Radiation Oncs with a Bias?
Over and over on these boards, I see patients say their radiation oncologist denied their side effects could be from the radiation - even though these side effects are ones listed as related to radiation, and even though the patients were certain they were related. Also, it seems like radiation oncs strongly downplay the potential negative outcomes. When I mentioned them to mine, she said "I feel confident that you would tolerate this very well."
The SECOND time I met with her, and explained all the worries I have and the desire for a reasonable quality of life after treatment, she seemed concerned that I thought she was ill-intentioned. "This treatment is proven to help women live longer ... I don't do things that I think will hurt people."
I've also read some of the awful effects people are experiencing from chemo, hormone therapy, lymphedema after mastectomy, etc. And the medical oncologists or surgeons downplay the significane or the relationship to treatment. So I don't think this bias is limited to radiation oncology.
Now let me run an idea past you all. Could the desire to see themselves as helpers, not hurters, be influencing docs' presentation of risks and benefits? Could it be causing them to deny the possible relationship of the side effects to the treatment?
Could it even be that the emphasis on survival, recurrence rates, etc. in research studies causes the entire medical establishment to ignore quality-of-life outcomes, in research design? (And if you don't look for something, you most likely won't find it.)
I'm not advocating alternative/holistic treatments (except as complementary treatments), I'm not advocating ignoring the best medical "evidence." But, I think it would be great if patients asked, and research foundations demanded, for quality-of-life outcomes to be measured in studies and presented to patients making treatment decisions.
There should also be some way of quantifying the truly bad side effects. Example: tamoxifen involves a risk of blood clots, strokes, etc. That is a potentially devastating, if not fatal, outcome. Radiation can damage heart and lungs - those are two very important (vital) organs. For a percent reduction in recurrence, is it worth these risks? Reduce your chance of dying from cancer, increase your chance of heart failure/stroke - how do you weigh these things?
Not saying yes or no, but there should be more honesty and openness about these issues.
Comments
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I agree with you about the need for more honesty and openness. My medical oncologist was pretty forthright about the potential side effects of Tamoxifen. My radiation oncologist almost completely denied that radiation caused negative side effects, however. She even denied that it caused significant fatigue, even though that was mentioned in the booklet she gave me. I think they don't intend to be deceptive, but may instead genuinely believe that what they are recommending is necessary to keep us alive.
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I agree that a lot of medical personnel tend to deny/downplay SEs. I suspect a lot of docs don't want to admit to themselves that they can cause harm when they are trying to do good.
From what a lot of women on these boards say, I suspect rad oncs are the worst in this way. My rad onc was a caring doctor but he also did his share of denial. My med onc, on the other hand, tells me SEs and does not tell me to have a treatment but makes suggestions. Unusual but at least we know there are some who do.
Leah
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I wished hind sight was forsight. My skin started to burn & asked to talk to the doctor. I told everyone in the place I wanted to talk to the doctor. That day the doctor was setting me up for my scar boosts. The doc bopped in & out of the treatment room a couple of times, in the end was told they were done with me for the day. Not a happy camper. I wished I had went with my gut & refused further treatment.
Then on another day I wanted to talk to the doctor, they put me in an exam room & FORGOT ABOUT ME!!! Really not a happy camper. I finished treatments & she told me to go be happy. I wanted to slap her.
About 3 week later the burn was really bad but it came & it went. The the scar boost burn started coming out. I am still dealing with this issue 2 1/2 years later. When I went at six weeks, I let her have it. Needless to say I FIRED HER!!!
But unfortunately the damage was done. I am sure I am the except to the rule but it stills make me made. I have spent a small fortune not to mention the pain. I just wished they had been honest to begin with. I would rather know the truth than be dupped.
I'll get off my soapbox now. NJ
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I must have been very lucky with my radiation treatment. The RO saw patients once a week, but we were told to let the nurse know if there was any problem. They were straight forward about possible problems. On one exam, the nurse noticed that the burns had started getting weepy and gave information about an astringent and Cool Magic Gel packs-- and that the pharmacy next to the center carried both.
On my follow up visit after treatment the MO gave me aquaphor samples and coupons. There were also coupons for XClair.
We had full access to a nutritionist as well. They said that most people did well, but they were on the look out for any problems and helped mitigate them. The MO was very cooperative about answer questions about the treatment.
So there are radiation oncology practices that are proactive about identifying and mitigating side effects. I hope you're all as lucky as I was.
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Like Megadotz, I had a really good radiation experience but there is no question that thousands of you did not. Many times, problems with chemo or rads can be chalked up to how it affects that particular individual. However, and I am sure I will raise some hackles, I have to wonder if sometimes treatments are recommended/encouraged and side effects are downplayed because that is how oncologists make their income. Anybody think that is possible?
