4 years on – progress

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My art practise continues. I’ve taken up ceramics now too, and I love it!

I’ve hesitated about writing this post, because I think it might be boring for some long time readers. But then I think that maybe by reading it, it will help someone to make a decision about their options, or help someone to be better informed about what to expect in the healing process, so I’m writing this with them in mind.

4 years on from the first major surgery, here’s how my body is faring…. in a word, it is doing well! The pressure I’ve felt on my abdomen is way less, my torso no longer has that twisted feeling. It is much, much better! It does still feel slightly tight. I don’t have feeling on a good portion of my stomach or any part of my breasts. I can’t feel anything that touches those areas, but I can feel pressure. Maybe the healing happens from the inside out, so you can’t feel anything on the surface, but inside, new nerves are growing and mending. That’s what I hope anyway!

Appearance wise, the scars are well faded. You can still see them, but they are fine white lines. There are a few ridges around the scars but nothing too worrying. I still can’t wear a proper bra, as they feel too uncomfortable, so I stick to light crop tops or a maternity bra, which is softer than a regular bra. You can find some nice ones nowadays!

Other than that, my breasts look great, probably better than pre surgery. They are fuller and rounder than before, my stomach is flatter. I have helped the healing process along with regular exersize sessions with a personal trainer a couple of times a week this past 12 months. That has helped strengthen my core, regain flexibility and take off any excess weight. So, appearance wise, I am very happy with the outcome. My surgeon, James, did a fantastic job.

Would I make this choice again? Definitely. It’s hard but it’s worth it. I read on the weekend that some implants (perhaps only ones used for cosmetic breast surgery?) are causing cancer. I am relieved I don’t have to worry about any of those sorts of complications or future surgery. It always felt right for me to go with the option where I used my own tissue to rebuild my breasts. Others will make the decision that feels right to them. I am fortunate to have been able to afford the more invasive surgery too.

In an emotional sense, I am still coming to terms with all the other unexpected changes in my life. I don’t think I have any lingering or unresolved emotion about the surgery. If I ever start a new relationship, I am sure there will be a few “issues” in trusting someone, physically and emotionally again, but I’ll deal with that if and when it happens. It just takes time, and a willingness to deal with it all I suppose.

I love the new place where I live in Queensland. Every morning I wake up and say, “thank you God” for the peaceful, beautiful place I live. I love being able to hear the sounds of the waves outside my window. (Who knew it was so soothing?!) I miss seeing my children every day but they are well settled in new homes in Sydney with their friends (and loving it!). We see each other often with flights back and forth. I love having them to stay. It is great to spend good quality time with them and we stay well connected in between visits (hooray for the iphone!).

I am reading a book about a man who loses his girlfriend at the same time their first child is born, “In every moment we are still alive”. It speaks of another man who is asked, following the death of his son, “The grief you are feeling now, would you exchange it for never having known Johannes at all?” It is a good question to ask yourself after a loss I think. Would you take the pain away, if it meant never having had the experience of love in the first place? Better to have loved and lost, than never to have loved at all. True. The gain is worth the pain. I think that about my surgery too – very hard to do but WAY better than having cancer or living with the fear of it. Way better.

Sending love to all readers – those I know and those I don’t. If you are considering this surgery I send you special love. If you know someone about to go through it, or who has been through it, thank you for taking the time to learn about it. I hope it helps inform your decisions and expectations.

9 responses to “4 years on – progress

  1. John Bailey

    A good, thoughtful constructive essay, Sarah. I’m so glad to know that life is good for you. Much love, Dad XX

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  2. Rose

    HI Sarah, Great to know you are doing well. You are a year ahead of me, I had my preventative double mastectomy and TRAM Flap recon 3 years ago, nipples made a year later then the final touch of tattooing the nipples. I’m also very happy I made this decision as I no longer think of breast cancer. I’m BRCA1 and breast cancer has taken many members of my family. I love my new breasts, its only my tummy that still feels very different. I still can’t eat big meals, which is probably a blessing in disguise, as I love my food, haha. If I eat too much, I get a very bloated and sore stomach. So good to know you are happy, Queensland is a beautiful place, I live in Hervey Bay and love it. I hope you find love again one day, you definitely deserve to and more than likely it will happen when you least expect it. Take care, regards Rose

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    • Sarah

      Hi Rose
      Lovely to hear from you and to know that you are progressing well too. I remember that “full” feeling – mine did settle down after a while and hopefully yours will too. Thanks so much for your kind thoughts – gave me a smile. Here’s hoping for many sunny, happy days ahead for both of us.
      Sarah

