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Conference turris::womannotes-v2

Title:ARCHIVE-- Topics of Interest to Women, Volume 2 --ARCHIVE
Notice:V2 is closed. TURRIS::WOMANNOTES-V5 is open.
Moderator:REGENT::BROOMHEAD
Created:Thu Jan 30 1986
Last Modified:Fri Jun 30 1995
Last Successful Update:Fri Jun 06 1997
Number of topics:1105
Total number of notes:36379

846.0. "Experiences with mastectomy/implants?" by LEZAH::BOBBITT (invictus maneo) Thu Oct 26 1989 15:45

    This is being posted anonymously for a member in our community.
    If you would prefer to respond by electronic mail, please send your
    response to me and I'll forward it to her.
    
    -Jody
    
    ----------------------------------------------------------------
    
    I was wondering if there is anyone out there that has had a mastectomy
    and then breast implants who could tell me what it was/is like. 

    I have a very severe case of fibrocystic breast disease and have not
    responded to the 2 medications they use to treat it.  I've been in
    severe pain for the past 7 months.  The only option left is surgery.
    They will either do a partial or full breast removal and then put in
    implants. 

    I should probably add that I am only 25 years old. 

    Thank you in advance. 
T.RTitleUserPersonal
Name
DateLines
846.1MOSAIC::TARBETSama budu polevat'Thu Oct 26 1989 17:1311
    I've had no experience of it, but I have read some of the literature. 
    The consensus seems to be "don't".  The implants have many unwelcome
    side effects associated with their use.
    
    Might I suggest you consult a specialist such as Susan Love before
    doing anything so drastic as permitting amputation?  As far as I know,
    she is *very* well respected as a surgeon and breast specialist.  An
    interview with her appeared recently in "Sojourner", and I'm quite sure
    someone else can tell you how to make contact with her.
    
    						=maggie
846.2CSC32::K_STRANDThu Oct 26 1989 21:567
    my mother and i both had the same problem you have. 
    you may have heard about this treatment before but we were told by 2 diff.
    doctors to stay away from caffiene (there's a lot of hidden caffiene
    in OTC drugs, etc.) and take vitamin e. i was very skeptical 
    about *vitamin therapy* but it worked 100%.
    good luck
    kate
846.3me tooWLDWST::DERICKSONSat Oct 28 1989 13:1914
    I have the same problem myself.  From what I was told it's very
    common.  You are a bit younger than I was when I found out.
    
    As with reply .2, I was told no caffeine.  That includes chocolate,
    any of the sodas that have caffeine and of course coffee and tea.
    The Dr. suggested that I break open the vitamin E capsules and rub
    the oil on directly.  (my husband was VERY helpful)
    
    The pain decreased and now only gets really bad just before my 
    periods.  It took about a year for that to happen.
    
    Donna
    
    
846.4article/letter from sojournerLYRIC::QUIRIYChristineSat Oct 28 1989 18:35137
    I have no experience with this, but saw the following article and
    decided to type it in.
    
    From the November edition of Sojourner, Viewpoints section, a 
    letter from Esther Rome, commenting on an interview with Dr. Love,
    which was evidently printed in the October issue of Soj.  (I don't
    have the October issue.)


    Are Breast Implants Really Safe?  by Esther Rome

    I am representing the Boston Women's Health Book Collective at a 
    U.S. Food and Drug Administration task force to write booklets for
    distribution to women who are planning to have silicone breast 
    implants.  Implants are used to make breast larger (augmentation) 
    or to create a breast-like shape after mastectomy (reconstruction).
    (There are other methods of reconstruction that involve moving 
    various muscles to the chest area.  Each has advantages and 
    disadvantages, but that discussion is beyond the scope of this 
    article.)  Among other information, task force members have 
    received a rather hair-raising summary of the literature prepared 
    by the FDA scientific staff.  As a result of my recent research I 
    believe that some of Susan Love's information, in the October issue
    of Sojourner is misleading.
    
    Although I certainly support Dr. Love's assertion that doctors 
    should not tell their clients what to do, it is equally important 
    to note that a woman cannot make an informed decision without 
    sufficient information.  Her interview gives an incomplete story on
    the safety of silicone implants.
    
    First of all, it is difficult to assert that silicone implants are 
    safe.  The studies, mostly sponsored by the manufacturers, are 
    often poorly done.  One reliable source indicated to me that Dow 
    Corning does this deliberately so that if the study shows problems 
    with the silicone it can then be discounted.  In spite of the 
    methodological criticisms of the studies, there are enough problems
    cited with implants to require further studies.
    
    It is difficult for researchers to study long-term consequences of 
    silicone implants because there is no registry of silicone implant 
    users.  Plastic surgeons often do not encourage long-term 
    follow-up or make a point of trying to trace their previous 
    clients.  In addition, insurance has only recently started to cover
    the costs of reconstruction, and so there are not many women who 
    have had reconstruction for more than 10 years.

    Dr. Love rejects the notion that silicone could cause cancer 
    because breast cancer incidence has not risen.  (It has risen 
    somewhat recently, according to incidence reports in the past year.
    But this is irrelevant in discussing a particular subgroup of women
    since the incidence in one group could be rising while in another 
    it could be falling.  Secondly, silicone implants (not injections) 
    have been around only a little more than twenty years, so a rise in
    cancer incidence might only be beginning to show now.  
    (Incidentally, a figure of 20 million implants must be a typo.  The
    Plastic Surgeon's Professional Society estimates that 2 million 
    women since the early 1960s have had implants.)  Thirdly, it is 
    possible that silicone would tend to stimulate cancers in other 
    parts of the body besides the breast.  We simply do not know enough
    to say one way or the other if silicone implants increase cancer in
    humans.