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AnneWisc, I understand exactly what you're saying. Do you know the expression, "When the only tool you have is a hammer, every problem looks like a nail?" I think that's the way doctors work. The surgeons want to cut, the radiologists want to radiate, etc. I don't think they do this out of greed, necessarily, and I don't really think they don't have their patients' best interest at heart. But they are doing and/or recommending what they know.
That's why you have to educate yourself and make decisions for yourself.
Some time ago I had foot surgery. I was told the recovery would take a certain amount of time, but it wasn't really true. While I could indeed walk within the time I was given, I couldn't wear normal shoes or walk long distances for a MUCH longer time than I was quoted.
I asked the physical therapist about this and he said, "If they told you the whole story you'd never agree to the surgery."
I think this also explains a certain amount of what doctors do. I needed my foot surgery, and I needed my lumpectomy. But if I'd known how long the foot healing would take I might not have agreed to it.
Does that make sense?
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Well, when the alternative is death, most of us stop worrying. Most everyone (certainly not all) of us tolerate the procedures well enough, what are they supposed to do? If they told you ALL the awful things they see, no one would go for it. It is a game of percentages. I am 13 years post treatment and I have treasured every year. Yes, I don't feel anything under my arm, yes I had Costochondritis from the rads, yes, I still can't sleep comfortably on that side, but am I glad I am here? YES.
Gentle hugs, Shirlann
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AnneWisc:
After battling breast cancer for 4 1/2 years, I see Oncology as more alchemy than science. I believe that on a scale of 1 - 10, Oncology has developed to "maybe" a three. First of all, I don't believe that they have the answers to the questions you seek - they are good questions that you ask but I don't believe that they have answers.
To give you an example, 2 1/2 years ago I found out that I was stage 4. I was in the hospital for 8 days and nearly died. The first chemo combo that the Onc put me on worked and worked for two years - I only had around 3 months to live at that point. If it had not worked, I would have been dead 2 1/2 years ago - my Onc had no way of knowing this - it was really a good guess or dumb luck.
I've had this discussion with my current Onc. If she picks the fourth or sixth chemo on the long list of chemos instead of the fifth, I could be dead before I get a chance to try the next one - she agrees with this assessment. Much of this is trial and error in my opinion.
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My radiation onc was completely honest with me. So honest that I decided to skip radiation. He said that 5 to 10 percent of my lung would be scarred. He said parts of my heart would be irradiated and he said that it could damage my ribs. He also said in my case (being 75) there was only a small percentage of benefit.
I really liked this guy - he was the director of the whole radiation department and didn't try to push it at all. Knowing how much these procedures cost I had gone in for the consult thinking he would push radiation and also thinking he would be afraid of a law suit if he didn't push it. I really think these doctors have to walk a very fine line - I wouldn't want to be in their shoes.
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I suppose when they finish basic med school they have to chooose a career specialising in whatever branch of medicine they most believe in (exam results, vacancies etc being equal) whether that be emergency room, infectious/tropical diseases, geriatrics, nephrology, maternity/gynae, toenail surgery, psychiatrix, etc or the various oncology branches, and then go for it wholeheartedly. Or research I suppose. If they don't believe in it themselves, they should be doing something else. So you are bound to get a bias, worry if you don't.
(BTW, Don't knock toe-nail surgery, it's gross to watch and not at all glamorous, but if you ever had an infected toenail.... !)
My rad onc seems to have left town.
He was one of the best bits of my cancer treatment. -
Good discussion we have going here. Thanks to all who have participated.
I watched some of the Grand Rounds talks on the website of my comprehensive cancer center (pitched at researchers, not patients). It is illuminating to see docs/researchers in the company of their peers admit all they don't know or all that is dumb luck. At the same time, they obviously do care about doing right by their patients.
Personally, I think I make better decisions when armed with knowledge - up to a point. I'm pretty close to the point where no additional information will make much improvement in my decisions. But I had to dig for a lot of that information myself.
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Joycek: So glad to hear this. I think you made the right decision.
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I also think you may a very good decision, Joycek. I refused everything suggested to me except a lumpectomy and single node removed with SNB over 7 years ago and I've been fine ever since. There's a lot of overkill involved in breast cancer treatment - especially for small, low grade tumors.
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Good for you Marie:
I just started taking Aromasin (since I promised my granddaughter) but if the SEs are too bad I will stop. I can't see suffering with SEs and taking other drugs to combat them - maybe I would feel differently if I was younger.
