masc versus lump

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    ebarry-

    I chose skin-saving, nipple-saving bilateral MX for the same reasons you cited.  I was afraid that if I waited the cancer would return, and be too close to the nipple, and that option would be off the table.  I didn't want to stress about it every day, either.

    If you are considering nipple saving please find someone who is very experienced.  My BS was one of the top surgeons in Tucson and she specialized in this kind of MX.  She said the rate of recurrence is exactly the same no matter what kind of MX you choose.  During my surgery she tested some cells within the nipple for cancer.  Had she found any she would have removed them during my MX which was a risk I knew going in.  She said with DCIS (which is what I had) the cancer originates in the ducts and can move into the nipple.  If you have a MX you are removing all the ducts so there is very little chance of it coming back in the nipple.  If it did they would remove it but she said she has never had a case where that happened.  

    I'm not telling you MX is easy but it's gotten a lot better in the last few years.  My BS did my incisions below the fold of the breast, my skin and nipples were saved, my sentinel nodes were tested, and as much breast tissue as possible was removed.  (This also has gotten better in the last few years.  Early skin saving MX they were not as skilled at removing all the tissue.)  When I have my expander removed, and implants put in, my PS said you will not even be able to tell I had a MX.  The downside- I lost the sensation in my nipple and more than likely I will have to have the implants replaced at least once in my lifetime.  But the upside was I feel like I don't have to live my life in fear that it is going to come back at any time.  I haven't eliminated all of the risk but a huge percentage of it.

    Good luck! 

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  • SWELL
    SWELL Member Posts: 7
    edited May 2010

    I did not even think about it.  I had a bilateral mastectomy within a month of my DCIS diagnosis.  My mother died from BC when I was 15.  I have a 15 year old daughter.  I don't want to repeat the cycle.  while my diagnosis was not severe, I didn't want to keep watching and looking for BC.  And I did both breast both to achieve symmetry and to eliminate fear of DCIS or worse in the other breast.  I had silicone implants at the time of the surgery.  I am just now 4 months post surgery and I  FEEL GREAT! The surgery was major (6 hours). Recovery was long -- I took 8 weeks off work (but could have gone back sooner. I am a preschool teacher and my job is very physical.) I am so happy with my decision.  I will have scars, but they are fading.  I will do nipple reconstruction in the fall.  I am happy with the shape.  I don't have a ton of feeling back yet, so it is hard to say they feel different. 

     I truly feel that my breasts did their job.  I nursed three children -- one for 3 years.  I wouldn't trade that for the world, but it is time to look forward and make sure I am here for those children as they grow older.  I don't think I will ever regret my decision.

     I know this is a very personal one to make.  I am so happy with mine.  Good luck to you as you make your decision.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited May 2010

    Just to clarify when the nipple is saved it is scrapped of all cells except where it is kept attached for the blood flow..so although there is a small potential of recurrence and having lost my own nipples I would have definately held on to mine if I had the choice 3 years ago..  Psychologically it is just plain easier for your mind to see what it has always seen before - so to avoid a long, potentially endless depression on top of a mastectomy, for me, the choice would be easy I would choose the nipple saving procedure!  Best - Deirdre

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  • ebarry
    ebarry Member Posts: 46
    edited May 2010

    I had my mammo and ultra sound this morning. Good news, nothing suspecious and no cavities! Really, I went to the dentist this afternoon...good news for me! To be honest, I was a little surprised, but relieved. Since learning I wasn't absorbing iodine, I've been concerned that the iodine wasn't preventing future cancer. I've learned a lot about vitamin b-12 of late, and I am pretty confident that taking weekly vitamin b-12 shots is what has kept me cancer free. After my recurrence, I've pretty much went to square one in finding why my body turned on me, and I've worked hard to find my way back to healthy living.

     If possible, I plan to keep my breast. There is a part of me that says get rid of it before there is a recurrence and I lose the choice to keep skin and nipples. Today, I am pretty confident that I am cancer free. I will be seeing the breast surgeon and talk to her about reducing the left breast to the size of the right one. I'm not sure if I want to do it now, or in 6 months. And I will talk to her about a possible preventive right breast mx...although right now, I'm thrilled I don't have to!

    Next Nov/Dec will be by 2 year mark being cancer free. At that time, I believe or perhaps will be only seen once a year. I am really ok with it. The fact that my multifocal was high grade and didn't show up its ugly face again tells me its probably not there and isn't coming back...:)

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited May 2010

    Congrats ebarry!!!  That's great news.. and if I can say you are a very strong person!   I use to take B12 sublinq.  on a daily basis - suppost to be as good as the shots (goes right into your blood stream) but I haven't seen my alternative guy for a few years now and so I am a bit out of the loop on the importance..  Here's hoping you remain cancer free for the rest of your life!!!  Best, Deirdre

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  • NotAgain2015
    NotAgain2015 Member Posts: 223
    edited May 2010

    Hi All,

    This has been a great thread.  If only the path was clear!!  I'm like so many here.  I need to decide mast vs. radiation/tamox.  Have any of you also taken tamoxifen?  The threads in the hormone therapy section scare me to death.  Everyone sounds miserable that is taking it.  For me, thinking about mastectomy - it would keep me from having the radiation to my left breast (heart & lungs) as well as having to take tamoxifen. 

    How many out there with DCIS just did lumpectomy and radiation and no tamox?  Did any use the prone position and shorter course of treatment?  

    Did I understand one post to say that post radiation, the radiation breast stays the same if you gain or lose weight, the radiated breast doesn't keep up?  The radiologist mentioned the breast could swell or shrink.  If anyone experienced this was it slight or alot?

    Thanks for taking time and sharing your experience.  Getting close to decision time...

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2010

    I had radiation on the left side with no problems. They are very precise with the technology now so that you really don't have to worry about heart/lung problems with rads. Being post-menopausal, I am on Arimidex, but know that most people DON'T have major problems with the anti-hormonals. Usually the people who post are (naturally) people who have had problems, the rest are just out living there lives. Good Luck! Ruth

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