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Topic: Alternative to Radiation for DCIS

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Mar 2, 2012 03:27AM

mrkffr11 wrote:

I posted this on DCIS site but thought I'd try here too:

I would dearly love to hear from other DCIS patients that have choosenLumpectomy without the recommended Radiation follow up as part of the treatment.

I have a lumpectomy scheduled for March 20th and the BS is recommending follow up radiation treatment but I am really opposed to the idea of full breast radiation (left breast) and I just met the radiologist today who warned my that is probably my only option IF I want insurance to cover it.  Apparently a partial breast radiation treatment, which I've seen on these boards, is not likely to be covered (due to my age-47) and the only trial in my area is a randomised trial which apparently means that I could not control if I were assigned partial breast internal radiation or full breast external. 

The way it was layed out to me was IF I choose no radiation I should strongly consider a masectomy which seems like way extreme to me IF I have a highly localized non invasive type of malignancy.

My path diagnosis should show up below.  I've had subsequent MRI screenings and BS mentioned that there is not a lot of 'activity' around the original biopsy clip which suggest that there probably is no 'mass' no mass has yet to be detected - suggesting to me very molecular malignancy.

Should I really consider removing full breast IF I don't want radiation (I have a long history of smoking and don't want radiation any where near heart and particularly lungs).  

Should I ask my BS to remove more tissue than he normally would during lumpectomy to try to get a wider clean margin to have a better chance of no reoccurance?  Will the cosmetic effect be such that I would be better off removing all breast and reconstruct - I have smaller A cup breast size?

Could really use some guidence from others that have choosen to buck the 'gold standard' of DCIS treatement.

Thank you, M 

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 09:19AM MariannaLaFrance wrote:

I had stage 0 DCIS, and was strongly advised to take radiation. I did 6.5 weeks of treatment, but often wish that I had not done it, as my DCIS was very, very small and very low grade.

However, I was scared into accepting it as treatment for my condition.  

Hope you hear from others who've chosen not to do it. 

Dx 1/26/2010, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+, HER2-
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Mar 2, 2012 04:57PM mrkffr11 wrote:

MariannaHB,  There is an awful lot of pressure to follow the 'standard of treatment' for this condition.

Do you mind if I ask why you have regrets.  I'm not your typical presense on the 'Alt Med" site I'm sure.  I don't have any history of illness or bucking traditional methods, but I have not taken the greatest care with my body either.  I've been a smoker for more years than I care to admit and I'm still struggling to quit smoking even after my diagnosis.  Off and on but I've dramatically cut back.

Anyway, for me something tells me (my gut) it is over kill.  While it might be incidental overkill for 98% of the population - I feel like I am in that small group that will develop a secondary medical condition as a result.

Anyway, All the credible Dr. tell me not to worry - but I still do. 

All the best, M

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 2, 2012 06:21PM MariannaLaFrance wrote:

Well, I am pretty conservative when it comes to treating the body. I feel like in many cases, our methodologies in medicine (while enormously valuable), also create more problems.  

In my case, I instinctively knew that the treatment was overkill. Even from the first instance of diagnosis, when the radiologist blew a up a huge picture of my breast (which looked WAY too big to be mine, btw) and showed me the calcifications.  I feel like they pulled out a bazooka to kill a gnat, and I refused the Tamoxifen. I wasn't so lucky with the rads. I fell prey to their pressure, and was in a bad place emotionally. My BS basically made it sound like I was doomed if I didn't do it, to be honest.
 
2 years later, I feel healthy. I wonder if I have heart damage. Daily. Yes, my DCIS was on the left hand side.  How can that radiation NOT affect my most important organ?  
 
Anyway, not here to make anyone feel bad about their treatment, but I definitely feel like I should have opted out of the rads based on my diagnosis.
 
Peace to you, question everything, research it all and ALWAYS get a 2nd opinion. There are conservative in treatment doctors as well as others who will pull out a sledge hammer at the sight of a hangnail. 
Dx 1/26/2010, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+, HER2-
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Mar 2, 2012 08:59PM lucy88 wrote:

Most studies show radiation only prevents local recurrence in ten percent of lumpectomy patients when you read the absolute risk statistics. You will see the 40% figure some places but that is relative risk. Relative risk is only used to push a treatment.

Radiation doesn't increase overall survival due to its ability to weaken the coronary arteries, heart and lungs. Many studies only look at death from breast cancer which are deliberately misleading.

I'm sorry you have to make these decisions. Please don't rush into anything you will kick yourself for in six months. My biggest regret is not knowing what questions to ask.

