How does it feel? – from the inside, looking out

Elle Magazine - USA - June 2015

Elle Magazine – USA – June 2015

This is a post to mark one year since my second reconstructive breast surgery in June last year. I wasn’t going to post anything at all, since there is not much change to report with my body, other than the continuing VERY slow progress of healing. I’m determined that it’s not finished yet, but we will see!

However, today I was reading a great series of articles in the June 2015 USA edition of Elle magazine about women and their breasts and how they feel about them – whether healthy, not healthy, big, small, happy, unhappy or an assortment of other feelings. If you are reading my blog because of your interest in my breast surgery, or someone close to you, then it is worth tracking down the issue.

One of the articles, “A Radical Idea”, is about the potential over treatment of DCIS – ductal carcinoma in situ – and the current trend of removing and reconstructing breasts in order to avoid the potential development of full blown breast cancer. DCIS is not an invasive breast cancer (and neither is LCIS, which is what I was diagnosed with) and will not become invasive in an estimated 70 per cent of cases. So there is now a small but growing school of thought that active surveillance in some cases may remove the need for radical surgery. However, if there is a strong history of family breast cancer and /or other precancerous cells present, then the risks of developing invasive breast cancer become much higher, as was the case for me.

All interesting reading, but the paragraph that I thought I’d share here was this one, tucked away at the back of the magazine:

“It’s a theory that has been widely accepted for prostate cancer, where active surveillance has become much more common. One obvious reason for this is that prostate surgery often causes impotence (and incontinence) – and the magnitude of that loss is something most men and, not incidentally, male surgeons instantly grasp. Women may not respond as viscerally to what Susan Love, MD, the dean of breast surgeons in the country, calls the “collateral damage” of mastectomy: the loss of sexual feeling, pain, disfigurement, and emotional consequences. And their doctors, the vast majority of them men – because the vast majority of all surgeons, in all specialties, are men – may not express the damage particularly poignantly. Here’s how Love describes plastic surgeon’s patter with potential mastectomy patients: “We’ll take them off; we’ll make you new ones. They’ll look normal, they’ll feel normal”. What they mean is normal to them, because you’re not going to have any sexual feeling at all.”

I thought this was worth repeating again here because it’s the first time I have read about this in mainstream media and it’s something that is not widely known. Because you LOOK reasonably normal after your reconstructive surgery, and you don’t have cancer, everyone thinks it’s all hunky dory. But it’s not. It’s still damned uncomfortable, one year after the second surgery, and almost two years since the first surgery. I am fortunate that my surgeon looked me in the eye and told me that I would never have erogenous sensation in my breasts again. But I didn’t understand how much I would miss that sensation of feeling (ANY feeling at all!) in my breasts and a big part of my stomach, let alone the ongoing discomfort of being in a skin that feels like it’s a couple of sizes too small on my torso, and the stiffness brought about by the very slowly healing scar tissue underneath. I accept it, it seems to be slowly improving in some ways and yes, I know it could all be worse, much worse. I don’t have pain, I don’t have cancer and my body looks okay. I am grateful for all of that, and the skills of my wonderful surgeon.

I also want to be honest and say that it still does not feel great at all. So I’m sharing this for other women contemplating this surgery because I always think that it’s best to know in advance what you may be facing. Then you will have more realistic expectations. I don’t have any regrets that I had my surgery, and would do it again, if I had to decide the same thing now. I also want people to be aware in case they are in contact with other women who have this same type of surgery. No, it’s not a reason to celebrate. No, it’s not a “boob job” and “now you will look so great in your bikini”. It is a serious preventative cancer surgery and it is hard and it will have a long lasting impact on your body and your emotional state. FullSizeRender[1]Sometimes I wonder is it just me having this experience, which is why I felt glad to read that article. I think that is one of the things I have found hardest in the recovery of my surgery, that feeling of not being understood in the experience. Not having the downsides of it acknowledged because everyone wants you to feel happy and grateful. And I do. But I think it is important that the longer term negative implications are understood and acknowledged too.

That is all! I was glad to have the situation validated in the magazine and perhaps other women will relate to it too.

