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LCIS blog- preventative bi-lateral mastectomy

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Comments

  • ArleneMarie
    ArleneMarie Member Posts: 89

    I woke up this morning and, for some reason, I really felt the implants on my body.  I have to say that, instead of feeling sad, I felt very thankful for them for helping me to avoid breast cancer.

  • leaf
    leaf Member Posts: 1,821

    It sounds like you are 'incorporating' your implants into your body image, and feel good that you couldn't have done more (with today's technology) to protect yourself.  I have not had a mastectomy or implants, so I've often wondered about how people feel about implants - do you feel they are 'part of your body', even if they may have altered sensation than before?

  • ArleneMarie
    ArleneMarie Member Posts: 89

    Good question Leaf :)  How are you by the way?  It's funny because last night, my husband snuggled up to my boobs and I told him that I had really felt and thought about them that particular morning.  He asked, how could they "hurt" if you don't feel them and I replied that they don't hurt; sometimes I am just aware that they are there.  I think that at the one year mark (which is where I am), I feel like they are truly part of my body but different.  We were trying to figure out what would make them feel odd at times and the only thing that we came up with was that they are bigger than my real boobs so the weight on the muscle and skin to hold them in place sometimes caused me to notice them more on occasion.  We couldn't come up with any other reason.

  • leaf
    leaf Member Posts: 1,821

    Hi ArleneMarie!  I have a cold at the moment, but am otherwise doing fine.

    Thank you for trying to describe it- it sounds hard to describe!  It certainly makes sense to me that they might feel 'odd' at times.  Even with NO prostheses (though I have a  very small titanium plate in my cervical vertebrae I certainly cannot feel), even though they don't hurt, sometimes, say, my elbow or toes might feel odd.  Maybe its something like my yoga teacher is talking about 'I want you to feel in your bones'.  Being more aware of different parts of your body.  

    I'm so glad your PBMx is turning out so well for you!

  • Mykidsmom
    Mykidsmom Member Posts: 448

    Just my little two cents, but the way I explain the sensation to my PS is "the new normal." My implants are very different from having breasts, but they have been w/ me for almost three years and are as much a part of me as any other part of my body. I totally don't think about them except when I am hiking in the very cold. Then they do feel a little strange and I need to be sure to keep them warm. My heart goes out to anyone newly diagnosed w/ LCIS. In some ways the need to make your own personal decision is more difficult than if your doctor took the choice out of your hands. What ever choice you make needs to be the one that feels right to you. And then you move on with living your life!! Take care. - Jean

  • ArleneMarie
    ArleneMarie Member Posts: 89

    He He Jean.....Yes COLD does indeed suck!  Good thing we live in South Carolina :)

  • MammaShells
    MammaShells Member Posts: 16

    I wanted to send a quick thank you for this thread. I am scheduled for a double nipple sparing mastectomy and immediate reconstruction at MGH in Boston on 2/22. I seem to be giong between being excited to finally write this worry and stress off and wondering how much I'm going to miss the way my breasts look and feel. It is a strange place to be in, knowing that you are the one driving the decision.

    I was diagnosed with LCIS in November 2010, also ADH and ALH throughout, two months after my husband of 16 years moved out and asked for a divorce. Since then, I have taken steps to get my life back and make every moment count. I needed a year to sit with the diagnosis and get through some difficult twists in the road. During that time, I've had 6 cysts develop since 11/10 and thankfully all reports have come back clean. But, being this lumpy and "atypical" is scary and I want to be heathly and present to enjoy this next part of my life.

    Any advice or encouragement would be very much apreciated. Thanks again for sharing your story and experiences.

