DCIS in small-breasted women

Options
lizeasternshore
lizeasternshore Member Posts: 4

Wow!  These chat boards have been a wealth of information!  I appreciate all of the well thought out responses!   I have just been diagnosed with DCIS, Grade 3, ER+, PR+, Her2Neu- w/ 1mm MI,  2.5cm.  My problem is that I am the chairwoman of the small-breasted committee coming in at a whopping (small) A cup.  I am being told by docs that either choice of lumpectomy/radiation or mastectomy is acceptable form of treatment.  However, upon review w/ plastic surgeon was told that lumpectomy followed by radiation would likely "pucker" or distort skin so that the end result would look fairly deformed b/c of small breast size  Okay..hold on to your hats...PS suggested that size of tumor removal would be roughly the size of a testicle, so he suggested a testicular implant as a "placeholder" while I underwent radiation to keep skin intact!!! Made of same stuff as breast implants (silicone or saline).  Although this sounded crazy I was willing to try it--PS was thinking outside of the box!  Breast surgeon vetoed the idea citing concern that implant might become infected during radiation treatment.  Also, BS won't do regular breast implant post-lumpectomy citing mammography imaging issues in future--I suggested we do MRI's but that was vetoed too.

Basically, surgeon is suggesting that I have mastectomy b/c of these cosmetic issues.  I find it bizarre that there is no other way to go for small-breasted women.  I'll have mastectomy/reconstruction if no other way around it, but hate the idea of being laid up for so long (45 w/ kids ages 8 &11). Anyone else have any suggestions/studies/treatment options in these cases?  Seems so limiting..  surely I can't be alone w/ this problem! Thanks for any help!

Comments

  • mom3band1g
    mom3band1g Member Posts: 817
    edited January 2011

    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?

  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    Liz, you might want to get another opinion on the implant following radiation. Women who have breast augmentation get mammos, women who have implant recon also have imaging follow-ups, so if it's what you want, see what another doc says.

    My situation - I am also small, an AA, and decided on the mast because I felt that emotionally I could deal better with no breast rather than an even smaller, puckered, deformed breast. However, pleae realize that the desciption of " even smaller,puckered deformed breast" is my emotional take on what I figured would happen. You have to do what's best for you, what will make you most comfortable. Also, I was post-menopause & one of the results of menopause for me was greatly lowered sexual sensation in my breasts.

    Best of luck.

    Leah

  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    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

  • Leah_S
    Leah_S Member Posts: 8,458
    edited January 2011

    OK, now this is weird. The same paragraph disappeared. (or as near as I came to the same, anyway).

    I'm also small, a size AA. I opted for a mast because I felt that I would feel more maimed by having an even smaller, dist;orted, puckered breast than by having no breast. Please realize that "even smaller,distorted, puckered breast" was my emotional reaction to what I suspected would happen. You have to go with what feels right to you.

    All the best.

    Leah

  • SuebeeBC
    SuebeeBC Member Posts: 1,256
    edited January 2011

    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!!!!

  • lizeasternshore
    lizeasternshore Member Posts: 4
    edited January 2011

    Leah--Thanks for your many posts!  Sorry you had such problems!  Since I've posted this, I've had an extensive conversation with a dear dr. friend who specializes in this and he stated that with today's radiology, there should be no issues with deformity (if it's done right!) He suggested fractionated radiation and said his small-breasted patients see little difference at incision site.  He also noted that the body has amazing healing capabilities and in many cases will fill in that area with scar tissue and fluid which will remain "hard" initially but will soften over a year's time or so, acting to sort of "mimic" the original breast tissue lost and filling in the space.  No, you won't have exactly the same look, but it may be close.  He suggested a wait-and-see if you like it approach.  Basically, he explained the part about not putting an implant in is hooey (which I suspected...let's face it...how many women with implants are diagnosed w/ BC?  Millions???) The thought is that if I don't like the outcome, we can look at reconstruction a little down the road.  Lucky for me, my (ridulously-priced) insurance will pay for all of this.  You have all helped ease the load a little tonight...maybe some zzzzz's??? (let's hope... ; )

  • lizeasternshore
    lizeasternshore Member Posts: 4
    edited January 2011

    Sue-- If it makes you feel any better...I have a husband chanting "Pamela Anderson, Pamela Anderson" in my ear every night....you know if we didn't laugh, we'd cry!  I think I am the only woman on the face of the planet that is fighting AGAINST implants! ; ) Good luck!

