Shorter Radiation Protocol

I believe in second opinions but your story is a great example of how they can drive you nuts! 

First:  All of the options presented are OK.  Both rad oncs are clearly very competent. You just need to decide which course is best for you.

The standard course of full breast rads + boosts once per day, five days per week for 6.5 weeks should probably be your default if you are unsure of what to do. 

I thought the normal Canadian protocol usually had a few boosts after the three weeks so I don't see why insurance would not pay for that. It should cost the insurance company less.  There must be something unusual about that trial. The 10 year results in the New England Journal of Medicine are solid evidence but not as long as the data for the standard protocol. For some breast cancers, especially low grade, relatively slow growing cancers five year data is too short and nasty surprises can happen later, but 10 year data is long enough for most all cancers.  There can still be recurrences but usually no surprising changes in the rates.  

The prone position (on your stomach) is better for some patients and some tumors but not universally best any more than supine is universally best.  

My rad onc recommended the standard protocol as his preferred option but said he also thought  accelerated whole breast radiation protocol (~15 whole breast treatments and 3-5 boosts) was acceptable as his second choice.  It sounds like yours is of the same opinion but did not mention the second option because you were OK with the first.  The patients most likely to be offered the shorter protocol are those for whom coming daily is truly a hardship and those who are older (shorter data follow-up is more of an issue the younger you are).  

I think this description, "He explained that the Canadian study was three weeks as compared to the Canadian standard of five weeks and because in the US the standard is 6-6.5 weeks, he is not convinced that three weeks is as good as 6/6.5. He further explained that the US standard gives a total radiation of 63 Gy (smaller doses each time over a longer period of time), the Canadian 42 Gy (larger doses each time, over a shorter period of time) and what he is suggesting is 52 Gy, so right in the middle." is a very good sumary of the issues. 

I went with the standard protocol of 6.5 weeks because the rad onc and team had more experience with it, did most of their patients that way, and I feared that shorter time with higher dose per fraction might have more acute side effects (I have no good evidence for that but it is hard to measure).  I believe, however, that 3 weeks of whole breast + 3-5 boosts would have been just about as good.

Chefmb -

Guth was my BS, Karp my PS, Formenti my RO and Volm my MO.

Making my surgical decision was hellish, I consulted all over the city (and beyond!  - I feel like Buzz Lightyear), finally ended up at NYU.  Never did go to SV b/c all my decisions were based on the surgery and I didn't feel comfy with them in that dep't.

Sending you a PM. 

Edited to add:

Differences between my DCIS treatment and your IDC treatment:

I'm guessing, but I probably had far more extensive breast surgery than you.  On the other hand, I was able to escape having my nodes mucked around with and I'm sure you didn't have that luxury.  I was also lucky to get through without any infections.

Our rads will be more or less the same nightmare (except that they'll probably radiate your node area while that's left out of my "field").  I don't know if the gy dose is different for IDC v DCIS, I'll have to ask.

I don't have to do chemo, and I'm very grateful for that.  Don't know if you'll have that luxury.

I tested extremely hormone sensitive and am premenopausal, so I'll be on Tamoxifen after rads, I assume you will be as well.

So the differences between our treatment are node surgery and chemo (and the node surgery was one of the many areas of disagreement between the surgeons I consulted).

SS,  I'm not sure that 6 weeks is the standard everywhere.  I'm getting 25 treatments with concurrent boost.  When I asked the rad onc about this (because I didn't know of anyone else getting concurrent boosts), she talked about the data in terms of women my size breast and the location of my tumor.   I really think that the way they deliver the dose is dependent on a bunch of factors (the kind of equipment they are using, the location of the tumor, the amount of residual dcis they need to treat, etc.) 

I agree we should be our own health advocates, but I also think that there are some parts of the decision that are too complex for non-specialists to decide.  I went back and forth over my small margins and never completely understood why they were okay.  But since I couldn't find a single doctor who thought they were not (neither my BS or oncologist nor rad onc; nor the tumor board), I figured that they had to know more than I did about the subject.   I would not beat yourself up about the radiation decision.  You don't have any reason to think that it was a bad choice. 

chefmb,

When I was dx at age 45 my onc said he wanted to treat me as aggressively as possible so he suggested DD chemo. Like you I developed cellulitis and a staph infection 10 days after mx and was treated with IV antibiotics which resulted in my veins collapsing so a port was placed for chemo but I got a staph infection in that wound too and they couldn't use the port.  Anyway, to get back to the point, because the idea of aggressive treatment was already in play for chemo I wasn't surprised when my rad onc suggested following on with what he described as DD rads!!  I had 15 rads with a bolus on the mx scar for every treatment - the rad onc told me that basically it is the same amount of rads but over a shorter period hence the idea of DD.

