DCIS/LCIS- want BMX

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Cttwinsmom
Cttwinsmom Member Posts: 3
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I have been reading the DCIS board for about a month. So helpful to hear other women navigate this maze of decision making...



was diagnosed with low grade DCIS- 1 cm and small area of pleomorphic LCIS in left breast on 2/27/12 at 48. BS says lots of "funny looking cells-ADH- mixed with typical cells. She is recommending tamoxifin/ radiation but says it's my choice if I want BMX. I'm very fair skinned, small breasted, and have a slight heart murmur so rad freaks me out a bit. I know BMX is no picnic either but I am trying to bring recurrence chance down as low as possible. I also have 12 year old twin girls who I want to be around for for another 35 years if possible. Anyone else opt for BMX with 1 cm DCIS/LCIS? Am I overreacting?

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited April 2012

    Wow I am so sorry you have to be here at all Cttwinsmom...  I understand your fears especially with 2 young girls who need their mom...  I also understand not wanting to do radiation because of your heart mumur so lets see if this can be handled a bit differently.  DCIS GRADE 1 is one of those grades that medical evidence says that there is a VERY low chance of this ever becoming invasive cancer.. That said once the "cancer" word is out of the bottle well fear becomes a huge factor.. so the trick IMO is to reduce the fear as much as possible so your decision is better suited for your subgroup of bc.. Have you considered having genetic testing?  This is not an absolute but it does/can help with our decision - for example if it comes back negative for the BRACA's then some of the fear will relax.. Genetic counseling will help you "see" the posibility of your having invasive cancer based on the other family members.  Another way to reduce your fear and to start hearing your own voice clearly is to add a therapist to your list of specialists - we get so much information that it becomes very difficult to hear your own voice - so you own intuition is drowned out.  A therapists job is to help that voice to be the main voice in your decision making.  Another way to reduce your fear is with a second opinion.  All you need do is ask your bs if he/she will send your tissue (from the biopsy)  out to a specialists in DCIS (there are many names here as well as many institutions so I won't put you through my own preferences that could just muddy the waters).  So you see if you can bring the fear down a bit you might be able to tell yourself that having the lesion removed and good "watchful waiting" might give you an opportunity to hold on to your breast perhaps for your lifetime.. If however you do decide on a BMX (many of us have) please look into a nipple saving BMX - it is a bit easier for you mind to accept your new breasts (if you plant to reconstruction) if your own nipple is still there - mind you they will never feel the same after the surgery - you will loose the sexual feeling that goes hand in hand with our breast.. but you will retain skin sensation.. And one for way to strenghten your own understanding would be to find Beasies posts here in in the DCIS forum - she is wonderful with her statistics on recurrence and doesn't mind talking you through your own understand of your risks..  The last think I want to tell you is your decision to do a BMX must be respected by your doctors your family etc IF you do indeed make that decision.. Hopefully reducing the fear will help you get the clarity to understand whether you need a BMX, (for emotional reasons and or for medical reasons).. and of course with a dx of DCIS you have TIME to make this decision.. Best of luck and I hope you have some clarity soon... Sincerely, Deirdre

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited April 2012

    The good news is that you do not have to rush into your decision, so you have time to think, read, and check with your gut as to what is best for you.  I had a similar dx, with no spots in left breast.  After thinking it through, I chose a nipple sparing bmx/immediate diep in New Orleans with Sullivan and DellaCroce.  I went in with breasts and came out with new breast tissue microsurgically transferred from abdominal tissue, also resulting in kind of a tummy tuck.  Not bad when the pros and cons are considered.  I have a disabled adult daughter who I am the fulltime caregiver, and will continue to be as long as I live.  I cannot be the "complicated" person in my family.  I did not want to mess with implant issues, my very fair skin would not have done well with radiation, plus I have autoimmune problems which would aggravate the skin issue.  I was told a recurrence rate of about 15% with rads, 2% with mastectomy.  For my own peace of mind, my gut told me I needed that fuller assurance.  I deal with my dd's unexpected medical complications every day and did not want to monitor my fear levels or having to be excessively watchful on my own behalf (although I still do visit my BS).  I went throught the whole "what if" process to try out all my options and eventually found a place of peace.  This is really important.  Everyone can have their opinions as to what worked for them and why, but ultimately you have to go with your gut.  The night before your procedure it needs to feel OK to YOU.  I chose a bilateral mx, since my point was to de-complicate my future.  No regrets.  And that's what you want for yourself - no regrets, no matter which way you choose.  Work it through, take your time, ask a ton of questions.  Don't let fear be your guide.  For example, many tried to deter me from a diep, telling me how problematic the recovery was - and yet they themselves had not had a diep. Because of these threads, I was able to ask those who had chosen a diep to speak for themselves and found it to be quite workable in the hands of a highly experienced team (the key to this is the experience level of the team).  The recovery was definitely manageable. And now I'm done with recon forever.  I'm glad I was not guided by fear, settled in and listened to my gut for myself.  Everyone has a different viewpoint and different priorities. It's worth it to spend the time researching.  DCIS is a slow-mover, so this is not an emergency. Take a deep breath, knowing you are not alone, those on the threads will continue to guide you well.  Blessings to you, - KC 