  • lizeasternshore
    lizeasternshore Member Posts: 4
    edited January 2011

    Thanks, Mom3b1g--You'll see from the thread I've chatted with a family oncologist who is providing great guidance and saying the same thing...this just doesn't add up!  I appreciate your advice and opinion.  You have all helped keep my sanity today...I was really going nuts thinking I was going against the grain!  It's good to know others would question this surgeon's path.  I think sometimes a particular surgeon is simply a guru or comfortable following a particular path and thus recommends you follow it too....as you all say, we are all in charge of our own bodies and need to make informed decisions!  xo

  • mom3band1g
    mom3band1g Member Posts: 817
    edited January 2011

    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

  • redsox
    redsox Member Posts: 523
    edited January 2011

    Liz--

    I think you have found the best advice from the oncologist chat.  After my diagnosis the second person I called after my husband was an oncologist who is a friend I trust completely.  He clearly had knowledge and was motivated only by my best interest.  I wish everyone had that!

    I would never decide as the initial decision to have a mastectomy for purely cosmetic reasons.  If you need it for medical reasons, OK.  If you feel it is necessary for emotional reasons and you take some time to let your emotional reaction work itself out, OK.  But if you would prefer to have breast conservation and the doctors say it is a reasonable option medically, I would go for the lumpectomy and see how it works out. 

    edited to correct typo 

    Diagnosis: 2009, DCIS, Stage 0, ER+/PR+, HER2-

  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited January 2011

    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!

  • gymnut
    gymnut Member Posts: 37
    edited January 2011

    hello all,

    this is my 1st time on here as i was just diagnosed a couple of weeks ago and i'm finding it incredibly helpful already!  in fact, it seems that the question posited is one of the ones i'm struggling with now. 

    i'm in the process of trying to decide between re-excision & radiation (also about 30 treatments) or mastectomy & "reconstruction" which for me would mean implant, because i'm lean & don't have excess tissue for them to take.  i've also been given similar information, that the re-excision would obviously mean taking more tissue and that the radiation may very likely shrink (i don't think they used the word deform) what's left, therefore meaning that in my case, breast conservation might end up not being able to conserve my breast.

    while i definitely hear what people are saying about prefering a breast w/ sensation and while having small breasts has never been an issue for me, i am concerned about exposing myself to radiation, especially if it ultimately won't help to actually "conserve" my breast.

    liz (i think u posted the original question:?) could you say a little more about what your oncologist friend said?  i'm trying to make this decision, having just met w/ plastic surgeon & radiation oncologist this past week & will be following up w/ breast surgeon this week. 

    i know the good news is obviously that it's stage 0 & not spread & i should be fine.  still, it's a huge decision & i'm struggling a bit, have lots of follow-up questions.  for those of you that did have implants, did you get to try something out to see how it would feel afterwards?

    my goal is obviously to get rid of the cancer & be/stay healthy & strong again & also to end up being as comfortable in and with my body as possible (under the circumstances).  i'm just trying to get all the info i can to figure out what will get me there.

    any feedback or insights from people's experiences would be welcome and liz good luck to you.

    i'm so glad i found this! 

  • mom3band1g
    mom3band1g Member Posts: 817
    edited January 2011

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

  • bher
    bher Member Posts: 86
    edited January 2011

    I was faced with the same decision not too long ago regarding lumpectomy vs mastectomy.  I had three BS opinions which was key for me. The first BS thought I could "try" a lumpectomy first but the other two opinions agreed that my DCIS was too extensive for a lumpectomy to work. I am also very small breasted. After careful consideration of the three opinions I decided on doing a single mx with TE.  I would have done the lumpectomy in a heartbeat if my DCIS was small but I had a large area of enhancement (4cm) showing up on MRI.  The DCIS did not showed up on mammogram nor on the ultrasound.  The MRI was done because of my family history and dense breasts. Unfortunately, my DCIS was so extensive that clear margins could not be obtained with a mx and I ended up having radiation anyway.  

  • mom3band1g
    mom3band1g Member Posts: 817
    edited January 2011

    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!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Hi! I just wanted to pop in and share my experience.  I was an A cup and went forth with BMX for LCIS.  Lumpectomy wouldn't have treated it as LCIS is multifocal.  Well, pathology came back and I indeed had DCIS, it went undetected by Mamm, US, & MRI.  So, in the end I was glad to have taken control of the situation.  I did not require radiation.  I was concerned about Tamoxifen being my treatment and really didn't want to do that if I could avoid it. 

    I am 5 weeks out from BMX, (nipple sparing) have TE's, if you don't know much about this particular surgery it is a super option for small breasted women.  You get to keep your nipples!!! I look pretty much the same as I did prior to surgery, except a bit deflated since I am in the middle of fills ;-).  The scarring is minimal, about 4 inches in the crease under my "breast" and that's it, I am really thrilled with the cosmetic result.

