DCIS, BMX/MX, and radiation ladies

Hmmm...undercoverebel...that is definitely a curve ball and a tough call.  According to the study I posted: 

Patients with margins of 2 mm or less who have any additional unfavorable features such as having high-grade disease, comedonecrosis or being under the age of 60 are at particular risk of local recurrence and might benefit from radiotherapy after mastectomy.

So you have a 1 mm margin and are young (under 60, I presume).

You do not have the risk factors of high grade disease, since you had Grade 1.  Did you have comedonecrosis?

What is this risk of cancer on your lung after 25 rt's?  And why do they say you are not a great candidate?  And where is the 1 mm margin at?  (i.e. near chest wall, etc.)  How old are you?

Such a tough call.  Hopefully others will chime in with their thoughts, but my gut reaction is if they aren't recommending it, I'd likely follow my doc's opinion.  You may want to get a second opinion, however, to give you peace of mind.  

Well, I received my second opinion on my path, and the posterior margin was only 2 mm.  My BS in Miami says he took the fascia off, and since DCIS cannot by definition leave the ducts, he feels I am safe since the fascia was between the breast tissue and the muscle.  Anyone else have thoughts on this?  I am waiting to speak with my local BS and RO but can't get in until next week.

BTW, also had close margin anteriorly and will need two re-excisions (one for close margin, one for DCIS behind areola, which was described as "atypical" by first pathologist).  It  still amazes me how much discrepancy there can be between pathologists' interpretations.   First pathologist said R breast (prophylactic was clear) whereas 2nd path said small amount of DCIS was present.  

Julianna51 - I see that  you had a BMX with immediate reconstruction.  Why did you have the BMX and what type of reconstruction did you have?  I am really considering a BMX but not sure about the recons process, which method is best.  Any advise?

Julianna - somehow I missed your post!

I had my follow-up appt to discuss the 2nd opinion path today and found out some new things...

On the R side (supposed prophylactic that turned out actually had DCIS) - margin is < 2 mm.  They CANNOT do re-excision (I thought they could) - b/c they can't reasonably figure out where the DCIS is based up the slides - it could be 1 cm off, and then they'd end up re-excising the wrong area...so radiation is recommended instead.

On the L, DCIS is right up behind the aerola, so I will have re-excision for that.  DCIS is also < 2 mm from posterior margin - need radiation for that despite the fascia being removed.  In their opinion and based on the latest research, this is what is safest to prevent recurrence.

My doctors explained to me that radiation after MX for DCIS tends to be in cases like mine: small chested, very little fat so the breast tissue is close to the skin/muscle, and a large amount of cancer throughout the breast. 

The center I go to is one of the 40 centers certified by the NCI.  So I really trust them. 

So - summary...will be getting re-excision of areola on the L and bilateral radiation s/p bilat MX.  Ugggh...!  

Well, we have decided to get a 3rd opinion on the pathology, to have a bit more peace of mind before proceeding with surgery and rads...hope this doesn't cause even more confusion instead...ugggh!  My surgeon in Miami recommended I get the 3rd opinion before proceeding, since pathologists disagree so often in distinguishing DCIS from ADH.  Uggh!  

I've been doing more research and trying to assimilate all of the articles I've seen on this subject so far...so little research has been done on this.  When the research is done, the subject sample size is so small, it is hard to draw firm conclusions.  Still, one has to look at what is out there to try to guide treatment choices.  I'm still undecided on how to proceed for my own case, and I plan to get a second opinion from another RO, but I thought I'd summarize what I found in case others were interested:

Chan, et al (2011):           1/59 (1.7%) recurrences for < 5 mm (median f/u 8 yrs)

Rashtigan, et al (2008):  6/80 (7.5%) for < 10 mm (median f/u 5 years);
                                             5/31 (16%) for < 2 mm           " " " "

Vargus, et al (2005):       2/43 (4.7%) (abstract did not report margin width)

Carlson, et al (2007):      11/223 with SSM (5.1%)                                                                                                                        2/19 (10.5%)  < 1 mm (mean f/u 6.8 yrs) 

Several of the articles drilled down into features which made recurrence more likely (in addition to the small margins).  They were:   grade 3, comedonecrosis, young age, multiquadrant disease. 

My question is,  say you have a margin < 5 mm or even 2 mm, and you have several of the other features noted above...your recurrence risk would be higher - at worst 16% (not saying that is good), but how do you weigh that with the long-term risks of radiation? (heart. lung issues)  When does the benefit outweigh the risk of the treatment?  I will of course be discussing this with my RO's, but I would love to hear others thought processes. 

