Proton Radiation: share your experiences
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I have an extended family member who got standard radiation in the 1970's for Hodgkin's Disease. She was in her twenties then and is now in her late sixties and living a nightmare. She has had to get a pacemaker and is on "full-time" inhaled steroids, due to pulmonary fibrosis. She has been told by the medical people that this is all the result of the chemo and radiation she had in her twenties. When I expressed concerns about radiation damage to my providers, and described to them what I see her having to go through, I was told that it is apples and oranges and that I should not use a radiation standard from the 1970's as a comparison to what might happen today. None the less, this does still happen to people who get radiation, I think it is just less common and fewer people get these problems down the road, but some still do. For this reason, I think it is still very important to be aware of the long term side effects and to do whatever possible to reduce the risk. My understanding is that protons deliver something like 60% less radiation (by current, not 1970's standards) to tissue surrounding the tumor area, since they are able to target with protons so much more precisely than with photons/x-rays.
While my extended family member was certainly helped, and is probably alive today, due to the treatment she got in the 1970's, her life has still been extremely difficult. The constant fear of recurrence and now the late developing side effects from the radiation have really, really, lowered her quality of life. She has days now when she can hardly move, hardly breathe, and feels just plain "fried out". While improvements have been made with radiation therapy, they are not enough and the topic needs to continue to stay out there.
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bumping this thread
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I went for a consult at the proton therapy facility and was told that I wasn't a good candidate for it. Would cause just as much burning if not more. It is the only facility in Arizona so I am thinking it's too busy for an old lady with reconstruction needing whole breast radiation
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Santabarbarian, I know this is probably too late for your situation, but I also considered proton therapy for left-sided ca. I live in a city with several well-regarded treatment centers, including trad and proton machines. After consulting top specialists at both, as well as my MO, I was told that the proton machine cannot accommodate the breath-hold the way that the trad machine does, and also doesn't do IMRT; at least this is at the proton facility in my city. I also read this interesting article in the New York Times and this article, and discussed both with my docs. I decided to do trad rad therapy, with breath hold.
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Thanks dreamer . I did get the protons. hey do not do the breath hold but the beam does not exit so you don't have to. it releases its energy in the breast tissue. I hope you were happy w your rads experience.
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I am not at all against protons.
But I think it is important to be cautious when reading reports from a single institution with 35 patients who suffered fewer early effects, and deduce from those studies that proton is superior. Most of the serious side effects come years later, and it is those side effects studies such as RADCOMP (breast cancer) are designed to study.
Studies so far on proton for all cancers are inconclusive. And CMS, which has been covering proton for Medicare patients for breast and other cancers, is considering pulling that coverage due to the lack of firm data proving its benefits. It's a bit of a chicken and egg situation: studies can't enroll patients if insurance won't cover proton, but insurance companies don't want to pay for unproven treatments that are exorbitantly expensive, and they no longer need to under the Affordable Care Act. Some are saying insurers should cover for those participating in clinical studies. Meanwhile, why aren't the equipment manufacturers and proton centers covering the difference in cost, given that they have billions in profit to gain if proton is approved? Drug companies often provide drugs for studies. And the proton industry has a slew of groups and websites pushing the technology.
To put it in some perspective, following are some quotes from articles authored by RADCOMP's lead investigator, Justin Bekelman out of University of Pennsylvania:
https://ascopubs.org/doi/full/10.1200/JCO.2018.77....
