Frightening NYT article on radiation TX

pj12 · January 2010

I had radiation. I would do it again. I believe in it. But, honest to goodness, this article scares me to death! Pay attention, ask questions, be your own advocate. No one else is in the treatment room to speak for you. You can not be timid. Ask about the experience of the physicist and the dosimetrist. Ask about the therapists. Complain if you feel they are not paying attention. Refuse treatment if the machine goes down repeatedly. SURVIVE!

http://www.msnbc.msn.com/id/35046121/ns/health-more_health_news/page/8/from/ET

HappyTrisha · January 2010

Getting you to the first page of the article. The link above gets you to the end, and if you are highly unobservant, like me, you don't notice that you are on page 8!

http://www.msnbc.msn.com/id/35046121/ns/health-more_health_news//

Smile

pj12 · January 2010

Thanks Trisha.

vivre · January 2010

I wanted to vomit reading this. If there is anything I regret, it is doing radiation, even though I did not have any bad side effects. It was just so scary. The whole thing is just barbaric in my opinion. You did a great service by posting this. Yes, it is a worst care scenerio, but people need to know all the facts before they make decisions on their protocol. Unfortunately, we do not always get them from our doctors. I hope everyone will do the research before they decided what to do.

c2will · January 2010

Thanks for posting this. My treatment hasn't started yet, but I have a new set of questions before I begin as a result of reading this article. I will definitely ask about their protocol for verifying the accuracy of the plan during the treatment - who verifies, and how often.

lisettemac · January 2010

I read this article today too and cried. I finished my radiation 2 1/2 years ago, but this is scary stuff. How many times did I arrive for radiation to hear "the machine is down" and then they managed to "get it back up again" in time for my treatment? Did they test it before treating me? Why did that stupid dr refuse to explain IMRT to me even when I asked? Why didn't I trust my instincts when I wanted to cut and run from radiation?

dlb823 · January 2010

So scary!!! How in the world are we as patients supposed to know if the techs are setting or resetting the equipment correctly??!!

And where the heck is the FDA in this? I do not understand how this piece of equipment remained in use with that kind of problem. And keep in mind, this article was based only on New York records and statistics. Makes you wonder how many others there have been... Deanna

MAGOB · January 2010

Five more days of rads to go. Boosters start tomorrow. The NYT article is terrifying. Hence, I am awake and on the boards at 1:00 in the morning.

I will submit a request to the moderators for some good counsel from the experts on all of this. Likely they are already on the job. Most alarming is the news that there is no transparency on any of these accidents - hospitals don't report the bad news without the promise of secrecy. This is all kinds of wrong. There is no way to tell just how common or rare these accidents have been.

MsBliss · January 2010

Thank you PJ for posting this link. It is an education. Information is power, especially with this type of thing.

This article is on top of the disclosure that several major hospitals in major medical centers have been overdosing patients getting brain CT scans. 8 times the dose because of software and calibration issues. What else has been going on under the radar?

I had a "peculiar" PET scan experience at UC Irvine many years ago--they were "unhappy" with the isotope that came up for my test and "cooked" up another dose which was then used on me for the test. I wonder if that could have possibly caused or contributed to my currrent cancer.

As the article said, there is no reporting requirement in the industry. What kind of b*llsh*t is that????

MarieKelly · January 2010

I too, thank you for posting this. I just wish there was more investigation and reporting of issues like this. Unfortunately, it's not the kind of information that those continually promoting the widespread use of radiotherapy want the public to know. You can bet there will be at least one journal article published sometime soon that will discount the concerns and once again highly emphasize the purported benefits - as always, written and published by none other than those in the radiation oncology industry.

pj12 · January 2010

I just want everyone to know that I did not post this to scare anyone. Knowledge is power. I am going to copy the article and take it to my facility and ask them to share it with everyone who works there. I had IMRT on a Valerian machine with no APPARENT ill effects. But on at least 5 or 6 occasions the machine had to be rebooted while I was on the table waiting. I would not permit that again! Inconvenient as it might be, I would stop and reschedule.

pam

MAGOB · January 2010

Went in for booster number one this morning. Asked the crew about the procedure used to be sure the amount of radiation needed matches the output from the equipment. The therapists were indeed aware of the NYT article. Sadly, they were told this morning not to answer these questions. If anyone asks, a doctor must be called to answer them. As a result, I waited for a little while to get some answers, but I did get them. I am satisfied that my doctors and staff are using good processes to ensure safety. I am also glad I asked - Hopefully, you will ask, too.

Pam is right - knowledge IS power. We must be our own advocates. Don't be afraid to "inconvenience" anyone by asking these questions. Put the gravity of this particular issue on a scale. Now, compare the inconvenience of asking about radiation safety to say, holding up the line at the car wash to be sure your paint won't be scratched. If you get a car wash attitude about a radiation safety question - DON'T STAND FOR IT. You are the one who has to stay on the table when everyone else leaves the room. Take good care of your sweet selves.

XO, Mary

lisettemac · January 2010

Knowledge is indeed power. Good for you all for asking questions and insisting on getting the answers. It is also important to check that screen and be sure that the patient info matches your name, etc.

I also had IMRT on a Valerian machine. What makes me mad (still mad about it, in fact) is that the radiation onc basically refused to answer my questions about radiation. He said to me, "well, what do you want to know?" When I said that I didn't know anything about how it worked, the risks, etc, he just kind of laughed and said "some people want to audit the course and some people just want to show up and do what the dr tells them to do .... which one are you?"

I was so upset and frightened during the testing/set-up, but I chalked it up to being tired from chemo. I should have trusted my instincts and insisted that he run me through the basics, including why IMRT is so much better.

