Prophylactic Mastectomy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    Kimber--- they wrapped me in a snug chest binder which I was allowed to remove after 2 days and shower with the steri strips still on. Then I just kept it covered with  gauze pads and tape  for a while.  I had a problem with some stitches backing out instead of dissolving, so it took quite a while to heal and was a little tender. But basically, I took it easy for a few days and was pretty much back to  normal activites in less than a week. My incision was about 2 inches long; it's so faded now I can hardly see it.  I've had clear mammos ever since (over 4 years now)  and an US too.  I do have some areas on MRI that they are watching, but they feel very confident that they are benign findings. I go for my repeat MRI and mammo in about 5 weeks.

  • Kimber
    Kimber Member Posts: 384
    edited February 2008

    Oh geez, I wasn't expecting a chest binder....and I have trouble with "dissolving stitches" - they always "spit out" of me... I guess I better let the surgeon know. Thanks for the info Anne!

  • leaf
    leaf Member Posts: 8,188
    edited February 2008

    When I had my excision, I had a thing that looked like something out of a Wagnerian opera or an Amazon warrior painting. It was taped on, but didn't go around my chest, but covered an supported my entire breast, to keep it from jiggling. My stitches were removed a few weeks later by tweezers, etc. (My area of concern was in my mid breast, but I found out a year later they created scar tissue just under my nipple, and back further-all over my breast.) I found front closing jog bras and tiny ice packs invaluable. Your experience may differ.



    Wishing you boringly normal results!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    Kimber--that was just my experience, I'm sure it's different at different facilities, but actually  being wrapped up snugly helped hold the breasts still (no special bra needed) and I had very little pain. I had trouble with stitches "spitting" out after my abdominal hysterectomy too, I thought it was just me.

  • femme
    femme Member Posts: 262
    edited February 2008

    Dear Kimber,

    I will be thinking about you tomorrow. I am sure you will do just fine. You have become a great researcher in terms of gathering knowledge about your treatment.



    I remember when you first started to post on this website and you were as frightened and confused as all of us are in the beginning. Now you will have this procedure, making sure all your questions are answered. You are in the middle of hunting, gathering and discovery...be strong and in charge. Go Kimber, go!!! I had an excision biopsy in Nov 07 and it wasn't a big deal, just a little bump on the road (excuse the pun).

    femme

  • Kimber
    Kimber Member Posts: 384
    edited February 2008

    Thanks femme,

    I will be thinking of you on Tuesday as well. Post or PM me when you can and let me know how you are. Actually, I will PM you with my e-mail address.

    Kimber

  • LCISgirl
    LCISgirl Member Posts: 85
    edited February 2008

    Femme,

    Sorry for not responding sooner...haven't been online for a while :)

    Yes, I just used the term "lumpectomy" because it's easier to type than "wide excisional biopsy"  Wink I was one of those who was concerned that the sterotactic biopsy may not have found the exact spot, because the MRI indicated "suggestive of invasive" and not confined to one area.  The first surgeon I consulted wanted an excisional biopsy to have a better idea of what was in there...I wanted mastectomy right away.  I guess I was unsure if the insurance would cover it "prophylactically" so agreed to excisional biopsy next.  Since it was extensive, (even though all 3 biopsies showed only "in situ") the docs agreed that mastectomy was reasonable.  I've heard so many women say "follow your gut" and I do believe we have that special instinct. So I imagine you will feel the same way about your decision.  I felt very relieved after going ahead with the mastectomy and finding out that there was a small portion that was invasive.  I guess if I had waited and monitored like some choose, it would have been caught early too...I just didn't want to have that worry to think about.  I wanted the SNB for that reason too...I figured while he's in there, make sure to check everything. He did that at the time of mastectomy.   All the nodes were negative.  I feel so blessed!!! And, I'll be thinking of you too with good wishes for your surgery on the 12th!!! Keep us posted.

  • Joshua1-9
    Joshua1-9 Member Posts: 16
    edited February 2008
    tgym, I don't know if you've already gone ahead with your surgery, but if you haven't, I'd recommend Dr. Joshua Levine (www.diepflap.com)  I had a double, prophylactic mastectomy in June.  Dr. Joshua Levine, Dr. Robert Allen, & Dr. David Greenspun did the reconstruction (IGAP - donor site is the lower buttock) Dr. Levine was my primary doctor and he is amazing.  My new breasts look better than my original ones and the new ones are healthy!  Dr.s Levine, Allen & Greenspun operate in NY, NY; Bronx, NY; and Greenwich, CT.  Check out their website.  Good luck to you!
  • darkfairy
    darkfairy Member Posts: 28
    edited February 2008

    I had a preventative, skin/nipple sparing bilat mast last May. I don't have the BRCA gene but had fibrocystic disease/multiple benign fibroadenomas (had already had 7 lumpectomies) and ADH/LDH + dense breast tissue! My surgeon discharged me mid January pronouncing me cured and told me he was "99% certain" he'd never need to see me again.

