Regrets?

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Leah
Leah Member Posts: 2

Hello all. I would appreciate others' opinions on the following struggle I have been having.

I am 41, and had a lumpectomy in April that found a 1.3 cm "spot" of invasive cancer, extensive DCIS, and unclear margins. I was then left with the decision as to whether to proceed with a mastectomy, or radiation (including tamoxifen with either option). I was unable to find anyone to give me a second opinion, as all other cancer centres were too booked to see me in time. My surgeon recommended a mastectomy, my radiation oncologist recommended radiation, and my medical oncologist recommended chemo (which I was not even considering).

I really struggled with this decision. I've always placed a high priority on how I look (right or wrong, that's the way I've always been), and I was extremely concerned about how I would deal with the outcome. Logically, I thought that it would be better to be safe than sorry, and for this reason thought that the mastectomy was the way to go. Emotionally, I knew I would have a difficult time adjusting to this.

One of my concerns with a mastectomy was being "uneven" - having one perky breast and one saggy breast (I have two children). My surgeon and plastic surgeon both suggested I have a small implant placed in my "good" breast to deal with this. As I have always been unhappy with the size of my breasts (I'm a larger-boned woman with a small B cup), I saw this as a "positive" side of having to go through breast cancer.

I finally chose the mastectomy with reconstruction, which was completed in mid-July. Physically, my recovery has been extremely easy, and I do realize how lucky I am because of this. However, I just found out today when I went to the plastic surgeon for a final fill of my expander that we cannot go any larger, and that the option of an implant in my natural breast and making myself into a full B is not possible, due to the fact that my skin is stretched as far as it can be over the expander. This was never even presented to me as a possibility when I was making my decision.

I am now horribly regretting my decision. I hate how I look and feel. I have not been able to return to work, as I cannot think of anything else except this horrible mistake that I've made and cannot change. I can't understand why I can' get over this; I can't do anything to change it now, and I need to get on with my life, but all I can feel is this huge regret over what I've done.

Has anyone else felt this way? I would deeply appreciate any suggestions as to how I can move past this. Thanks.

Comments

  • sahalie
    sahalie Member Posts: 2,147
    edited September 2007

    Leah,  I'm so sorry you have to deal with this.  I had a bilateral mastectomy in 2006 and chose to not reconstruct and have been very happy with my decision.

    My suggestion would be to seek out another PS right away and make that appointment ASAP to get another opinion.   There has to be some relief for you and I bet another doctor would give you more options.  Hopefully.   Begin looking this weekend so you have some names if you need a referral from your doctor.    I wish you all the best.

  • NoH8
    NoH8 Member Posts: 2,726
    edited September 2007

    One of my priorities in selecting a course of treatment was that I not have any regrets. I wanted to be as aggressive as possible and never have to look back asking, "would this recurrence have happened if I had been more aggressive." Like Cheryl, I also had a bilateral mastectomy without reconstruction and I've never regretted my decision.

    Unlike you, all of my body image issues seemed to disappear after I was dx with cancer, especially as I met more people who (eventually) did not survive their cancers. As far as I can see, being alive is a beautiful thing, and being alive and healthy is a bonus. I think about my first friend to have died of breast cancer, before I was even diagnosed and that she would give anything to still be alive, looking how ever she did, just to see her grandchildren grow up.

    Have you talked with a therapist about your feelings?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Leah....Absolutely get a second opinion on the reconstruction! Many women here have reported vast differences among the consultations they had with PSs and have been able to make a decision from among a variety of options. Even if you can't get the expander filled as much as you'd like, I can't see why you're unable to obtain symetry with an implant in the other breast. I really don't think that you should give up. I am also very 'looks-conscious' and believe that we deserve to look and feel as beautiful as possible.

    Good luck finding a plastic surgeon who will work with you!

    ~Marin

  • roseg
    roseg Member Posts: 3,133
    edited September 2007

    A second opinion would be a good idea.

    Are you a candidate for a reconstruction with your own tissue -DIEP or TRAM?

    One thing that I have come to accept on my reconstruction journey is that in the end I am about as happy with my changed breasts as I was with my originals.  Which means that I'm not 100% happy. However I manage to get dressed and live that down most days.

    There is a terrific amount of psychological adjustment in breast reconstruction. We hang a lot of our unhappiness about breast cancer on the hope of the reconstruction. When things don't go right, which is often a matter of perception rather than fact, the disappointment can be mighty.

    I wish you luck. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Leah, for some reason breasts are very important to us ladies.

    I had a single mast without construction.  I have, so far, been happy with my decision.  I am getting more used to looking at myself lopsided when I don't have my prosthesis on.  Our bodies have changed forever.  Women discuss this all the time and it is improtant that you feel good about yourself.

    I agree that you should get a second opinion.  Just remember that the breasts do not change the person that you were before breast cancer.  I know you don't want to hear how "lucky" you are to be alive.  You already know that.  I just want you to be able to accept the new you no matter what happens next.  It's hard...damned hard.

