Why is it so hard for some to accept a choice not to recon?

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  • Denise2730
    Denise2730 Member Posts: 648
    edited January 2012

    CLC you almost made me cry thinking about our poor breasts and the searing pain. I never thought of them that way.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    Barbiecorn-The wait for my BMX surgery seemed like forever. When I was tranferred to my hospital room after surgery, I started to cry. The nurse tried to be supportive-but just didn't get it. I was crying because it was finally OVER! Not that I missed my breasts & yes I could do recon blah blah blah.... It was my scariest surgery so far, but no regrets.

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited January 2012

    Hi there, I had a unilateral mastectomy over ten years ago...I have worn a prothesis for that many years and it amazes me that most everyone I know hardly even remembers that I have one... and my putting on a mastectomy bra everyday has become so automatic that half the time I have forgotten it also...now the side effects of the treatments are a different matter entirely...those are with me all the time...

  • SheChirple
    SheChirple Member Posts: 954
    edited January 2012

    You know what, on the opposite end is the doctor or other medical professionals who think a bilateral mastectomy for one small tumor is overkill.  "Why would you want to rip off both breasts when all you have is one small lump.  Try a lumpectomy".  uh,....I'm not attached to my breasts.  I had 4 kids, they served their purpose.  Take 'em off.  I'm okay with it, really.

    Now, I chose recon, but that's me.  I totally respect those who choose not to have recon.  No one has a right to question your decision.

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Barbiecorn, it IS scary to have to go through surgery, to have cancer and so on. You are not a freak. Most people also assumed I would have recon, like you I chose not to do it, for now at least. I figure that I can always have it done later, if I change my mind. 

    I have a feeling people say those things to make us feel better. The idea being that it won't be such a big deal if you get new boobs or some such. In other words, they mean well.

    My BMX was 4 months ago. So far I really don't miss the boobs and I am just glad to have it over with. The suckers tried to kill me, so good riddance as far as I am concerned. I am so thankful that it was just boobs and not an arm or leg. Being boob-less does not mess with my daily life in any way. 

  • Linda1966
    Linda1966 Member Posts: 633
    edited January 2012

    For anyone worried about dressing so that the lack of cleavage isnt noticeable. There are some gorgeous bra's available to fit our prosthetics which look like a camisole up top. I wear one when Im dressing up for an occasion or when I have a lower cut shirt to wear and am worried about gaping. I havent gone swimming in the 3 years since my umx but i dont see why I couldnt fit the aqua prosthetic into a camisole bra and then don a swimsuit. Im sure I'd look just like any other 45 year old at the pool or beach.

  • Cats134
    Cats134 Member Posts: 131
    edited January 2012

    I had my PBMX on 12/19.  I 'knew' from the get go that I didn't want recon, but I did meet with a PS to discuss the options available to me.  Everything sounded so scary or prolonged that my meeting with him just confirmed my intution not to have recon.

    However, I wish I had spoken up with my BS about how my scars would look.  They are hideous.  Very long, uneven, bumpy.  I was shocked the first time I looked in a mirror.  I think I expected these half moon shaped incisions.  Adding to it is that since I'm allergic to steri strips, my incisions have a layer of derma bond all over them, which is holding in the dried blood and blue ink, I look like Frankenstein's bride.  Frown

    I feel that since I wasn't interested in recon, my BS feels that I don't care what my chest looks like.  I wish I had a PS do the closing.

    Cats

  • Starak
    Starak Member Posts: 536
    edited January 2012

    Cats: I have wondered many times before if you are onto something - that if you don't recon, that they don't care or dare I say or even think they feel the need to punish???

    There can be no excuse for the horrific mess that some women are left with.  Not me, I was lucky  - except for the center dog ears, mine may be very long but are otherwise about as perfect as I could ask for.  Maybe they think they can force you into recon if they leave a big enough mess??? 

    Cats:  I have a suggestion, may be worthless, but at least a thought.  When I had my center Mutant dog ears removed, there was initially some bump left.  The PS had me wear a silicone pad that was about 1/4" thick along with compression bandaging. Notice the pad is much thicker than what you normally see with silicone scar bandages.  It actually reminded me of memory foam.  I expect you would have to get one from a surgeon, probably a PS.  It really improved the appearance of the scars, even my old ones from the original BMX, and best of all flattened it all right out.  I was told I would wear it at least 6 weeks.  Mine only required 7 weeks.  Won't help the length or placement but could make a dramatic difference in the bumpiness.  I was really amazed at mine.  And if it were me I would go to a PS and not the BS.  Again just a thought.

    Barbara

  • apple
    apple Member Posts: 7,799
    edited January 2012

    personally i would NEVER reconstruct.  wondering if the 'tissue' or whatever they put in there would hide future cancerous growths.  shudder.

  • CLC
    CLC Member Posts: 1,531
    edited January 2012

    I did discuss how my scar would look with my bs before the surgery.  I brought in a picture of a woman with a bmx and asked how mine would compare.  He was defensive, clearly offended that I'd asked and I wondered if he was annoyed that I'd picked a picture of a woman that was topless and laughing.  She dared to be happy.  Flat and happy. 

    I have been debating changing bs, but he is really good at what he does and I need to be watched for the other side and I think he knows exactly what he is doing.  But really, I have wondered if he could've made my scar a little better than it is (it is bumpy, but I am not too upset with it...I think it is pretty good), but was taking a little out on me for my presumptuous belief that women without breasts can be happy.

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Lyndal, your comment about looking like any other 45yo at the beach made me chuckle. I am sure you are right. That said, I have not been in a swimsuit more than 2-3 times since dd was born... 19 years ago, lol. 

    Cats, don't despair yet. I too looked frankensteinish in the beginning, but once everything healed it looked a lot better.  

  • duffy11
    duffy11 Member Posts: 25
    edited January 2012

    I will agree the comments people throw at you are outrageous.  From people you think you know well too!  I had my BMX 2 weeks ago, and while I don't think I was prepared for what it looked like after and did go through the feeling sad, feeling like my chest looked like a lumpy alien potato field, I would not have changed a thing. 

  • crystalphm
    crystalphm Member Posts: 1,138
    edited January 2012

    Interesting because in my life my doctor never mentioned reconstruction, and when I brought it up he responded "I think you will be happy without getting all of that done". My Mom flips out when I mention it...and so does more of my family. My sister gets upset even when i wear my foobs, well, in all fairness, she knows they hurt me and she wants me comfortable...

    But often I think I would like someone to say "Whatever you want ..." and just be supportive without telling me what to do.

    So maybe that is what most of us want, no one telling us what to do....

  • msphil
    msphil Member Posts: 1,536
    edited January 2012

    hello all, I did opt for reconstruction for I thought it would be right cause I was in the process of getting married, making wedding plans, but to my surprise my body rejected the foreign object(expander) and it hardened and had to be removed because of high fever and infection, I have worneda prothesis since and am so pleased with it and wish I had never went for the reconstruc after all. God Bless us ALL.   msphil(idc,stage 2, L mast, chemo rads and 5 yrs on Tamoxifen and (Praise the LORD) 18 yrs cancer free.

  • Aerial
    Aerial Member Posts: 194
    edited January 2012

    Cats134--I had a unilateral mastectomy in June and my experience was similar to yours.  I'm allergic to steri strips, too.   So, in addition to a lot of swelling, I was red, itchy, with skin peeling and a drain that needed to stay attached for 19 days. It looked awful.  (Geez, I hated that drain).  I had to have a couple of needle drainages performed by my breast surgeon after the (attached) drain was finally removed, as well. 

    I think it was about five or six weeks before my scar started to look like a "normal" scar.  Now, it's a long straight line (not bumpy anymore). I don't have any pain--mostly feel numb-ish. I have a very subtle "dog ear" (fold line) near my breast bone.  My husband, sister and the girl friends say it looks good (for a scar). 

    As soon as I was cleared to get a silicone prosthesis, I bought one!  I got the proper bras, of course, and a swimsuit tank top (with a pocket for the prosthesis). I went swimming the next day and felt okay but, finally decided to buy a  mastectomy swim top that had a higher neckline.  I'm a C cup on the left side and have not felt "out of balance" with or without my prosthesis. 

    I'm glad reconstruction is a possibility for those who want it.  I am not one to seek any extra surgery, though.  I hate needles, drains and I'm just not willing to go in for more pain.  My breast surgeon is female--she didn't pressure me and none of my friends or family questioned my decision.  I'm very happy with the choice I made!

    I think the waiting is the worst--waiting for news, test results, prognosis, diagnosis, surgery, etc. etc. ....to all of you still in the waiting stage I'll be thinking of you in the days and months to come.  ((((((Hugs))))) 

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    My BS did not pressure me one way or another. My 2  diagonal BMX scars look about as good as one could expect. They barely extend into my armpits & aren't quite symetrical but close. Oh.....the swimsuit thing. I swim laps & sometimes do a masters workout. I wear a competitive style suit( it's made by Nike). Couldn't look flatter, but these suits are actually more comfotable without breasts. I have to say that during these workouts, BC never enters my mind. Nobody notices either. I haven't reallly looked into foobs except to once visit a website that had mastectomy bras & I couldn't see myself wearing one. 

  • flash
    flash Member Posts: 1,685
    edited January 2012

    I am a uniboober and not afraid to go without a prosthesis and just be lopsided.  Why not?  Why do I need to be uncomfortable with a prosthesesis so that others can feel good??  Life is too short. I'm lucky to be here and I'm going to enjoy every day.

  • kmpod
    kmpod Member Posts: 234
    edited January 2012

    I had my bilateral mastectomies done in two stages; and that has led to a rather interesting situation.

    My general surgeon is a female, probably in her mid forties, who does a lot of breast surgery. I was very up front right from the start about not wanting reconstruction but I think that she thought that I would likely to change my mind down the road. She did skin sparing surgery on the right side and I was left with a dog ear in the centre of my chest and rather loose folds of skin. I think of it as my bassett hound side.

    I subsequently developed a seroma and had to see her frequently for aspiration. Over the course of those visits she got to know me better, and realized that I really did NOT plan to reconstruct. When I had the left "prophylactic" mastectomy two months later she really did a nice tight job - no dog ears, no folds of skin, nice flat incision. It's really what I wanted the first time.

    Once again I'm dealing with a seroma so my visits with her have turned into a regular thing and we've really come to like one another. She brought up the option of scar revision herself and spontaneously apologized for the appearance of my right side. 

    What I've come to realize is that surgeons (at least general surgeons) really don't get to know their patients all that well in the normal course of things. It's not that common for them to see their patients regularly over a period of time. They usually do their part of the job and hand you over to the oncology group to carry on with treatment ASAP. Add to that the fact that you're in huge emotional turmoil at the time you first meet them and it becomes more understandable that they find it hard to take your personal measure with any accuracy.

    I think that I've really been a positive learning experience for her.

    As for scar revision, I'm not decided yet. Cosmetics aren't a priority at this point and I'm not sure they'll ever become enough of one for me to consider surgery again.

  • jg10
    jg10 Member Posts: 52
    edited January 2012

    good for you for standing uo for what you believe! I did reconstruct, but I would have saved myself a lot of hassle if i had not. You have less risk of infections, pain, and potentially less surgeries in the long run.

  • Starak
    Starak Member Posts: 536
    edited January 2012

    Crystal:  It is one thing if your doctor and family are just making sure you have all the facts to consider or to let you know that it is not necessary for you to recon for them to love you.  I have seen it said of a number of husbands that they really would have preferred their wives didn't incur all the risks and pain of reconstruction but were fully prepared to support the final decision whatever it turned out to be. 

    You are absolutely right, at the end of the day, this is for you to weigh all your options and medical considerations and then make the decision you believe in your heart is best for you.  I would hope your family will support you in that decision no matter what it turns out to be.  I know I do.

    Barbara

  • CharB22
    CharB22 Member Posts: 310
    edited January 2012

    I'm in the midst of deciding about a prophylactic double mastectomy. I was diagnosed on 12/1 and had a lumpectomy on 12/9. At that time, I didn't know that DMBX was an option. My BS said, "we're going to do a lumpectomy and SNB, chemo & radiation." The end. Turns out I'm triple negative so I have a greater risk of it coming back with a vengence. I had the BRCA test and I'm negative. I cried when I got the news - not tears of joy, but of sadness -- if I was positive the boobs would definitely come off.