    There is strong suspicion that the polyurethane-coated implants do 
    promote cancer.  To reduce capsular contracture -- the shrinking 
    and hardening of scar tissue that forms around a foreign body -- 
    the polyurethane is designed to flake off the surface of the 
    implant in a number of months.  One of the breakdown products, if
    the polyurethane degrades, is a substance that was used in nail 
    polish and was banned because it is carcinogenic.  Careful 
    follow-up of the cancer incidence of women with implants is needed.

    Dr. Love discounts the cancer risk from  silicone but does not 
    address any of the other possible problems that can occur.  The 
    most common is capsular contracture.  The FDA estimates that the 
    incidence is around 25 percent although various studies find the 
    incidence anywhere from 0 to 70 percent.  This condition can become
    painful and sometimes disfiguring, requiring further surgery.  
    Another reason for repeated surgery with implants is that they may 
    not end up in the right place once healing takes place.  A recent 
    package implant from Dow Corning specifically warns against using 
    the product with women who are not willing to undergo further 
    surgery.

    No one will vouch for the longevity of the rubberlike silicone 
    container that encloses the silicone gel.  It can break, sometimes 
    spontaneously and sometimes after severe external compression.  If 
    the implant breaks, the situation isn't really that much different 
    from that if the silicone had been injected.  The loose silicone
    creates such a health risk that, as Dr. Love notes, the FDA made 
    injecting it illegal.  It is imperative that an operation be 
    performed to get the silicone out as soon as possible.  It is 
    unlikely that all of the silicone can be removed.

    If the container doesn't break, silicone gel still "bleeds" through
    the wall of the implants.  The wrapper cannot be impermeable to the
    gel inside.  No one knows how much comes through in actual use, 
    although seepage has been measured in the laboratory.  The 
    manufacturers claim that the silicone that seeps through stays in 
    the breast, but no can document this assertion.  Silicone has been 
    found in other parts of the body, sometimes years later.

    Silicone travels to other parts of the body through the circulatory
    and the lymphatic system and can cause lumps in other parts of the 
    body which cannot be distinguished from possible cancer except by 
    removing and examining them.  This can cause unnecessary surgery 
    and distress for someone who already may be worried about 
    recurrences of cancer.

    Silicone, previously thought to be inert, is not.  It attracts fat 
    and hormones such as progesterone and estrogen.  No one knows if 
    this has any significant biological effect.

    There are a number of studies, all with methodological problems, 
    that indicate that silicone implants may trigger autoimmune 
    problems, such as certain kinds of arthritis, scleroderma, or 
    lupus.  This is an area that needs further research, but women who 
    have a family history of these problems should be cautious.

    Dr. Love asserts that implants don't affect the usefulness of 
    mammography.  That is inaccurate, according to the American College
    of Radiology.  With the proper technique, a technician can get an 
    image of most of the breast, generally with twice as many 
    "pictures", and thus twice as much radiation.  Even though this is 
    relatively little radiation, it is twice as much as would be 
    necessary without implants.  Also, a small portion of the breast 
    still IS obscured by the implant.
    
    There are many questions and few answers about silicone and 
    silicone implants.  Even knowing this, many women will still choose
    to use them.  But it is unfair to women not to tell them that they 
    are taking part in an experiment.

    -------------------------------------------------------------------
    
    Esther Rome is co-author of The New Our Bodies, Ourselves.
846.5Nutritional therapy works for thisVINO::EVANSI'm baa-ackFri Nov 03 1989 10:4618
    I don't have personal experience, but I have a good friend who
    has fibrocystic disease. What I hear from her, and from the
    "women's health" community is 1)Get a second (3rd,4th - till you're
    comfortable) opinion about anything as radical as mastectomy
    2)Nutritional treatment helps this condition *greatly* - up to
    100% "cure". 
    
    I'm not an expert, but is seems to me that if (even) the medical
    community is thinking twice about mastectomy for *cancer*, then 
    mastectomy for fibrocystic disease is even more of a radical idea.
    
    There *are* experts around. Susan Love is one. I think Dr. Andrea
    Rescinitti in the Cumming building at Emerson hospital is good also.
    I think you owe it to yourself to see one of the experts and get a
    second (etc.) opinion if you haven't.
    
    --DE
    
846.6response....LYRIC::BOBBITTat night, the ice weasels come...Sun Nov 05 1989 12:4433
    Here is a response from the basenote author...
    
    -Jody
    
--------------------------------------------------------------------------    
    Hi, 

    I thought I add a few more comments about exactly what this has been
    like for me. 

    It's hard to explain the pain I've been having but it's pretty
    excruciating. Not a day in the last 5 months has been painless.  It
    appears that it is only getting worse.  I'm basically starting to
    break.  Chronic pain is doing a job on me in every
    aspect....psychologically, mentally and physically. 

    I realize that this kind of surgery is radical.  Especially, for my
    age. My doctor, though he is male, has been interested in FBD for quite
    some time.  I feel very comfortable with him.  I will be seeing a
    plastic surgeon in about a week at UMASS Medical Hospital for a
    consult.  That will be my second opinion as far as I'm concerned. 

    I'm not left with a lot of choices.  At least that's how I feel.  My
    doctor has given me every single treatment there is minus the surgery.
    I know that because of the research I've done. 

    I'm going out on short term disability shortly.  It's getting too hard
    to come into work and keep my job performance up.  I'll let you know
    how things turned out when I get back.  Hopefully, an end to this is in
    the near future. 

    Thanks for listening. 
846.7Warm ThoughtsHENRYY::HASLAM_BACreativity UnlimitedMon Nov 06 1989 21:474
    Whatever happens, I wish you the best.  I'll be thinking of you!
    
    Hugs and support,
    Barb