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson Dx 1994, IDC, 1cm, Grade 3, ER+/PR+
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Mar 2, 2012 09:42PM Hindsfeet wrote:

I had two lumpectomies before doing a mx. I chose not to do rads. I knew if I had rads or not, I could have a recurrence. If I did have a recurrence, I also knew that reconstruction would be difficult. I do not regret my decision. If you decide against rads, make sure you get wide margins, and keep a close surveillance so if it does recur, you catch it early.

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Mar 3, 2012 10:08AM thenewme wrote:

Re: "Most studies show radiation only prevents local recurrence in ten percent of lumpectomy patients when you read the absolute risk statistics. You will see the 40% figure some places but that is relative risk. Relative risk is only used to push a treatment.

Radiation doesn't increase overall survival due to its ability to weaken the coronary arteries, heart and lungs. Many studies only look at death from breast cancer which are deliberately misleading."

Radiation doesn't increase overall survival due to its ability to weaken the coronary arteries, heart and lungs. Many studies only look at death from breast cancer which are deliberately misleading."

Sources, please? 

Mmkffr11,  I understand you're looking for alternatives to the "gold standard," but your doctors should be willing and able to discuss your concerns and questions with you in the context of your individual circumstances and help you weigh your individual risk/benefits and come up with a treatment plan.  The "gold standard" is not at all a strict and inflexible requirement.  If your doctor can't or won't, seek a second or third opinion and find someone you're comfortable with and trust.  In any case, take everything you read here with a BIG grain of salt (yes, including my own advice, of course!)

Dx 11/2008, IDC, 5cm, Stage IIB, Grade 3, 0/9 nodes, ER-/PR-, HER2-
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Mar 3, 2012 07:28PM Kaara wrote:

I am one of the few on this site who had a lumpectomy and elected not to do radiation.  I felt it was overkill for my small stage low grade bc.  I tried to get approval for a external beam partial breast radiation which would have been 5 days 2x a day and over.  I got the runaround from Sylvester after they told me that they could do it.  To me it amounted to nothing more than a bait and switch tactic and I passed altogether.  I am attacking recurrence with an anti cancer diet and supplement program, and weekly visits to a naturopath for IV infusions of Meyer's cocktail and cancer addtitives, along with antioxidants.  I am giving tamoxifen a try as a compromise with my conventional docs.  I will continue as long as it doesn't cause serious SE's.

By all means get a second and third opinion, and one of those opinions should be from an integrative oncologist or naturopath to see what other treatment options you have other than the "standard of care" given by the conventional medical community.

 Doing nothing is not an option for anyone with bc. 

Kaara Dx 11/14/2011, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 4, 2012 10:34AM Beesie wrote:

Lucy, let me ask again the question that thenewme asked..... where's the data to support your statement that radiation doesn't increase overall survival?  The studies that I've seen show the opposite to be true.

Certainly with DCIS (this thread is about DCIS and radiation), since DCIS itself cannot metastize and is therefore 100% survivable, the only way that one can develop mets from a diagnosis of DCIS is if one has a recurrence, if this recurrence is not found until the cancer has already evolved to become invasive (this happens in approx. 50% of DCIS recurrences), and if the recurrent cancer is not removed until after some invasive cells have had the opportunity to travel from the breast into the body.  So it seems to me that if radiation after a lumpectomy for DCIS is able to reduce recurrence rates by approx. 50% (there are many studies that have shown this), then there is absolutely no question that radiation will reduce mortality rates for those who start out with a diagnosis of DCIS and who choose to have a lumpectomy.

Or course it is true that it is the absolute benefit of radiation that is important to each individual making this decision, not the 50% relative benefit. In "'M"s case, because it appears that her area of DCIS is very small, it may be possible for her surgeon to deliver very wide margins, which could bring her recurrence risk, without radiation, down to a very low number. In that case, the absolute benefit from radiation might in fact be very small. I've posted about this to "M" in her thread in the DCIS forum, where the discussion has been on-going. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 4, 2012 11:47AM , edited Mar 4, 2012 11:50AM by cookiegal

Isn't there now a version of oncotype for DCIS that helps with this decision?

About the Oncotype DX Breast Cancer Test for DCIS (Ductal Carcinoma In Situ) and Pre-Invasive Breast Cancer

The Oncotype DX® Breast Cancer test for DCIS patients is the first clinically validated genomic assay to provide an individualized prediction of the 10-year risk of local recurrence (DCIS or invasive carcinoma) to help guide treatment decision-making in women with ductal carcinoma in situ treated by local excision, with or without tamoxifen. Learn more about this new test for DCIS patients. 

