Choosing no radiation for DCIS

Hi bernall,

Ultimately, each of us is the final decision maker when it comes to tx. I know you have already had a second opinion but I sense you don't have faith in that because you stated that our opinions mean more than the doctors. While that is very complimentary, please remember that none of us are medical professionals ( even the few who are don't give online consults and our stories are simply our own experiences. You need to make your tx decisions based on professional recommendations that pertain to your unique situation. Best wishes with whatever you choose.

Bernall-I would also suggest discussing with RO. Each facility does a little different technique. I was very anxious about radiation to left breast due to history of cardiomyopathy three years prior to this diagnosis. My cardiologist and my RO both felt radiation has evolved enough to safely have radiation to left breast. I did not have prone or breath holding where I went but it was explained to me that angle of radiation made this safer than past techniques. It is stressful but continue to gather all the facts. Best of luck

Hi Bernall, ask the radiologists about the "Canadian" protocol.  It involves, essentially, three weeks (actually only 16 days if they don't do a "boost") of external whole breast radiation.  The dose is higher than the standard dose, but it is done in a much shorter period of time.  It is The Standard protocol now used at Memorial Sloan Kettering (where I went) for those with early stage breast cancer (including DCIS, stage 1 and stage 2 without node involvement).  It is now also used as a primary protocol at Johns Hopkins. My radiation oncologist told me that the lengthy protocols still in use are partly a money-maker for the facilities.  MSK's previous protocol was 25 days. As Blinthedesert stated in her post, above, they can tell you exactly how much of the lung will be exposed.  As in her case, in my case it was a trivial amount.  Some believe that low nuclear grade DCIS (grade 1) can sometimes avoid radiation, but I asked my RO about it, as she has done many research studies on this.  Basically, those with low grade DCIS are still at risk for recurrence without radiation, it's just that their risk extends out further (it takes longer for tumors to grow). I had high nuclear grade (multifocal) with comedonecrosis, so I didn't hesitate to do the radiation, but I don't actually know what I would have done in your situation.

Hi Bernal, I read up on IMRT, and it is not the same as the Canadian protocol. In IMRT, the way I interpret it, the radiation is directed to the tumor site, or in the case of DCIS, the area that the DCIS was located.  The Canadian protocol is standard external beam WHOLE breast radiation, in which the radiation is directed to the entire breast, normal tissue as well as the area of what they call the tumor bed. The Canadian protocol differs from standard external beam whole breast radiation, in that the amount of radiation received during each individual treatment is higher than that received during a standard treatment. In other words, the dose is higher, but the treatment period is shorter.  This is no longer considered an experimental protocol, and it is being offered throughout the country.  In certain situations (as with the standard protocol), individuals having the Canadian protocol may receive additional boosts to the tumor bed.  Based on my reading of the literature, IMRT is still considered experimental for breast cancer treatment, although it is used with other cancers, such as head and neck cancer.

You may ask why should there be "whole" breast radiation?  The reason for that is that there could be microscopic cancer tissue remaining in the areas that are considered normal tissue, so the radiation is directed to the entire breast, and getting any areas that could potentially have recurrence later.  Anyway, major breast cancer centers are moving to this shorter protocol with appropriate patients, but it is taking awhile to catch on.  Some radiation oncologists, particularly those who don't practice in those large settings, are reluctant to give up those extra weeks of treatment, because they are uncertain if the shorter protocol is really effective.  And then there is the monetary incentive to keep the protocols longer.  You will be surprised how much radiation therapy centers/hospitals receive for each treatment. This website (BCO.org) posted an article not that long ago, I believe, about the issue of the relatively slow implementation of the Canadian protocol.

I had no skin difficulties with the Canadian protocol, whatsoever.  I used the moisturizers liberally. I did experience fatigue toward the end of the three week period (16 days of treatment), and felt it for awhile afterward.  This is a very common side effect of all radiation. It goes away a few weeks after treatment.  I continued to work and exercise during all of that time, but modified the exercise regimen.  I'm told that exercise does help people get through it.  They also told me that I wouldn't have any side effects, but I did have the fatigue. Relative to those who have more extensive radiation directly to the chest wall (post mastectomy) and the axillary nodes, this amount of radiation is manageable for many people.  I never even bothered posting on the radiation threads.  I suspect that those who do have problems are more likely to post than those who sail through. The Canadian protocol is becoming standard of care for early stage bc, because it is shorter and doesn't cause more side effects than the lengthier treatment.  This has been studied.

bernall-something else to consider is what is available near you or are you willing or able to travel? I also had several people forward me info on shorter courses of radiation but none were available in my immediate area. When I did read up on these studies I noticed most studies were done on women over 50 or 55. Being younger with very high hormone sensitivity I wasn't confident these results were really appropriate for my situation which was confirmed by my RO. Of course, they don't offer the shorter course here and radiation is very pricey so that could play into recommendations but I would like to believe he makes the best recommendation for each patient even if that means going elsewhere. It would be great to have shorter course-it was not easy to go for 7 weeks but I do not regret my decision.

 It sounds like you have gotten a lot of information here and from your doctors-might be time to write a list. First step is what do they -your docs- recommend  and ask why. They should be able to tell you why they would recommend one course or another based on your specific case. Second step-what does your insurance cover? Do you have the resources and time to go elsewhere? Most important step-what do you want and why-this might help you and your doctors find a plan that meets all you needs. Time to pull it all together based on your situation and I bet the answer will come to you. Best of luck.