Hello again lovely ladies,
Glad I didn't see you off with the overly long diatribe. I did go back through and edit, but have never been any good at precis-ing! so thanks for sticking with me.
My recon - Yeh, thanks Evie, And Roadrunner, reeeally glad you're pleased with yours. I went at mine with gusto March 2014, as I do with other long over due life importances, when I'm on an "Up", which unfortunately are all too brief compared to the debilitating mental "downs/crashes" as I call 'em, due to being Bipolar. Was determined to embark on and get finished, but went into a "crash". Are umpredictable, and render me incapable of maintaining ANYthing, so everything goes out of the window, hence "falling off the horse" again !!! Have had a couple of attempts since, with 2nd stage implant replacement surgery appointments actually booked, but by the time I've waited on and am near to, further "crashes have caused me to cancel. But, even the initial expanders gave me a massive boost to my confidence. As you said Roadrunner, great to not have to mess around with prostheses, not that they were any trouble tho' being in pocketed bras, I didn't take out only for a bra change. But I hadn't had the experience of getting changed in public and bareing the boobless scars like you must have, either that or using a private cubicle. Recon was important to me, still being single and wanting to also climb on the dating horse, losing the 2nd one having smashed my personal confidence to pieces. I've said before in other places, if I'm not happy looking at myself, I'm sure as hell not happy having someone else looking at me in the intimate bedroom dept.
Roadrunner - I'm interested to hear more about your nipple recon, how it was done, whether otherwise from your existing nipple (me not having ANY) and whether your tattooing has faded, as someone elses did on the "nipple recon" thread. They'd had 3D nipple tattooing as oppo to nip recon surgery with later areolar tattooing. Have a look and perhaps post your answers to me there, 'cos I'm conscious of diluting Charsim's original thread with my questions to you here.
Charsim - I'm massively impressed by your 10K training. Is obviously just ONE of the good things or "strengths" that's come out of your BC experience. WheyHey!!! - good for you girl.
Loadsa love to all of you on here, and anyone else looking in.
Delly - I just wanted to thank you for that lovely post. You made some great points. Wishing you all the best for the next stage of recon. xx
I would definitely get your recons finished, I think it makes such a big psychological difference. I had a delayed recon in 2010 after original surgery in 2007. The whole process took 18 months, including the nipple recon/tattoo, but once it was all done I could move on. I had really hated using a prothsesis, a twice daily reminder, putting it in in the morning and taking it out at night. Plus making sure clothes were cut high enough so it didn't show. And don't get me started on changing at the gym and swimming! Life is so much easier now.
Hi Everyone, I'm soo sorry for this gigantic post !!
First breast 1cm grade 3. ER +ve ductal 2006. 2nd breast another small primary, grade? ER +ve, I found just prior to my 1st annual check up 2007 Both mastectomy + total ANC. 2nd boob was sadly just a month prior to the SNB procedure being accepted in Britain. Still stuck at 1st stage of delayed implant recon op (expanders) since March 2014, 'cos fell off the horse - need to get back on the horse again,get these booby babies finished !
How are you both and how's it going, Char and Futuretwo?
Char - Had you had a lumpectomy initially, or some other surgery?? Did your lovely William enjoy his 5th birthday?
Futuretwo - To pick up on something you said in your earliest post of 7/11, you began with "I am feeling scared and isolated and had to turn somewhere". I could be amongst friends and family, but still felt very "alone" during treatment and for a long time after and exactly the reason I started using this Forum and attending a BC support group. To put me in touch with and to meet some fellow women.
As other people have mentioned, you will gradually begin to feel more confident to make plans again with more "What if nots" attitude, rather than living in the fear of the "What ifs" ". We have no control over it anyway.
It's had a massive impact impact on your body physically, leaving you with the visible scars from a part loss, or total loss of a breast, which of course can be reconstructed to create a new replacement for that loss. Your body actually recovers relatively quickly. But the massive invisible mental scars to your mind can take sooo much longer to heal and regain strength to recover. Unfortunately, we can't just wipe out or erase all the nasty experience, can we.
Much of that recovery, is all about "readjustment" and coming to terms with,isn't it. The effects BC's had on your body, your mental attitude, all of the important in your life things such as relationships, family, work, etc. Also, regaining a trust in your body again (I felt mine had somewhat let me down - What? So I'm NOT an invincible Superwoman after all then), and also rebuilding and regaining that stronger confidence in your future again, where BC's concerned.