    ~Sheli

  • ArleneMarie
    ArleneMarie Member Posts: 89

    Hi Sheli,

    If you have the opportunity, you may want to read my blog which chronicles the mastecomy so you can get a feeling of what may lay ahead for you.  Feel free to contact me via email as well and we can schedule a time to talk if you would like to ask any questions. My personal email is int he blog. I thought the hardest part for me was to analyse and then make the decision to move forward.  After that, I knew that I had to go through the process and heal.  For me, it took about four months total before I could do everything I did beforehand.  I actually like the way I look now more so than before (but that is just me).  I had cystic breasts as well and a family history and I thought it wise to move forward with my life and avoid the worry of when I was going to get breast cancer which prompted my decision.  Fell free to contact me anytime Sheli :)

  • beacon800
    beacon800 Member Posts: 47

    mammashells, there is a poster "fire-dancer", I am pretty sure she had a bilat nipple sparing mx at MGH also, maybe a year ago or so.  You might want to check with her on advice.  Hopefully I remember this right!  Good luck to you - it will be fine!  I did a bilat mx and it worked out excellent.

  • britvalarie
    britvalarie Member Posts: 10

    Hi Sheli,

    I had a double mastectomy and reconstruction on December 7th.  Like you, I was diagnosed with LCIS, ADH and ALH.  I was also dense and cystic and had a horrible family history of this horrible disease..  And also like you, I went through the gamit of feelings before the surgery.  But, I'm happy to report that I came through the surgery fine and couldn't be happier.  I feel blessed to have stopped this beast in its tracks before it devoured me.

    I love my new flat tummy and my foobs are looking better everyday....although, they are swollen and quite big,,, just wanted to warn you of that :)  But, after getting my final pathology, I know it was the right decision for me.  The report showed more LCIS, ADH and ALH in the left breast, and my right breast that I had always been told was fine after all the screening had extensive ADH and ALH.

    Like ArleneMarie, please do not hesitate to contact me if you have any questions at all!!

    Take Care,

    Valarie

  • carol57
    carol57 Member Posts: 1,550

    BritValarie and I must be twins separated at birth, because I could use her exact words to describe why I chose prophy bmx and recon. Mine was last July, diep, and yes, swollen at first, and lots of unusual healing experiences --I mean, not healing problems, just new-to-me unusual healing experiences, and the end result is very, very good. 

    Like Valarie, I feel blessed that of all my female relatives, going back three generations, I'm the first who had the benefit of the LCIS early warning system and got it before it got me.  I also reflect often on the fact that my mother, her sisters, their mother and grandmother had zero recon choices, where I had quite a few options.  My mom was diagnosed at age 38 and is at age 82, the only survivor in the family. She is agog at all the options I have had, including of course, the nonsurgical surveillance-and-drug route. Sheli, our choices can be hard, in part because we have so many to choose from, and they all have their merits. That in itself is something to celebrate, and a way to focus on a positive outlook going forward.

    My one bit of advice to you would be to pay extra attention to physical fitness between now and Feb 22.  The stronger the heart, and the stronger your muscles all over, the easier will be your recovery. Not to mention that wearing yourself out through exercise is a great way to lower stress.  That's my experience, anyway, and I wish you well as you approach your surgery date.

    Carol

  • leaf
    leaf Member Posts: 1,821

    I love all of these twins-separated-at-birth! Its so nice to know that we are not alone going through this!

  • MammaShells
    MammaShells Member Posts: 16

    Hello, we are all sisters for certain. It is amazing how similar some of our LCIS stories are and you are all wonderful to have shared such personal experiences and encouragement. With the LCIS diagnosis, there is definitely some wrestling with a very personal decision. But, we DO have options and we DO have time and I am feeling much less alone in this decision right now. Thank you!!!

    I did have a chance to connect with FireDancer, and she actually spent an hour of her time on the phone with me a few months ago before I made the final decision and appointment. I actually have the same BS and PS, and she was very informative and encouraging. Remarkable really.

    So, I am officially "in training" for 2/22. I had made it a personal goal to get healthy and commit to a healthier diet and more exercise last year and I've lost 40 lbs since peeling myself off the couch post separation/diagnosis...I feel like I'm in the best shape I've been in. The exercise has been the best medicine for lowering my stress and helping my sleep. This is one of the things I'm nervous about actually, I don't ever want to be the defeated girl curled up in the fetal postion on the couch with a bottle of wine and a bag of potato chips again. I have got to keep moving forward.

