DCIS with narrow margins???Need Radiation

hmmmm. what are they telling you about tamoxifen?  And have they done or are they doing a reexcission?

I suspect they are going the way they are going because all your DCIS is grade 2.  I was Grade 3--I got Tamoxifen and zaps based on the oncologist's assessment that it wasn't a question of if it would become invasive but when.  This was after my final path report (and a reexcission for better margins)---before surgery she said maybe I wouldn't need either.

With more agreesive stuff the oncs are more aggressive too.

mommyrnx2: I had to have rads on my chest wall due to bad margins, and if I could go back in time, I  wouldn't have done it. But, I also have a history of smoking and I now know that depite what my ro told me that there was minimal damage to my lungs, that there have definitely been complications. Not too mention that I now have an increased risk for lung cancer .  So, if you've ever smoked in your lifetime, I would really think hard as to whether or not it's worth it.  B/c like everything else, there is a risk - I would get as much info as possible on long term side effects. I know it's a very personal decision & I wish you the best of luck.

just another perspective...I had rads with te's and mine were fine.  I think redspark3 is right though...it's 50/50.  I exercised through out and am not a smoker and did really well.  I was also 39.  I didn't do nipples so can't speak on that.  I did have issues with muscle cording and my shoulder is now bothering me.  I have a PT who specializes in women who have had bc and taht has made a big difference.

I remember reading one of Beesie's posts that said having a mastectomy doesn't guarantee that you won't need rads. I guess it was situations like this that she was referring to. I'm sorry I haven't had a chance to read everything in detail but did you mention which margins were small? Chest?

Rads are scary especially over left breast. I  honestly don't know what I would do in your situation. It's the size and the grade of yours that is making me think I would go for rads. I know of someone who had radiation seeds implanted in her breast instead of rads. Maybe this is an option? I don't know what it is called and how exactly it works. My sister mentioned it to me but she doesn't have details on the procedure.

I just bumped the thread that dealt with this same question it looks at the Van Nuys Index and mastectomy and risk factors for recurrence/new primary.

Age, size of lesion, margins and I think grade are all relevant but I'd have to re-read it. This is a tough situation, sorry you are going through it

mommyrnx2 - I really hope you do not have to have radiation.   But...from my 2nd and 3rd opinions, I learned how the radiation equipment is so much better than in years past.   (I'm trying to comfort myself with that thought)   At the center where I'll have my radiation, they use a TrueBeam machine, I guess one of the latest and it is so much more sophisticated in being able to avoid radiation to sensitive areas and better radiation on the areas that need it.  I have actually done research on it and it does sound good.  So....if you do have to have radiation there are good options out there.

As for TEs and reconstruction, I have a talked alot with a friend who had previous radiation at her first occurence of cancer and then a later MX.   While she did have some complications on her radiated side, the PS' have so many solutions in reconstruction that she is doing very well.  

I was told that my risk of reoccurence currently is 15% and that with radiation it will be 5%. 

I had IDC (stage 1) and a mastectomy.  The IDC cleared the margins, but the DCIS  found in my breast did not clear the margins.  Radiation was recommended (and I did it) but the rad onc said it was definately a "gray" area on deciding whether or not to do it since it was not the invasive cancer.  She said  the aggressiveness of my IDC and my young age and premenopausal status swayed her into recommending yes to radiation.

No, no reconstruction.  I am so small (just barely an A cup) so it really isn't noticeable.  I just wear my old bras "empty" on that one side.  No one can tell. 

The rads wasn't for the IDC, though.  Had it just been the IDC, I wouldn't have needed it.  The margins were clear for that part.  It was the DCIS that they were concerned about.  Rads wasn't too difficult for me, but then again, after going through an aggressive chemo, rads was practically nothing in comparison!

Hi mommyrnx2,

I was in your shoes, almost exactly the same situation. I had a 9.5cm tumor and after mx, had 1-2mm margins, I think the 1mm was against the chest wall. My surgeon removed the fascia and he felt I did not need radiation, but he took my case to the Lahey Clinic tumor board, which came back with a split opinion about the need for radiation. I took my case over to Dana Farber, and the radiation oncologist there took my case to their tumor board, which came back with a "radiation not needed" consensus opinion. Pretty much everyone I spoke to said it was my decision and either decision was understandable. As I considered the pros and cons, I couldn't escape the feeling of dread and anxiety that washed over me when I thought about undergoing radiation. By contrast, I felt at peace when I thought about not doing rads.

So, in the end I didn't do rads, and I am happy with my decision. It's a very personal choice for cases like ours... there aren't any good stats to guide decision-making, as DCIS-mx-rads is a pretty unusual combination.

Good luck to you!!!

Hi there! Sounds like you got very similar information from your doc as I did from those I consulted.

I can't tell you if canceling the RO appt is too hasty. I really felt I needed a second opinion, particularly when the first tumor board was split in its opinion with the RO strongly urging me to do it, but my breast surgeon saying it wasn't necessary. Once the 2nd tumor board came back with a consensus, I felt that I had as much medical input/opinions as I was going to get, and I needed to sit with it and make my own decision. I don't know whether you've reached the same point or not...

I am not on Tamoxifen, because my husband and I are trying to start a family (we got married 3 days after I was diagnosed!). After kids, I might consider taking it, maybe, but I've only gotten lukewarm opinions on whether I need to take it at all. Two medical oncs said it was pretty much optional in my case.

Funny, I didn't really think that I would ever stop thinking about cancer once I had been diagnosed, but happily today I really don't think about it all that much... and hence I don't spend a whole lot of time on the boards these days. But please feel free to PM me anytime, and I will keep an eye out for you on here now that I know there's someone else with such a similar situation!

I dont' know if it will make anyone feel better but the only reason i had rads after my mast was because of several areas with less than 1mm margins.  I think if I had had 1mm margins it would not have been rec for me to do rads.  Hope this helps.