Article on front page re DCIS, surgery, radiation reoccurance
Okay I've just read the cheery report on the front of BreastCancer.org (which I would link to but my computer will not let me cut/paste) and I am FRUSTRATED.
If you read the report, it comes off sounding like women who get surgery and radiation (like me) have a higher reocurrance of invasive cancer down the road than women who only have surgery. But it doesn't make any mention of what type of DCIS ---grade etc--they were looking at. My understanding is the reason they told me I needed radiation and not just surgery was that I had grade 3 with necrosis and, per my oncologist, it was not a question of "If" it would become grownupinvasivebreastcancer, it was a question of WHEN.
So what was the grade of the women in the study? what was the type of DCIS? If many of the women in the study who had surgery alone had very low grade DCIS well that meshes with what we have been told, that women with low grade DCIS have the least chance of developing invasive cancer. And if many of the women who had surgery plus radiation had high grade DCIS, well don't we all know that we with the high grade DCIS continue to live under the sword of Damocles?
Its so frustrating to get partial information which may lead to women who should have radiation foregoing radiation because of a report. I know given my complete fear of radiation when I was making my treatment decisions, I would have been impacted by such a study.
Comments
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http://www.breastcancer.org/risk/new_research/20110502.jsp
"If you read the report, it comes off sounding like women who get surgery and radiation (like me) have a higher reocurrance of invasive cancer down the road than women who only have surgery."
That's not quite correct. They're saying that of the recurrences, more recurrences are likely to be invasive after radiation. But there are fewer recurrences after radiation. So if you do the math:
With radiation
18% have a recurrence, 54% of recurrences are invasive
54% of 18% means 10% of all patients had an invasive recurrenceNo radiation
30% have a recurrence, 38% of recurrences are invasive
38% of 30% means 11% of all patients had an invasive recurrenceSo if you had radiation, you seem to be 24% less likely to have any recurrence, and 1% less likely to have an invasive recurrence.
The article mentioned that if you have radiation, you have a 1% higher chance of dying from breast cancer, which is disturbing.
Finally, it hints that the radiation recurrences might be actually be new primaries in a lot of cases...
Overall the article is kind of alarming.. it's as if the invasive recurrence can't be prevented, and radiation is only preventing new DCIS... they aren't saying that specifically, but it's how it reads...
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Thanks for saving me the time reading this article, I'm not interested based on what you've all written.
I made the best decision for me with the information available at the time, no regrets that I had rads after lumpectomy. Alternative presented to me was to have a mx if I didn't want rads (never just lumpectomy) and I didn't want that.
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I have read the article 4x.... I find it confusing. It leaves me wondering if I /we who have opted out of rads with mastectomies are going to have to rethink everything?
My Internal Medicine Dr. said to me that dcis is not even considered a cancer in some countrys...
My fired BS stated that PBLM was overkill for dcis...
My fired Rads Onc said Congratulations YOUR CURED....
I will have to toss this new info out to my Surg Onc next visit for some clarity.
I have not been able to exhale since my BMX 11 months ago.
Hugs to you all.
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I agree that it is confusing. And I appreciate xtine's calculation of the percentages but that still doesn't address my problem.
The problem I have is the lack of assurance that the percentages of women with a certain grade of DCIS who did zaps or didn't do zaps is the same.
If the pool of research subjects has a higher % of women with grade 1 DCIS who skip zaps and but with the women who did zaps, there is a higher % of women with grade 3 DCIS, then whats the point of the study? I mean we all have already been told that if you have low grade DCIS you are less likely to have it turn invasive and if you have high grade DCIS you are more likely to run the risk of invasive cancer.
If I don't know the type of DCIS that the women who rejected zaps had, how can I apply this information to me? Similiarly someone newly diagnoised who has high grade DCIS and reads this article may think "Yippee!!! No zaps for me!" when in fact the women in the study who had high grade DCIS are the very ones who had their cancers turn invasive.
Am I making any more sense? Probably not. . . .
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I agree... One would assume that they tried to keep the two groups equal in terms of size & grade of DCIS, but the article doesn't reassure you as to whether they did.
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It leaves me wondering if I /we who have opted out of rads with mastectomies are going to have to rethink everything?
Why? Were you margins close? A while back someone posted information on recurrence and the Van Nuys index. I think the risk of recurrence after mastectomy even for high grade dcis is very low, unless you have a LARGE amount of dcis AND margins under 2 mm AND are very young. On my prophylactic side, I had scattered dcis (3 quadrants) some high grade and according to the van nuys index my risk with mastectomy is low because all my margins were greater than 2 mm and the dcis was very small (microscopic). The long term risk from pure dcis is low, even if the dcis is high grade. I am all for aggressive treatment and even for maximizing treatment, but I like to balance that with a realistic assessment of my actual risk. I did have radiation (after chemo) to one side after mastectomy more than a year before my prophy mx, and I suspect it was because I had so much dcis along with some small invasive triple negative idc (plus some other stuff, cysts and things), but my mass was 7cm x7cm and I had a close margin by the dcis. The long term mortality risk for dcis is lower than my general mortality risk (woman in my 40s), so I am monitored closely but I try not to worry about it too much.
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The reason why I question rethinking is d/t the article stating 30% of women having surgery only will have a recurrence at some point.... and as you said I, and what I understand is that having mastectomies reduces your risk of recur to 1-2%. Just my thoughts as its a confusing article I find. My margins are clear.
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I thought when they said surgery only they meant lumpectomy without radiation???
And, the high recurrence rate with lumpectomy and without rads makes some sense since dcis has a tendency to be scattered (at least this is what I heard). In my prophylactic side, it was like someone sprinkled my breast with dcis (some high grade and some really low grade). There is no way that a lumpectomy could have removed it effectively once any part of it became detectable through diagnostic screening. Oddly enough in my other side, outside of the mass the rest of my breast was normal.
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I read the term "surgery" as meaning lumpectomy rather than MX. I have to say, having had my BMX in April for widespread DCIS, this reinforces my conviction that I did the right things.
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A few points about this study, which has NOT been peer viewed yet.
- It was not a clinical trial meaning the women were not randomized to treatment groups. So there could be bias in which women chose their treatment or how the physicians offered treatment or many other factors (race, genetics, etc.) which could influence outcomes.
- The radiation group was followed for a significantly longer period of time (109 months vs. 72 months) and probably were monitored more closely for disease. To me this means that there were differences in follow-up that might account for detection of invasive disease.
- There is nothing in the information provided about the grade of DCIS in the 2 groups. Again because this was not a randomized trial it is possible that the radiation group could have had more advanced disease at diagnosis.
- Other long-term trials that randomized DCIS patients to lumpectomy or lumpectomy + radiation should be looked at for data on invasive cancer (such as the NSABP B-17 trial that randomized 818 women over 20 years ago)
- Nothing here applies to women who had mastectomy for DCIS
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jyg and others----to be clear I don't regret my decision to have zaps--that was the best information at the time and as the mother of 3 monsters, my ultimate goal was to be here for my monsters.
But I do worry that other women who are scared--as I was--will read this study at the point when they are making their decision and use it to justify skipping treatment that might be the best for them.
Thats why I found it so frustrating.
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