Radiation or not?

Ak818,

When I was diagnosied with DCIS in 2007, after I had a lumpectomy for DCIS, I chose not to have radiation. I decided to do this after consulting with one of two doctors who invented the Van Nuys Prognostic Index. This index is a way to calculate your recurrence risk without radiation. It is based on your age, the size of your margins and the grade and size of your DCIS. 

The doctor I consulted with is a world renowned DCIS expert and pathologist, with whom anyone can consult. He viewed my pathology and calculated my risk as only 4 percent, thereby convincing me that the approximate 50 percent risk reduction that radiation typically brings, was not worth it to me.

If you would like to read more about my DCIS journey or the VNPI, please feel free to check out my website or send me a PM.

https://sites.google.com/site/dciswithoutrads/home

Best,

Sandie

There is newer research finding it does prolong survival, at least for IDC.  But DCIS is different and, I think, a tougher call.  If you haven't already, you might want to post your question in the DCIS section.

MOTC, for DCIS, I don't think there is any question that radiation impacts survival. 

Pure DCIS, without a recurrence, has a 100% survival rate.  But overall women diagnosed with DCIS have only a 96% - 98% survival rate.  Since DCIS itself is not life-threatening, the only way that a DCIS patient can die as a result of her diagnosis is if she has a recurrence and if this recurrence is not found until it's invasive (which happens in the case of approx. 50% of recurrences).  Therefore if radiation is effective at reducing recurrences (which we know it to be), then it must also be effective at reducing the mortality rate of those diagnosed with DCIS.  

Thank you to wyldblumusic who posted this link in response to the same question in another thread:  http://www.ncbi.nlm.nih.gov/pubmed/20645008

Here's the conclusion of this study:

CONCLUSIONS: Women with DCIS treated with BCS alone had higher LR risk, and those with a LR were more likely to die of breast cancer. Optimal local treatment is mandatory to minimize the risk of breast cancer death for women with this curable disease.

BCS is breast conserving surgery (i.e. lumpectomy).

LR is local recurrence.

SILVERSTEIN and LAGIOS are respected authorities on DCIS.  Here's what they have to say about DCIS, recurrence risk and radiation;

http://jco.ascopubs.org/content/28/14/e218.full

"...That means if 400 patients are not irradiated, we can expect 42 recurrences, 21 of which will be invasive, two of whom will die. If these 400 patients are irradiated, the numbers will be halved to 21 recurrences, 10 of which are invasive, one of whom will die.  In other words, we must irradiate 400 patients to save one life. Of the 400 patients, 358 of them do not benefit from radiation because they would not have recurred. All of them, however, are exposed to the morbidities of radiation therapy. Are we certain that no lives will be shortened because of irradiation? We are not. Long-term data with current techniques do not exist; however, available long-term outcome data of breast irradiation note small increases in mortality related to cardiac disease and smaller risks of lung carcinoma. It hardly seems worth irradiating 400 women to prevent 21 recurrences and one death.

Does it not make more sense to carefully follow these patients, re-excise the 42 who recur, and irradiate them at that time, thus sparing 358 the time, expense, and morbidity of breast radiation therapy? "

 Yup, makes perfect sense to me!!! 

Breast cancer radiotherapy and cardiac risk: The 15-year paradox!

http://jco.ascopubs.org/content/28/14/e218.full

"If, indeed, the current hypofractionated trials prove to cause excessive cardiac morbidity in due course of time, the smart radiation oncologist can still have the last laugh: he can say, "Oh! We no longer use those primitive techniques," and the verdict will be postponed for a further 15 years!

mathteacher, you missed the point of my earlier post.  DCIS is different.  The survival rate for DCIS is 100% if there is no recurrence.  So survival from DCIS is completely and totally related to whether or not there is a local recurrence (which has the potential to lead to a distant recurrence). Reducing the risk of a local recurrence is in fact the sole objective of DCIS treatment, because it's not the DCIS itself that is dangerous (assuming it is removed before it becomes invasive); it's the recurrence that is dangerous (because 50% of recurrences are invasive).

DCIS is not the same as invasive cancer, where both local recurrence and distant recurrence are concerns.  For those who have invasive cancer, radiation will be given in a percentage of cases where, to put to crudely, the horse has already left the barn.  This means that with invasive cancer, there will always be a percentage of cases where radiation will given and a local recurrence will be averted, but survival won't be affected. With DCIS, that will never happen. 

I'm not suggesting that everyone who has a lumpectomy for DCIS should have radiation.  MarieKelly, that's the problem with the first of the studies you quote.  It suggests that to impact recurrence and survival, all 400 of the women would need to get radiation. I don't think that at all.  Data shows that the most important factor in reducing recurrence risk is the size of the margins. Today we can quite effectively determine who is most likely to benefit from radiation (i.e. those who have a very high recurrence risk without radiation) and who is less likely to benefit (i.e. those who have a lower recurrence risk).  Personally if I had a lumpectomy with 1cm+ margins, I probably wouldn't have radiation.  I think radiation should be given selectively, as needed.  I also think that today it probably is given more than necessary.  But to imply to everyone with DCIS that radiation isn't necessary because "there is no survival value in radiation anyway. It just reduces local recurrence " (mathteacher's quote in the DCIS forum) is factually incorrect for DCIS and shows a lack of understanding of DCIS.

mathteacher, the link you provided on bc.org talks about invasive cancer, not DCIS.  And the study in question did not go out long enough to fairly measure survival difference.

MOTC, you're right.  I've found some interesting studies on this but I'm bowing out of this discussion.  I'm not interested in beating my head against a wall.