9. Can the DCIS score provide information about radiation benefit?

It is not known whether the DCIS Score predicts the relative benefit of radiation. However, since local recurrences are most often manageable, many physicians recommend surgery alone for patients with low recurrence risk. 

You deserve a cookie!
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Mar 4, 2012 02:12PM mrkffr11 wrote:

Beesie,  I've seen this stat before in an article that seems to both confirm and contradict the benefit of radiaion.

"Excision alone was associated with a small, but statistically significant improvement in breast cancer-specific survival (99.7% versus 98.3%, P=0.02)."

The same article, link below, suggests to me at least that while local reoccurance is reduced with lump + rads there seems to be an increase in bc in another site or opposite breast.

"Radiated patients were more than twice as likely to have recurrence in a different breast quadrant from that of the primary tumor (28% versus 10%, P=0.0016), constituting a new tumor."

This is from an article I found while researching radiation follow up treatment on American Society of Breast Surgeons.

http://www.breastcancer.org/risk/new_research/20110502.jsp

For me the article is confusing, suggesting that radiation treatment is recommended for DCIs however leaves me with questions as to the harm it could also cause down the road with secondary cancers.

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 4, 2012 02:15PM mrkffr11 wrote:

Cookiegal, Thank you, I plan to ask my BS about getting this new test done.  He mentioned it when I discussed with him my reluctance to follow up the surgery with radiation.

He has been very understanding of my reluctance but he still feels very strongly that radiation is the treatment option that he recommends.

But he will still work with me if I choose not to do the follow up.  He has confirmed that he has had other patients that have choosen to forego this treatment.

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 4, 2012 04:55PM Beesie wrote:

mrkffr11,

The small survival benefit from radiation that you reference from the BC.org article makes perfect sense.  The fact is that numerous studies have shown that the long-term survival rate (from BC) of those initially diagnosed with DCIS is 98% - 99%.  So with an overall survival rate that is so high, the survival benefit of any single treatment (additional to surgery) obviously will be quite small. Considering how high the survival rate is, it's actually quite impressive that post-lumpectomy radiation is able to increase survival by a statistically significant amount, from 98.3% to 99.7%. 

The purpose of my earlier post was to address Lucy, who claimed that local recurrence rate reductions from radiation are irrelevant and only survival increases count, and who further went on to say that there is no survival benefit from radiation.  I was trying to explain to her (and others who may be reading this) that with DCIS, local recurrence and long-term survival are directly linked because DCIS is 100% survivable unless there is a local recurrence.  The data that you provided proves this to be true and confirmed that there is in fact a survival benefit from radiation for those who have a lumpectomy for DCIS.   

As for the issue of the increase in contralateral cancers or other causes of death from radiation, many studies have tried to quantify this. Certainly there is some increase, but overall the benefit of radiation (in terms of reduction in recurrence rates and increases in long-term survival) has been shown to outweigh the risks of the radiation (in terms of increases in contralateral or other cancers and radiation related mortality). In other words, radiation therapy for BC produces a net benefit, reducing overall mortality, i.e.death from all causes (not just BC). Note too that in order to get relevant mortality data, studies by necessity need to look at women who were diagnosed and treated many years ago -  a time when radiation regimens were more harsh and damaging than they are today.  This suggests that the overall net benefit from radiation therapy today likely will be better than these older studies show.  

Of course it all comes back to what someone's recurrence risk is to begin with, which will determine how much benefit they will get from radiation. If you start with a high recurrence risk after surgery alone, you will get a substantial reduction in risk by having radiation, and for some women, this will turn out to be a life saving therapy. For those with a high recurrence risk, the survival benefit from radiation will be greater than the risks from the exposure to radiation.  However for someone whose recurrence risk after surgery alone is small (as may be the case for you, given what you know so far about your diagnosis), the benefit from radiation, in terms of a 50% reduction of recurrence risk, will also be small.  In cases like this, the risks from radiation likely do outweigh the benefits.  So certainly radiation is not appropriate or necessary in all cases.  

Here's an interesting analysis of a large number of radiation studies covering 42,000 women:  

Effects of radiotherapy and of differences in the extent of surgery for early breast cancer on local recurrence and 15-year survival: an overview of the randomised trials 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 4, 2012 05:04PM MariannaLaFrance wrote:

Beesie's information is good, but I still have to ask myself why the doctors so heavily pressured me to receive rads, when my oncotype was very, very good (in terms of low risk, low grade), I had excellent margins (actually, they found NO evidence of cancer, meaning that they pulled out the entire cancerous bit with the stereotactic biopsy).  Even so, the BS was very, very adamant about the radiation treatment. My DCIS was 2.4mm.