I am okay. I am getting on with things, keeping at it with my art. I am adjusting to a new way of being and working out a new way forward for myself.

Onwards!

6 responses to “How does it feel? – from the inside, looking out

  1. Rose

    Hi Sarah, Great to hear from you again. I can definitely relate to everything you are saying. I had my preventative double mastectomy and Tram Flap recon last June 5th 2014, so just over a year for me. I am actually going in next week to have nipples reconstructed, which I am nervous but happy about. At least I will look a bit more normal, well my “normal”. I too am still tight in my tummy area, it feels like I am wearing tight jeans all the time. I don’t feel the tightness when sitting or laying down, but when I am upright. I too, don’t have much sensation in my nipple and tummy area. But like you, I am still happy I did what I did, as I now don’t live with the fear of breast cancer. My sister died at 37 years old from BC and I have lost aunties and cousins as well.

    I thought I would feel absolutely “normal” by now, but have come to accept that I will probably always feel different. If I put my arms over my head when not wearing a bra, I sometimes get fluttery weird moving sensations in one or both breasts, I suppose its just the insides shifting or something, I don’t really know? I will be asking my PS about the feelings next week when I see her. But I am very happy with the shape of my breasts, and my scars are fading well.

    I agree that everyone should be made aware of the outcome of this surgery, but I also wonder if they would go ahead with it if they knew every tiny detail? I know I would have still done it, as I didn’t want expanders and implants, and also wanted my huge risk of cancer (I am BRCA1 positive) reduced. I do have the best tummy I have ever had in my life, which is a bonus, lol, especially at my age! I am 59 years old, 60 in August, but I still have a wonderful marriage and the best husband. We have been together since I was 15 years old, married for 41 years, so wanted to look good for not only me but him too. Don’t get me wrong, I didn’t do this for him, it was done for me, but I still want to look great for him too.
    Love your art, where can we see more of it?
    Kindest regards,
    Rose

    Like

    • Hi Rose

      It is so lovely when others can relate to your experience isn’t it? Even though we probably wouldn’t wish this on any of us… Thanks so much for sharing where you are up to with your healing. Sounds like we are on the same track. In myself, I do think there is more healing to go, and one day we will feel “normal” again. Well, more normal than now anyway. It just takes time and loving care to heal again I suppose. I do hope your nipple surgery goes well. And I am sorry to hear of the loss of your sister at such a young age, and other family members too.

      I have been doing Pilates this year with a rehabilitation specialist and it has helped those funny internal twinges for me, so maybe it will help you too once you are recovered from the latest round of surgery. I am pleased with the shape of mine too – nice and even and full – and yes those scars are fading slowly too. Still such a big prominent one across my stomach but I am getting used to it and encouraging it to keep on healing!

      Go you and your fabulous fifties and loving husband!

      Sending love to you for a smooth and successful surgery next week

      Sarah
      xxoo

      PS thanks for asking about my art too – all info on my website at http://www.watermelonhearts.com/

      Like

  2. Jenny G

    Hello and thanks for all the information in your blog Sarah – I am currently considering the surgery you have both been through versus mastecomy with no extra surgery (wearing padded bra) or silicone implants. It seems that the TRAM surgery means one not only has damage to breast area but also stomach & torso, plus a longer more painful surgery (risky) and recovery. I understand that silicone is an introduced substance Versus using one’s own ‘natural’ body parts/fat – but I wonder if that concept is more of an emotional thing (which I can appreciate) than rational. Whether TRAM or silicone, after mastectomy one’s original breasts are gone and irreplaceable, never the same. I appreciate what you say about male surgeons perhaps not understanding the female view. I also imagine that now you have had the TRAM surgery done you might find it difficult to think or say you might have done something different if you knew then what you do now..but what would you advise, say, your daughter. Or very close friend…? I know every woman is different..but? Thanks again for the blog and opportunity to discuss this. All my best wishes for your continued recovery.

