Nipple retraction - how are others dealing?

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LoveFromPhilly
LoveFromPhilly Member Posts: 1,308
edited October 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hi! My right breast (where tumor was? Ibrance has shrunk!) has a retracted nipple.

I did not have surgery to remove tumor as MO says that evidence is anecdotal that having tumor removed at this point makes any differnece. Thankfully the Ibrance is working!!!!

I am 41 and feel some shyness/embarrassment around how my nipple looks. I don’t like being naked in front of my friends anymore (like trying on clothes with girlfriends shopping) or topless sunbathing.

I’m sure it’s all in my head that everyone is staring, but it definitely looks not “right” and I feel concern that I’m grossing other people out and/or making others uncomfortable with m deformed nipple.

Anyone have thoughts/feedback/experiences?

Thanks all!

Brenda


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  • NineTwelve
    NineTwelve Member Posts: 569
    edited June 2018

    I have something similar. My tumor shrank and one breast is misshapen and the nipple turns to one side. I also have a port for chemo, which I find ugly. I have never spent much time nude around others, except at the communal Japanese baths, where it was clear that no one is perfect, and everyone has good reasons for wearing clothes most of the time. You learn not to stare. You forget that you're naked when everyone else is. And you forget that you're not perfect, because no one else is.

    If I knew I was going to want to spend time in my birthday suit around others, I might get a temporary tattoo over my "bad" breast, or maybe a henna design (not black henna, though, because that stuff isn't good for you). After all, we know that we would not judge others for their battle scars. (Even if there are no scars, because there was no surgery.)

    And I think I would use the occasion to explain my cancer situation again to my friends. For some reason, they can't remember the particulars of stage IV cancer. They are always asking about surgery and chemo. They always think I'm all done with treatment because I have hair. I don't want to dwell on it, so I just say, "I'm stable right now. Thanks."

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited June 2018

    I have the same thing. The Ibrance worked really well at shrinking the tumor but in the process it pulled most of the nipple in. My MO said that sometimes it will just release again on its own as the tumor is further destroyed. But after 18 months that hasn't happened to me. It looks like I've had a lumpectomy even though I didn't have any surgery. One of my CT scans even referred to my "lumpectomy" and I had to go through endless hoops to get the language corrected. I wish there was a cream or something we could use.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited June 2018

    thanks for responding NineTwelve and Chicagoan :)


    NineTwelve - I have the same experience in friends who really can’t quite get the info right. Last night one of my good friends shared with me that she believes that repressed emotions cause dancer. I almost flipped my lid!!! But I kept my cool and kindly asked her about her thoughts on why children or puppies get cancer. She is gonna believe what she wants. I don’t think I got through.

    Part of the challenge for me is to get over all the insane blaming thoughts people have about being diagnosed with a chronic disease.

    i am a person who loves to be naked - at hot springs, at nude beaches...wherever appropriate. I have always felt confidence and pride in my body. Now I feel like the evidence of this disease is very brightly visible in my breast and nipple.

    Chicagoan - I agree about a cream!!!

    I read that there are simple surgeries to un-retract the nipple. I am not a fan of going “under the knife.” And I am in a mental debate trying to decide just how important it is to me.

    Also the side of my boob is all funky and weird shaped now too...so there’s that. Lol! 😂

    I am headed to a place with a nude beach in August. I may just wear my bikini top...last summer I went topless and felt the sadness and grief rippling through my friends who looked at my breast. I am such an empath that it hurts me to see them hurting or the pain move across their faces when they see my disfigured boob/nipple.

    How can we be more empowered?????


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  • snooky1954
    snooky1954 Member Posts: 883
    edited October 2018

    Hi Philly - Chicago -- and 9/12

          That's interesting about your nipple retraction.  I sure hope that mine does!  I did not have the orginal breast tumor removed. It's high on my right breast (12 position) and it grew towards the chest wall and then veered down and is coming out by my nipple.  So, now it's spreading fairly fast as a skin cancer.  But, you ladies report that Ibrance/faxlodex will show you that it's working by distorting the nipple area.  I say bring it on!  I'm on in my first cycle of Ibrance so I don't expect anything yet.  But do you remember how long after starting the treatment that you saw these signs?  During my first week, I did notice a deep burning, stinging like pains, and I felt something was in there just twisting around my "lump".  Onc. said that could be good sign that treatment is working!  I think of it as my body wrestling with the devil.  Praying Ibrance will work for me.  Thanks for all info.     Sue

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited October 2018

    Snooky,

    Mine happened really fast. The Ibrance dramatically shrunk my tumor in the first month. It was as though it was drying up the cancer. In the process it pulled the left nipple in. My tumor is still attached to the chest wall. It seems though that every month, a little more of my breast gets freed. Right now, after two years, I still look very distorted. But hey-it is two years that I've been on Ibrance and Stage 4-so I really can't complain. I hope Ibrance works for you-I think what you are feeling are good signs that it is going after the tumor!

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  • snooky1954
    snooky1954 Member Posts: 883
    edited October 2018

    Oh Chicago, Bless You for your quick and very encouraging reply.  Your in my prayers too. Hugs


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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited October 2018

    hi Snooky!

    Hmm yeah trying to recall what happened exactly. It is all a bit fuzzy as I was in a total fog at time of diagnosis but I do think that possibly because of the Ibrance and other meds working, there was nipple retraction on the breast with the tumor.

    It is a teeny tiny bit less retracted now as the tension in my breast is no longer there and the tumor is gone (thank you Ibrance!!!) and my breast tissue is soft and normal feeling.

    I do have some dumpling on the side of my breast that looks a little odd but not too noticeable.

    Either I have gotten used to it and less self-conscience about it or maybe it has all gotten a little better or both?

    Good luck with the treatments! I am sending good vibes to you and that they continue working! And yes the pain and pulling is a normal side effect which my MO told me many people experience which means the medicine is working!!! Happy

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  • snooky1954
    snooky1954 Member Posts: 883
    edited October 2018

    Dear Philly

    Thank you so much for your encouraging/upbeat reply. You've made my day. Hope that you also have continual success with IBRANCE!

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