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  • alexandria58
    alexandria58 Member Posts: 1,588
    edited April 2012

    I'm also sorry you have to be here at all, CTttwinsmom.

    I do disagree with some of what Deidre wrote, especially since you could have 35-45 years left.  As I understand it, low grade DCIS is not as likely to cause invasive cancer in the short term, but there are a number of studies saying that a substantial portion of low grade DCIS will become invasive in 15-20 years, as opposed to the 5 years that high grade will take.  I also disagree on relying too heavily on the BRAC test.  One doctor told me that she thought that eventually a number of genes would be uncovered that contribute to breast cancer, BRAC is just what is now known.   

    I do agree that this is a very personal decision.

    I had a large area of mixed grade DCIS, so I wasn't exactly in your situation.  I decided on the BMX, even though the left side, on which I'd had 4 biopsies over the past ten years, allegedly was cancer free.  My only regret is not doing this sooner and thus avoiding any removal of the lymph glands.  I have peace of mind. I am not taking drugs that could have pretty nasty side effects.  I did not have reconstruction, and I also have no regrets about that either, except I should have had a tummy tuck while I was under.   

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  • Mallory107
    Mallory107 Member Posts: 223
    edited April 2012

    Just wondering if you have had a chance to speak with an oncologist yet??  If not you may want to do this. He can give you a more clear idea of risks and such. 

    I went with a BMX and don't regret it for a minute.  I came out of BC with no treatment other than surgery.  I would have not wanted to do the radiation either.  And with a BMX it is really not necessary to do Tamox either as it only reduces the risk by about 1/2%. 

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited April 2012

    Just to clarify a point it isn't necessary to do radiation after a BMX for DCIS IF the margins are clean - so there is a chance your doc's might still recommend radiation if you get dirty margins.. this (BMX) is not as easy as it is being represented.. please take your time and make the right personal choice for yourself so that you walkd away from this with no regrets for the decisions you make now..  Again, please pull up as many "Beesie" posts as you can find and really educate yourself on the ACTUAL dangers of DCIS and specifically the early grades - Beesie is sort ot the In-House Expert on DCIS (as well as other bc's)... Good luck!! 

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  • Cttwinsmom
    Cttwinsmom Member Posts: 3
    edited April 2012

    Thanks for your thoughts. I did test negative on the BRAC test but both my paternal aunts had bc- one died from it. Both were post menopausal when they were diagnosed. I went to the med onc last week and she said I was the healthiest person she had seen all day, maybe all month. I appreciate that and am grateful for it yet I'm still a member of a club I didn't want to join. I felt like she didn't offer a compelling case for the tamoxifen saying out of 1000 women, 50% on placebo, 50% on tamoxifen , 14% recurrence with placebo- 7% IDC, 7% DCIS, vs. 10% recurrence with tamoxifen- 5% IDC, 5% DCIS. Did I here that correctly? I have rad onc appt tomorrow, plastic surgeon on thurs, BS on Friday this week so I am trying to remain open minded. My BS says she will support my decision either way, just wants me to make it from knowledge, not fear.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited April 2012

    Hi again -  I just "bumped" a post from Beesie that should help you a lot.. please look for it at the top of the posts - it is Past post from Beesie on understanding DCIS..  Take care!

