Radiation vs Proton radiation - 1262279

borntosurvive
Posts:52

I'm going to begin radiation on my reasonably large R lung tumour, and lymph nodes in the center of my chest and also upper rh of my chest. (I also have one node in my neck that may or may not be included in this round).

My question is this. Friends overseas keep urging me to check out 'proton' radiation instead. The radiologist explained to me that for my needs, there's not much difference.

For me to seek proton radiation, I would have to begin a search overseas, which I'm not keen to do.

Can you explain what the difference to me, with my needs?

Forums

JimC
Posts: 2753

borntosurvive,

Proton beam radiation is the expensive "new kid on the block" in radiation treatment. As Dr. West described it:

"Proton beam therapy is a technique that allows radiation to be delivered to a particular depth within tissues and then stop, minimizing radiation "in front of" and "behind" the target point (I've heard proton beam therapy described as similar to a light saber, going out to a point and then stopping, while radiation would be more like a laser beam, affecting everything in its path -- although I think the light saber analogy isn't quite right in that proton beam radiation shouldn't deliver much radiation leading up to the target point either). It does allow very detailed administration of radiation to tight areas and is particularly great around the eyes, and it's also used for some rarer children's cancers, I believe. It's being used more and more for prostate cancer, but the problem is that it's not clear that it provides benefits beyond many other better studied and more widely available tools." - http://cancergrace.org/forums/index.php?topic=788.msg4102#msg4102

As he also describes in that post, the proton beam facilities are very expensive to build, so it is being marketed to many patients for whom it does not add a significant marginal benefit. Certainly the cost and inconvenience of traveling overseas would be a major factor in your decision.

In a subsequent post in that thread, Dr. Goldberg cites an early study which suggests some benefit, but she concludes:

"It is much too premature to suggest that proton beam treatment is better than IMRT or SBRT (intensity modulated or stereotactic body radiation therapy). It is unlikely to be worse, though, by the same token. But definitely more costly."

Good luck with your treatments.

JimC
Forum moderator

cards7up
Posts: 636

They normally wouldn't do radiation of any kind on a very large lung tumor unless it was pressing on something that would be causing pain. Targeted radiation which proton radiation is, is targeted to one specific area and also wouldn't normally be used in chest radiation since there are so many lymph nodes. I think you should have this discussion with your radiation onc. Even if they don't have proton, I'm sure they have some type of targeted (SBRT) radiation. Take care, Judy

Dr West
Posts: 4735

Jim raised the right points here. Proton beam radiation is unquestionably more expensive, but it's not clearly better than conventional and still quite advanced radiation techniques like IMRT (intensity modulated radiation therapy) for lung cancer and most other common cancers. The challenge is that it is marketed very aggressively because the centers cost so much that the people need to recoup their $200M investments, which you can't do if you limit yourself to the few clinical situations in which proton beam RT is actually a clearly superior choice. So you market the hell out of it, provide vague innuendos that newer and more expensive is better, and take advantage of the fact that people are inclined to believe that more expensive must be superior. You can certainly use some dizzying physics theories to provide a plausible smokescreen in the absence of actual evidence it's better.

It's possible that additional studies will ultimately demonstrate that proton beam radiation is superior for lung cancer and other common cancers, but not necessarily. A study in prostate cancer showed it was clearly NOT more effective and was associated with worse side effects than more readily available IMRT, perhaps because the more sophisticated software for more mature radiation platforms allows better tailoring of the radiation field than most current proton centers, which have more rudimentary software to guide the process.

This isn't sour grapes, by the way. Our own center was approached as the first choice place for a proton beam facility by a private group wanting to build in Seattle, but our radiation oncologists saw that the cost couldn't be justified by the limited group of patients best served by protons. They concluded you would need to market it to people beyond its demonstrated place, and that's exactly what's happening.

-Dr. West

borntosurvive
Posts: 52

Thank you so much Jim and Dr. West, for your excellent explanations! I feel totally confident in the treatment I will be getting.

cards7up, the main reason I wanted to go for the radiation is that throughout my treatments, which pretty much didn't do the job we hoped, I've had a terrible cough. There are lymph nodes pressing on my windpipe which is probably what is causing that cough. It drains me of my energy and makes me miserable. Good quality of life is very impossible with it.

This radiation is some type of targeted, as she explained that they might have three beams that are all focused on the one spot, but from three different locations and directions, merging together at the selected point.

I'm going in on the 24th for the planning set up.

The radiation will take about 2.5 weeks. She thinks she can get the tumour and the two locations of lymph nodes and MAYBE also the one lymph in my neck, depending on the strength she'll have to use. If not, she can do the neck separately after this series.

catdander
Posts:

born, I know how difficult life can be with a significant cough alone, can't imagine knowing it's because of cancer. I've got a cough that drains energy, it hurts, and it's difficult going out knowing it could happen anytime. I hope radiation treatment gets rid of it so you can live a bit more normally.

Janine

borntosurvive
Posts: 52

Thank you catdander! I'm just hoping they'll start the radiation soon (my prep appt is the 24th) and that I'll feel some relief from the cough at least pretty fast. Although I'm under the impression radiation doesn't necessarily work that fast, since they won't be doing another scan for 2.5 months afterwards. My fingers are crossed, and I'm praying!

catdander
Posts:

I wonder since the target is the trachea if you should be ready for the radiation to cause problems with swallowing. The irritation may start 2 or 3 weeks after the beginning of radiation and can be mild or really affect your eating. Anytime radiation is directed near the throat there's a good chance it will cause burning (like a sunburn) inside the throat. The associated discomfort can be mitigated at least in part by preparing with things such as:
Don't scratch your throat with things like chips, toast or salty like chips (i.e. get your chip on now have the ice cream ready for later).
There's a drugstore compounded throat numbing mix known as magic mouthwash that can help if swallowing becomes painful. There's liquid Sucralfate that, I believe helps with lowering acid that doesn't usually cause a problem but would if your esophagus becomes irritated.

I don't mean to bring you down but want you to be prepared. From what I've read on here some radiation oncs don't prepare people properly before hand. So...

Your cough could stop quickly or it could take some time it's a tossup. Radiation does continue to work after the treatments are done. Scans are held back usually 3 months to let the inflammation go down which always happens. But sometimes pain goes away very quickly which I hope it does.

Janine

Dr West
Posts: 4735

To clarify, that's PET scans that tend to be done at 3 months or later, while CT scans are often done 3-4 weeks after radiation is completed. This is because the radiation often continues to shrink cancer for several weeks after it's completed, though people can experience some symptomatic relief from debulking within a week or so (sometimes just days); as Janine noted, the inflammation that typically follows radiation therapy is often very hard (essentially impossible) to differentiate from active cancer on a PET scan, and that takes months to dissipate.

-Dr. West

borntosurvive
Posts: 52

The lymph in my neck is probably located vertically below the outer side of my cheekbone. It actually hurts at times, probably from pressing on the bone, and feels like a little egg in there.

I'll definitely remember your advice about the chips (not my thing anyway) and ice cream (definitely my thing!) and I'll try to get that miracle mouthwash mixed up. Being in Australia, they don't have it here, so I have to see a compounding chemist, which we do have locally.

They warned me about maybe having to eat softer food and that swallowing may be a bit more difficult. Foods may seem very dry, so wash them down with liquids.

By the time I have another scan, I'll be at the 12 month mark of the first year of my dx. I'd love to think we could get a little bit of traveling in, even just enjoy my life more.

Thanks for your advice and support.

Nancy