    I welcome any and all suggestions as I prepare. Thank you!!

     ~Sheli

  • ArleneMarie
    ArleneMarie Member Posts: 89

    As good as potato chips and wine sound, kudos to you for losing 40 pounds!!  I ended up gaining 6 pounds since the PBMX and , for the life of me, can not get it off.  However, that being said, I am still very healthy and work out 4x a week.  Personally, I think it is just part of being 48.  In any case, I started walking one week out from the mastectomy and it did wonders to go outside, even when it was cold...and it was freezing in PA at the time.  It clears the valium out of your head :)

  • carol57
    carol57 Member Posts: 1,550

    Sheli, Triple WOW for your get-fit commitment and results! 

    I had a diep immediate recon with my bmx, and that poses a real challenge for movement, because the abdominal incision is huge, and the internal ouches are definitely a factor for about two weeks.  I recall saying over and again 'bless the squat' because my leg and butt strength, as well as just going into it with a strong core, made it possible for me to maneuver the body using anything-but-abs in ways I would not have thought possible!  Even if your surgery does not open your lower body from side to shining side, of course you'll recover so much easier now that you are fit.  Kudos to you: you should feel very good going into this.

    (And speaking as one whose first husband left for another woman, I kinda suspect that the hardest part is behind you, and this surgery is a pothole compared to the road collapse you have already dealt with.)

    ArleneMarie,  I'm sympathising with the weight-loss challenge!  I work out a crazy amount, with a trainer to keep me honest, so to speak, and well...pooh!  It's very hard to shed the pounds.

    Carol

    Carol

  • ArleneMarie
    ArleneMarie Member Posts: 89

    I was just wondering how everyone has been feeling a year or so after their PBMX?

  • msippiqueen
    msippiqueen Member Posts: 20

    It will be two years for me next month. Thank goodness for the CHOICE of mastectomy. Many minimize this condition and the surgery is not offered and the peanut gallery calls you "radical".



    It's interesting Tamox is referred to chemo these past few days when it came to light CVS distributed "chemo" instead of prescription flouride to children. Much less threatening to call it an antihormal (that may suppress the fire to cancer).



    Studies? Anybody watch Dateline on "studies" the govt supports and puts out there that are flawed regarding prescription drugs? Anybody think breast "studies" will be held to a higher standard?

    It will open your eyes to the gold standard and just how tragically flawed it can be. Check out the Dateline that aired 3/4/2012.



    So while women try to parse through what's true and unbiased, what's not motivated by money or fear, we must still lobby for the choice that removes the opportunity of what everyone agrees is a solid and real chance of invasive cancer. The watchful waiting. So as to jump on it right away. Because once invasive you must (all choice removed) spend a lifetime watching for metastatic cancer.



    If a woman's choice is watchful waiting and the odds for advancement of disease are acceptable to her and the lifestyle of being viligant fits, she can go for it!



    The healthcare providers and peanut gallery should not force that choice upon any individual, either by "studies" (specifically, the research on LCIS is wholly inadequate and understudied, at best) or radicalizing our choice for PBLM.

  • ArleneMarie
    ArleneMarie Member Posts: 89

    I, myself, was also perplexed when people would comment that they thought it was radical. Why would being proactive be radical?  I, myself, did not want to wait and see when the cancer would come.  Thanks for your comments and I am glad you doing well. :)

  • shabby6485
    shabby6485 Member Posts: 48

    Hi everyone, I was just diagnosed with LCIS paired with a very strong family history.  

    I am planning on a pmx.

    My surgeon said i was a good candidate for nipple sparing.  I cannot find any "stories" about this surgery.  I would love to know about recovery and pain, ect.

    Anyone have anything to share? So confused right now. Thank you.

    God Bless. 

