Questions about radiation in early stage IDC
Comments
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Rushing in here....didn't have time to read all the responses but simply put:
If three women are expected to have recurrence with no radiation, and with radiation, two have recurrence, then the number they tell you is that with radiation there is a 33% reduction of recurrence. A "rubber" number that can be misleading because it speaks to the general population of breast cancer patients, not your particular percentage.
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Rushing in here....didn't have time to read all the responses but simply put:
If three women are expected to have recurrence with no radiation, and with radiation, two have recurrence, then the number they tell you is that with radiation there is a 33% reduction of recurrence. A "rubber" number that can be misleading because it speaks to the general population of breast cancer patients, not your particular percentage.
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Thank you all so much for your contributions. I'm sharing this with the gals in July chemo. Most of us were woefully unclear on relative vs. absolute risk, and cowed by our radiation oncologists to believe radiation was the most effective of all the treatments.
A clarification:
HER2 cancers usually reoccur in the first 2 - 5 years. ER+ cancers, on the other hand, come back 10, 20+ years later. Which is why the 10 year survival stats are only so helpful in that case.
No one wants to go through the trauma of a local recurrence, and the need for another surgery and treatment. Radiation makes sense to me on that ground, even if there are accompanying risks. If the long-term risks of cardiac damage, etc. are profound, that's another story. But to spare oneself a recurrence seems a great benefit. I may have equal overall survival with non-radiated women, but to be spared another round of this may have benefit regardless.
If the cardiac or lung damage is going to kill me in the end, well, then it's just not a good risk. To ask the doc. The risk of other cancers is really low. I've looked into that fairly extensively.
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MHP, I think you're asking all the right questions. As for delayed recurrences, it is true that er+ bc can recur many years, even decades later, but that is not when most recurrences of even these cancers happen. By 5 or 6 years the risk of a recurrence drops to about 4%. But that risk remains for a lifetime, while with triple negative bc you can pretty much assume thats the finish line. I just don't want folks to think that most er+ bc recurs so late -- that is actually relatively unusual. As for her2neu+ I wonder if that stat has changed with the widespread use of herceptin, a relatively new development.
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My onc. told me that the risk of recurrence is highest at the 2 - 3 year mark after surgery. I am right in the critical period at the moment. And then drops significantly after 5 years. But as member said the risk remains for a lifetime.
Glenis
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I've wondered...why haven't the insurance companies used these studies (that radiation therapy doesn't show an overall survival advantage and relative risks versus absolute risk factors that show an individual "rubber" number as not being beneficial) in denying people expensive radiation treatments like they do with other treatments?
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The insurance companies usually reimburse for whatever the "oncology guidelines" are at the time.
Remember, insurance companies paid for chemo for early stage ER+ cancers about ten years ago? Then the guideline-makers found there was no survival evidence and hormone control was substituted as the new guideline?
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mollyann,
They still are paying for chemo for those like me who are in the gray area. What I find frustrating is seeing how many of us who a year ago would not be facing chemo are facing now because of the oncotype test gray area. There gray area has also moved from 16 to 12 which includes so many more women in that gray area.
Karen
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I thought most reccurence happens within the first five years, less after.
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Karen, this is the source of my greatest sorrow: that in a few years, I probably will be told chemo and radiation were unnecessary. But, I was in the grey area, with a grade 3.
A nice husband wrote in on one of the boards, and it was interesting. First, the oncotype studies didn't include but a handful of young women. And second, it needs more time to pan out the long-term studies.
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MHP70- Thanks for starting this thread. SO many decisions! Dang, we should all get honorary PHDs at the end of this! I meet with my RO tomorrow. I am going with lots of good questions and the 9 page Fisher study. I'll report back.
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Designer, I wanted to share a story since you are seeing your RO. When I was considering rads several years ago, someone pointed me Fisher's work on the NABBP. So I brought it to the RO.
The RO said, "you have it backwards. Of course, there's overall survival." I was mortified because I had stayed up the night before highlighting the salient parts with a marker. Honestly, I still remember, my face getting hot with embarrassment. How could I have been so wrong? He said my breast would get red but nothing to worry about. My husband was with me and he remembers every word just as I did.