    Like

    • Hi Jenny

      Thanks for your comment and reading my blog. I hope it helps you with your decisions and future path in some way. It is such a tough call. But sounds like you have made the first and toughest one – to remove your existing breasts. I do honour you for that part. And for the next bit, I honestly do think it is such a personal decision. A bit like saying I like pink and you like blue – both “right” for each of us, and one does not affect the other. It’s just a personal choice. But a tough one, and not as easy as choosing your favorite colour!

      For me, if I did have to advise a close friend (I would be SO sad if I ever had to have this conversation with my daughter!), I would tell them the pro’s and con’s of mine. And what I know of the implant path is that the recovery time and impact on your body is less. But there is the downside of having to be without your implants for a few months, until the expanders work to create the space for them. For me, I don’t think I could have dealt with waking up to just sacks of skin, even if just for a short period of time. But other women choose this path and it is the right one for them. I also don’t like the thought of having something synthetic in my body, because then I wouldn’t be 100% ME, and that is really important to me (if I get a say in it!).

      I actually think that my daughter would probably choose the implants. She said to me at the time “oh mum, you’ve been through so much. Why would you choose the harder path?”. And one of my sisters felt that’s what she’d choose, while another felt that she’d choose surgery and no reconstruction. We are all different. I don’t know, just something in me said this is the right decision for me. Part of my sadness about the surgery is that I had false expectations that I’d be all healed up and good after 3 months (I wish!) and a bit tired for 12 months. But it has been so much more than that. I didn’t expect the emotional roller coaster and sadness that went with it. I thought I was doing something practical to extend my life, but really, the emotional part took a much bigger toll than the physical I think. It is so hard to do away with such a feminine and personal part of your being, Makes me sad even typing that now. Let’s not forget though that I was also dealing with the recent loss of two sisters, so I’m sure that was tied up in my sadness too. I imagine there are others who did not take it as harshly as me.

      But you do get through it! And it does get better the more you heal, as you will. Love and kindness and understanding are key ingredients to your recovery, so I hope you are surrounded with lots of those! And ask for help. That’s one of the other things I hope my blog does – raise the awareness of the significance of the surgery and recovery, so that when others go through this, there is understanding of how challenging it is to do and that lots of loving support is helpful. But it is do-able. And I don’t think there’s many who regret their decisions. It is just one of those “what doesn’t kill you makes you stronger” things.

      The main thing is YOU do what feels right for YOU. Gather all of your information – from doctors, blogs, people who know all about it. Then sit quietly and calmly and make the right call for you. You are the one who has to go through it all, and live with the end outcome. If you can feel it is the right thing for you (as I do for me) then that is the main thing.

      With love – and trust in you to make the right call for yourself

      Sarah

      Like

  3. Rose

    Hi Jenny,
    I did heaps of research before deciding on having the TRAM surgery. Everyone who has implants says that they are always cold to touch and there just seemed to be more things that went “wrong” with the implant and expander surgery. I also didn’t want expanders, or fills. it would mean a trip back to the doctor every few weeks or so to have fills, and I live a 5 hour drive from my PS. Don’t get me wrong, I’m not trying to turn you off implants, as some girls are really happy with their results too, its just that I wanted natural looking and feeling breasts, which is what I now have. The scars on the breasts are very minimal, pretty much the same scars you have with implants I think. I never had any pain in the breast area, only the tummy for the first few weeks. But now that I am one year down the track, I am so happy I had the TRAM. I have the best and flattest tummy I have ever had in my life! I can actually now wear a bikini, even at my age, lol. My boobs look great and natural, and when I get my nipples (this Thursday) I will be nearly there. I’ll get the areolas tattooed after the nipples heal to finish the job.
    So my advice to anyone would be, do a lot of research, join Pink Hope, there is a lot of great info there and the girls are all happy to help. Then decide what is right for you.

    Wishing you all the best,
    Rose

    Like

    • Hi Rose
      Thanks for your input. I’m sure that will be helpful for Jenny too. And yes, I forgot about that “cool to touch” aspect of the implants. My breasts, while sometimes a bit cooler on the skin surface, are nice and warm with my blood pumping through them now, for the most part.
      Sending love to you for Thursday
      Sarah

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 97 other followers

Blog Stats

  • 20,693 hits
%d bloggers like this: