decision time coming up.

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  • twogirls
    twogirls Member Posts: 126
    edited November 2007

    Thanks Alaina,  I met with a PS that didn't want to show me photos, so I'm not going back there.  She also said she didn't understand why the skin sparing mast was even done.  Another red flag!  I'm glad I asked the question here! Take care!

  • Kathy_K
    Kathy_K Member Posts: 772
    edited November 2007

    Carol - who are your surgeons?  I went to Santa Clara, too.  I had Dr. Stevenson as BS and Dr. Santoro for PS.

    Kathy 

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Lisa, thanks for your quick response; I can totally understand and applaud your decision.  My God, what a legacy. 

    I just don't know what all the initials mean yet.  I went onto the site you gave me and am going to ask my surgeon if anyone in the Kaiser system here does this surgery.  It sounds very good because of the lesser damage to the abs and quicker and easier recovery time.

    I know there's a lot of microsurgery involved with the flap too, so am not exactly clear on the difference.  There will be 3 surgeons involved in my surgery, which is kind of freaky.  Anyway, thank you so much for the info and I'll keep you all posted on the response.  Carol.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Hi Kathy...Nancy Bitar is my BS and Dr. James Orman is PS.; I love Nancy, and he seems very careful and is supposed to be good.....have you heard anything about either?

  • BethNY
    BethNY Member Posts: 2,710
    edited March 2008

    you can get info on SIEA, and other typeds of reconstruction here:

    http://www.breastreconstruction.org/Section2/AbdominalFreeFlaps.html

    Having a skin sparing mastectomy doeds make a huge difference with reconstruction.  If you're having immediate reconstruction there is no reason not to have a skin sparing mastectomy.

  • Eula
    Eula Member Posts: 8
    edited November 2007

    Hi all,

    I'm new to this chat.  I've had lumpectomy and post-op mammogram which reveals more DCIS than was originally seen.  I'm scheduled for mastectomy (left) on 11/19.  I'm 67 and met w/p.s. last week who explained the very involved procedures with any reconstruction.  I am struggling...think I don't want to go through 6 or so months of procedures to get a boob.  My tumor was stage 1 (I'm very blessed) but DCIS was confirmed w/lumpectomy.  Has anyone reading this elected to NOT have reconstruction?  How have you made out with the prostehsis/clothing available today?  Thanks for your input. 

    Good luck to you all.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Hi eula, from what I understand, the decision is all about what you can live with and what you can't.  I didn't want to look at 1 good breast and 1 flat scarred chest.  Altho, when

    this is all over, I'll probably still be looking at a FAKE, scarred breast as well as a big scar on the belly.....(altho I won't see that because I don't have a full length mirror in the house.)This whole experience is really awful, ladies.  Trying to do the best thing; trying to trust your doctors; trying to do the least damage to your body whole as possible; trying to bloody stay alive.  I really get very angry about the whole thing.  (I was going to swear but I don't think you can on this web site.) Even if its just a little tiny spot of cancer, we still go thru the whole thing...all the fear, all the doctors, all the decisions.  If someone had told me 2 months ago I would be having a mastecomy next month due to cancer, I absolutely would not have believed them because I feel as healthy as I ever have in my life.  Go figure.  Life is a journey.

      

  • Eula
    Eula Member Posts: 8
    edited November 2007

    Hymsie,

    Thanks for responding.  It definitely is a journey..dealing with this stuff.  I've enjoyed a very healthy life, in general, and do feel blessed.  I suppose I can minimize potential problems now and decide later on reconsruction if I can't put up with the prosthesis issues.  Good luck to you.  You are younger and your opinions are certainly different from mine simply because of our age difference.  I will be  praying for you.  Good luck! 

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2007

    I cut my head off because I had a headache...a big SOUL-SUCKING MONSTER HEADACHE.

    Yes.  I think it is possible that a person WOULD take an axe and cut their head off in the "right" circumstances.

    I think that some very well-educated, well-disciplined people would be shocked out of their drawers by what they would ACTUALLY do when grim reality invades their otherwise well-ordered existences.

    (Not kidding)

    This is a very personal decision. 

    For certain high risk women...well, some of us have "cut off our heads because we have a headache."  (Bi-lateral mastectomies.)

    (Now, it's just "phantom pain"...HA!)

    ---------------

    Many women opt for conservation.  That is a perfectly logical, rational response to a breast cancer diagnosis.

    Many women opt for extensive surgery.  That is a perfectly logical, rational response to a breast cancer diagnosis.

    There are advantages and disadvantages to each option.

    This is not a "one size fits all" sort of a problem.

    You need to seriously think about what you can tolerate...find your "least worst" option.

    I made the only "choice" that I could live with.

    My only regret is that I had to choose (translates to I would prefer not to have breast cancer) and I am sorry that you also have to choose.

    Tammy Lou

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2007

    Miss Eula,

    There are many women on this board who choose not to be reconstructed.  (I'm not one of them, but) I was breastless for two years.  There are many prosthetics available and pocketed bras that can make you look very nice in your clothes.  Many ladies do that.