    Go get that second opinion, and please come back and let us know what you find out.  This may be of great help to others that may go through the same thing you're going through.

    Good luck.

    Shirley

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2007

    Leah,

    You are not alone in how you feel.  There is another thread in which someone asked whether anyone regretted their decision to have a mastectomy.  Initially all the responses were positive, "it was the best decision I ever made", but then I posted, voicing my surprise that not one person had any regrets. Since then, there have been a few others who have dared to say that having a mastectomy isn't always easy.  Here's a link to the other discussion:  http://community.breastcancer.org/topic/87/conversation/674532?page=1

    I think there are certainly lots of women who jump at the chance to have a mastectomy, since it so significantly reduces their risk of a recurrence or getting BC again.  Generally, these women will be happy with their decision.  There are others, myself included, who don't have a choice but to have a mastectomy because our cancer is too wide-spread within our breast.  And there are women who have the choice and struggle with the decision.  Those of us in the last two groups may certainly have some regret and difficulty living with a mastectomy.  That's normal.  A mastectomy is a change to your body that you didn't want, that confronts you every day.  It changes how you see yourself.  But even for those of us who wish that we hadn't had a mastectomy, I think that in time, we will adjust, accept and move on.

    For you, as the others have said, I think the first plan of action should be to see another PS.  How recently did you have your surgery and how long have your been 'under construction'? Perhaps if the expansion is taken more slowly, you can continue to increase the size of your reconstructed breast.  Alternately, an option might be to have a lat flap, in which additional skin is brought over to your breast.  Or, if neither of those options is possible or what you'd like, perhaps a lift of your 'good' breast will make it almost as perky as your reconstructed breast.   

    My PS was careful to explain to me that the objective of implant reconstruction is to look normal in clothes.  Although it's still a struggle for me at times (and I'm 15 months past replacement surgery), with the proper choice of bra and clothes, I do look good in clothes - in fact, better than I ever did before.   You are still in the middle of your reconstruction process.  You need to find out all your options to get the results you want and you need to give this more time.  It's not easy, physically and especially, emotionally.  Be patient with yourself, allow yourself to feel angry at times - that's okay - and then take charge of the situation and do what you need to do to get yourself onto the other side of this hump.  You'll find lots of help here!   

  • Leah
    Leah Member Posts: 2
    edited September 2007

    Thank you all for all your comments and input. And my apologies for missing the previous thread - I did a quick search, but hadn't stumbled across this before I posted my comment.

    Some additional information that I forgot to have in my posting is that there were no further incidents of cancer in the tissue that was removed during my mastectomy. Plus, I have absolutely no family history or risk factors. My doctors could not agree on whether a mastectomy was necessary or not, so I am "lucky" to have had the option of making this choice.

    Again, your comments were very helpful. I was curious as to whether this emotion is part of the healing process, and clearly, your answers show that for most of you this is not. My anger comes from information that has been given to me following my mast. that should have been given to me when I was making my decision, and I guess I just need to get over that.

    Thanks again!

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2007

    Leah,

    I think that the emotions that you are feeling are in fact part of the healing process for many more women than will admit it.  If you go to the Reconstruction Forum, you'll find lots of posts from women who are, at least initially, dissatisfied with their reconstruction and/or frustrated with the process.  In fact, from reading this board over the past 20 months or so, I'd say that very few women are happy initially.  The good news is that most women do come to accept their reconstruction over time.

    I completely understand your anger at not being given certain information before your mastectomy.  While some of the women here see some of my posts as being anti-mastectomy, that's not true at all.  I think mastectomies are exactly the right surgery for many women, for many reasons.  I just get frustrated when mastectomies with reconstruction are presented as being simple "boob jobs" that will eliminate all risk of BC in the future and simply & easily give you a new perky perfect set of breasts.  In actual fact, mastectomies are major surgery that create a permanent change to your body.  The reconstruction process is long, complicated, sometimes painful, often requires revisions, and more often than not the results are not quite what you were expecting.  Over time, most of us come to accept, often like and sometimes love our new bodies, but for most of us, it does take time.  I'm not anti-mastectomy, but I do think that it's important that anyone going into the process be fully informed about it.  Too often, doctors present only the best-case scenerio, and too often, women who've gone through it talk only about the final results, not the process or the difficulties. 

    Okay, time to get off my soapbox (yet again!).   I hope that you are able to get closer to the results that you want, and I hope that, like so many others, you do come to like your new figure over time.

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

    Leah why not have a lat flap to combine with the implant to make it bigger?  Then lift the other breast, so even if you don't add an implant to it, they will both be perky.

    You definitely need to consult with another PS--IT'S OKAY that you have the expander in.  You are not stepping out on your PS-- you just need to get another opinion.

    Don't despair.  I hope you get the outcome that you desire-- please keep us posted.

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