Author Topic: Proton Beam Radiation  (Read 1680 times)

KeepSmiling

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Proton Beam Radiation
« on: May 27, 2020, 10:14:03 am »
Why is it that no-one is considering Proton Beam Radiation? If you search under Keep Smiling , you will see that my husband's proton beam treatment at Mass General was successful. Acoustic neuroma was previously 1.5 cm and was last measured as .5 cm , after treatment.  No side effects during treatment and after treatment. We are not up to date on current technology about Proton Beam radiation but it seems that the ANA Discussion Forum might be enhanced if it included more details about this as an option.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

sycamore

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Re: Proton Beam Radiation
« Reply #1 on: July 05, 2020, 02:06:53 pm »
After doing a lot of reading, it seems to me that Proton has the advantage of less radiation to healthy tissue when the beam enters a tumor and doesn't exit it.

But Proton doesn't seem as accurate for targeting a small/medium tumor compared to Gamma or Cyber.

So I don't know taking everything into account which would give a patient the best results with the least collateral damage. I'm glad that you and your husband (Keepsmiling) had such a great result.

But I am not a radiation expert and I can't find much written about this.

Why hasn't ANA had any Proton talks I wonder?

KeepSmiling

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Re: Proton Beam Radiation
« Reply #2 on: July 17, 2020, 12:31:30 pm »
Thanks Sycamore. I really do not understand why Proton Therapy is not discussed here . We previously spoke to eight ANA discussion members that we found here by using advanced search. We spoke directly to them about their outcomes.Some had the treatments many years ago. Theory:  those who are treated for Proton Therapy have not had any issues and have had no reason to return to the discussion forum. It could be that I am incorrect. Another theory: It might be that ANA Discussion forum lacks funding from the Proton Therapy folks. Who knows? Good luck to al!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

KeepSmiling

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Re: Proton Beam Radiation
« Reply #3 on: July 17, 2020, 12:54:53 pm »
A third theory: The Proton Centers are booked solid with patients (children and adults) who have life threatening cancer and the AN patient is perceived as not in need of time sensitive care at the much coveted proton centers and so those less important AN patients are routinely referred to departments with the same hospitals that have a pre-existing investment with the the older technological solutions. Whatever the cause- it is very evident that the AN patient is given very with little info about Proton Pencil Beam ,(AKA Proton Radiosurgery, and /or Proton Radiation.) Some day the merits of Proton Therapy will be understood and appreciated at the ANA Discussion Forum. Meanwhile, we wish you all good outcomes! Take care!

12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

notaclone13

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Re: Proton Beam Radiation
« Reply #4 on: July 17, 2020, 04:58:34 pm »
As I recall there was or is an ongoing clinical trial for proton beam radiation treatment of ANs at Mass General. One of my forum friends even spoke to the doctor in charge of the clinical trial to see if he would qualify. If I remember correctly, the downside of the clinical trial is that it requires one to be in Boston for a month and a half. Perhaps someone on the forum can provide more info.

Freelander

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Re: Proton Beam Radiation
« Reply #5 on: July 28, 2020, 01:59:23 pm »
Perhaps one of the reasons proton beam therapy is rarely mentioned for treating acoustic neuromas is the price, which is usually much more expensive than photon machines like Cyberknife, Gamma Knife, etc. and hospitals don't feel justified making that investment.  It may also be due to difficulty in getting Medicare to approve its use.  On the other hand, incremental improvements in photon machines continue to refine their beneficial properties.   Moreover, in a paper titled: Protons vs Photons for Brain and Skull Base Tumors released in 2018, Ahmed et al state, when referring to a possible highly anticipated benefit of decreased risk of long-term radiotherapy-related adverse effects secondary to reduced doses to normal tissues, that "This highly anticipated benefit, however, awaits long-term clinical and cost-effectiveness data."  This technical paper is worth a read for those considering the pros and cons of proton v photon therapy.  Coincidentally, I talked with MGH today about radiation treatment, and the head of the proton center said he wouldn't use proton therapy, but rather their Varian TrueBeam radiosurgery machine, with frameless mask and real time computer tracking.   I was surprised to hear this when in previous conversations, that doctor said he would use the proton machine.    Apparently, he believes it is more effective for AN treatments.  Or, could it be insurance issues?

KeepSmiling

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Re: Proton Beam Radiation
« Reply #6 on: September 02, 2020, 12:54:00 pm »
Freelander- interesting points. Thanks for the details about your recent visit. Here is a study I just saw. There could be other studies out there too. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6871573/
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

gbly

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Re: Proton Beam Radiation
« Reply #7 on: September 17, 2020, 09:04:25 pm »
Howdy all,
I wil do a separate post, but I start Proton therapy next week at OHSU.  After doing some research one of the reasons it might not be offered very often for AN, is that it looks like they only have limited number of machines in the US.  It was noted that about 12 other machines where going to be coming online over the next year.

Hope that helps.  But really excited about the opportunity.
gbly

 


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