Proton therapy has greater physical and biologic uncertainties than photon-based treatments, which can, for example, translate to high radiation dose and potential biologic damage to normal tissues immediately adjacent to tumor targets. If the biologic effects of proton therapy differ substantively among various tissues in the body or if uncertainties in physical radiation dose delivery manifest clinically, we might observe expected, or unexpected, toxicity. Some studies have shown the possible benefits of proton therapy in the cancers under study; other studies have reported increased toxicity or reduced effectiveness for some patients. How the physical and biologic limitations of proton therapy might affect clinical outcomes underpins the equipoise to test proton therapy in randomized trials.
https://www.redjournal.org/article/S0360-3016(19)30206-8/fulltext
... hospitals or facilities that advertise proton therapy should be candid and forthright with patients in acknowledging the current level of understanding and potential benefits and harms of proton therapy. There needs to be truth in advertising from hospitals when promoting proton therapy: Prior research has found that marketing information on proton therapy (and other new technologies) is frequently inconsistent with available evidence and consensus guidelines.
https://ascopubs.org/doi/pdfdirect/10.1200/JCO.201...
However, proton therapy has greater physical and biologic uncertainties. For example, because we cannot determine where proton therapy terminates in tissue with enough precision, we routinely overshoot tumor targets to ensure adequate radiation coverage. Proton therapy uncertainties could affect clinical outcomes; thus, we must establish whether its novel advantages actually translate into clinical benefits.
...Second, evidence for most malignancies suggests that proton and photon treatments are either therapeutically equivalent or that the benefits of proton therapy are uncertain. The effectiveness of proton therapy should be evaluated in multicenter trials with adequate sample size to measure patient-centered outcomes. By linking payment for proton therapy to evidence development, we echo prior calls to tie reimbursement for unproven technologies to the broad mandate of comparative effectiveness research.
... Randomized trials ultimately concluded that bone marrow transplantation for breast cancer was not an effective treatment. It is estimated that more than 20,000 patients with breast cancer were treated with bone marrow transplantation at a cost of $2 billion.
... This old debate, which mirrors the breast cancer experience of the 1990s, has been reignited by unfortunate language in Section 2709 of the Affordable Care Act, which excludes investigational therapy from coverage requirements for clinical trials. We doubt that the Affordable Care Act was written to impede payers' efforts to participate in or fund evidence generation. We also recognize that other stakeholders, including device manufacturers and providers, are potential candidates to pay for the use of proton therapy during evidence development.10 In our proposal, for example, we call on proton treatment centers to fund the difference between the reference price paid by insurers and the costs of proton therapy.0 -
I had proton radiation last year 6 weeks, all over my chest, sternum, base of neck and underarms.. Obviously I can't compare it to photon but the first 4 weeks were fine.. the last two were brutal, my skin killed, I had blisters everywhere. But now a year out, my echo shows no heart damage which is the main reason I had proton so I'm happy with my choice.
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Thanks for posting!
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I almost got proton but went for a photon consult just for the heck of it. Projected treatment outcome was worse with proton! Proton would have just touched my heart a tiny bit with one beam coming from the front whereas photon used two beams from both sides to glance my lung but miss my heart. Everyone, I urge you to get a consult for both! Who would have known.
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I just had my first of 33 sessions of proton radiation. I had double mastectomy for right side ILC with 2 lymph nodes. I had lymphovascular invasion and extracapsular extension. Insurance preapproved everything.
I have nothing to compare it to, but it was pretty quick and painless. We will see how I feel in a month or so!
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Thanks for posting! Wishing you all the best.
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I have IDC TNBC recurrence, one node with extracapsular extension. Met with the Rad Onc this week. recommending 16 treatments. Stupid question but I forgot to ask how big of an area will be treated. I had radiation in 2015 after lumpectomy so know the chest will be treated but was curious about how much of the arm is treated to cover the node area. My right side is dominant, my concern is will I still be able to use my arm normally during treatment?
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My treatment was for whole breast and nodes. I was able to use my arm just fine during rads and after.
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I just had my 2.5 year check by BS, She said that the tissue of my breast, the lack of fat necrosis, the lack of fibrosis was incredible and she credited Protons for the difference in the damage. I also took pentoxyfilene & Vitamin E for months after on the recommendation of my RO.
Wanted to report my BS comments in case people are evaluating protons...
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Bumping for anyone interested in Proton Rads.
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thats incredible. Thanks formposting
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