Then by accident, I ran into my onc in the supermarket two hours later. I told her the story. She said that I must have misheard the RO and there was no overall survival value and they had known that for years from Fisher and other studies. They only like to do rads on the chance it will help with local recurrence.
So, good luck, honey and don't let your RO intimidate you like mine did me!
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MHP70
I agree I will more than likely be told my treatments were not needed as well. I have done the lumpectomy, the rads, and now the chemo for an "early stage" breast cancer. Sometimes I feel we are being experimented on because they just don't know.
I do know my BS wanted me in one of the trials that is freezing early stage cancers, but only IDC. He has high hopes no one will need to be cut in the future. I do hope he is right.
As far as radiation, in my case I had the mammasite because of the location. he was afraid of the damage regular radiation would do to my heart and lungs. I have no idea if the mammasite treatment is better or does less damage overall, but I do know I have no lung or heart damage which was my fear.
Karen
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This article compares the doses to the lung and heart for 'prone' positioning (face down) and 'supine' positioning (face up) during radiation.
http://www.ncbi.nlm.nih.gov/pubmed/20561695?dopt=Citation
"Conclusions: In the context of tangential-field WBI and PBI, prone positioning is likely to benefit left-breast-affected women of larger breast volume, but to be detrimental in left-breast-affected women of smaller breast volume. Right-breast-affected women are likely to benefit from prone positioning regardless of breast volume."
Has anyone heard about this?
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I hadn't read this before, but I am glad the prone position wasn't considered for me as I am rather small breasted.
As with so many things in this BC world we as the patient must keep up with as much as we can. If we don't god only knows where we would all be now.
Karen
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Back from meeting with my RO. I brought up the Fisher study questioning whether there was any benefit to radiology after lumpectomy. My RO, who I respect and like a lot, he never tries to strong arm me into any decision, said "Oh, I know Bernie (Fisher) very well, he NEVER said that there was no benefit. Recently they have documented that there is definitely benefit to radiation after lumpectomy". Small world! He mentioned an update in the Lancet. I googled that and came up with this article which clarifies that there is survival benefit. I think it says 5 more women out of 100. There is also a link to the Lancet article if you want to read the detail. http://health.dailynewscentral.com/contentview/2019/63 As I did have one positive node, I knew I would do radiation. We are now trying to decide whether I will do it sunny side up or down. Mine is left sided and I am concerned about heart and lung damage. He said that we should look at everything once I get the CT to determine how close to the heart the radiation will be. All these treatments are such a personal decision. For some 5% benefit might not be a lot. For me, 5% sounds like a definite benefit. I think it is great that we can all discuss the many aspects of all these treatments, it helps me so much.
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I just read the actual Lancet article as opposed to the newspaper article which misrepresented the Lancet research.
The Lancet study only goes out 15 years so it doesn't contradict Fisher at all whose data went out years longer. The cardiac damage takes more years to show up, after the 15 year mark.
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I would be shocked if the number of women dying from cardiac damage from radiation is anywhere near 5 in 100. Since Fisher himself is apparently saying there is a survival benefit, and this study demonstrates it, I don't understand this effort to create arguments that this benefit doesn't exist. Seems to me the appropriate response to ask if the benefits are worth the risks, like with any other cancer treatment. But to deny that they exist doesn't make sense to me.
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Just got back from my oncologist today (1st visit). She said that radiation is still a question mark for me and wants me to meet with a radiation oncologist because it's not her call. I do get the feeling she thinks I can go with out it. Be interesting to see what the radiation oncologist has to say.
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MOC, where did Dr. Fisher say there is an OVERALL survival benefit?. Are you drawing your conclusions from a hearsay conversation from somebody who sells radiation?
I would like to read it, first hand, where Dr. Fisher has reported evidence there is no overall survival benefit. Please cite a source. Thanks!
Until then, the study going out the longest, is the most reliable. Also, I think you are confusing breast cancer survival with overall survival.
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Lago, I'm surprised your doc says it's questionable for you, and would love to hear more.
If cardiac damage shows up 15+ years down the line, I'll consider myself a lucky lady. But, I take it seriously. If anyone has a study on the overall survival issues, like cardiac damage, much appreciated. I've printed a lot, including the Fisher studies. It's still a big jumble. Overall survival seems to flatten at the 10 yr mark, radiated or not. But, radiation does really help with the 1 - 5 year recurrence issue. That seems very clear.
