mastectomy and emotions

[Disclaimer: none of this is meant to offend any woman who has already gone through a mastectomy. These are just my honest feelings about it right now, and these feelings seem to change by the hour.]
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A friend asked how I was handling the upcoming mastectomy part of the whole process. I thought I was OK with all of it. “Just take it/them off; I don’t care. Who needs it/them anyways. I’ve never used them for their actual purpose anyways, blahblahblah.” on and on and on.

I was talking in very flip ways about having a mastectomy, in fact; making jokes — pretty sick, dark humor going there. Now, those who know me understand that this is my way of coping and that I’m also prone to hyperbole.

So anyways, I was talking about this in a very flip, casual way — all along actually knowing deep down that it wasn’t really flip or casual. I hadn’t done any research about it at all until the other night when I googled some mastectomy images, and realized that it’s going to be harder than I thought. They are . . . disfiguring. I’m going to be disfigured. Again, no offense whatsoever to women who have been through this; I imagine it just takes some getting used to, or at least it will for me. *sigh*

Of course, take a breast, take them both, if it means saving my life. I would much rather live. According to my oncologist, Dr. Funky Glasses, they just need to take my left breast and not my right. She said that the chances of the cancer spreading to my right breast are 1%/year and that it’s more likely that the cancer will spread to other parts of my body. Having a blunt oncologist is a mixed blessing, but I’m sure overall I need to know what I’m up against. At first I was convinced that I wanted them to take both, but after seeing the images, now I’m not so sure.

Having looked at the images more than once at this point, I’m getting more used to them. I’ve also done more research on what type of mastectomy they typically do for an Inflammatory Breast Cancer (IBC) patient because that’s one of the questions that I forgot to ask Dr. Funky Glasses when we were there talking to her.

I’ve never been gung-ho on having big breasts or anything. Dr. FG, who says I’m “busty,” (though I’m not that busty) said that could be one way to get them both off and have insurance cover it — that maybe having symmetry would be better for my back, etc. And get this — insurance will cover a breast reduction but often not a double mastectomy. Ohhhhh, don’t we all just love (GACK!!) insurance! I really think the only reason I’m “busty” is that I’m overweight. I would only be sorta “busty” if I were normal-size. Yanno?

Of course, if I get one off, I’ll wear a prosthesis until I can get breast reconstruction which would be a year from the mastectomy — the recommended time for IBC patients. I hope that year gives me time and motivation to get in better shape. I’ll say “better” and not “great,” so I don’t set myself up for failure.

Anyways, I do have some emotional work to do with this, however it turns out. I am resolute about the mastectomy because it simply has to be done on the left breast to save my life. The right breast? I’m still thinking about that, particularly because of something that happened more recently.
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This is going back to my post about nighttime cuddles. While Nate was wrapped around me, head on my chest, I couldn’t help thinking that Moms are soft and squishy and that’s what kids like about Moms. I remember putting my head against my mom’s chest when I was a little girl. When I was with Nate, I thought to myself, “if I get both of my breasts off, my chest will be just like Frank’s, and Nate won’t have anything soft and squishy to lay his head against.” I don’t know if that sounds weird or what . . . . but it’s almost like I wouldn’t be quite as MOM-like.

It would be a whole different thing if, for my health, I had to get both breasts off, but I think I’ve been having a visceral, knee-jerk reaction to the whole thing, and I really don’t have to have them both off.

I’ll probably change my mind 500 times before the actual surgery, but in that moment, I realized that in taking away both of my breasts, it wouldn’t just affect me, but it would also affect my little boy. It would make me physically harder. Not soft and squishy how he’s used to me being. I know I’d wear the prosthesis and that would work most of the time, but if I’m in my pajamas and don’t want to wear the prosthesis, maybe I still want my boy to be able to cuddle up to me and have something soft and squishy and familiar to hug. Something to fall asleep against. Something Mom-like.

Maybe it’s not all about me.

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16 Responses to mastectomy and emotions

  1. […] TO Mothers With Cancer. Possibly related posts: (automatically generated)Study Links Rise in Mastectomies to M.R.I. […]

  2. bcjenster says:

    You just keep thinking out loud and working it all out. My mastectomy came less than a week after my diagnosis so I didn’t have a lot of time to really think about it. I had the left breast removed because I had to. I had reconstruction a year and a half after that and at that time I had a prophylactic right mastectomy and DIEP recon. All that is just to say you don’t have to do a bilateral right now and you have time to decide for sure what you’re going to do.

    As for the disfiguring… it is. The first time I saw myself after the mastectomy was surreal. I’m at a place now, maybe because I’ve had the recon, where I’m okay with my body. It took me a while to get there, though.

    Good luck with whatever you do.