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I think everyone including docs have bias's. We may not be able to find one that is a good fit for us because of insurance, location or just pure exhaustion. So far I like my RO but I haven't started radiation yet. He is a cancer survivor himself & spent a lot of time with me. He spoke of "quality of life". The issue of ALND(another surgery) vs radiation was raised. My MO thought I needed surgery. My surgeon told me that the additional surgery would leave me with a 30% chance of LE & mentioned "quality of life". The RO at first thought I should have the surgery because it might supply additional info that could help the MO decide my care. I mentioned a study that said RADS could provide just as good outcome. He was familiar with the study & said he would review it & see if it could be applied to my case. He called me back after reviewing the study & talking with my BS. He said from a quality of life stand point radiation would be a better choice & give me equal benefit as the additional surg.
My MO is reccomending chemo but it is not a strong recomendation. He said that he thinks a 10yr reoccurence rate isn't good enough & seems to downplay side effects.
I still remember a radiologist telling me that steriotactic biopsies were well tolerated by patients. I guess that means that the patients walk out of the office.......
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I had a surprisingly good outcome today at radiation oncology.
I don't exactly know what you call today's procedures - pre-RT imaging, maybe. First had a new mammogram with 2 magnified views. Second, the thing I was dreading, "numbing" the breast followed by injecting contrast dye into the tumor cavity (after lumpectomy). Finally some CT on my back and my front.
I have to say, the techs were absolutely wonderful. I did let them know before the "numbing" and dye injection that I have an unusually low threshold of pain, and from dental work (which uses the same numbing agent, lidocaine) I know that a fine needle, slow injection, and a larger-than-average dose of lidocaine makes a huge difference. Well, the radiologist who did the numbing and injection was familiar with the method I mentioned, and extremely gentle. The mammography tech was very gentle and delicate. The CT I don't think was aversive, as I don't mind going into a narrow tunnel as some people do. Strong kudos to UW-Madison Breast Center in the Carbone Cancer Center. They really care.
By the way, coraleliz, I had a very unpleasant experience with stereotactic biopsy at a different clinic, and felt that that surgeon had no empathy whatever; at that clinic, the mammography tech showed no concern at all with my comfort.
My RO at the Breast Center, Bethany Anderson, does seem to be on the same page with me now, that I have realistic worries about quality-of-life with the common side effects of whole breast irradiation. I was offered brachytherapy or external partial breast irradiation. We will attempt the latter first, and if that is not going to work out, we will move to plan b - brachytherapy, the multicatheter kind (interstitial).
Hey, what this all boils down to is, you do get to make some of your own decisions and still be respected. So I urge those of you who have the interest in exploring more options than the "standard of care," to research them to the best of your ability. (This stuff is not easy, but it's not that hard, either.)
Still don't have a start date, I was told just the "planning" takes up to a full week, and she will let me know later this week. Either of the above procedures is shorter than the standard 6 week +/- plan. One or two weeks max. I like that!
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There was a thread in another section titled "Don't Do It!" where one contributor told everyone to avoid chemo at all costs. The originating post was deleted by the community and the whole thread might get deleted, too. That contributor takes a point of view to the extreme, but it did get my thinking. Why have I been so resistant to some of the interventions that were recommended?
I am the victim of iatrogenic (doctor-caused) side effects that left me with an incomplete spinal cord injury. The result to my life has been profound. So profound that a little DCIS seems like "small potatoes."
This doesn't leave me with zero respect for the medical community, but it does make me want to ask more questions and consider some of the less-desirable outcomes before blindly consenting. I hope nobody has read my posts as radically dissing evidence-based medicine or the motives of our doctors.
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Radiation oncologists do downplay the side effects. For example, they insist radiation is painless, but it does cause sensation for many folks. I experienced a distressing bubbling feeling accompanied by nerve pain. She never addressed this in our weekly meetings. As I went along through treatment, I began to ask each doctor and nurse if he/she had ever had cancer. The two folks who had direct personal experience were much more willing to listen and work through issues of sensation, pain, discomfort, or feeling peculiar and weird twinges. I also remember talking to a sister patient who swore radiation oncologists were nothing more than techno geeks! I don't know. I'm glad I don't have to see my radiation oncologist again. If I have a recurrence, I know I'll choose another doctor. Older, wiser, experienced... sadly! Best of luck.
