IMPLANTS REMOVED: YAY!

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  • mariajose7
    mariajose7 Member Posts: 12
    edited January 2015

    Hi, you have answered many questions I have had, thank you so much.

    I live in Spain and when given the diagnosis 10 years ago the doctor said "you have cancer, you need a radical mastectomy, and 6 months chemo..but if you want we can do reconstruction at the same time. So yes or no?"

    I didn't know what to say, and also how does one know what its like not to have the reconstruction?

    I hate it, it still hurts and is very uncomfortable. Lately it hurts more and I am a bit worried. Also there are staples inside that pinch and hurt. I am just worried about having another operation. What if the doctor makes it worse?

    Your comments have helped, has anyone else had removal after 10 years? I'm worried about the muscle use after. any comments would be appreciated. Thanks

  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    I appreciate this discussion and thankyou to Bettyboops and others who have shared. Had I not needed radiation I probably would have opted for reconstruction during the mastectomy surgery. My BS said no reconstruction. However, it has been very strongly encouraged by many (medical and family, friends) after I am done with chemo and radiation.

    Yet something inside of me is saying, no, no.

    The push from others to have reconstruction has been creating conflicting feelings within me. On top of struggling to accept my new body image.

    After reading this thread I realize that in a way I was fortunate that due to other medical needs we pushed the pause button on reconstruction.

    At this point in time I am 99% sure that I will not have reconstruction in the near term and 95% sure I won't down the road.

    My God Mother is a 30 plus year survivor. She had reconstruction and had a failed implant (it leaked). She had a second implant and it created pain and discomfort. She finally said take it out, I'm done.

  • Bettyboops
    Bettyboops Member Posts: 239
    edited January 2015

    hi doggie bytes,

    Listen to your inner voice! I did not and I regret it every day. I'm just glad I could have a do-over and have the implants removed. The thing that baffles me is how do well meaning relatives and friends know that you will be happier with reconstruction? How can well meaning docs push patients into recon to find true happiness? I think people want things to be like they were at any cost. They want you to be exactly the same at any cost. The cost can be your health and mental well being, although you will look the same- to everyone else but yourself. Your higher self, your inner voice knows what you want. Listen to it and don't get swayed by public opinion. I hope this helps! Let us know what you decide!

    Best,


  • Bettyboops
    Bettyboops Member Posts: 239
    edited January 2015

    hi mariajose,

    A good doc will take care of your muscle if you have implants removed. The body is very resilient. If they are bothering you then your body is trying to tell you something. It may be worth getting an evaluation to help you make a decision. I'm not sure how you find a good doctor in Spain but I would ask around at breast cancer centers or other breast cancer patients and find a doctorwho is very experienced and has an excellent reputation.

    Best,


  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    it baffles me too Bettyboops.

    I find this extends beyond physical appearance but also to mental and emotional states as well. I just finished my chemo last week Wednesday and the comments and way I'm being treated is as though I should have an "off" button. Chemo is done you should be just like you were before from one day to the next. I should switch from cancer patient to "all better now" and I still have radiation to go through, hormone therapy, plus working through the permanent changes this DX brought to my life.

    I will be joining a cancer support group to help cope with these pressures.

    Your posts are very insightful. Thank you.

  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    DoggieBytes:  I think everyone wants you to go back to "normal", so they can treat you as if nothing has happened. They no longer have to worry about your CANCER!!  Everything is ok now.   That's what they want, but it is not reality. And that is their problem.  You just take care of YOURSELF.   Finishing one course of treatment doesn't magically whisk all those emotions away.   If only !!    We are here for you to vent and rant!!  ((hugs))

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    This is slightly off topic, but someone may find it interesting.

    I had an interesting conversation with my Surgeon last week when I went for my 2 year checkup. I never had any desire to reconstruct and there was absolutely no pressure for me to do so, other than, from other women, one of whom, had the same Dx as me and who did, reconstruct.

    My surgeon moved to the area 4 years ago, after practicing in London and before that South Africa. Since being here, in Australia, he has done approx 200 Mx surgeries and of that 200 only 2 of those women, chose to reconstruct!

    I had no idea, it was such a small percentage here, but I belong to a support group and we have 23 members, of the members who had Mx, we have only 1 who reconstructed. Add to this, we also have a free health service, which includes recon should you want it.



  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    That is really interesting, M.    I wonder why,,,,  makes me wonder if it gets pushed more here in the States.

