DCIS in small-breasted women

hmmm.  I was AAA before all this began.  I  had a lumpectomy at first with a 1 cm lump removed and my bs went for 1cm margins all around.  After that surgery (right next to my nipple) did my breast look totally normal, no.  But, I could have lived with it just fine.  I also think some fat grafting could have been done to fill it back out.  Because of margins I ended up having to have a mast and then still needed radiation.  Personally, I'd rather have a odd looking breast than these numb lumps.  That's just me though and I know it's different for everyone.  I just can't see a mast for cosmetic reasons alone.  Could you talk to a plastic surgeon about options to 'fix' the lumpectomy?

Liz, I don't know why half my post disappeared so here's what else I wanted to say:

I'm also very small - size AA. I opted for a mast since I knew I would feel more maimed by an even smaller,distorted, puckered breast than I would with no breast. Please realize, though, that "smaller, distorted, puckered breast" is my emotional reaction to what I suspected would be left. You have to go with what feels right to you. Also, I was post-menopause and had lost almost all sexual feeling in my breasts when I went through menopause so that wasn't an issue for me.

A lot of women end up with some sort of recon procedure to fix lupectomy "distortions".

Good luck with your decision.

Leah

I have the same diagnosis as you and will be having a single, skin sparing mx with immediate recon and breast augmentation on the other side.  Here's why:

1. I was planning to have a boob job already - ironic isnt it? 

2. A lumpectomy means 30 radiation treatments, and maybe it comes back.  Waiting the 6 months between mammos to see if my breasts had any changes was enough to let me know that I dont want to have it on my mind forever like that.

3. In MY case, a lumpectomy would take almost all of my breast tissue anyway.  My DCIS was over a larger area.

4. MY Insurance doesnt cover recon after lumpectomy.

So for me the breast augmentation is what is keeping me smiling (slightly) about this.  I was planning on it, I met with PSs about it, I saved for it and I was a phone call away from setting the date. But the Docs all confirming that the lumpectomy wouldnt spare me much of anything and having to go for the followup radiation made the decision easier as well.  I want the cancer out and I dont want to worry about that breast ever again.

That being said, its a matter of how YOU feel about yourself and YOUR expectations about what will happen.  In the end, its your decision.  Best of LUCK to you!!!!

Liz- so glad you have someone to help you out.  I know sometimes people think a mast and implants is no big deal. but it is.  Implants are totally different than a mast with reconstruction.  Totally different.  Emotionally, this has been very hard for me but, again, I know for many women it's just fine.  I think a lot of people don't grasp  the full extent of what a mast is and the long-term issues that come with it.  Bigger breasts may sound nice to some people but it is so much more than that. 

So, yea for you for questioning what didn't sound/feel right and seeking more info.  Making these decisions is so difficult and I hope you get your answers and feel some peace.

k

I was a very small B and have had a lumpectomy and an excisional biopsy of my left breast, had 32 radiation treatments, and am still very happy with my breast.  There is a bit of a difference in size between the two breasts, but I'm ok with it, and I very much appreciate that I still have sensation in my breasts.  My cancer was smaller than yours and I had clean margins so a mastectomy was not something I ever considered.  Keep in mind that even with a mastectomy, breast cancer can come back, and yes, I do have some friends that have had a recurrence after bilateral mastectomies.  The mastectomy reduces the risk, but does not guarantee it.  It will be six years for me in April, and I am very happy in my life.  I would get as many opinions as you need to find the doctor that you are comfortable with, and make your decision accordingly.  We have long term relationships with the doctors on our breast cancer teams and it is important that we trust them and have a good rapport with them.  Good luck as you go forward!

Please keep in mind a mastectomy does NOT always mean no radiation! 

bher - I read your post and thought you were me!  We had a very similiar situation.  Only 1cm of my 6+  cm of DCIS showed on any diagnostic testing and that was MRI.  I would have been so happy to have stopped with a lumectomy too!

I have to agree with Megan that MX/reconstruction doesn't automatically equal being disabled or laid up for a long time.

hello all,

thanks for responding. 

to the person who stated that mx doesn't mean no radiation, i know & thanks for the "warning".  i did inquire about that for my particular case, though i realize that could change if bs finds more when she goes back in.  at this point, however, they're telling me "98%" i would not need it if i had mx.  god, i know i could be much worse off but it still kind of sucks & it's difficult to figure out what's right. i also may be needing to meet/speak with more doc's if my insurance will allow.  (i think it has to.  need to find out asap!)

i hope this doesn't seem like a stupid or insensitive question, as i'm trying to be sensitive to everyone's situation and am deeply grateful for the openness with which everyone is sharing their information and helping each other.

i have a couple of q's for those of you who had lumpectomies (or in my case they're calling it "re-excision if that's what i go for) and radiation.  1st of all, what was your experience w/ radiation and whether or how much it "shrank" or otherwise affected your remaining breast tissue?  if you have/had really small breasts, were you able to actually "conserve" your breast this way or not?

for those that went on to have mx, was that because the rads + lumpectomy did not get rid of the cancer or b/c of problems or deformities caused by the radiation or some combination of both or....anything else i might be missing?

also, unless i'm misunderstanding, i think at least a couple of people are saying they had additional DCIS that didn't show up on any diagnostic testing, including MRI.  is that correct?  does that mean it didn't show up until bs went in to perform lumpectomy perhaps? and then determined there was more than they realized? (sorry if i'm missing something here but i'm trying to understand!)

finally (for now) for those of you that have had mx w/ te & implants, were you able to "try" anything prior to the procedure(s) to give you an idea of what it/they would feel like?

thanks again, everyone, and take care.