I would say it took me about 7 yrs to now just not feel bothered about it any more. That seed of doubt that it leaves right at the forefront of your mind, is constantly irritating at first. Upsets, annoys, niggles, reminds us often of the nasty *bleep* of a disease, so many times on a daily basis for the first year, maybe two or longer, depending on us individually. Very very slowly it starts to settle down and stops nigglin everyday. Then even more slowly and gradually, it gets tiny little backward nudges, until eventually, it's pushed to the back of your mind. You still think about it, perhaps a couple of times a week, but no longer "worry" yourself about it any more. It'll still pop up occasionally, take you unawares, offguard, and may make you a bit wobbly, but it's no longer for very long though. That seed is now tiny, miniscule, because "you've" finally taken back control of your mind instead of IT !!
The whole horrible experience certainly tends to change your way of thinking in many ways. Plus, as Roadrunner again so rightly said, you will find that it has made you stronger in ways you may never have expected, and the old faithful adage "What doesn't kill you, makes you stronger" rings true. Be that you're braver at trying new things, become more adventurous, more active, more outwardly sociable or more extroverted, more confident, take that year off to tour Europe in your camper. Me and mine? I'm a faaar more openly emotional, affectionate, passionate and compassionate person, stick up for myself more, no longer put up with sh*tty behaviour from people, not afraid to speak my mind. Be that about some annoyance, grievance, but much more importantly and frequently, how much I love and appreciate someone.
Char - Your friend who quite insensitively, coldly and unsupportively said "Well, we all have to die sometime" to you, is blatantly right of course. Someone could just press one of those big red buttons, before I finish this post about how we worry about BC, and this half of the globe be blown to smithereens, or some other major disaster happen. Though I'm thinking it may just be massive sighs of relief that this mammooth of a post is nearly ended. Sorry girls.
And finally, again as Roadrunner said ( you're certainly earning some gold stars girl ), and I was saying exactly the same recently on another thread elsewhere, you really DO learn who your true friends are. The good ones will still be there with you, supporting you through the whole of your experience. The really "true" one are those who sit and "listen", allow you to complain, encourage you to talk about your fears, put up with you keep repeating yourself. Provide an ever listening ear and an ever ready soft soothing shoulder. Are none judgemental, but will gently "put you in check, pull you up" if you're getting unhealthily to paranoid level, and just want to bolster you.
I've often said this - I think Listening is such a pure and simple absolute treasure of a gift to receive from and give to someone. And those are the kind of friends you need to have around you. They are the ones that will really help you to cope, even if they haven't been through it themselves. I was lucky to have two of those gems, living close enough by to see regularly in person and receive some big tender loving hugs from, that heal and speak more than any words can.
Lotsa love to everyone,
I think I got your question slightly wrong the first time. This is what my BCN said: 6 is still pretty high, but even with a score of 2 we would get hormones. You have not got me worried, don't worry. There is nothing we can do about our pathology reports anyway - and I am not sure a score of 8 is necessarily better news.
Yes RoadRunner - it's the estrogen in those nast fatty cells aromatase inhibitors tackle, isn't it? Would be nice to understand the chemistry behind it, but I fear it's beyond me :).
Thanks airyfairy yes I wasn't in menopause but was put into it for the anastrozole as it wasn't sure if I could take tamoxifen due to a past issue. Sorry I was curious if being Er 6 not 8 was mentioned I've always worried if it was still a high score for a good response. I have to say I have been reassured it should be but most people I see are an 8. I am a born worrier though and I don't want to worry you just wondered if it had been mentioned to you. Thanks.
Oestrogen is produced in different ways depending on whether you are pre menopause or post menopause. Tamoxifen acts on oestrogen however it is produced, so it suitable for any age/menopausal status. Aromatase inhibitors block the method of oestrogen production in post menopausal women, but does not stop the ovaries producing oestrogen, so is unsuitable if you haven't gone through the menopause or if you are not given injections to stop your ovaries wrking.
Yes I am grade 3, as well :(.
I get zoladex (as I am strictly speaking not menopausal yet, so they make me 10 years older artificially 🙂 ) and exemestane, which like yours is an aromatase inhibitor. They are supposed to be more effective than Tamoxifen, though don't work in premenopausal women for some reason. As for the effectiveness altogether - who knows - I suppose none of us is really safe, but we just have to hope for the best. NHS online tool predict can tell you more about the effectiveness of hormone (endocrine) therapy - if you want to know that is, they give you a 5 and ten year prognosis based on your personal data and tell you with a coloured bar what helps and how effective it is.