    I just got home from the gym.  I was cleared for the bike and walking on the treadmill and I am trying to slowly reintroduce exercise to my routine.  I think that having been in realtively good shape prior to BMX really helped.  Recovery has been smooth (so far) and I personally don't mind the numbness accross my chest.I am in no way trying to make it sound like a walk in the park, but I had prepared myself for the worst-case and so far so good.

    Whatever you choose for your treatment of course is up to you.  I was for the surgery since I was 36 at the time with 5 & 7 yr old daughters.  I now feel like I can close the door on all of the stress, anxiety & decsision making that was ruling my life.

    Good luck & I wishing you all a great day!

  • roseg
    roseg Member Posts: 3,133
    edited January 2011

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

  • mom3band1g
    mom3band1g Member Posts: 817
    edited January 2011

    not everyone has the option to keep their nipples.  It all depends on where your cancer is.  It truly is not a one-size fits all thing!

  • gymnut
    gymnut Member Posts: 37
    edited January 2011

    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.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    mom3band1g, It was never my intention to imply that this surgery is for everyone, of course I would expect women to discuss that with their Dr,  but it is an option that I thought would be worth mentioning.  Having a BMX is traumatic, and the opportunity to "possibly" keep your nipples is an important one to know about.  Not all Dr's are skilled in this particular surgery so some women might not know about it, actually, it was right here at bc.org that I found out about this surgery and then I met with my BS who said I was a good candidate for the surgery. 

    I noticed that this thread was started looking for treatments/suggestions and I just wanted to spread the word, especially since the main topic has small breasted women in mind, and from what I understand small-sized women are great candidates for this particular surgery.  It all depends on where your cancer is located, absolutely true...but also knowing all the "possible" options is important when making such important life-altering descisions.

    gymnut - I am absolutely not trying to put out scary things, but yes, my DCIS was not found until after BMX.  It was spread throughout my (dense) breast and didn't show up on any tests, including MRI. The biopsy taken found LCIS, DCIS was adjacent, but not detected. I am in NO way trying to put this out there to make anyone "jump the gun" for any particular surgery, it was just my experience. 

    I didn't "try" anything on in regards to implants, but I did get to feel both and got an explanation as to how they would work, ex doing fills, etc.  Ask lots of questions at your next appt and maybe your Dr can show you the different types to give you an idea.  This was also done at my PS office at one of the 1st consults prior to BMX surgery.Good luck getting all the answers you need!

    Wishing you all a peaceful day!

  • azul115817
    azul115817 Member Posts: 98
    edited January 2011

    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!

  • hope25
    hope25 Member Posts: 6
    edited January 2011

    I am also an A cup as well small  I have to much DCIS in my right breast and opt for a Mastectomy vs. lump/radiation not my thing. I would rather go through the reconstruction and schedule for my surgery Jan 19,2011 and trying to figure out single or double at the moment.  I was told I would only be out for a couple of weeks and then back to work. It really is personal choice good luck with your choice.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited January 2011

    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.

  • bher
    bher Member Posts: 86
    edited January 2011

    gymnut - As you can see there is no one treatment for dcis and part of the treatment plan depends on what you are comfortable with. I found getting second and even third opinions helped me determined what treatment was best for me. Also my BS took my case to a tumor board which gave me some reassurance that I was doing the right thing.

    The reason I opted for a single mx was because I had too much dcis in a small breast plus I had microcalicifications in a different area from the large enhancement showing up on MRI.   My gut feeling told me that even if I tried a lumpectomy, I would end up with a mx anyway and I was right. The MRI showed about 4cms of dcis but when the path report came back after my mx, I had a total of 12cms dcis throughout. Forturnately, no invasive componet was found but almost all my margins were close, hence the reason for radiation.  I did not do a BMX because my other breast was completely negative in all the diagnostic studies and I am BRCA negative. This was the right decision for me.

    Good luck to you during this most difficult decision process.

  • gymnut
    gymnut Member Posts: 37
    edited January 2011

    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.

  • treelilac
    treelilac Member Posts: 245
    edited January 2011

    I'm also small-chested. I was considering lumpectomy plus radiation too. My DCIS was about 2 cm (estimates). But since it was in the upper pole, close to the chest wall, the radiologist said I couldn't use partial radition (external beam) as it would be hard to precisely focus on the site. And I couldn't use internal radiation (Brachytherapy) because of the close proximity of ribs. I would have to have whole breast radiation. So the location of the tumor affects the choices in radiation treatments. Hope this helps anyone weighing options.

Categories