Gymnut,

I was diagnosed with DCIS after a mammogram picked up calcs in a tiny area of my right breast.  I had an MRI which showed the same small area, so I opted for a lumpectomy.  The area of DCIS ended up being much larger (3.2 cm.) than either scan showed.  My surgeon did get clean margins, but they were too narrow (2 mm) in two places.  At that point, I had the option of a re-excision or a mastectomy. 

Several factors went into my decision to have the mastectomy, but the most important was that I just didn't trust the scans to pick up the DCIS at that time or in the future, since neither the mammogram or MRI could detect the full extent of my DCIS.  Because my risk tolerance is low and because I would never trust a "clean" mammogram in the future, I opted for a bilateral mastectomy with immediate construction.

It turned out to be the right decision for me.  The surgery and recovery were not bad at all (up walking the next day, at my girls' conferences a few nights later).  My reconstructed breasts (pre-exchange) already look really good.  And most importantly, the final pathology after my mastectomy, as I had feared, showed residual DCIS (undetected on scans) in the right breast. 

Of course, every situation is different, but a bmx was the right choice for mine.  I haven't regretted it for a second.

As for the expanders and implants - I was able to see, touch land hold them, but I'm not sure if there's a way of trying them out.  I was given a lot of information, however, about alloderm, saline vs. silicone, sizing, etc. 

Good luck!

gymnut - My lumpectomy was 1 year ago this week, followed by 30 radiation treatments over March and April, so I know where you are coming from, and the following is my experience; everyone is unique, and this is such a personal and difficult process. When I first got my DCIS diagnosis (stereo. biopsy after micro-calcs. appeared on my mammo, no family history, just going for routine annual mammo. in early 40s), I was panicked and didn't trust my body anymore. BS had me go for genetic testing and an mri on both sides, and when they came back OK (well, the mri led to a false positive on the other side and then an mri biopsy, which came back benign), he gave me the option of either a lump. with rads or a mastectomy. I asked if the mastectomy could be nipple-sparing; he said no because my DCIS was both too spread out and close to the nipple for him to feel comfortable that I wouldn't have a recurrence (it is a risk leaving the nipple, no matter if it is scrapped or not). I was very fearful of rads, so he had me meet with a rad.onc. before making my decision and I asked every question in the book. I also met with a ps and discussed immediate reconstruction via the diep procedure, which was the only way I was going to go if I had a mastectomy (I wanted my own feeling body, no tissue expanders/implants, and also wanted to wake with two girls, but diep is a big big surgery, and one that I thankfully have the tummy material for).  I ultimately chose lump. with rads, because I wasn't ready for the  permanent action of mastectomy and the loss of sensation. And as others have written, mast. doesn't guarantee no rads.

I have NEVER regretted having chosen the lump. with rads. I have complete sensation and have no skin dimpling, shrinkage, thickening, nothing much different between them except for the scar and the dip in shape from that (I have a vertical scar in my bottom half, from my angle I see it more than if I were to look in the mirror). Other than the burn that faded to tan and then faded away, I notice nothing different from rads --honestly -- and really didn't have the tiredness either. I had 30 zaps (25 full-breast and 5 boosts to the scar region). I was a B/C cup before and I still am. I love love love my breasts more now than before all of this began, and appreciate still having them . . . for however many years more it winds up being.  It is true that the body somehow fills itself in -- my path. report listed 3 cm x 8 cm x something else DCIS region removed, which isn't teeny and I wear the same bra now that I did 1 year ago. I had rad treatments on the left side, so the added worry about my heart, but they let me get zapped in the prone (facedown) position, which is safer/preferable for us lefties, as well as more private. I said no to permanent tattoos (they used sharpies and stickers), so I do not have any traces of rads.

At least for me, my DCIS was absolutely picked up from mammography -- well, the micro-calcs were picked up and that led to the biopsy and diagnosis. I went for an mri after that and it didn;t change my diagnosis (a benign spot was detected in the other breast and was biopsied, but I knew that was the risk with mris). I'm told I have dense breasts, and  don't know why the micro-calcs weren't picked up the year before assuming they were there, but I do trust digital mammograms.

Believe me, I read and read and researched all of the pros and cons short-term and long-term of lump. with rads. vs. mastectomy before making the right and personal decision for me. I am thankful to the women before me who eloquently explained that reconstruction after mastectomy isn't the same as the cosmetic surgeries people have to enlarge a small chest. I am in my 40s happily and romantically married to my hubby. Whatever decision you ultimately make, may you have peace that is/was the right one for you. Take the time now to make that decision, and then have no regrets.

dear everyone,

thank you so much for your thoughtful, informative, caring and supportive words.  i really appreciate the information & the sentiments.

i will continue to ask more questions and am already feeling much better just from having heard all of your stories.  i empathize deeply with all of you & am sorry you had to go through what you did, but i am also encouraged b/c those of you who have already gone through your treatment seem to feel comfortable with the decisions you've made.

to anyone who, like me, is still in the process, good luck & i wish you all the information & whatever else you need to make whatever decision is right for you.

also, if anyone has any ideas of specific questions i might want to ask, anything i might not have thought of, that would be greatly appreciated as well.

thanks again and take care.