I don't understand...

Your question(s) is(are) good ones and they are ones that doc's all over America are asking right now!  AND you are not whining!  If you were a grade 3 there would be a stronger case for radiation because there is good evidence that Grade 3 does move from that grade into Stage 1 (when and why it transforms they cannot answer) but based on your concerns (they were similiar to my own concerns) I would do more research here (Beesie has some strong, informative posts on DCIS here) as well as outside research.  Have a second opinion but of course a radiation oncologist has a "dog in the race" so to speak so be careful.. If you are needing a reassurance that the new radiation is safer I don't think you will find that yet and you are a wise women to not just "go alone" with the doc's because they say it's safer now..    If you can tolerate a "watchful waiting" that's MRI's every year and some doc's also throw in a mammogram every 6 months.. that might be the way to go but will you caught it at Stage 0 again they don't really know and that is the problem you might not.. I think you need to address your needs right now - what are your true risks and what can you tolerate as far as treatment goes .. get to the root of those questions and it might be easier to either proceed with the radiation treatment or challenge it!  Good luck and I always suggest that anyone here should consider a therapist so they can "hear" their own voice..  So often in this situation like this we hear everyone elses voice but our own and later regret it.. So find some way to get to your true self and answer those questions!!!  I'll be keeping you in my thoughts - take good care of yourself!  Deirdre

I also was upset when I was told I needed radiation.  That was almost five years ago, and I have absolutely no regrets that I accepted my doctor's recommendation.  I know more now than I did then, and the reality is, studies have shown that the recurrence rate is much higher in women who did not have radiation following a lumpectomy.  I kind of viewed it as the trade off for not having a mastectomy. It takes a long time for a cancer to be large enough to be visable on a mammo or other diagnostic and the radiation is to take care of any stray cells.  The biggest issue I had during treatment was severe fatigue, but I dealt with it, just took more naps.  I made myself walk everyday during treatment.  I did have some problems with radiation pnuemonitis (inflammation) in the first two years after treatment, but it was never bad enough to keep me from doing my regular daily activities. The technology has improved alot and they have eliminated many of the severe problems that used to be common.  I am a pretty active person, walked in the 60 mile Breast Cancer 3-Day in 2008, so I can't say I have had any permanent side effects.  Talk to your onc, get a second opinion, do some research so that you can make an informed decision.  I viewed it and tamoxifen as my insurance policy.  If at some point it does come back, I will know that I did everything possible to prevent a recurrence and will have no regrets. God bless you.

I agree with Jenn as well, this is my insurance policy (both rads and Tamox) as if this does come back I know  did everything I possibly could the 1st time around.....I was also told by my doc's that I will get mammo's probably every 3 months for the first few years then after than every 6 months following.  Knowing this it does give me more peace of mind....the not knowing what can happen to every individual and of course is different with each person as well......so with that said, good luck and I will be thinking of you!  June

Susan,

Whether or not you should have radiation comes down to two things:

1) Your recurrence risk, both with and without radition

2) Your personal risk tolerance.

In other words, if you don't already have this information, you need someone to tell you what your risk of recurrence is if you proceed without having radiation, and what your risk of recurrence would be if you do have radiation.   No one here can give you that information because it is entirely dependent on your pathology.  From several studies I've seen, it appears that recurrence risk after a lumpectomy for DCIS (prior to other treatments) can be as low as 4% - 5% or as high as 60%.  The size of your tumor, the grade of your tumor, the hormone status of your tumor and the size of your margins are the most significant factors that influence what your risk will be.  Age also plays into this - recent studies have shown that younger women (less than 45, if I recall) tend to have a higher recurrence rate.  From what you've said, with close to 1cm margins, a grade 1-2 mass and being ER+/PR+, I would guess your recurrence risk would be closer to the lower end of the range.

Once you find out what your risk is, the question is whether this risk level is something you can live with, or if it's a risk level that you really want to reduce (using radiation).  Only you will be able to answer that question.  For one woman, an 10% recurrence risk (as an example) might be totally acceptable and this woman might choose to forgo radiation.  For another women, an 10% recurrence risk might be frightening and this women might choose to take radiation.