  3. Laurie says:

    Having a mastectomy is traumatic. Most of the time I am fine with transformed, asymmetrical body but I still grieve for my breast, more than two years after my surgery. Reconstruction is not an option for me (due to lymphedema and ongoing chemo) and even wearing a prostheis is extremely uncomfortable.
    Sometimes I don’t even think twice about my asymmetry (I am a d cup on one side) but I do tend to feel a bit self-conscious in the summer time.
    The cool thing, though is that my kids really don’t care. I am their mom whatever my body looks like and to them, I look perfectly normal.

  4. whymommy says:

    Yes, it is a hard decision. It may take a while to get used to the idea and work out what you really want. You’re doing great; making progress, it seems. I like that you’re making it your choice and reasoning it all out. There is no wrong answer, only what’s best for you.

    For what it’s worth, I worried over this too, but found peace in (of all things) a comment left on my blog. The commenter (and I don’t remember who it was or when it was, but I remember it still) said:

    “Having your breasts removed will allow you to hold your boys even closer to your heart.”

    She was right. I held my baby several days after the surgery, and even he snuggled right in, just like he does with Daddy. After I could see through the tears, I realized something. This way, his heart really was right up next to mine, and it was absolutely amazing. I think he could feel it or hear it better, as he immediately calmed, and it brought both of us comfort in that difficult time after surgery.

    Six months after the surgery, I can honestly say that I have not once regretted my decision to have a double. I feel lighter and free, and I run even faster than before. No more sports bras! No more bras at all! Swimsuits aren’t even that difficult, and I can even just slip on a tank or rashguard without worrying about support. I’m even wearing tank tops in public for the first time, and I feel so comfortable. It was absolutely the right decision for me, and I hope that you feel the same peace after you make your decision.

  5. sprucehillfarm says:

    I too had to make the same decision. I did not have cancer on my right side at all. I did have cysts and nipple discharge like the left one. Because my cancer was undetected in my mammograms and ultrasounds I made the choice to do both at the same time. I am so glad I did. It has given me peace of mind. I however was able to do reconstruction right away so my surgery was not as traumatic. The only thing that bothers me is not having nipples. That is the only thig that makes me look different. I am the only one who notices it though so it’s ok. Sometime soon I will get my tattoos and will look “normal” again. I am looking forward to my last step in the process.

  6. bcjenster says:

    I’m just going to go all out here and talk about intimacy. Because that’s the thing I miss since having both my breasts removed. I had the reconstruction and I may mostly look normal, though I don’t look at all like “me”. I’m okay with that. To anyone who hugs me I “feel” normal.

    Cancer changes us in so many ways, not the least of which is our relationship with our significant other. Before cancer my husband and I had a very healthy sex life. We were past the little kid stage, you know. :o) It’s taken a drastic nosedive since then and even two and a half years out of chemo it’s pretty non-existent. I’m blessed to have a man who loves me regardless of the lack of physical intimacy, but I hate it. And I contribute a lot of the problem to not having my breasts anymore. And it’s not a mental or emotional thing. It’s purely physical. Breasts are good for many things, not the least of which is getting our engines revved. But without the sensations of normal breasts that part is completely lacking.

    I hope I didn’t make anyone uncomfortable with that. Wait! I don’t care if I made anyone uncomfortable with that! LOL It’s a reality that’s not discussed very often and I think it’s just one more thing to think about in making such a difficult decision.

  7. throwslikeagirl74 says:

    bcjenster – You said what I’ve been trying to figure out how to word! Intimacy was actually one of the biggest influences on me to keep “Righty”. But of course, we don’t have to make our decisions right away. I’m still going back and forth on whether to reconstruct “Lefty” or not.

  8. bcjenster says:

    throwslikeagirl (LOVE that screen name!) – that was the only thing that made me think twice about having “Righty” (lol) removed. But my husband and I both decided it was the right thing for me. I don’t regret it, and yet I still deal with this issue at times.

    When it comes down to it, there’s not a generic right or wrong. You’ll make the right decision for you when it’s time.

  9. whymommy says:

    Can I add another comment? I was told that I had a 15% likelihood of cancer returning in the opposite breast — which probably is equivalent to your quote of 1% per year, Judy, given everything else. It doesn’t sound like much, but with my odds of IBC returning, I was delighted with the opportunity to reduce my risk of recurrence from 90% to about 75%. (I’m only Stage IIIC, so your calculations may vary.) I didn’t think it would make that much of a difference … but then, during the surgery, they found cancer in my second breast as well.

    So I’m glad it’s gone.

    (Just thought you should have the whole story.)