    Three weeks after my discharge, I have a new lump just behind one of the nipples that he talked me into keeping. It's too small and too close to the implant to be able to tell whether it's a cyst or a solid so I'm back under observation. It looks like I might have to lose my nipples after all. The surgeon literally left 3mm of tissue under the skin and it's that 3mm of tissue that the new lump has grown in.

    I have no feeling in them at all although they do respond to hot/cold and touch. I can feel pressure on them rather than anything else. I liked having them there because they made me look more "normal" but now I wonder whether this was the right decision.

    I was a 34a pre-op and wanted to stay the same size. I had a one-step fixed volume implant recon and am now between 32 c/d. I was told the implants have to be a certain width to stop them from slipping out of the cavities that were made in the chest wall. My new breasts are also slightly lower down on my chest to accomodate for the extra width, hence my back measurement being 2" smaller. I have medium profile, textured 200cc silicone gel implants.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    darkfairy--since  those are all benign conditions that you listed, isn't it more likely that this new lump is scar tissue from the surgery?

  • rwalter
    rwalter Member Posts: 1
    edited April 2008

    i'm surprised. i know someone who had a terrible experience with patrick borgen. he has a nice bedside manner but 'out of sight out of mind' is an understatement - after the cheque was cashed, of course. wouldn't even return a phone call...

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    I am 41 and had a stereotactic biopsy last week.  One site of the two is Atypical Lobular Hyperplasia.  The other is a radial scar.  I am heading in to see a breast care Dr. today in Atlanta for the surgical biopsy consultation due to my family hx (first cousin-39 years, aunt (her mother), gma (aunt's mother) all living all had mastectomies) and my Mom (sister to aunt and daughter to grandma) died of renal carcinoma when she was 33.

    From what I understand ALH can be considered pre-cancer.  The surgical biopsy of course will tell us exactly what is going on and I am anxious to get this done.

    I am preparing myself for a probable double mastectomy mostly prophylactic with a reconstruction.  I am 41 have a 3 and 5 year old and can not allow cancer to grow in me.  I know what it is like to lose a Mom.  I was 4 at the time. 

    My husband is freaking out and is not supportive.  He thinks I am crazy to have a body part removed without having "cancer".  I may be putting the cart before the horse as the next biopsy will be more telling but I am planning on being very aggressive and getting this pre-cancer tissue out of me.

    Please weigh in.

    Thanks,

    Christine

  • CAZ
    CAZ Member Posts: 678
    edited June 2008

    Dear Christine,

    Sometimes husbands deal better with statistics.  Ask your breast care specialist for the cold hard facts.  You might even put a photo guide together for him.  You could say, if (insert photo of mastectomy with healed reconstruction) now, then NO (insert photo of mastectomy, radiation tissue damage, chemo hair loss) later.

    Once the initial fear for you wears off, he may see the wisdom in it.

    Good luck,

    Carol(AZ)

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    Thanks Carol.  That is brilliant.  I'll make sure to get the statistics for him.

    :)

  • ehall
    ehall Member Posts: 663
    edited June 2008

    Hi Christine--Carol is right--my husband was very supportive but dealt much better with the medical stats.  He was also a good sounding board when I laid it out before him.  Good luck today!

  • veggievet
    veggievet Member Posts: 72
    edited June 2008

    Hi Christine,

    You might also consider visiting FORCE: the website is devoted to hereditary breast and ovarian cancer and many of the women there have had to grapple with similar decisions.  The website is at:

    http://www.facingourrisk.org

    Although surgeons can be great for discussing cancer management, often I find that genetics experts are most up-to-date with risk and risk-reduction statistics and tips on discussing these issues with your support team.  Have you seen a board-certified genetics expert?  I would be happy to help you find someone in your area.

    Hugs and love,

    Sue

  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    my mother had the tattoo and she said that it was painful, of course, and it is very light and hard to tell that is was tattooed at all. 

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    Sue and All: 

    Thanks for the hugs and support. I had my appt today with my Breast Specialist Dr.  She deemed me as "high risk" and we discussed prophylactic mastectomy as an option esp. due to my family despite the fact that we are not positive for the gene.  My g'ma, aunt, and cousin tested negative. Some other mutant gene perhaps that hasn't been identified yet.

    I am having an MRI in two days due to her (The Dr.) concerns.  She feels that if the MRI brings back more than the two lesions biopsied-the ALH and Radial Scar that I might want to bypass the surgical biopsy and go straight to the prophy mastec. 

    I think she was concerned and I expected this due to having two seperate quadrants in my L breast turn up with two suspicious lesions. 

    I'll keep you posted.  Husband is coming around.  He was either in denial or scared or both.  He wants me to do what I need to do to prevent any cancer.

    Thanks again for the postings.