  • november
    november Member Posts: 12

    shabby6485- As far as pain and recovery you may want to check the february 2012 mastectomy thread. I know there is a lot of information there. I had a PBMX on 2/1/12; the drains are a pain in the neck but the pain is very manageable. good luck to you and God bless you

  • ArleneMarie
    ArleneMarie Member Posts: 89

    Shbby,

    I had a nipple sparing mastectomy.  There is no difference in pain that from a regular mastectomy.  They do look pretty darn good, though, and they still "erect" when stimulated which is good for my husband.  I did write about the pain on the blog but november is correct when she said there is minimal pain.  It is just those annoying drains for the first week and then the TEs which are also annoying but extremely manageable. 

  • MammaShells
    MammaShells Member Posts: 16

    Hi girls. I am two weeks post-op and doing very well. My path came back with more lcis, alh and Adh throughout but nothing more! I'm sure that the drugs had a lot to do with it, but I will never forget the overwhelming sense of relief and peace that I had when I first woke up. Absolutely the right choice for me. I am still pretty tired and sore, but drain free! Scariest part for me was about 7 days post surgery when my nipples turned dark and scabby, one week later they have peeled and they are both nice and pink. The advice provided on this board helps so much!

    Getting out for about 2 hrs each day and walking around the block a few times a day...wiped out at the end of the day but hopefully it will get better each day.

  • leaf
    leaf Member Posts: 1,821

    Congrats, MammaShells!  It feels so good when you make the right choice for you!

  • ArleneMarie
    ArleneMarie Member Posts: 89

    I just found out that my friend from HS is dying from BC that has metastisized into liver cancer. She is my age - 48 and may die this week.  Thank you God for giving me the warning sign of LCIS and making me proactive.

  • shabby6485
    shabby6485 Member Posts: 48

    Hi ArleneMarie,

    Sorry to hear about your friend.  I also feel "blessed" to have LCIS and have the opportunity to take charge of this instead of the other way around.  

    People think I am in some sort of denial but I honestly feel this way.  After 10 biopsies in 4 years, which wreaked havoc with me mentally, this diagnosis has offered me some type of relief.

    I guess you can't explain that to people nor do I feel the need to.  We live in our skin and choose the best path for us.

    I have a consult in april for NSM. Want to get the ball rolling.... 

  • Crescent5
    Crescent5 Member Posts: 64

    Shabby, I hardly told anyone. It was none of anyone's business, really. My husband was on board, and that's all I cared about. When I walk outside in a tank top this summer, I suspect to get a little side eye from the gossipy neighbors who will assume I had some work done. Little do they know what I really did. lol

    Pain? Here's the thing. If you feel any pain, you will be glad. You know why? Because that will mean you didn't lose your feeling entirely. Having said that, I really didn't feel much of anything after surgery. The TEs got uncomfortable, but I may have pushed myself too soon. I had zaps in my nips early on and that made me very very happy that they were coming back to life.

    Read the boards, but don't read too much. Some of us had complications, but most will not. Even with mine, I'd do it over again in a heartbeat. Don't let the problems scare you.

  • ppeople
    ppeople Member Posts: 13

    Hi Shabbby,

    I too am planning a NSM, my date is April 18, seems unreal.

    It is comforting to read others stories and I hope I can add mine to comfort others when I am on the good side of this experience.  I have learned a lot so far about the limits of control and the odd forms blessings can come in, LCIS  is one of them.  I see my neighbor with stage 3, and the surgery was the least of her troubles but for me it seems like a huge hurdle.

    Mamma, congrats on your recovery!  Inspiring to me!

  • ArleneMarie
    ArleneMarie Member Posts: 89

    Plymouth,

    Are you having yours done in Philadelphia as I see you are form NJ? 

  • ppeople
    ppeople Member Posts: 13

    Hi ArleneMarie,

    No, here in NJ.  Thanks for sharing your experience in your blog, it helped me!

  • Mykidsmom
    Mykidsmom Member Posts: 448

    Someone asked how we feel post BMX, I had my surgery in 2008 and hardly ever come to this site or think about LCIS. As far as I am concerened all that is behind me. Hugs to those of you going through it, but you will prevail! And someday you will be writing that it is three years behind you. Best wishes! - Jean

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