needs to get treatment started asap, and it sounds as though that is IMRT. Again as always, All my Best Wishes, judg69

[Lisam81 in reply to judg69]

Thank you! This is a terrible position to be put in. We decided to push for proton and go with it. My gut says proton despite what his mapping showed vs IMRT. The problem now is the radiation oncologist hasn’t even begun to try to get it approved through insurance. We just found that out today by calling insurance and we gave thr dr the go ahead 4 days ago. Wasted time now. So now he is going to force my dad to get IMRT if this drags on. Not very happy. And Moffitt dropped the ball by waiting to get insurance approval for anti nausea bag before his Alimta maintenance chemo today. He is terribly nauseous with Alimta so once again no anti nausea medicine he has received. I’m getting fed up with people dropping the ball. I know a lot of medical personnel aren’t liking me much right not but that’s too bad. I just find some of this so unacceptable. I appreciate your help and response!! All my best!