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My RAD techs are awesome. I ask them more than I do the doctor. He is very good but a man of few words. Dont want someone who is too chatty but I have to admit it made me a little uneasy at first because all my doctors were extremely talkative. I am just now getting the RADS rash, I have pretty much stayed out of the sun. I cut the grass front and back when the sun goes down. I need the exercise. I have intermittent pain but wow am I fatigued. My ONC said I would start feeling it midway through the treatments. I am on #24/#33. Time has really flown by. Monday will be my first boost. I am was so sleepy this morning I thought it was Friday. Had to get up and take husband to airport at 6:45am. All my treatments are 8:45 am. Want to get them over with. I am amazed at the no of people who come from out of town to the facility I go to at Baptist Cancer Center. They have been told the facility is the best; so far, they seem to be right. Cant wait for this to end. Best of luck everyone...diane
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My rad onco completely disregarded my SEs other than skin burning and bruising in the rib area. I started having daily episodes of dizziness during rads. I asked her about it as well as her nurse and an intern type rad onco (I treated at a teaching hospital) - they all said that is not an SE and made no further inquiry or follow up. I was absolutely convinced I had brain mets as it kept getting worse and there was no explanation for it other than rads, which I was told was not an explanation. I ended up seeing my med onco about it and she immediately tied it to rads and said to give it a month post rads and, if it was not better, we would investigate further. It was completely gone within in month of finishing rads, just like my med onco said. I was furious. I am currently having some irritation that we think is rads related - I refuse to see my rad onco about it because, although she is really nice, I have the impression that she is just not going to acknowledge the problem or do anything about if it is outside of the most common couple of SEs. Annoying.
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If I could go back in time, I would not have had my radiation. I was just telling someone this the other day. My ro kept telling me that it was minimal, minimal damage to my lungs! However, being that I was 31 at the time and that I had smoked for 10 years and continue to fight my addiction to smoking, I have now increased my risk of lung cancer and more breast cancer as I still have to have mammograms every year, not to mention cat scans on occasion - which have a tremendous amount of radiation. And, about a year ago or so, I saw an article that stated that even with modern day radiation techniques, such as the imrt that I had, I still have an increase of lung cancer b/c I have a history of smoking. So, even though I quit, I know that the risk is altered regardless. And, I don't remember my ro even taking that into consideration. Also, I noticed that I would get shortness of breath and still get it and that started about a year or less after my treatments ended and I was told that it was from my mastectomy - that it caused compression on my lungs. Maybe, but, I don't know.
And probably within the next year, after I have an mri, I will probably have my implant taken out as it really just seems to be to difficult after the rads to keep it. So, I will have to get a prosthetic. I'm not too pleased about that either, but, I have not had good luck and am just tired of having the implant and the pain. Plus, the skin there grosses me out and I don't like to think about any cutting with it.
imo, I feel that the doctors don't look at you as a person, but more as a case, which I can understand. I would imagine it would be much harder if it was more personal. But, they are looking at what they've dealt with on past experiences, studies, statistics, and so forth. But, I also think that there's a money component in there b/c I haven't had insurance the last few years and let me tell you, there's a huge difference in treatments. At least, if you move away from your doctors, such as I did. I can't complain at all about my surgeons, they were absolutely awesome to me and I miss them. I finally found a surgeon where I live now that I like, but, it's not anywhere near the same as if i had insurance. Matter of fact, he kept pushing me to have a bx earlier this year, even though I told him that I don't like to have surgeries anymore unless I absolutely have to. But, he thought that I would get medicaid and therefore he would get paid. I didn't feel that I needed it and decided to wait the six months to see if there was a change. And, I know I made the right choice.
Now, I have insurance again, and I'm so relieved. It's very basic, but that may be upgraded soon. I'm hoping, b/c I can't have the mri that I need to have unless I have insurance.
So, I've rambled on long enough. Sorry, I' ve been up all night and I'm exhausted and I can't go to sleep b/c I have to go back to work soon. Then, sleep
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Docs will only reverse course on this, if patients ask them to.
I had one surgeon who told me to stay off the internet because a lot of the information out there is inaccurate... well... that's true (I don't really believe acai berries or noni juice will cure me), BUT I wanted to hear how patients felt about their treatments - so I ended up at breastcancer.org.
I think doctors often do have blinders on and earplugs in - they look at their research data, but because the studies are designed only to answer specific questions, other variables (such as long-term achiness, with an important decrement in quality of life) are not even considered. They listen to other docs presenting at a conference. But put a patient in the exam room saying "I have had this side effect from my rads" and they are like, well I never heard of THAT before, you're just imagining that it's related to the rads.
We need to look them in the eye and say - strongly, but not angrily - "no, I'm NOT just imagining it's from the rads. It coincides in time with the rads. I have read that it is a common late effect of rads. And finally, the women in my BREAST CANCER SUPPORT GROUP report the same thing."
Follow up with the direct action you want them to do: "I would like you to hear me, and advise patients in future that this sometimes happens, has happened to patients of yours. Will you do that?"
Ought to knock their sox off.
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