    My (personal) chest did not look "horrible" without breasts...more like a little boy (10 year old).  Some people look better than others.  A common complaint is that being breastless makes your stomach look "fatter."

    http://i41.photobucket.com/albums/e284/i5am5ladyt/Trimmingcutoutwave.jpg

    http://i41.photobucket.com/albums/e284/i5am5ladyt/stripes.jpg

    I really, really wanted to be reconstructed, but the cancer treatment needed to come first.  Then, I had some trouble being reconstructed...so, I had to try, try again.

    I'm sort of "sporty" and I was not comfortable without breast mounds.  I spend most of my time "flat" (no prosthetics).  I am very happy that I reconstructed...it was the right thing for ME.

    What it IS for me (being without breasts) is "inconvenient"...(strapping on boobs is not my style)...how you will feel about being breastless is hard for me to predict.

    One thing that is true = you can always reconstruct later if you decide not to do it right now.

    From the way you talk, you are old enough to be my mother.  Whatever your age, if you desire reconstruction...you are not too old! :)  If you decide you are more comfortable with prosthetics...there are alot of choices (including foam = for hot weather).

    Tammy Lou

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2007

    Hymsie...

    These pictures were taken 28 days after my reconstruction surgery.

    http://i41.photobucket.com/albums/e284/i5am5ladyt/28Oct20071.jpg

    http://i41.photobucket.com/albums/e284/i5am5ladyt/28Oct20072.jpg

    I think that these are "typical" fresh out of surgery pictures.

    Tammy Lou

  • TammyLou
    TammyLou Member Posts: 740
    edited November 2007

    There are some better "before" and "after" pictures at

    http://www.breastreconstruction.org/PersonalStories.html

    I'm not "done" yet.

    Tammy Lou

  • Kathy_K
    Kathy_K Member Posts: 772
    edited November 2007

    Carol, did you do a consult with Dr. Duran?  I have not heard of your doctors.  There is a doctor in the Oakland Kaiser that does DIEP.  All the PS at Santa Clara facility do free trams and maybe DIEP.  Didn't actually get a clear answer to that in January.  Dr. Santoro does do the one-step implant procedure, though.  I've had one of each!

    I meet with one of the oncologists there tomorrow.  Should be fun!

    Kathy 

  • Nett804
    Nett804 Member Posts: 12
    edited November 2007

    Good Morning.  I go to see my PS tomorrow afternoon and I'm a little nervous which is surprising to me.  I'm a pretty strong person and went through Chemo like a champ.  I have made the decision not to have my reconstruction done at the same time of my Mastectomony.  I'll wait until after my radiation.

    I am preparing my list of questions now so I'll have them ready.  One thought keeps running through my mind and that is "Should I have both breast done now (double Mast)?  This way I can have both reconstructed and be done with worrying about reoccurance.

    This is so confusing.  All opinions are welcome and needed.

    Thanks

    Annette
    Dx 1/20/2007, LCIS, 5cm, Stage IIIa, 6/9 nodes, ER+/PR+, HER2-

  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    Hi Annette, I cannot help with the bilat decision, your heart will have to guide you.  You docs can help with projections about recurrance too.

    I will say that even with a bilat, no surgeon can ever get all our breast tissue removed during any surgery.  It's just not possible.  So, recurrance can occur, but you would lessen your chances.  We who have unilat.  can get recurrences in our suture lines even.

    Just a thought to add to your list of "what ??".  Sorry.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Eula honey, I'm only a year, if that, younger than you are so we are sisters in this journey.  That being said..... for some of the reconstructions, the results are better if they are done at the same time as the mastectomy.  But I don't think in the final analysis, it makes much of a difference.  A little more scarring here or there.  If it takes you a little longer to think it out, or decide the best course for you....take the time.  I've heard of some women who live with the mastecomy for awhile and realize they are fine with it.  Other women, want a breast.  Its an amazing and interesting journey, like I said.  Very individual.  Really, no one can know what is best for you.  Sit with it for awhile, do some research, talk to other women (amazing how many have either been thru it themselves or have a sister, mother, best friend....etc.)  I decided I wanted to have a natural breast, to feel as normal as possible so am willing to go thru all the pain and inconvenience for, what I consider a short while, to get it.  My daughters friends said (age 40's), " why does your mom want to deal with all this at "her age".....Why? I thought about it overnight and having dinner with my daughter and her husband tonight at a very nice restaurant on the river with a tank top on, no bra, ....because...." I just want to feel like I always have.....normal.....2 breasts,......my own skin......so I will suffer for some weeks to get that.....maybe some months.....but I feel like I have years left to live and I want to feel like I do now.  But that's just me.  Blessings to you.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Kathy, after your's and other comments, I called my Kaiser breast cancer coordinator today and also my p.s.  Esther, my coordinator, said she thought the p.s.'s here tried to do whatever was possible to spare ab's and skin.  However, i have pretty small breasts and the damage may have been done with the first lumpectomy.  I have an appt. with my "very busy" p.s. to discuss my own personal boobs and what, if he has any clue, they will look like when they are done.  As I think I said, I'm 67 yr. old.  So what the final outcome will be is anybodies guess.  My skin and body are in pretty good shape so we will see.  The photo's I've seen in the last few minutes have been very encouraging.  I think things are going to be o.k.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Tammy Lou honey....thanks for your photos...I think you look pretty darn good for so soon after surgery and no doubt a year from now you will look as beautiful as you ever did.   I don't think I'll post my photos on this site.  For one,  because I don't know how to technically post photos and for two because I don't look near as cute as the rest of you and I'm very conscious of of being 66 yrs. old with a shape of 40, 40, 40.  ...or whatever.  blessings to you all.  You are all so dear.  Carol

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Kathy K.....my b.c. coordinator said the 3 micro. plastic surgeons here all try to do all the skin saving, ab saving surgery they can.  She said they are all very good.....they even do micro surgery on the hands.  The Microscope surgery is amamzing.  We will see.....I'm sure each patient presents different challenges and a lot of it they don't know until they get in there......good luck honey.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Kathy K....Nancy Bitar is the surgeon.  Esther Duran is the breast cancer coordinator.  She is kind of always there to answer questions and is a nurse.  Nancy was referred by several nurses and staff from out of the area as the best.  She's really quite wonderful.  However, my breast doesn't look too good.  I think because the cancer was right at the nipple and it was pretty hard to get it out without disfiguring the breast.  Also, digging for lymph nodes didn't help.  Also I'm about a b cup so not a lot of tissue. The whole thing sucks.

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Annette.....IT IS all very confusing and its important that you get as informed as you can.  I think its harder to get a good looking fake breast after radiation and why do you have to have radiation if you are having a mastecomy?   I guess maybe because the cancer has gone into lymph nodes or something? 

    Also, regards getting both breasts removed (or whacked off)....I thought of that too.  But the option I have chosen, as of this hour, is to have the tram flap surgery (or some variation thereof DIEP SEIP ETC.) which is using your own tissue from the abdominal area and the surgery for both breasts in this procedure, at this posting is about 12 to 14 hrs. and really compromising the abs and since I'm a pretty active women and one of my breasts is fine, anyway, it was all too much and I decided to only do one and now that seems like a lot. Anyway, I have another appt. with the ps. on Thurs.  At some point we have to trust the drs. to want the same thing we do.....which is to look as normal as possible when its all over with the least amount of pain and suffering......

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Well, all, my surgery is officially scheduled for 12.17.07 and since its a tram flap with 5 days of hospital time it pretty well kills Christmas this year.   And after all my brave talk, I feel pretty darned nervous about the whole thing and whether I should just do a saline implant and take my chances that it will be o.k. 

    I just been informed it can harden up, I could lose it some way or other, I would need another one after awhile, etc.  Do any of you have any long term experience with Saline implants?  Hymsie aka Carol

  • iodine
    iodine Member Posts: 4,289
    edited November 2007

    I've had my for a couple of years.  But think about all the women who have had breast augmentation!  My hairdresser has had hers for 20 years and no sign of replacing them.

    Can you have complications?  Yes , you can and some do.  I had some and got past them.  Lots and lots of women Don't.

    Just because they have a certain years of warrenty, doesn't mean they will need to be replaced in 10 years or what ever. 

    They have wonderful implants now and they are super.  Try and relieve your mind on this point.

  • Kathy_K
    Kathy_K Member Posts: 772
    edited November 2007

    Yeah, the Santa Clara Kaiser ps's, Santoro, Eggelton, and, ah, can't remember his name, starts with an 'M', all are good with micro-surgery which is what you need with trams.  Did Esther Duran show you her reconstructed breast?

    I had some healing problems with my unilateral free tram but finally got past it.  Then they found ILC on the other side and so now I have a silicone implant in there.  Dr. Santoro did the one-step implant procedure on me in Sept. That was a much easier recovery.  Felt quite well by 3 weeks as opposed to the 7-8 weeks with the tram.  Took a long time for my stamina to return.  I'm 55.  

    I, too, have a friend who has had 2 silicone implants for 19+ years without any problems.   

  • hymsie
    hymsie Member Posts: 31
    edited November 2007

    Hi Kathy....there will be 3 surgeons....two p.s.'s and my dr. bitar to do the mastecomy.  I think Santoro is one of them, but I haven't talked to him.  Thanks for your input.  I don't think there's any way of knowing how a person is going to heal, really.

    I guess when its all said and done, I just wanted my own body tissue used if it were possible.  I know its going to be much harder, but I figure if I can get thru rotator cuff surgery which was a total nightmare, I can get thru this o.k.  I'm just really grateful Kaiser will do whatever I want and that the cancer was caught so early. Talk to you later and Happy Thanksgiving everyone! 

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