My oncologist said the technologies have evolved to such an extent that the radiation goes to breast, and underlying muscle, not heart. But hey, I still don't have a study in hand on the heart damage. Seems like heart is the main issue affecting overall survival stats.
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Mathteacher, from what I could see on Fisher, at the 10 year mark, things level out between radiated and not. But I"m still reading reading reading
As for the length of studies, yes, long is good, but it is unfair to consider it definitive. Radiation technologies have changed drastically.
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If it's proved that radiation therapy does not add OS at all and very little in local recurrence, according to all these studies.... how long is it going to take for the treatment guidelines to change and the insurance companies to adhere? You'd think they would want to save money at the same time sparing us unnecessary harm?
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From what I can see, the studies range in terms of benefit assessment. If you are a higher stage, the benefit of radiation is far more than in my case, for instance. I don't think the whole thing is a vast conspiracy to make money and kill women through cardiac disease while they are at it. Local recurrence is a big deal, it's psychological and physical trauma at the least. And I think this is all very complicated, and not possible to base on one study. 1 - 5 years is when a lot of cancers come back. Therefore, the breast cancer survival shows considerable benefit from radiation.
Now, that pesky overall survival. Anyone? Point me to why this is so? I can't find info on exactly what folks are dying of in that overall survival category that null and voids the BC survival stats. It's making me crazy!
Regarding insurance, I'd like everyone to have free choice. For instance, had I chosen milk thistle treatment, that'd be out of pocket. It shouldn't be, if there is a certain threshold of scientific study.
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May I jump in here.
All the research and data given is for older types of radiation equipment. They now have cyber knife, IMRT and the seed implants. No data is given for this. The IMRT can be used on the left breast and rotated to not involve the lungs or heart same with the others. Although I'm not sure if the cyber knife is used in breast cancer treatment. I know it's used for prostate, brain and others.
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Member of the Club- I probably wasn't clear in my post. I am actually saying that there IS a benefit of doing radiation after lumpectomy. The 5 women out of 100 was quoted in the article as 5 additional women surviving because of the radiation received. It was not a statistic about heart damage. I am only expressing my concern about the possiblity of heart damage. My Onc said that on left sided BC radiation, 3% - 4% can end up with heart damage. And this heart damage would probably not be apparent till many years later. He did think we could reduce that once he looks at the scan. If I am a candidate for the sunny side down technique, that would reduce the heart and lung exposure more.
From what my Onc said, who knows Fisher, the newest conclusion with additional data say there is definitely a benefit to doing radiation. I believe he said that there didn't appear to be much difference up until women were 50 and then there is a dramatic trajectory of benefit that is demonstrated. I'm going by memory, so this needs to be verified.
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Mountain, why don't you want insurance to cover radiation? I mean, OK if you don't choose to have it, but shouldn't other women have that choice?
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Karen, what is this about the gray area of the oncotype test now starting at 12? I hadn't heard about that until reading your post. I thought I was well out of the gray area, my score was 14. I was diagnosed 2 years ago and feel very fortunate that I was able to skip having to do chemo. But if what you said is the new standard, had I been diagnosed recently, might my Onc now be recommending chemo for me?
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About insurance, I would like to see a whole thread on this. My niece can't get her Herceptin covered by insurance. The company says there's not enough evidence that Herceptin improves survival. She threatened to sue them and they said we've been sued before about Herceptin and we always win.
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Rose, for the TailorX trial, the "intermediate score" was moved to 12 from I believe 17. It means there's a new grey zone. Your doctor would MAYBE have said yes to chemo, but there are many more factors, like size, and your grade, which is optimal.
The takeaway for me is that Oncotype is fantastic, but not foolproof.
Mollyann, that makes me so angry. This is people's lives and choices we are talking about! To think any of the insurance big wigs sleep easy at night with their glut of profit.
As for the alternative methods, perhaps for cancer it's dodgier, but there is no question any longer: preventative, including holistic, helps their bottom line by keeping people from getting sick. How about all the money we will pay for supplements to keep a recurrence at bay? Fish oil, for instance?
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