  • GrammyR
    GrammyR Member Posts: 702
    edited January 2015

    Ariom- I find that very interesting. Mine as done 8 years ago and I might add- not a very good result as I was very thin. I think on looking back I should not have gone for it. Insurance limits who you can go to in US so I had no options on surgeon , had to be same day , same hospital. Also if cancer returns they cannot mammo or sono that side. My chest has always felt stretched and to tight ever since. An older surgeon may not have had to coordinate w/a PS in the past.

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    GrammyR, that may be the big decider! We don't have to have it all done at once. My Mother had BC in '94 and never considered recon. I was given the option, by my surgeon and he also said I should remember, the door was not closed, if I decided to do it later.

    It must be difficult, if you have to make the decision to do it immediately, or to forgo. That's a lot of pressure at a vulnerable time.

    We have a free medical system, through the public Hospital system here, but we also have Private Insurance, where we can choose our own surgeon and specialists, but there is usually a gap payment, depending on who you choose, when you go private.

    I have read many stories here on BCO, of women saying they were really coerced into recon by Doctors and others, who have decided like BettyBoops and the others here, to deconstruct later.

    Then there are the ones like Glennie, who had skin left for the possibility of recon, which was really not discussed. The decision is then left on whether to have a revision to make the area flat, as it should have been in the beginning. I was one who had a "Dog Ear" left, I don't blame my surgeon for that, it is something that can happen and many women aren't too bothered by them. I was irritated beyond words, by mine and opted to have it removed due to the zinging and zapping of cut nerves I could feel 24/7. Best decision I ever made!

    In a perfect world, everyone would be given every option, time to decide and the power to do things in their own time without any interference or pressure. No, delete that, in a perfect world, none of us would have to make any decisions on this, because BC, simply wouldn't exist!

  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    thank you Glennie! I may just indulge in a wee bit of venting....in the near future.

  • Momine
    Momine Member Posts: 7,859
    edited January 2015

    Grammy, how did your being thin affect the result badly? I ask, because I have wondered about that. In most post-MX pictures I have seen there is enough tissue on the chest so that you do not see the ribs. On me, it looks quite different, with the ribs very prominent. The pec muscle on me can't be very thick

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited January 2015

    Momine, I was "warned" by the breast cancer social worker at my hospital (who herself had had a mastectomy without reconstruction and is slim, though not skinny) that we thin women will most likely wind up with prominent ribs after surgery. She was certainly right in my case -- you can definitely see my ribcage.

  • GrammyR
    GrammyR Member Posts: 702
    edited January 2015

    Momine- I was 5'6" and 108 lbs with all my ribs showing ( all my life up until then) There was no spare tissue so even at 250mls (Saline) I felt the stretch terribly.I had nerve pain along tbe incision line area which goes up under my arm. Sadly I have gained quite a bit since then ( 138lbs) so very uneven now and still find it so uncomfortable w/all bras and have these rolls of excess tissue where they removed nodes under my arm. I should not complain though as I am blessed to be here still .Nerdy



  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2015

    I believe that the reason that reconstruction is pushed so much in the U.S. is for money.  The reconstruction industry in the US is huge and a real money maker for doctors.  After I told my doctor no recon he never spoke to me again.  I was pushed to the nurse practitioner and never saw the guy again.  True story.

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Aug242007, as totally distasteful as that sounds, I am sure you're right! Greed has to play a big part in it, because there is rarely enough information given to women, when this recon surgery, is being pushed on them. We hear about it here all the time, so many women saying, if I'd known then, what I know now, I would never have agreed to this.

    What an experience for you, I have a name for those guys, they are "Dicktors", not Doctors!

  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    I think our culture is really breast obsessed too.  When my BS called to tell me my DX, he was really pushing Lump and rads.  But I had Pagets, which meant the entire nipple plus margin had to go.  Well,, in my head, I was picturing what would be left and I thought,, what's the point? It would be REALLY weird looking. Plus if I had MX, I could avoid having rads.  He spent like 10 mins trying to convince me to go Lump!  And finally he said, well, that's what my wife (also a doctor) said she would do.  HA!!  As it turned out,, I also had DCIS hiding in there, so just as well to get it all gone.   Course he ASSUMED that I would have Recon,, and left excess skin,, but that's another story.

    Breast obsessed,, and greed,, yup,,,,  push the recon !!

    Edit:   that's not to say if a woman wants it,, she should get it.  I just don't think it should be pushed as hard as it is for those of us who don't. 

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    I totally agree, Glennie. I am so happy when I hear of a recon that goes well and the woman is happy with her results, I just object to women being coerced into a surgery they don't want.

  • Bettyboops
    Bettyboops Member Posts: 239
    edited January 2015

    Hi All,

    I'll chime in by saying I agree totally with all of you !