So don't stop ladies until you get the information you need.

vivre · January 2010

Here is a video version of this story, as if the written one was not heartbreaking enough.

http://video.nytimes.com/video/2010/01/23/us/1247466680985/hidden-danger.html?scp=1&sq=hidden%20danger&st=cse

retrievermom · January 2010

Read this today, too, and was freaked by the time my husband came home. He wants to be my protector, but how can any layperson know the machinery/computers are set right?

Anonymous · January 2010

I just read this and it was very scary. I know now that if I need rads again, I will be completely all over it! I did get rads poisoning, was very sick, counts tanked and I was unable to walk. This does happen to some, but it wont happen to me, and I pray NOT anyone else.. Blessings

MAGOB · January 2010

Retrievermom - No kidding! How are we supposed to know? I have pals who read the article, and they have been aggressive with opinions and suggestions - AS IF we don't think about all of this every time we go in for treatment. It's not like we can flee the country and hide from radiation. If left untreated, cancer will find us wherever we go. Like all treatments, there are risks. We have to do our best to evaluate the benefits, and decide what is most comfortable.

kmf · January 2010

I asked yesterday how they know the machine is delivering what it's told to deliver -- if they "calibrated" the machine. They told me that have 3 physicists that check it -- weekly, monthly, and annually - to be sure it is precise. They take ex-rays every 5 times on me to be sure it is radiating where it is supposed to be radiating. They check for all sorts of things as they are setting me up to be sure the positioning is correct.(They went through the details, which I didn't totally understand.) There are usually 2 techs in there and I feel like they double check ea. other to some extent.

Everyone seems happy to answer my questions, so I'm satisfied they are as safe as they can be w/this. As much as I don't like the potential long term side effects, I like the idea of cancer coming back less! Karenanne

nas14 · January 2010

I just got finished reading the article & watching the video. Wow, very powerful & heartbreaking stuff! I finished rads in Oct. & really didn't think anything about doing it; just one more hurdle to overcome in my fight. This really makes you stop & think & to question everything & everyone.

3monstmama · January 2010

Thank you for posting the article. I am set for a lumpectomy on Monday for DCIS with radiation to follow.

I have to say, the radiation portion of the whole thing has ALWAYS been the part that really scares me. Given that what I have is DCIS, f I take the tamoxifen, why do I need the radiation? Its seems like overkill to the max.......................

Laura2009 · January 2010

kmf, I also asked questions and felt reassured that both the nurse practitioner and the health physicist were happy to take the time to answer them.

They said that the NYT articles (there's a series!) were the talk of the radiation oncology division (which is a good thing)!

MAGOB · January 2010

Here is a follow up story if you have not seen it already.

http://www.nytimes.com/2010/01/27/us/27radiation.html?pagewanted=1&hpw

pj12 · January 2010

Mary,

Thanks for the follow up article. This is just terrible. How do we know we were properly dosed? I wonder if our charts reflect reality.

pam

MAGOB · January 2010

I don't know how to tell - I guess we just have to wait and see. My mother received radiation at Akron General Hospital. How frightening! All we can do is ask questions and do our best to decide whether or not the team is competent. Things may pop up after a few months, or it may take years. I asked all about the heart, lungs, ribs and so on. They tell me it is all very safe and it is not likely that I will have any of these bad side effects. I asked about safety procedures, as noted in my earlier post.

So here's a question for all of you: We all realize there are risks involved with every medical procedure. Some risks depend on how healthy we are to begin with. Some involve allergic reactions. Then there is the "snowflake" factor - we're all different, and rarely, a person is going to have a very bad reaction to a medication or procedure.

But none of this comes in to play with radiation accidents. They are caused entirely by human error. Based on what we've read, do you think the risk is higher for radiation than for other kinds of treatments and procedures?

Leia · January 2010

I had a 2cm IDC in May, 2006. Cut out, with huge margins. Refused the Radiation. It never made any sense, to me.

And with this NYT article, makes even MORE sense. That my decision, was right. And by now, I'm almost four years out, no recurrence. With no radiation.

Radiation causes cancer. There are numerous studies, today, that say that.

Just like once upon a time, it was a Radical Mastectomy,for everyone with breast cancer. That is currently, a non-starter. And soon, it will be, forget this "Radiation" for DCIS. Or IDC, ANY diagnosis.

I'm just GLAD that I NEVER had any Radiation.

pj12 · January 2010

Mary,

Interesting question. I see the risk as so insidious because you don't necessarily know the damage that can show up later, years later. Damage to heart vessels, lung fibrosis, sarcoma... are all known se's of NORMAL radiation dosage. Certainly those risks must be compounded if you are getting a higher dose or radiation to the wrong area. So these articles feature extreme examples of mistakes but how many of us were affected in lesser, long term ways?

I'm thinking of asking to see the records of my treatment. What do you think they would say? Think I could learn anything?

pam

MAGOB · January 2010

Pam - the way it sounds in the articles, the patient is going to be one of the last to know if an overdose happened. Your chart could reflect a perfect course of treatment, and your team may feel that it went as planned. Your doctors and radiation team could learn much later that the computer and the equipment were out of sync.

Certainly, a catastrophic dose would be evident in a short period of time. I hear you about the lower-range overdoses and the misdirected beams. This is scary stuff. We will just have to wait and see.

Also disturbing is the secrecy - yes, it does encourage hospitals to keep reporting mistakes. But it does not help the ones who need it the most - the ones on the receiving end of the equipment.

One thing all of us can do is check the treatment center's credentials. In the NYT articles, we read about a certification process or audit of some sort done by a group affiliated with MD Anderson. If your team has earned that kind of certification, then it is a very good sign. I wonder what that certification is called - could not find it in the article.

This morning is my last treatment. I am ready for it to be over.

Mary

Frightening NYT article on radiation TX

Comments

Categories