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited April 2012

    I had a BMX for DCIS with ADH and have no regrets whatsoever. My right breast was riddled with DCIS, ADH and another kind of precancer (I can't remember the name anymore). I had a presurgical MRI that showed something on the left that the mammogram didn't pick up. It turned out to be PASH, a benign tumor, whose only treatment is surgery anyway, so no regrets there either.

    I never knew about statistics of reoccurence when I was going through my decision making. When I hear people talk about statisitics of reoccurence now, I always ask myself, just how does one know which side of the coin they will be on? And as I understand what little I have read about LCIS, it can be a sneaky little devil as a precancer and when it turns into invasive. Read up on LCIS and ILC (invasive lobular carcinoma) as well, as that is another factor for you besides DCIS and ADH.

    It sounds to be like you have already made up your mind. I knew what I wanted as soon as the surgeon drew a picture of my breast. 

    Take the information you learned about your particular cancer and precancers in  your particular situation and make a decision.Talk to your all your doctors about your concerns. If you have quesitons about rads, see a radiation oncologist, don't rely on your surgeon for information like that. Although some doctors know something about a little of this, a little of that, make sure you see what they specialize in for those particular questions.

    Good luck with your decision making.

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  • ppeople
    ppeople Member Posts: 207
    edited April 2012

    Hi, I just has PBMX last Wed for LCIS.  So far I feel piece of mind.  It is a very personal decision with no right answer.  For me, I knew I did not want to take tamox (no rads are given for LCIS, but if I had DCIS, I know I would not want rads), so for me BMX was the answer.  No breast=no breast cancer (almost)

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  • alexandria58
    alexandria58 Member Posts: 1,588
    edited April 2012

    Actually, there's a lot of controversy over whether or not to have radiation with a lumpectomy for DCIS and clean margins even with lower grade DCIS.

    The two aunts who developed breast cancer would be of great concern, if it were me.  I still believe that they have not identified all the genetic factors that cause breast cancer.  

    No, the BMX is not "easy," but I prefered the option with the lowest possible risk of recurrence or invasive cancer.   Once was enough for me.  But it's a tough decision, and one you have to make for yourself. 

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  • mikita5
    mikita5 Member Posts: 373
    edited April 2012

    As alexandria said:  "No, the BMX is not "easy," but I preferred the option with the lowest possible risk of recurrence or invasive cancer. Once was enough for me! "

    DITTO!  I had DCIS and also had a bilat mx with DIEP. That was 4 yrs ago and I haven't regretted it yet. DIEP is an extremely rough surgery with a hard recovery. but I would do it again just to reduce the risk of reccurence. 

    I also had the BRCA testing and mine came back negative. Just take your time and read lots..Make the decision you feel you can live with, then go with it... Don't let anyone else sway your decision.. Everyone, including my oncologist, tried to talk me out of going thru with the surgery, but I knew it was right for me... After surgery, pathology came back with 2 more spots of DCIS in same breast.  My oncologist smiled and said I'd made the right decision.. 

    Only YOU can know what's best for you!  My thoughts and prayers will be with you. Take your time.

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  • beacon800
    beacon800 Member Posts: 922
    edited April 2012

    I have been in your same shoes. Dx with pleomorphic LCIS in my late 40s. My family history is similar to yours: my mom died from bc as did her two paternal aunts. I had a negative BRCA test.



    I had other risk factors including dense breasts, no kids, history of oral contraceptives plus some other abnormalities that came up during other biopsies that are known to increase risk. All of this was enuf for me. I had a BMX, got clean pathology on it and that was it. No tamoxifen, no more mammos. I am super grateful and happy.



    It's a tough call but for me it was easy. I felt like I got an early warning bell and had access to technology and science that my mom never had. I wish you luck in your choice. It's a very personal choice, but follow your gut instincts.







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  • Sadie55
    Sadie55 Member Posts: 6
    edited April 2012

    I too am in your same situation. I have low grade DCIS, 8 mm. My breast surgeon recommended a lumpectomy plus rads. My sister died of breast cancer six years ago at the age of 49. I'm 45. I read as much as a could, and made a list of pros and cons. Ultimately, I decided that a double mastectomy with immediate reconstruction was for me. I'm scheduled for surgery on May 24. It does seem that I am taking a drastic measure, but I know I would not be at peace with a lumpectomy.

    Good luck! Whatever we decide is the right decision for each of us.

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