    Ariom, shocking statistic about so many women able not to choose to do recon in Aussie! Good for all those women! Proof positive that things are pushed here. Big money in boobs!! I have a feeling the tide may turn away from so much recon eventually and maybe there will be a more realistic view toward all this. I think women are going to get sick of this treatment and band together. Maybe the decision will be more individual, those who want and those who don't want and the docs will support either equally. I did end up with a good and decent PS for implant removal but even he was initially drooling at the prospect of doing more recon on me. I could see the dollar signs in his eyes! Ha ha. I shut him down right away so we understood each other. To his credit, he did treat me with care and respected my wishes for explantation with no recon.

    I was absolutely expected to do recon as I whizzed and whirled through the endless merry-go-round of tests, diagnosis and doc appointments. When I questioned everything, I was spoken to like I was a "bad girl" or ignorant or something by two women surgeons! I just was not in a good frame of mind to be making these life and death decisions when I was so stressed and outside myself. My BS actually said that I would "regret" not doing recon. My PS was very curt on the phone to me after some questions prior to my bi-MX and she said she had a lot of women waiting for her services so for me to make up my mind by that afternoon. It was an impossible situation and my poor hubby just said whatever you want. ugh!!!!!!

    Well, I am past it all and I'm so happy I have you lovely ladies to vent to and share information with. I wish that I had the luxury of time and had connected with a group like this before my surgery. At least we are here now for ourselves and those with future questions.

    Best,

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Great post Bettyboops! I too agree that there could be a turning of the tide and women will say no and they won't be coerced by these people who are really only thinking of monetary gain and not the best interests, of women. We know, that living without one, or both breasts, is very possible and for those of us who have made that decision, either to begin with, or after deconstruction, like you, are comfortable, with our choice.

    I don't mean to hijack this thread, but this is a question for non reconstructed women.

    I have started toying with the possibility of a chest tattoo again. I wanted to do it when I first had my UMx, but got conflicting advice on the length of time it had to be before it was safe to Tattoo the skin after surgery. I am 2 years out now and have been experimenting with temporary Tattoos from a Tattoo artist here in Australia.

    I have a section of my scar which opened up when I got an infection, early on, it resembles the "Blip" on a heart monitor, but the rest f the scar which is very long and goes from slightly over my remaining breast, across my chest and curves around my back because I had a revision surgery to remove a "Dog Ear". It is all very fine and barely noticeable now. My only concern is about the possibility of LE. I am wondering though, so many who have reconstruction have nipple Tattoos done, does anyone have any experience with the stats on LE after any kind of chest Tattooing?

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    Ariom - I only thought of that after I had my 3D nipple tattoos, but I bet if you message Vinnie Myer - here or at his shop email he'll know something about it. He is very helpful and gracious and I'm sure by now one of the world's foremost experts re: post mx tattooing. I think a tattoo is a wonderful idea! How deliciously fun to pick out some art and have it come to life! If you haven't seen gritgirl's fireweed tattoo you should. It is stunning.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited January 2015

    I love the idea of a large gorgeous tattoo but when I discussed it with my LE therapist she said that's a terrible idea, for me. I am dealing w truncal LE in addition to right arm LE which puts me at risk for worsening my LE. I was soooooo disappointed but accept that she is right. Instead I have to live vicariously through all you ladies who can and do get tattoos to cover their scars.

    Amy

  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    Amy, I had planned my tattoo all along!  Then I got truncal LE too, and my therapist says, bad idea.   I too live vicariously through other ladies' tattoos.

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    See, girls, this is what gets me swinging the other way again. I would never forgive myself if I got LE from doing this. I may just continue with the temporary tattoos for a while. They really do work very well.

    This is a pic I posted on another post to show how a temp, even though it is not something I would actually have tattooed on me and I know the color is too strong, but the way it covers the "Blip" in my scar at the front, and the size, is exactly what I am aiming for.

    image

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    FarmerLucy, that is a brilliant idea! I would be doing more research before I make the final decision and Vinnie would be the obvious choice. Thank you!

  • AmyQ
    AmyQ Member Posts: 2,182
    edited January 2015

    Ariom, where do you find these "tats" I could totally dig temporary ones...in fact they seem almost ideal as I tend to change my mind quite often so I could also change my tattoo!

    Thank you for the photo

    Amy

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Hi Amy, glad you like the pic and the idea!

    I bought mine through a Tattoo artist here in Australia www.amazingraymond.com.au

    One of the girls in the US has tried the Tatts from here www.tattoosales.com and is happy with those. The ones I bought also have a paint on, Tattoo shine remover available, which was developed by the Tattoo artist, to make these Tatts look even more real. I have also read of some girls who have had Henna Tattoos done, which last longer than the Temp stick ons. I have had this Koy fish on for about 3 days and it shows no sign of fading yet, so I guess I may even get over a week from this one.