DANCETRANCER- The studies they do are on "more at risk women" so for some of us w/early stages the doctors can only scratch their heads. My oncol and rad oncol said what little studies there were showed no real benefit to rads,chemo or hormone supps for me. They admitted the diffs between mast/ lump were small,rads to early stage girls were not really showing any diff. so why bother. The Tamox is small in it's benefits but yet the studies really are just almost nothing for early stagers. What kind of studies are these?! I'm bowing out of these 2 things because I could get lung cancer from rads,or a blood clot from Tamox. And the best part-he admitted the tests,all tests are useless. The only way to know if there's a recur is to feel a lump. Then why do them??? And on top of it all we hormone pos girls were dealt another blow-no alcohol! What are we going to drown our sorrows in while we're looking over our shoulders for the recur reaper?

Julianna - if I had Gr 3 and had 3 RO's telling me to do it, I sure would.  My difficulty is I'm Gr 2 AND I've had two recommendations - but they disagree with each other - one says yes, the other says no.  Uggh!  I'm working on getting a 3rd recommendation - crazy!   However I do have the other features - young age, comedo, multicentric - so I'm leaning towards it.  I'm just so afraid of the heart and lung issues long-term.  I lost my mother, father, and sister to heart attacks.   My mother and sister were only 67 and 46 when they passed.   I'm much healthier than them and never smoked, but still, it weighs on me. 

Undercoverebel, these studies are specifically for DCIS only patients, status-post MX - how many had recurrences and the relationship of recurrence frequency to small margins and other factors after MX.  I too, have the same concerns as you.  You are Grade 1 and it looks like your DCIS was smaller, so your risk for recurrence with small margins (not sure what yours were, mine are < 2 mm) is lower.  Oh and I hear you on the alcohol...but I've decided if I take folic acid and keep my drinking to less than 3 to 5 drinks/wk, I'm ok with the small risk it appears to add.  Probably justifying to myself since I love to have a few drinks, LOL.  

 Mom3, wow, if I got those numbers I for sure would do it, too.  Actually, my RO didn't give me any % on risk with/without rads, so I have nothing to go on, just her recommendation to do it.  I've sent an email asking for some hard cold numbers, but no response yet....grrrrr!!!!!   I do think the disparity is b/c of the small number of studies on DCIS recurrence post MX, combined with the fact that the # of patients in those studies is SMALL, so it makes it hard for docs to draw firm conclusions, and thus the decision is controversial.  Sucky that you found a small lump...read about that on another thread...surely it is nothing since you did rads!  Fingers crossed and keep us posted!!!  

dancetrancer, I'm sorry you are not getting the answers that you need from your doctors.  It is such a hard decision to make as our health literally do depend on it. I hope the 3rd opinion makes it easier for you. 

Julianna and mom3b , I absolutely agree, with the pathology report you both had, I would have chosen to go through radiation too.  I'm glad you both have come through it excellently.

Thanks guys!  

Hi All,

I've been trolling the boards for awhile - thanks for all the great info. I'm a week out from a BMX and the final path report came back with a very close margin (0.1mm), high grade with comedo necrosis. I'm also young. I scored 12 on the Van Nuys index, so I suspect my MO will recommend radiation. Has anyone come across some good articles on the long-term risks and complications of radiation?

Thanks!

Lisa 

Ok,3rd trip to M.O. and here's the bottom line-clean margin against chest wall is very tiny. Cancer was so close to it. They don't know everything about this disease therefore he gave me a choice-live w/the regrets of having a recur(small risk) from doing nothing or live w/the regrets of doing rads and getting lung cancer etc(small risk). Of course there's no data to support a decision to do rads as an early stager.Why not just ask me to choose strychnine or hemlock? He says the R.O. probably will not have any stats re small margin,early stage recur chance or lung cancer stats. The comfort I can take in this-he says- is that it's because they don't feel we're in much danger therefore it's not studied so closely and we can take our treatment options or leave them. Not exact words but very close. I can hope for more light to be shed by yet another appt w/a diff R.O. (didn't care for the last one) but I think my best odds are researching online. No real news here,just more doubts.  FYI-the Mayo clinic has some interesting things to say about DCIS . This site(bc.org) also has a rads section. It talks about radiation and doesn't list close margins as part of being high risk. Maybe in the grey zone,a smaller risk.