    Anyway...when I told BS that if they came off, there would be NO recon, he said to me, "well, you're young..." Yes, that's the point. I AM young. I don't want more surgeries, fake stuff in my chest, more anesthesia, more time off work, etc. I have 2 teen/tween boys and I want to be back to my old self again...quickly!! I also want them to see that a woman is more than boobs. I'm just really annoyed that BS (who is an older gentleman and a cancer survivor) would say that. He thinks I should see a PS first. Ugh.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2012

    I am agonizing over the recon decision. All roads point to no recon, but then something whispers in my ear late at night when I am tired and says "Don't you think this is a little extreme - you don't have cancer" and in the morning I tell the voice, "Yeah I don't have it YET!  THATS THE POINT! "

    I meet with the PS and BS next week, and then we should be off to the races. I figure I can always do recon later if I am woefully unhappy and can't move on. My main concern right now is having good looking scars! Smile

  • alexandria58
    alexandria58 Member Posts: 1,588
    edited January 2012

    I had a BMX last April.  I go flat - and I love it.  I find it incredibly freeing not to have to wear bras.  My only regret is the SNB, which continue to give me problems.

  • greenfrog
    greenfrog Member Posts: 269
    edited January 2012

    Why is is hard for people to accept a choice not to reconstruct?

    Because the west is obsessed with breasts. They have been fetishized to the point of madness. Healthy, beautiful young women are having their breasts slashed open and implants sewn in them in pursuit of someone' s idea of "beauty". It is totally screwed up.

    My bilateral mx is beginning to feel more and more like a political statement. I refuse to be bullied into doing what this silly, appearance-obsessed society thinks I should.

  • CLC
    CLC Member Posts: 1,531
    edited January 2012

    Greenfrog...I concur, thoroughly.

  • Kyta
    Kyta Member Posts: 713
    edited January 2012

    I totally respect the decision of those who have opted for no reconstruction. It's a very personal decision and one that only you can make. Uni MX makes it a bit more complicated because it's uneven. Some uni's don't mind being uneven or wearing a prosthesis. It wasn't my cup of tea….the prosthesis really annoyed me... and I eventually opted for TEs/implants….but that's just my situation.

    CLC - the decisions are all yours. If you don't have a Dr. that supports your decision, you should change Drs. 

  • CLC
    CLC Member Posts: 1,531
    edited January 2012

    Mich_M...I completely understand the uni mx complications...it is taking me a while to adjust to the prosthetic...and I can fully understand why you or any woman would choose recon after mx...bmx or umx.

    I think that greenfrog's point is very apt, however...  I am very glad that recon is available to women who want it.  I know several bc survivors that had recon and are very happy with it.  I am so glad that the doctors can do this for them.  However, those same women, as well as my doc, seem to be unable to understand that I am just as happy with my choice.  I think that greenfrog's point speaks to the fact that our culture seems so unable to understand that we can still be whole and complete women even without breasts.  Then the decision to not reconstruct becomes a profound political statement...made whether we wanted to make a political stand or simply just didn't want the surgery...

    As for changing docs...I have been debating it.  But my current bs knows his stuff...medically...better than any other in the area...so I will keep debating, I guess...

  • Starak
    Starak Member Posts: 536
    edited January 2012

    For some of us symmetry is an overriding concern.  Once the decision is made to take one for some of us, it is no brainer to insist on taking both.  The Uni option in my mind was totally off the table.  It is why only we can make these decisions and not have them made for us no matter how well meaning.

    Barbara

  • swb1020
    swb1020 Member Posts: 7
    edited February 2012

    I had BMX and reconstruction (Diep Flap). The period of time that I had no foobs was pretty nice. Sometimes I wish I hadn't had recon. I had my reasons at the time, but I think that they're not so important anymore. Plus, my foobs are bigger than I wanted them and I don't have the money for another surgery. Listen to me complain. Sorry. I'm happy that they caught it early, that I had health care, insurance (at the time), great docs and nurses and great family and friends to support me.

  • cp418
    cp418 Member Posts: 7,079
    edited February 2012

    Greenfrog --- standing applause!!  It really is about free right to choose.......

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