NED and fantastic medical teams 💕
FLClover
Member Posts: 1,573 ✭
Today I am officially NED 😃🤩🥳🥰.
On the 4 Dec, I finally had my left nipple removed, and today at my post op appointment results came back clear. After my nipple/skin sparing mastectomies in April, it was the last thing that needed removing as it had traces of DCIS. This surgery was supposed to be done in April, but long story short, I had problems with my first surgeon (anxiety and trust issues) and so I sought a second opinion, and consequently changed surgeons. Then, under my new surgeon’s care,I saw a fertility specialist, med onc, had bilateral radiation, and finally two weeks ago the nipple removal, which was done under local anaesthetic at my request. It was in a proper operating theatre, just that I was awake the whole time. And it was one of the most positive and interesting experiences I’ve had. There was no fear as I fully trust my new surgeon. She answered all my questions throughout, and we even had a good laugh about a mole I also had removed. Overall, it went remarkably well and I went home feeling really happy. Sometimes, I feel I have to pinch myself to make sure it wasn’t just a daydream, like I was having back in April and May when I was in my depression, not sleeping well, not eating well, and with heightened anxiety, all caused by my first surgeon in relation to this surgery. The way he wanted it done made no sense, it seemed unnecessarily invasive, I kept being told different things, and I got absolutely no information or support about my cancer in general. Meetings were rushed and there was no empathy or compassion. Also, he refused all other options of treatment I suggested, saying they were not possible.
As soon as I saw my second surgeon, things changed. I immediately started sleeping well
again, anxiety eased considerably and depression lifted completely. I was given loads of info, different treatment options and meetings were long, with detailed and very patient explanations. All my questions were answered thoroughly and there was genuine empathy and care. Polar opposites.
again, anxiety eased considerably and depression lifted completely. I was given loads of info, different treatment options and meetings were long, with detailed and very patient explanations. All my questions were answered thoroughly and there was genuine empathy and care. Polar opposites.
Now, I no longer fear hospitals, and my trauma around surgery has eased considerably. Every time I have an appointment, I actually look forward to it and don’t stress and lose sleep. All my concerns are validated, and decisions respected. I get detailed answers as to why something needs to, or can’t be done. Also, all my suspicions about the things that didn’t make sense with first surgeon were proven right.
I know that this is how it should always be, but unfortunately it’s not. Very definitely not. The treatment I get from my surgeon and her practice manager goes way above anything I could ever have hoped. Seeing them gives me a warm, fuzzy feeling, like the one you get when you hug your favourite teddy bear, or when you’re in front of a beautiful fireplace with a sizzling fire on a cold winter night. The feeling you get when you come ‘home’ 😊. It’s not something you can force, some people just have this gift naturally. I thank the universe that I am lucky enough to have found them (through this forum!) and today to be in this wonderful place emotionally and psychologically, and NED 🥰. And I thank myself that I listened to my intuition, as hard as it was at the time. I have since met many other specialists who are also brilliant.
I know that this is how it should always be, but unfortunately it’s not. Very definitely not. The treatment I get from my surgeon and her practice manager goes way above anything I could ever have hoped. Seeing them gives me a warm, fuzzy feeling, like the one you get when you hug your favourite teddy bear, or when you’re in front of a beautiful fireplace with a sizzling fire on a cold winter night. The feeling you get when you come ‘home’ 😊. It’s not something you can force, some people just have this gift naturally. I thank the universe that I am lucky enough to have found them (through this forum!) and today to be in this wonderful place emotionally and psychologically, and NED 🥰. And I thank myself that I listened to my intuition, as hard as it was at the time. I have since met many other specialists who are also brilliant.
This ride has been difficult to say the least, but considering everything, I really can’t complain right now. I hope the universe continues to look out for me, and to keep beautiful people like these in my life (for prevention of further c, not treatment! 😆). I also wish the same to all you lovely ladies, also on this extremely unwanted ride.
Good luck, don’t rush important decisions, and always listen to your body and intuition, as they know best! 🍀🥰♥️
Mon Xxx
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Comments
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Hi @FLClover this is such wonderful news for you - what a fabulous way to finish off a challenging year.
There is also a very good message for all of us in that we need to be our own advocate while we navigate our treatment options. I too have been incredibly fortunate to be surrounded by a brilliant team of specialists and it has made a huge difference to both my physical and psychological health.
Take care, celebrate this great news and have a lovely Christmas x3 -
Dear @FLClover
Excellent news - confidence and trust makes all the difference! And having confidence in ourselves to say no thank you to one specialist (who may be knowledgeable but fails to engage at that critical level) is vital too. Happy Christmas and the best kind of New Year - a NED one!2 -
Fantastic news, @FLClover .... just the Chrissie Pressie you wanted!
How terrific that you you were able to find a wonderful, caring surgeon .... it makes such a difference to your mental (and physical) recovery, to have trust and faith in your team.
Gosh, you were game to stay awake for the removal of your nipple!!
Have a wonderful Xmas .... make haste slowly as you recover xx2 -
It's remarkable what I difference one individual can make to our whole experience. They can make it a living hell or they can a difficult task doable.
I had similar experiences with oncologists; for me, finding the 'right' one made the difference between embarking on yet another punishing (but hopefully worthwhile) regime and letting nature take its course.
It's so important to understand that we do have choices. It can take some time to grow into that knowledge and not everyone realises that, despite intense pressure, there is nearly always time for a second opinion, and there are nearly always other practitioners who don't make us grind our teeth to stubs at night. Onwards. Mxx3 -
I am very glad you have found the right Oncologist, and you are comfortable and happy.
What is NED? I can't think what it means.1 -
Thanks @Abbydog! 😊.I actually found the right surgeon/consultant. Through her, I found all my other fantastic specialists/oncologists.
NED is ‘no evidence of disease’, which means I am clear of this b**tard bc. Same as remission I guess. I had my last cancer removing surgery two weeks ago, and got my results back yesterday, which were clear 😁😃😊🥰.Hope you’re doing well 😘😘.
Mon Xx2 -
Thanks, now I know.
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@Abbydog The terminology is confusing. Does BCN mean Breast cancer network or breast care nurse? Does BS mean breast surgeon or ........? There are a couple others that I always have to look twice at. NED caught me out at the beginning too.
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I think NED got more popular in order to distinguish between partial and complete remission. Remission is often used to describe a considerable reduction in the evidence of disease but not all gone. Complete remission may be interpreted as complete cure but unfortunately some cancer cells may still be lurking, undetectable. NED is clearer - no evidence of disease.1
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My surgeon actually called it NAD, ‘no abnormality detected’, I think. Something like that, my memory is not the best 👀.Good enough for me 😊.@Blossom1961 I have to admit, every time I see BS I automatically think... . 😆Takes a second to realise what it actually means. Terminology can be very confusing2