I had an 80 mile round trip for rads and was still suffering some after effects of chemo so only having to go 15 times was really great - could I suggest that you use copious quantities of a water based moisturiser on the rad area numerous times daily and keep up your arm physio diligently, I also made up chamomile tea with tea bags left it cool and bathed the rad area a few times a day with this.  I finished rads on 29th July 2009 - so far so good!!!!

Best of luck and make sure to give yourself time to rest and accept any and all help and support offered!!!

I had 19 rounds total--the last several being boosts.  It was a piece of cake and i never got sick and tired of going to rads.  as i look back, it was a very peaceful time-=I went the same time each day and was greeted by by the nicest, cheeriest people.  When i completed rads, they gave me a little certificate that was signed by each person.  Aquafor was recommended, and i was told to put it on each day right after rads--that was the best advice!

I need to decide by tomorrow if I should try for the 3 week protocol clinical study...any new thoughts/comments since this last post in November?

Hi all.  This is a long post but I'd appreciatie some feedback from those who have already made the decision for or against a shortened course of radiation treatment. I'm very conflicted on how to proceed.

I'm nearing the end of my chemo treatments and my thoughts are turning to the last phase of treatment- radiation.  I have had radiation consultations with two very respected radiation oncologists both at Philadelphia area hospitals with NCI designations.  Their conflicting advice has left me very confused.  Dr. #1 presented me with with three options:  six weeks full breast, 3 weeks full breast, and 5 day (2x a day) external partial breast radiation. He felt I was a good candidiate for any of these options.  He believes that the shortened three week rad option is just as good as the six week option and US doctors are just slow to adopt newer procedures.  He also feels there is a financial aspect since hopsitals make a lot of money from radiation treatment and there would be  loss of revenue if the standard of care is chopped from six to three weeks.  There is also a ten year cliical study supporting the effectiveness of 6 week versus 3 week treatment.  He explained that there is not as long of a follow up to the effectivenss of partial breast radiation but he felt comfortable enough with the data to date to recommend the 5 day plan.  My surgeon at the same hospital is pushing partial breast radiation, explaining that if I would have recurrance in the same breast outside of the original lumpectomy site, I will be able to have another lumpectomy versus the masectomy that would be needed if I choose whole breast radiation. 

I very much want my treatment to be over so the shortened course of radiation is very appealing to me. But, since I want to make sure I'm making the best decision to be rid of this cancer forever, I went to see Dr. #2.  She is not as enthusiastic about the shortened radiation options.  She would only recommend partial breast radiation to older women (at 53, I guess I'm considered young in the breast cancer world : )    She was a little more agreeable to the three week course of treatment, suggesting that I could enroll in a clinical study currently in progress.  We didn't have a lot of time to get into specifics and she wants me to schedule another appointment in a few weeks.  I was hoping to leave with enough information to make a decision, but that didn't happen.

I'm leaning towards the three week option at this point with Dr. #1.  I would love to hear your experiences with shortened radiation treatments and the reasons you decided to try it (or not try it). 

I am getting ready to begin my radiation for DCIS after lumpectomy. I have a 180 mile round trip drive to the radiation facility. I have had 2 ROs, who know how far I have to drive, recommend the usual 6 1/2 week protocol. One of them off-handedly mentioned the shorter regimen. That was on Tuesday. I'm going in today for the tats, CT etc and I am going to try to get more information about this shorter program. It would save me almost 3,000 miles of driving, or the inconvenience of staying in a motel and being away from my home. I am somewhat surprised that I was offered a mastectomy to avoid this distance issue, but not the shorter radiation protocol. What's up with that?? I have to wonder how much of it is motivated by our for-profit system as opposed to Canada which routinely uses the shorter program. I've got this morning to learn all I can before hitting the road to meet with the RO.

Brookside,

Thanks for your comments. The hospital does have some kind of a place you can stay for the week if needed, but there's something about getting home to work in the garden and sleep in your own bed. Not to mention that I am still working part time and what would I do all day every day in a medium sized town? My surgeon was clearly favoring lumpectomy and just kind of threw mastectomy on the table as an option to avoid radiation. I'm trying to learn all I can and I wonder why the one RO brought it up unless he does think it's a viable option. The other RO I consulted with was in the big city and didn't mention it at all.  I'm going crazy trying to weigh it all out, but I did read the 12 year study of the Canadian trial, which indicates the results are pretty much identical. Most of the trial patients had invasive cancer, which I do not, so I don't know if that makes a difference. It's mind boggling - every time I think I'm past the worst of the stress, something else seems to pop up!