    Christine

  • CAZ
    CAZ Member Posts: 678
    edited June 2008

    Christine,

    I'm glad you have a breast care specialist.  It can be a long difficult road, but it's better with a good guide.

    Glad your husband is getting with the program.  It's hard enough as it is.

    Carol(AZ)

  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited June 2008

    Husbands deal in a different way, they can't fix it so they don't know what to do.  My husband keeps making jokes!  But i know it is because he is scared.

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    I am anxious to get the MRI done tomorrow and am curious to see if there are other suspicious areas or lesions. Anyone familiar with MRI and if it can pick up these things better than a Mammo?

    Daughtersofsurvivors:  Thanks for your comment.  I am the one making jokes I think.  I am not sure if I think this is serious or if I am protecting myself with diminishing the seriousness of it.

    And would the Breast Dr bring up or even talk to me about prophylactic mastec without thinking I was a candidate?

    Thanks!

    Christine

  • leaf
    leaf Member Posts: 8,188
    edited June 2008

    MRI is in general more sensitive than mammos or ultrasounds. But they also can give a lot of 'false positives' - see stuff that may look like cancer, but its really benign like inflammation.



    I think if the breast doc thought you weren't a candidate, (s)he would either say you aren't a candidate, or not mention it at all.



    I would guess that most of your risk was due to your family history.



    It is a very personal decision that only you can make. Most surgeons require that you spend at least a few months thinking about it before they will do PBMs. Some insurance companies will not cover, depending on your risk and/or how genetic testing comes out.

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    This waiting for the MRI is crap.  It has been 5 days since I had the MRI.  I have left a very pleasant and pleading vm today at the practice. 

     How long should it take for the MRI to be read?

    Calgon take me away.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    Waiting is brutal.  I had my MRI on a Tuesday, and my doctors called me with the results that Friday.  I know the amount of time to get the report varies, but 5 days seems more than reasonable.  My fingers are crossed that you get the results very soon, and that the report is good news.  Please let us know as soon as you hear.

    Dukemom

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    Thanks Dukemom.  How were your MRI results?  I am hoping by 5 today I get a call...or 5:30.

    Thanks for crossing your fingers!

  • ACAB
    ACAB Member Posts: 14
    edited June 2008

    Hi Christine,

    I too had an MRI last Thursday.  My BS said it would take 3-5 days to have it read.  Today was day 3.  I live in coastal NC.  Had lumpectomy in March dx of DCIS.  Couldn't commit to radiation and am having 2nd opinions at Johns Hopkins, visited them in May. They suggested the MRI since I was having trouble deciding on course of treatment.  The BS's nurse told me they read MRIs within 24 hours.  Fed ex'd a cd of MRI and mammo films to them today.  Going on vacation Friday, hope to hear from both parties by then. 

    I'm 43 have 2 little girls, aged 4 and 2.  They have been enormously distracting through all of this, a real blessing. 

    Hopefully we both post tomorrow with "clean" MRI results.

    Take Care, Amy

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited June 2008

    I did get some prelim results last night from one of the Dr.'s after pressing the practice administrator.  Their topgun MRI Radiologist is on vacation until Monday.  I am told that now not just my left breast which does show the ALH and Radial Scar but also my right breast is now showing two spots that she said "really light up".  She then said...come in on Tuesday at 8am and we'll do the ultrasound and possibly biopsy of these two areas.  Glad I will see their top Dr. on Tuesday.  I have been dealing with this since end of May. 

     What scares me is that two years ago I had a hard lump which was aspirated and determined to be B9.  I can still feel this pea size bump under my right nipple around the 6 o'clock position.  Why I didn't insist on having it removed entirely is beyond me. 

    I am certainly preparing for cancer ladies.  Hopefully not outside the breast.

  • lisakaren
    lisakaren Member Posts: 3
    edited July 2008

    How does it look now?  Are you happy keeping the nipple?  Did you have reconstruction - saline or silicone?  Thanks in advance for your help.  I am having the mastectomy next week.  What about sentinel node biopsy?  Thanks.

  • lisakaren
    lisakaren Member Posts: 3
    edited July 2008

    Sorry.  I realized that I posted a reply to an older post.  This is my first time. Having mastectomy next week.  Trying to decide whether to keep nipple and do sentinel node biopsy.  It is prophylactic due to LCIS.  Had other side mastectomy 4 years ago.  Wish I was brave enough to have done both sides then, but at least doing this now to move forward in life. Any help on these 2 questions would be great:  nipple sparing?  sentinal node biopsy if prophylactic?

  • 41yrpeachgal
    41yrpeachgal Member Posts: 13
    edited July 2008

    I am having a bilateral prophy/not prophy mastectomy in August with sentinel node and reconstruction.  Not sparing nipples.  4 high risk lessions were found to include Radial Scars and an Atypical Lobular Carcinoma. 

    Best of luck.

    Christine

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