  10. mn says:

    wow, i’m reading all these comments having made my way through jen’s blog. you guys are so open and frank and made me think of issues of what it is to be a woman, to be human. i thank you for your words of wisdom. this is like going to a library and having all the books just talk to you. i do not have your situation, but i visit Jen’s blog bc i admire her courage and yours.
    for what it’s worth, i haven’t had any intimacy for a year not bc of any illness. one of you commented about intimacy, and it made me think, you know my breasts do offer me a lot of sensitivity and if i were to lose that, how would i feel. so thank you for making me think about things i hadn’t thought before.

  11. mac says:

    having kids changes everything. good luck with the surgery

  12. I actually want to comment on bcjensters comment, GOOD ON YOU for bringing it up, I think you should do a post on this topic. I personally would LOVE this blog to be different in the way that it is so OPEN and HONEST and really OUT THERE WITH THE TRUTH. The HARDCORE truth. These are the realities of cancer, our sex lives do change or completely stop, how does this make us feel, can we get past it, lets put topics like this on the table and I guarantee we will draw people in like bees to a honey pot because there is a longing out there in the ‘cancer world’ for the TRUTH. Let’s take a page out of bcjensters book and discuss these type of issues. I haven’t lost my breasts but I have issues with having an ileostomy (which is a bag I poop into for those who don’t know), I actually showed a photo of me on my own blog with it on because you know what, it’s real and it’s the truth. Okay I will get off my soapbox now (even though I feel like I could go on and on) but please do a post on this bcjenster and anyone else who has anything to say that they feel might be embarrassing or not ‘nice’ to talk about, no, just DO it and be brave, you will be amazed at how many people probably wanted to know about that very thing, or had felt that very thing, you know what I mean. Let’s do it. Perhaps I should post about my ‘bag’ again on this blog as it is very real and certainly not a nice thing to have, it bothers me in terms of intimacy, in other ways too. I may do that, I’ll give it some thought.

  13. I debated it too (don’t we all?) and decided to only do a sinlge mastectomy and reconstruction (DIEP) right away.

    I figured, if I could get 10 good years out of my other breast, I’d be happy. (primarily for reasons of intimacy) (thanks, Jenster, for putting this issue right out in the open!).

    I reasoned that I could always repeat the procedure in another 10 year…

    After recovering from my final surgery, a year and a half later, I was not at all sure that I ever wanted to do that again. And I wondered how I would handle it with a body that was 10 years older.

    I knew that having one mastectomy was the right decision at that time (especially since my insurance would not have covered a profilactic mastectomy, not to mention reconstruction). But I also knew that had I known how traumatic the surgeries were, I would have fought harder for coverage, so that I would not have to have surgery later on. (I had a 40% lifetime risk of getting cancer again)

    I did not have long to debate over the decision… a few months later I was diagnosed with metastasis and there was no longer any reason to do a mastectomy….

    I guess, in some ways, I am glad that I at least still have my other breast.

  14. Pam says:

    I had a lumpectomy on my right side in 2001. Chemo, and radiation. I was also in the study for herceptin for a year. Then in 2004 some pre cancer spots showed up so I had a mastectomy with an abdominal tram flap reconstruction. It worked out well I had talked to the surgeon about having the left breast removed just for protection and I will tell you that I am very happy that I did not have the left one removed. I am thankful that the right one is reconstructed and the cancer is gone but I am very happy to have my natural breast on the left side. I would never recomend having a breast removed just for precaution. Unless there were some extenuating circumstances. There is nothing like your own natural breast. There are some things you will miss about your breast. It is true that you are more than breasts but it is a challenge to be without your breast. If you can justify it by saying I saved my life by having it removed then it is worth it. But if you only do it for slight precaution it will in my opinion be more difficult to deal with. I wish you the best with your journey, I hope you take God on it with you.

  15. […] this goes right over his head.  The hardest part with him are my own physical limitations.  Like Judy I also felt like I lost my “pillow” for him to rest his head.  Since mine was only a […]

  16. route53 says:

    My 42 year old wife has chosen to pursue a double mastectomy with reconstruction. I can only support her every step of the way on this as she has done her homework. To me the breasts are more a part of her to her than they are to me. The removal of the cancer and decreasing the chance of recurrence is the biggest decision even though our surgeon said a lumpectomy was possible.

    My wife’s OB/GYN was our savior in finding the mass as my wife has large “cysty” breasts. You can’t even see anything in her mammograms. We are going to take this opportunity and make sure we don’t waste it.

    As for those who say intimacy is gone with your SO, I’m so sorry. I have no doubt my wife and I will continue to have a vibrant sex life (maybe in a different way) as my love for her and respect for her in this trying time. Our clinic does offer sexual therapy which we’ve chosen to skip. I’m not sure if the insurance will pay for it, but I’m sure they have it because people need it and want it.

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