Dx 1/26/2010, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+, HER2-
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Mar 4, 2012 06:25PM mrkffr11 wrote:

A lot of very good information - thank you all. 

I have much to think about.  M

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 4, 2012 11:13PM bluegentian wrote:

M, I just want to say that I was recently in your shoes. I had DCIS in both breasts at the same time, grade 3 in one, grade 2 in the other. And because of near fatal pneumonia I had a few years ago, I did not want radiation near my lungs or heart. I had double lumpectomies, and then needed to consider treatment. I saw several people and each doctor presented the same statistics, but the standard of radiation and tamoxifen was suggested, leaving the choice to me. For my lumpectomies (which were very easy, by the way) I told the surgeon to take as wide a margin as she wished. She did. My margins were clear. I was told I could take some time to decide about the treatment. I decided to go to the Mayo Clinic for a 2nd opinion, to a doctor I had read about who does lots of work with breast cancer, including research. While he said that mastectomies would be "reasonable" and radiation would be safe, he also said that close monitoring would also be acceptable. He said radiation helps about 6-10 women out of 100, and since mine was small and early, I could feel comfortable that any recurrence would probably be the same, in which case I could have another lumpectomy, or mastectomy at that time. I have chosen to go without treatment at this time, to have MRI's for monitoring (mammogram missed one of mine) and to do everything I can to be as healthy as I can - exercise and diet, some supplements, etc. The doctor I saw said that he was attending a conference (last friday) about whether or not radiation should always be recommended. Somehow I lost my fear while talking to this doctor. The DCIS is gone and may never recur, and if it does, it will be found very early again and can be dealt with. I would think that waiting until you have the lumpectomy, seeing what they find, then perhaps getting a 2nd opinion about treatment if you wish in a major cancer center. It is a lot to think about. I know I was a bit dizzy and anxious with the decision for a few months, but now I feel very comfortable and at ease. Good luck to you.

Dx 10/4/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+
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Mar 6, 2012 04:09PM mrkffr11 wrote:

Dear Blue,  thank you for taking the time and sharing your story.  I am more and more encourage the more I hear from others who have taken similar path as I am contemplating.  I know the recommendations and have been given the risks and understand it is my choice.  I am looking at my comfort level and hearing from others has been hugely helpful. Thanks again, M

Dx 1/16/2012, DCIS, Stage 0, Grade 2, ER+
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Mar 6, 2012 08:03PM lucy88 wrote:

Bluegentian has a very honest doctor:

"He said radiation helps about 6-10 women out of 100, and since mine was small and early, I could feel comfortable that any recurrence would probably be the same, in which case I could have another lumpectomy, or mastectomy at that time."

He used absloute risk statistics rather than the relative risk statistics used as a sales pitch by less scrupulous doctors and studies. If somebody tells you 40 or 50% they have manipulated the stats.

True radiotherapy does reduce local recurrence less than 10% of the time over five years. But it doesn't help you live longer because at the end of twenty years you may be in the ground (tho your breasts will be fine). What we care about most is how long we live, right? OVERALL SURVIVAL statistics are the indicator of that result. 

Here is a study posted on BCO http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp:

Check out the next to the last line: "There was no difference in overall survival in either trial between women who had radiation treatment and women who did not."

----------------------------------------------------------------------------------------

Radiation Benefits Women with Small Cancers After Lumpectomy

What breastcancer.org says about this article...

Radiation Benefits Women with Small Cancers After Lumpectomy

After lumpectomy alone with clear margins, chances are that you are cancer-free. But your doctor will talk to you about treatment you can have just in case some cancer cells were left behind.

In this situation, getting the best breast cancer treatment can feel like a balancing act: You want to do as much as you can to get the cancer out and lower the risk of it coming back. But you'd like to avoid uncomfortable side effects that might lower your quality of life.

In this study, the researchers wanted to see if there was a group of women who could get just hormonal therapy after lumpectomy and skip radiation therapy. So they looked at a group of post-menopausal women whose cancers are the type associated with the most favorable outcomes:

  • hormone-receptor-positive,
  • smaller than three centimeters, and
  • node negative.

If you're in this group, you have a very low risk of the cancer coming back.

As these results show, even women with a very low risk of recurrence can benefit from radiation after surgery. This means that so far, no group of women has been found that would NOT benefit from whole breast radiation.