My suggestion is that you see a medical oncologist.  As Deirdre said, the radiation oncologist has "a horse in the game".  Radiation is his business.  Talk to a medical oncologist.  It's his/her job to look at the overall big picture and make a recommendation based on that.  And a medical oncologist is the best person to tell you what your risk of recurrence may be.  As you've described it, your situation really does seem borderline so you might actually want to get a couple of opinions from medical oncologists since each might look at your situation differently.  That would give you a lot more information that you have now, and hopefully would help with your decision.

Edited to add:  To your question about a stray cell, they are not talking about a cell that got out of the duct or a cell that was moved during the biopsy or surgery.  They are talking about DCIS cancer cells, still in the milk duct, that might be left in the breast.  As DCIS spreads through the milk ducts, it isn't always continuous.  Sometimes there is an area of DCIS, a gap, and then more DCIS.  So the surgeon might think that he removed all the DCIS, but just beyond the margin, there might be a few more cells.  This is why wide margins are so important. Your case is interesting however, because you had a mass.  I'm totally guessing here, but I would think that the likelihood would be pretty small that there would be more DCIS beyond the margins when the DCIS was a mass.

I didn't have a choice about radiation due to my dx. And I found it to be very easy and doable with no short or long term side effects.  However, if  I had had a choice, I would have done it.  My reasoning boils down to this:  I remember how horrific it was to be told I had cancer and I want to do everything available to be sure I never hear those words again.  OF COURSE there are no guarantees. But I guess I'm of the 'every little bit helps' school. Same re Tamoxifen. I don't like it, but I take it. Again, little/no SEs from it (so far).

I sit next to a woman at Herceptin treatment who has had her BC come back after 5 years and it is in her bones, brain and eyes.  She had DCIS and didn't do anything except surgery (mast). No rads, and no Tamoxifen because she said she didn't want to go through the hot flashes.  I am on the same schedule as her (every three weeks for Herceptin) so we always sit together.  I will be finished next month (yay) but she will be on it for the rest of her life (or, as she puts it "Until it stops working").  I don't say this to scare anybody, but I do have to say that EVERY time we talk she says how much she wishes she took the Tamoxifen. And she always says to me "Don't forget this can come back, even after 5 years."
Now for me, I'd RATHER forget it can come back, and I don't like the reminder. But when it comes to making treatment decisions - I think it's important to take the long view and not just try to get tx over with as fast as possible. (Not saying that that is your mindset though....)
Hope this is helpful.

Amy

Susan,

I was diagnosed with DCIS in 2007 and chose not to have radiation because my risk of recurrence was only 4 percent. Radiation on average reduces your risk by approximately 50 percent, so while it probably makes sense if your risk is 30 percent, it did not make sense to me for a 2 percent gain in my case.

I had Dr. Michael Lagios, who is a world renowed DCIS expert and pathologist, look at my slides and calculate my risk using the Van Nuys Prognostic Index that he and Dr. Mel Silverstein developed. They use age, size, grade and size of margins as the criteria to predict recurrence. 

Dr. Lagios runs a consult serice that anyone can use. He reviews your pathology and then you have a phone consult with him. You can Google his name or go to this web site: breastcancerconsultdr.com. 

I would recommend him to anyone without any hesitation. He has the expertise to give you clarity and peace of mind. 

Good luck with your decision.

If you have any questions at all please feel free to send me a private message and I wll happy to tell you more of my story and everything I know about Dr. Lagios.

Sandie

The smallest objects that the unaided human eye can see are about 0.1 mm long. So even if the surgeon cuts everything visible out there may be a cancer cell not attached to the main tumor that gets left behind.

PET can see objects to 8-10 mm in diameter and metabolic cells down to 2.5mm.

So why not nuke the area where the cancer was?

As for me right now (4 months out from lt. mastectomy and 5/6sessions of TCH chemo) I am facing rads in another month or so and yes I am NOT looking forward to it. Working in the Nuclear Medicine Field I understand radiation quite well and all of its side effects. However I want the best chance of survial.