  • julieho
    julieho Member Posts: 222
    edited January 2015

    thank you for posting your experience. I had a BMX with immediate reconstruction using expanders, then implants. For me it was awful.

    I know of other women who love having implants so I know it is not the experience everyone has. But, I was, and still am a bit annoyed that the difficulties many of us have with implants weren't presented to me then. I also regret that I was never told about the DIEP surgery at all, just the Tram where they remove your abdominal muscle and most women don't recover their abdominal strength afterwards. I just ruled that out because if I don't keep my core in good shape I have awful back problems.

    My story also is much like yours where honestly I was focused on my diagnosis and treatment plans, when I went out of state for a second opinion I didn't even ask to include a PS, which I regret.

    I asked my PS to create smaller Breast from implants because I didn't want to look like I had a boob job with big, high set Breast. I was 53 and figured if they were smaller than my natural C+ Breast than they might not look as fake and I wanted to have the benefit of going braless. Anyway they placed expanders in and 10 days later I was so sick and my left side was bright pink/red. By day two the area of red had doubled, I had high fevers and felt like I had been hit by a bus.

    I spent six days in the hospital on some of the strongest IV antibiotics and just got sicker. I really wasn't even able to make decisions but I kept urging the surgeons to just remove the expander and culture it because it was clear to me I was on the wrong antibiotic. They were reluctant to draw fluid from around the expander for fear they would puncture it. I convinced them I could care less I wanted to figure out what bacteria it was. They cultured it and on the fifth day it finally grew and revealed what the infection was. I can't remember the name but the hospital and surgeons were freaked out because it was a very rare bacteria so they rushed me into surgery to remove the implant.

    Everything was then done in such haste and they weren't definite that they would remove it but they needed to open me up and clean it out. Well suffice to say it was horribly infected and they did remove it and sadly, because I didn't have a chance to talk through my options, they left the right expander in.

    The also figured out that Bactrim an old, oral antibiotic was the best treatment so I went home the next day. Because I was supposed to start chemo in two weeks, which was delayed now by a month they told me I wouldn't be able to put an expander back in until I was through chemo. I was so sad they didn't just remove both. I felt their approach didn't give me the option of deciding I may no longer want implants.

    Anyway they replaced the expander five months later after I completed chemo. On my third full I got a red Breast again. This time they immediately out me in antibiotics but again did not culture it because they were worried they would compromise the expander. I was on antibiotics for four months, would sligtgly improve and then it would come back. I was sure that my body was rejecting the expander on that side. They told me I should have the left removed let it heal and start again. I thought implants were so much softer than the expander so told them just take them both out, culture the infection and clean out the left and put implants in. If I rehected those too I would just leave it alone and be flat. They did and I didn't reject the implants but for the next year and a half I was in constant pain. I hated having my pec muscle stretched over my implants, and my implants were very small. The left was completely different than the right because of all the scar tissue. It was awful.

    On these boards I found out about DIEP. It was a big surgery but my major concern about my ab muscle was answered because they don't take it. I researched it well once I found out there was this option. I went to NOLA, one of the top places for this surgery and had those awful implants out five weeks ago and two flaps from my abdomen put in to create Breast. It is a BIG surgery and I awoke in a lot of discomfort as you can imagine, but I immediately told my husband, even with all the internal stitching they did on the flaps that my chest felt wonderful. That iron bra, rocks in my chest feeling was entirely gone. I kept them small again but they are soft, and sag (Zoe's I so wanted some sag) and to my touch they feel just like a Breast. I am starting to recover and they have healed and feel even better.


    There are many paths to wholeness and I love hearing others tell theirs. I do think implants and DIEP and having nothing at all should be clearly presented and we understand all the options, the risk and the benefits.

    Thanks for sharing your story. I told my surgeon we had one try on the DIEP if I didn't take them, I had complications I was done and just wanted them both out. I still feel that way and for now and mostly so happy to be rid of the implants.

    Take care,

    Julieho

  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    Amy, I have used the www.tattoosales.com      They are really inexpensive.  I'm sure there are other places too, I found them by googling temporary tattoos. 

    Julie!  Oh my,, you went thru a lot!!  I'm glad you are happy with your DIEP. You had a long hard road.

  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    tattoos? Isn't that more needles!? Nooooooo, no more needles. ;-)

    I do like the temporary tattoos, that's something I could roll with.

    For the needle averse (and lymphedema concerns here too) another option..

    I've had henna tattoos done, semi-permanent and I had a lot of fun changing up designs.


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