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  3. Janine

    Thankyou for your blog Sarah;

    I came across it while researching LCIS which I was diagnosed with a few months ago. My mother had breast cancer but is well twelve years on and we don’t have those breast cancer genes. My specilaist is following the line laid out on this website http://www.stopcancerfund.org/p-breast-cancer/dcis-lcis-pre-cancer-and-other-stage-zero-breast-conditions-what-kind-of-treatment-if-any-is-needed/ i.e “Women diagnosed with LCIS may question why no treatment is necessary, but experts agree that LCIS is a condition that should be managed rather than a disease to be treated.” I was told that the risk of breast cancer for women with LCIS is 1% per year over that of the average woman, so taking tamoxifen or Evista would reduce risk to 0.5% a year over that of the average woman. See also this website –
    https://www.drsusanloveresearch.org/lobular-carcinoma-situ-lcis

    Do you know if this was the thinking around at the time you had your surgery; maybe you knew but went ahead anyway. I see your decision was made not long after your sister passed away from breast cancer (my sympathies to you and your family) so maybe emotions were heightened? Or perhaps it might be more recent thinking following research and so forth….I am guessing you might still be glad you had the surgery now that time has passed and healing has taken place – but would you still recommend your past self to proceed given the pain, discomfort and so forth?

    My best wishes for your continued healing.

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    • Hi Janine

      Thanks so much for making contact and for all your information too.

      I understand that the risk of progressing to full breast cancer when being diagnosed with LCIS is still relatively small. However, the risk is heightened when you also have a family history. As well as my younger sister Martha, who passed away as you know, also my mother has had it twice (and is still with us, thankfully) and my maternal aunt passed away with it too. In addition to that, I had other indicative cell changes such as “flat epithelial atypia” which are further indications of increased risk. I wrote about that in this post: https://watermelonheartsblog.com/2013/08/21/lcis-lobular-carcinoma-in-situ/#more-125

      I also used this breast cancer calculator http://halls.md/breast/risk.htm which put my risk of developing breast cancer at over 85% in my lifetime, once you took into account in those extra factors.

      When I was initially diagnosed with LCIS, the doctors at the Sydney Breast Clinic also initially suggested that I just “watch and wait” and perhaps, go on Tamoxifen. I know this drug really did not react well with Martha’s body. Once I had done further research and had discussions with several breast doctors and specialists in Sydney, I made my decision. All of the breast specialists I met with agreed that if it were them, they would take the same course of action. I just found the email I sent to the Sydney Breast Clinic and I will forward it on to you too, as it has a few more links in it.

      I think the most important thing to take into account is the family history and LCIS. Combined, these increase your risk. I have had genetic testing and do not have BRAC1 or BRAC2 either. The doctors think we have an as yet unidentified genetic link for breast cancer.

      Definitely my decision was influenced by seeing Martha suffer as she did with all the treatment and surgery over the years, as well as the dreadful fear of more cancer appearing or new tumors being found. When I discovered my risk was heightened, I thought “There is no way I’m going through that!” Nor did I want my children to suffer the distress I’d felt as I watched Martha endure it all along the way. I think if I hadn’t experienced that, then I would probably had just waited to see and monitored closely. However, I felt that I did not have the strength to endure all the Martha did over the years, even if I survived it, so that’s why I chose the mastectomy route. I felt I was lucky to be given the early wake up call, which Martha was not fortunate to receive. Mine was a radical decision I know, but well considered, and influenced by seeing the dreadful impact of cancer treatment on my sister and those who cared about her.

      I hope that helps with your research and conversations too. Your situation may be different to mine. The only thing I’d advise is to make sure your conversations and investigations are not about LCIS in isolation, but about LCIS alongside a family history, even if BRAC1 & 2 are not present.

      I’ll forward you the email now too and send you best wishes as you research the best options for you and your situation too

      Sarah

      Like

    • Sarah

      Hi Janine – I just tried to email you but it has bounced back. If you’d like that further info, you can email me via the ‘contact’ tab at the top of blog page and I can reply to you that way.
      Sarah

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  4. Janine

    Thank you very much for your quick reply. The calculator is very helpful. With 85% risk your decision makes sense to me now. Again, thank you for your help. (My email address was missing a number but don’t worry, the information you supplied is enough and I don’t like to give my address online).

    all my best for your continued good health,

    janine

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    • Sarah

      Thanks Janine
      I hope the info provided is helpful. If you email me via the contact tab, your email address is not visible to anyone but me on receipt of your email. I’d be happy to send the extra info if you want it.
      Wishing you well with your investigations.
      Sarah

      Like

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