Remember that no single treatment plan is right for everyone. If you want to do everything possible today to lower the risk of ever seeing the cancer again, then radiation after lumpectomy may be a very important step for you. If you have a small cancer that has been removed with wide and clear margins of resection and you're more concerned about how radiation will affect you, you may want to talk to your doctor about skipping radiation and just taking hormonal therapy. Your risk of the cancer coming back in the same area is likely to be higher, but how long you live will probably not be affected.

Instead of having whole breast radiation, you can also talk to your doctor about the potential role of partial breast radiation. Studies are now under way to test the effectiveness of radiation delivered just to the area around the cancer. This is called partial breast radiation. Promising results after four years of using this approach have led to a clinical trial that is now comparing partial breast radiation to whole breast radiation. The trial is called the National Surgical Adjuvant Breast and Bowel Project (NSABP) B-39 study. Talk to your doctor-you may be able to enroll in the NSABP B-39 study.

Juggling risks that may affect your life can be very uncomfortable. You need to talk to your doctors and family, and consider all your options, to decide on the plan that's right for YOU.

The February 2006 Research News section was made possible by an unrestricted educational grant from Genentech BioOncology.

Research News on Radiation Therapy

More Research News on Radiation Therapy (39 Articles)

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Reviewed study: "Radiation Benefits Women with Small Cancers After Lumpectomy" by M. F. X. Gnant and others, San Antonio Breast Cancer Symposium, December 8, 2005, Abstract 8

Is this for me? If you have small, early-stage invasive breast cancer and are wondering if you can skip radiation after surgery, you might want to read this article.

Background and importance of the study: Breast-conserving surgery lumpectomy followed by radiation-has become a standard treatment for women with breast cancers that:

  • are small to medium in size (usually four centimeters-about two inches-or less in diameter),
  • are limited to one place in the breast, and
  • can be removed with clean margins.

Radiation to the whole breast after lumpectomy has been recommended for all women who choose breast conservation (instead of breast removal, or mastectomy), regardless of the women's age. This "standard of care" recommendation is based on many large studies that compared lumpectomy plus whole breast radiation to lumpectomy alone. These studies showed that radiation therapy after lumpectomy significantly reduced the risk of the breast cancer coming back in the same breast.

The studies also found that women with node-negative disease lived equally long lives after lumpectomy alone or lumpectomy plus radiation. Women with node-positive disease had an increase in survival. The main benefit from radiation is to lower the risk that cancer might return in the breast, requiring more surgery and possibly other treatments.

Other treatments may be given after surgery. Hormonal therapy is a medicine given after surgery for hormone-receptor-positive breast cancer. Hormonal therapy:

  • lowers the risk of the cancer coming back,
  • improves survival after surgery, and
  • lowers the risk of developing breast cancer in the other breast.

With all these different types of post-surgery treatments, it would be helpful to know who needs radiation treatment and who might do fine with hormonal therapy alone. Several studies have looked at whether hormonal therapy offers enough protection against recurrence after lumpectomy for women with small cancers-eliminating the need for radiation. This could spare some women the inconvenience, side effects, and cost of radiation.

The study reviewed here continues to look at this important question. Keep in mind that ALL of the women in this study had relatively small cancers and no lymph node involvement. They then received hormonal therapy and about half received radiation too. So this study does not address the role of radiation alone without hormonal therapy.

Study design: Austrian researchers used the results of two studies conducted by the Austrian Breast Cancer Study Group (ABCSG) to identify groups of women who had an extremely low risk of recurrence (the breast cancer coming back).

All the women were post-menopausal and had breast cancer that was:

  • hormone-receptor-positive,
  • smaller than three centimeters, and
  • node negative.

All the women had lumpectomy followed by different types of hormonal therapy:

  • In ABCSG-6, 698 women took tamoxifen with or without aminoglutehimide (an old-fashioned kind of aromatase inhibitor).
  • In ABCSG-8, 875 women took either five years of tamoxifen or two years of tamoxifen followed by three years of Arimidex (chemical name: anastrozole).

About half of the women in each study were randomly assigned to receive radiation after lumpectomy and before hormonal therapy. The other half had lumpectomy followed by hormonal therapy-without radiation.

Results: After about 10 years of follow-up in the ABCSG-6 trial, the cancer came back in

  • 3.3% of the women who had radiation, compared to
  • 5.2% of the women who didn't receive radiation.

However, this difference was not significant, meaning it could be due to chance rather than due to the radiation.

After about four years of follow-up in the ABCSG-8 trial, the cancer came back in

  • 0.24% of the women who had radiation, compared to
  • 3.2% of the women who didn't have radiation.

This difference was statistically significant, meaning that it was likely due to the radiation and not just to chance.

**********There was no difference in overall survival in either trial between women who had radiation treatment and women who did not.*************************************

Conclusions: The researchers concluded that radiation therapy to the whole breast can help reduce the risk of recurrence in women with small hormone- receptor-positive breast cancers, even if they receive hormonal therapy after lumpectomy.

"Not knowing when the dawn is coming, I open every door." -- Emily Dickinson Dx 1994, IDC, 1cm, Grade 3, ER+/PR+
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Mar 8, 2012 11:37PM meny wrote:

I posted the following on the DCIS thread -  edited a bit here. 

I  also am considering foregoing rads. At least in order to see what other options there are. I've had a lumpectomy for DCIS - Grade 3 . It was 2cm. High grade (3) solid type associated with necrosis,  focal. clear margins.

One thing the radiation oncologist impressed upon me - more than once -  was that whether one has rads or not makes no difference in 'survival'.   Presumably because with regular screenings any reocurrence can be caught at an early stage. Of course the reocurrance might then have to be treated with rads. Also, statistics are funny - and I don't really understand them. Rads cut the risk of reocurrence in half - but I've been told typically over 5 years the risk of reocurrence is 10% no rads and 5% rads. That doubles over 10 years and at 15 it's 35% no rads to 20% rads. Another thing that gives me pause is rads supposedly drop the risk of THIS DCIS coming back. Not a new occurence. So, when I think about, reduced risk of 5% vs. 10% in the short run (maybe higher than 10? because of high grade?) , no difference in survival, and reduced risk for just this DCIS, I'm inclined to shy away from the rads and their possible side effects - lung issues maybe. Although they do the procedure in a prone position here which supposedly, since the breast hangs down, it is separated from the organs and so they don't hit the lungs or heart. (left side). Frankly, surgery frightens me less than anything systemic. That's just me. I'd prefer surgery - done and over with - than something slowly debilitating or staying in my system. I've also been told I can do drug therapy to cut reocurrence as well and will be meeting with that doctor but frankly taking drugs for 5 years doesn't appeal either.  I just don't want to rush into rads and maybe interject a new worry about lung or heart problems down the line.  I can also opt for mx/recon, and rads aren't the best way to go with that option. . Also, the rad onc. noted  that while reoccurences after rads were less frequent they tend to be more agressive. There's a study that mentions that.  I have a copy of it here - I'll see if I can find it online and post a link. The seeming contradiction of rads reducing the rate of reocurrence by 50% (there are those statistics again)  yet having no impact on survival leads to the conclusion - as noted by the RO -  that rads reduce the reoccurance of non-fatal reoccurences. 

Also, the BS mentioned that in cases of low grade DCIS they're often foregoing rads these days. "

----

The study linked above - by Lucy - on bco - points to the same thing the RO told me - while less frequent, reoccurences in irradiated patients tend to be more agressive.   Here is the statistic from the study - actually two separate studies, one comparing Lumpectomy alone (LO) with Lump + rads (LRT) , and another comparing L+rads with L+rads + tamox.  " the 15-year cumulative incidence of breast cancer death was 3.1% for LO, 4.7% for LRT (B-17), 2.7% for LRT + placebo (B-24), and 2.3% for LRT + TAM."   A comment on that in another paper "We speculate that an invasive IBTR after radiation therapy may be biologically more aggressive, and that many of the invasive IBTRs in the lumpectomy-alone group are biologically indolent," the researchers note."   

 Ah, found a link - you might have to sign up for a free account  http://www.medscape.com/viewarticle/739389  The material is dense (at least to me) and it's about 11 pages on paper.  There's also the response  from the the RO   http://jnci.oxfordjournals.org/content/103/22/1723.short?rss=1 but I can't find a free link online.   And This talks about the study in easier language. http://www.medscape.com/viewarticle/739530

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Mar 19, 2012 10:06AM Ruby- wrote:

More on the rads issue

Radiation generates cancer stem cells from less aggressive breast cancer cells
By Kim Irwin February 14, 2012:

Breast cancer stem cells, thought to be the sole source of tumor recurrence, are known to be resistant to radiation therapy and don't respond well to chemotherapy.

Now, researchers with the UCLA Department of Radiation Oncology at UCLA's Jonsson Comprehensive Cancer Center report for the first time that radiation treatment, despite killing half of all tumor cells during every treatment, transforms other cancer cells into treatment-resistant breast cancer stem cells.
 

http://newsroom.ucla.edu/portal/ucla/radiation-treatments-generate-229002.aspx 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-
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Mar 22, 2012 10:59PM dp4peace wrote:

Hi M,

I had a partial mastectomy and then re-excision in Oct 2011. I had a close margin, but have elected not to have radiation. It's been a two+ year journey for me. First diagnosis was Jan 2010, but I did not have a re-excision or radiation at the time. Did a major detox/nutritional program that I am still following. 1.5 years passed and had to have another biopsy. I elected partial mastectomy to remove suspicous area (which was residual DCIS not recuurance according to Dr. Lagios) Had 2nd opinion on pathology from Dr. Lagios who is 30 year DCIS pathologist based in Nor CA. Highly recommemnd this. He changed my pathology diagnosis from grade 2 to grade 1. Also, I met a friend on this site (Sandie Walters) who created a website called "DCIS Without Rads." I found her story and site very helpful with great resources. I discovered the RODEO MRI and have recently had one which was clear. My full story and resources can be found on my blog www.DCIS411.com.  

Donna Pinto Dx DCIS, 3cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Mar 23, 2012 07:09AM Ruby- wrote:

hI dp4peace ! am not DCIS, but linked to your site anyways, loved the first few words which greeted me: "there's a hysteria around breast cancer" - could not have said it better !!!

Will certainly continue reading, have a great day Smile 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-
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Mar 24, 2012 01:17PM dp4peace wrote:

Thanks Maud. Nice to get some positive feedback. I guess I am too "alternative" in my perspective and that has caused serious concerns on other threads that I will influence others in a "dangerous" way. My blog/website has gotten some serious criticism for some of my "alternative" sources. I have found so much peace of mind and I only want to help others.

Thanks for the UCLA info. I also read a paper by Dr. Lagios which states that while you will reduce your risk of DCIS recurrence with radiation therapy, you will also increase your chance of invasive recurrence with radiation therapy. Doesn't make sense for me to have radiation. My Oncotype score just came back as low risk for invasive cancer so that just gives me more peace of mind about my decisions.

I like your quotes in your signature!  SmileDonna

Donna Pinto Dx DCIS, 3cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Mar 24, 2012 01:28PM dp4peace wrote:

Marianna, I had the same pressure to do radiation. That's why I saught several opinions. I now have a Dr. who does not recommend radiation for me, but is recommending tamoxifen and follow up with MRIs. I am still investigating, but leaning towards not doing tamoxifen, but increasing more natural means of risk reduction. Mt naturopathic doctor is recommending mistletoe iscadore shots. I need to do some homework on this. I found there is a good thread talking about pros/cons so I will be checking it out.

Thanks everyone for all the great info on this thread! ~ Donna

Donna Pinto Dx DCIS, 3cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2-
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Apr 3, 2012 03:39PM Susan1998 wrote:

Last month, I was diagnosed with a very small, low-grade DCIS with clear margins after the pathology came back from my lumpectomy. Today I met with the radiation and medical oncologists. Due to what I believe to be estrogen dominance factors well in place before my Dx and before the screening mammogram, I have elected to not undergo radiation therapy or use Tamoxifen. Both oncologists instructed me to pick one or the other to decrease my chances of reccurance. I have elected to implement and maintain a healthy lifestyle with balanced hormones, instead.

I think it is very much a personal choice, but it has to be an educated one, as well. The radiation oncologist told me it is still possible for DCIS or invasive cancer to reoccur even with the radiation. And, of course, they only radiate the affected breast. So it is still possible for cancer to show up in the other breast. But I think all decisions need to be made based on each woman's individual medical information alongside medical professionals. I have opted for close follow up. In fact, my next mammogram is only two months away. If cancer returns, I likely will have a mastectomy. But DCIS is rather nebulous: no doctor can tell which women will have reccurances.

I figure with close follow up and with the knowledge of what could happen, I should be able to handle things if BC returns. So, for me, the benefits of radiation (right now) do not outweigh the drawbacks.

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Jun 17, 2012 12:08PM purple32 wrote:

I am one of the few on this site who had a lumpectomy and elected not to do radiation.

Me too, Kaara.

Lymphedema on LEFT. NO radiation. 2 clean nodes. purple32. Hope is our light ... in the night. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Jul 2, 2012 07:40PM , edited Jul 3, 2012 01:51PM by Infobabe

I too opted out of rads for my low DCIS.  

I have just received my 2nd opinion on the path report from Dr.Michael Lagious and he says I have been well and completely treated and I need no rads or Tomoxifen but to monitor with mammograms. (paraphrased).

 I talk to him in person on July 5.  I have a lot of questions to better understand what I must do going forward.  I was prepared to have the mastectomy.

I have read an article that says that half DCIS patients elect to forgo rads.  It also says that DCIS patients go through a much harder time deciding  on treatment than those with higher grade breast cancer. 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 4/30/2012 Lumpectomy: Left
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Jul 2, 2012 08:31PM Beesie wrote:

infobabe,

What great news that Dr. Lagios made a clear and definitive statement about what he thinks about your situation. Good too that you actually get to talk to him in a couple of days. Hopefully after that discussion you have all the answers to your questions and you are comfortable with your decision on what to do - or not do - next. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 15, 2012 06:28PM countrygreen wrote:

I also have DCIS and had a lumpectomy 10-15. I am returning in Jan to have surgery for clean margins. My surgeon told me standard procedure is 6 weeks radiation to follow and explained that radiation in controversial, however majority of medical field recommend it, although at 0 stage some in the field do not believe it is necessary. I just recently am questioning the true necessity of it and am researching on line. It does seem more and more like an overkill for o stage. Progress continues to reveal things to us in stages, like mastectomys were standard and now not needed years later, replaced by lumpectomies. I am looking for others who have opted out of radiation and pill, please advise, thanku

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Jan 16, 2013 01:12PM , edited Jan 16, 2013 01:17PM by MMulder

Hi,  I am so overwhelmed right now all I do is cry.  My husband and I just met with our 2nd opinion oncologist today.  She is a researcher and known all over nationally.  My husband has done so much research and she was so impressed.  She was very kind and said she would support whatever we decided to do but she recommended radiation.  I am almost more scared of the risks of radiation than the risks of a reoccurence.  My excision was 9cm x 6cm x 4cm.  No cancer found in the surgerical path report.  It basically got it all in the biopsy.  Please give me hope.  I am really scared.  You can see my diagnosis below.  I don't know who to trust.  The researcher at UAB in Birmingaham, oncologist at St. Vincent's or the Dr. Lagios (sp?) in CA.  HELP!  How do you really know what to do with so much controversy?  The researcher kept emphasizing that I am so young so a higher risk (44).

Dx 11/19/2012, DCIS, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/2/2012 Lumpectomy: Left; Lymph node removal: Sentinel, Left
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Jan 16, 2013 02:58PM Beesie wrote:

MMulder, you asked about the possibility of passing on radiation back in December, and your question generated a lot of discussion.  Have you read those comments and looked at the links?  If not, it might be very helpful.  Here's a link back to that discussion thread:   Topic: anyone with low grade dcis not having radiation  Your post was on December 21st and a rather interesting and heated discussion followed!

As is noted in that thread, treatment standards have been changed to suggest that rads is not always necessary after a lumpectomy for DCIS.  Unfortunately the NCCN Treatment Guidelines don't provide specifics as to when it might be possible to pass on rads; it just says to discuss it with your doctor.  Most doctors have not moved yet to accept that in some cases rads isn't necessary, and that may be the problem you've encountered with the doctors you've spoken to. 

Your signature line indicated that your DCIS was grade 1.  I know it was all removed during the biopsy; do you have any idea how large it was?  How many mm?

And with such a large area of breast tissue removed, have your doctors given you any idea of what your margins may be?  My guess is that your margins are probably well above the 'ideal' 10mm size.  So with all that put together - grade 1, likely a very small area of DCIS, and likely very large margins - you probably have a recurrence risk that is in the low single digits.  In recommending that you have rads, did either oncololgist tell you what they estimate your recurrence risk to be, and how much rads would reduce that? 

It is true that because you are younger you are higher risk.  But if the recurrence risk for a situation like yours would be 4% for someone who is older (just as an example), then for you maybe it's 6%.  And since rads generally reduces recurrence risk by 50%, this would mean that you'd get a 3% reduction in risk by having rads.  I'm just pulling numbers out of the air here, although they are probably somewhere in the ballpark.  What you need to understand is what your risk really is, and based on that, whether the benefit from rads is worth it to you, or whether you are okay to live with your risk level without rads.  

The way I see it, your oncologist owes you this information. She cannot expect you to make this decision without this information.  So I'd recommend that you go back or call and specifically ask this question.  I'd also recommend that you contact Dr. Lagios to get his take on your situation, and particularly, how your age factors in. 

I hope this helps.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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