MOTC,

Who are you accusing of splitting hairs? Fisher and the National Adjuvant Breast and Bowel Project?

The New England Journal of Medicine?

http://www.nejm.org/doi/pdf/10.1056/NEJMoa022152

Or our hosts at bc.org? http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp

Or:

Breast Cancer Res Treat. 2008 Jun;109(3):405-16. Epub 2007 Aug 9.

259 Patients with DCIS of the breast applying USC/Van Nuys prognostic index: a retrospective review with long term follow up.

????  You think all these peer-review studies are splitting hairs by examining evidence  ????

I should know better than to respond and get dragged into this debate, but here goes anyway.

So, what am I missing here?  The Fisher study, which seems to be the primary study that is driving this belief that radiation doesn't lead to increased survival, actually comes to the following conclusion:  "Lumpectomy followed by breast irradiation continues to be appropriate therapy for women with breast cancer, provided that the margins of resected specimens are free of tumor and an acceptable cosmetic result can be obtained."

Rather than take the conclusion of the study's authors, some women here have reached their own conclusions.  If I understand correctly, the argument being made is that there is no long term survival difference between the lumpectomy only group and the lumpectomy + radiation group and therefore radiation is not necessary.  Furthermore, the case is being made that it's the radiation itself that causes increased mortality over the long term in the lumpectomy + radiation group. Reading the study report, I don't come to these same conclusions.  In fact, mathteacher, to your request that I produce evidence, let me use the Fisher study.

What the study found is:  1) At 20 years, there is a statistically significant survival benefit within the lumpectomy + radiation group, as it relates to breast cancer mortality. In other words, over the long term there were fewer deaths from breast cancer among those who had radiation; and  2) Despite the previous finding, at 20 years there is no statistically significant difference in overall survival between the lumpectomy group and the lumpectomy + radiation group.  This is because the decrease in breast cancer deaths "was partially offset by an increase in deaths from other causes."  Key words: "Statistically significant."  "Partially offset."

Here's how I interpret the results. While there was no statistically significant difference in overall survival, the significant reduction in breast cancer deaths in the radiation group was only partially offset, thereby leading to a directional difference in overall survival favoring the lumpectomy + radiation group.  As I calculate it, the 20 year total mortality rate for the lumpectomy group was 53.33% (304 deaths, 570 sample size) vs. only 49.91% (283 deaths, 567 sample size) for the lumpectomy + radiation group.  These results are not statistically significant; this means that we can't be 90% sure that this difference was caused by the addition of the radiation.  If the difference had been just a bit larger - 54.3% vs. 49.5%, for example - the result would be statistically significant. Alternately, if the sample size had been larger and the results unchanged, the difference would be statistically significant.  Of course if the sample size had been larger it's also possible that the results would have been different - the difference in mortality between the groups might have been lessened or it might have been increased.

In other words, the Fisher study does not prove and is not saying that there is no difference in overall survival.  The study is saying that there is no significant difference.  That's another way of saying that they could not prove whether there is a difference or not.  The directional results lean towards showing a survival difference in favor of the radiation group but the only fair conclusion is to say that we just don't know. So I guess the study doesn't really support either position, although the data leans towards supporting the long-term benefit of radiation  - and that must be why the authors continue to recommend "lumpectomy followed by breast irradiation".

As for the idea that it's the radiation that is causing the additional deaths within the lumpectomy + radiation group, the authors do not say this.  Instead, what they say is that "(o)ur findings also indicate the need for information about the cause of death in clinical trials with long-term follow-up"  In other words, they don't know what led to the higher death rate (non-breast cancer related) in the radiation group.  Without examining and comparing the cause of death of the women in both groups, it's impossible to say that it was the radiation that led to the higher non-breast cancer mortality rate in the radiation group.

.

Gee, all that and none of it has to do with radiation as it relates to DCIS.

mathteacher,

Did you even bother to read my post?  Obviously not. 

I analysed "the definitive Fisher study" results.  You are misrepresenting the study and reaching conclusions that the authors of the study did not themselves come to. You are cherry-picking single insignificant points and implying that they represent the conclusions of the study.  They don't.

As for the article on BC.org, first of all, there are no doctors pointing out anything.  It's simply an article written by someone here at BC.org.  Their reference to the fact that there is no difference in overall survival is a throw-away statement; it's not a grand conclusion, as you as suggesting. That point is in fact meaningless because the studies/sample sizes weren't large enough to determine if there was a significant difference in survival or not.  So it was pretty much a given, even before the study was started, that there would be no difference in survival. Yup, a potentially provocative statement, but statistically meaningless. You are a math teacher (I assume); surely you understand the importance of "statistical significance" in stating research results?

By the way, I notice that the article on BC.org that you've linked is titled "Radiation Benefits Women with Small Cancers After Lumpectomy".  That seems inconsistent with your conclusion, don't you think?  That's because the folks at BC.org are not focusing on that one insignificant and meaningless throw-away line that you've picked out of the whole article. 

I'm done. Coming after me with the same links to the same studies saying the same thing over and over and over is boring and monotonous and certainly isn't an effective argument to support your position.  I won't justify it with any more of my time. 

Am with you, Nancy,am not so worried about survival rates as the best possible treatment for the type of BC I have......

ranafazal,

I liked your last paragraph from your post on Sept 28.

traci

Ranafazal,

I totally get what you are saying. Thank you for replying and helping me understand your thinking and feelings. We are all in this together so good luck to you. I'm sure you will do well.