Lauribob - just to throw another spanner in the works, some medical people do not agree with radiation for many in situ cases. On another message board on here regarding people refusing radiotherapy for DCIS there are several ladies who got a second opinion from this Dr Lagios. It might be worth a read.  Below is a cut paste:

"Here is Dr. Lagios' web site. Read all the pages.  I don't know how he handles international patients,  but it is worth a try.  I was amazed how expeditious the process was.  He will level with you and is no fan of rads."

www.breastcancerconsultdr.com/...

For myself, I STILL haven't fully decided to go rads or not. My family doc just said "follow your instincts". And I have invasive, but being a kind that is known to be the least aggressive.

I only really recently found out  that Tubular Cancer is the most well behaved of all BC. Very slow growing, only half as likely to travel to the lymph nodes as standard Invasive Ductal. I had massive clear margins, a tiny Nottingham Prognostic Score.

It seems my odds of recurrence are around 5% and 8.3% on a prognostic tool which didn't take into account Tubular, so that's my maximum recurrence estimated rate at 8.3%. Yet average stats of women AFTER radiotherapy in this country place risk of recurrence at 7.3% - so I would be getting radiotherapy for an improvement in my odds of 1% (however radiation would, in my case, reduce odds to 2.5%, but I don't care too much whether its 2.5% or 7.3%).

But the BIG penny just dropped for me, in regards to us breast cancer ladies, as in our ongoing naturally heightened chance of getting breast cancer. To explain:

As we know the average woman's chance  is 1 in 7 (in my country anyway), so that is 14%? and all of us who have already had some kind of cancer, inherently are more likely to get it again, it could be twice those chances or more. I have yet to see a solid figure there, so its just because "our bodies knew how to make it once, they might do it again". You always see that in the list of possible influences of getting breast cancer "that you have been diagnosed with breast cancer in the past".

HOWEVER, radiotherapy, as far as I can tell, has NO bearing on this figure, its only about preventing a recurrence. For me, a larger inherent risk of a new primary is between 16-26% compared to my tubular cancer 5% recurrence. And radiotherapy doesn't improve chances of not getting a new primary breast cancer, especially, obviously, in the contralateral breast (opposite side), which would clearly be characterised as a new primary.

So if anyone else knows anything about more about this I would appreciate their knowledge.

Its very tricky. The figure to look for when researching is the Disease Free Survival i.e. no recurrence OR new primary. Radiotherapists don't talk about DFS, only recurrence, to my knowledge anyway.

Yes, I read that just today that Tamoxifen is not proven at all to be of any use to DCIS. Its not just Dr Lagois saying that.

I also found out that boosts should not be offered to ladies also having the three weeks treatment. If you are getting boosts you should only be offered the lower gys a day (2 instead of 3).

Also, boosts should be aimed at the bed of the tumour, but this is no longer known once surgery is completed unless metal clips are left in to mark the tumour bed. In my country it seems they are just firing the boosts at the scar?! I know full well my surgery was closer to reductive mammoplasty which very much changed the terrain - all moved around, so that's another reason why they shouldn't have been prescribed boosts  - boosts have no benefit to women 50 and over either, unless the margins aren't clean - yet another reason why my RO shouldn't have been prescribing them to me.  

When I finally met with her again last Tuesday she claimed she hadn't prescribed them (since I had found the guidelines and showed them to her) - then looked at her computer and said she had, but no longer was going to prescribe them. Honestly I think she was away with the fairies. . . . . 

Hi Ladies,

I just had my lumpectomy two weeks ago at Massachusetts General Hospital in Boston, 3.5 hours from where I live.  I went there because they treated me for my laryngeal cancer two and a half years ago and there are some issue with my throat and anesthesia and the fact that I already had a lot of radiation with chemo for my throat cancer.  I am a candidate for partial breast radiation of either 2 or 4 weeks or 4 or 6 weeks for whole breast.  I want the shorter partial because I want to minimize the area being radiated and don't want to have to stay in Boston too long (last time I was there for 8 weeks).  They said they can match the fields to avoid giving parts of my body (especially my heart and lungs) too much cumulative radiation.   Anyone out there gotten the week or two week treatment?

I am meeting with the RO and MO in mid January to go over it all and plan to ask what not having radiation would do for my risk of recurrence.  They say some older women with early stage can skip radiation, but I am only 62.  The fact is that once you get radiation you usually can't have it again.  So if I don't get radiation and it comes back I could get radiation then, but if I get it now and it comes back I will have to have a mastectomy.  Given the poor odds I had with the throat cancer (40% recurrence in first 2 years) and that I am now healthy they better give me a improvement of at least 5% before I will submit myself to further exposure.