Hope that helps x
Hi I'm stage 2b 2nodes and grade 3. Are you grade 3. Can I ask has the effectiveness of hormone treatment being Er 6 as I am been discussed. I'm talking anastrozole. Thanks .
I have read posts on this forum for a while but only now started to actively post, so I guess I am one of the newbies, too (stage 2B, ER6, PR5, HER2+, 28 mm, 1 lymph node involved - so a middle of the road diagnosis, could have been better, could have been worse). Like everybody else here I have good days and bad days, but generally I feel it's getting better (5months from active treatment). Work and exercise have helped me most - and I do not mind badgering my GP (who luckily is very understanding) with any aches and pains :). Onwards and upwards, eh, ladies? We have gone through so much already, we will doubtlessly manage to get through our post treatment anxieties, as well. x
Hi futuretwo I'm new on here diagnosed last November with aggressive Grade three in two nodes Er 6 I'm 49 and emotionally still struggling I'm trying so hard to get a grip on this. I wondered what you're original diagnosis was as your posts remind me of me and help me feeling not alone or silly for not coping x
Thanks for remembering me. I'm still here, bright-eyed and bushy tailed, just chilling out and taking one day at a time like we advise the newbies (no good talking the talk if you don't walk the walk is there?) x
Hi Roadrunner - Thanks for ref the 10 yrs ago. Didn't know that. Obviously hadn't been mentioned to me then, but thankful I found it when I did, 3 yrs ago. Hope you're still keeping well.
Hi to Feisty and Maryminder - Hope you're both well too
Just read your post and found it so positive, I was diagnosed last July (stage 3 70mm cancer, 3/14 nodes er+), I have struggled since active treatment finished in March but have found exercise, swimming and talking to others in the same situation has helped. the article you mention is certainly worth reading and we were all given a copy at the Moving Forward course I attended.
I am slowly moving forwards but I do find myself putting my own feelings aside so others feel better, one day as you say the black cloud will be relegated to it's place in my mind and not ruling my life.
Hugs and Best Wishes to all
I felt that finishing treatment was a bit like having my safety blanket whipped away and being cast out into the cold. People have lots of different ways of coping as you will have noticed. In practical terms I was very surprised to find comfort and solace in the Buddhist philosopy, it has made me a much calmer person. I also practise my own shorter version of the Emile Coue chant (you can look him up on the internet), I say to myself "every day I am fitter and fitter" and "every day I am healthier and healthier". It may or may not work but it does help to keep me in a positive frame of mind and I'm certainly not going to tell myself the opposite! My children are grown up and I too used to be a terrible worrier but my only regret is that I didn't focus more on the 'now' when they were young because children grow up so fast.
It is very common to feel worse, emotionally, after treatment has ended than during diagnosis and treatment. In fact I'd say it's unusual to feel better in the immediate aftermath. There's a well known article about this by Dr Peter Harvey - it's been around a long time now but still holds true. I recommend reading it, and showing it to others (I gave a copy to my boss after my treatment ended). Google 'Dr Peter Harvey after the treatment finishes' and you will find it.
Re other people - unfortunately it is a common myth that once you get to five years you are 'all clear' and everything is just fine and dandy. The media perpetuate this by regularly using the 'all clear' phrase re breast cancer. Sadly we all know better. Also, friends want you to feel better, so they tell you all the good stories hoping to cheer you up, when in reality you want to scream at them 'but I could die from this and you're not taking that seriously!'
It takes time to stop thinking about breast cancer every day, and to stop worrying that every ache and pain means it has come back. The worries fade slowly over time - it's not something that happens overnight - and I suspect they don't ever completely go away, but they disappear sufficiently so you can live life again without a black cloud hanging over you. In fact, for many people there are positives that come from it - you find out who your real friends are, you make more effort to live in the day and enjoy each day for what it brings, you perhaps make more time for yourself to do the things you've always wanted to do.
For the record - I am ten years on (grade three, 3/16 lymph nodes, HER2+) and yesterday I met with a friend who is 17 years on. We're all out there, quietly getting on with our lives, watching our children grow up, having fun.
BTW Delly - this forum definitely existed 10 years ago as I was on it then!
Hi to All
I finished treatment in June and can very much identfy with what Futuretwo describes - so a huge thank you to all you lovely ladies who have commented to pass on your experiences and advice.
Hugs to all but especially Futuretwo.
Hi Futuretwo, and a very warm welcome
I think we all relate to what your saying and feeling. With ref to what other people come out with, as I mentioned further below, used to really get my dander up too. I try to bite my tongue more and stay calmer these days, thank them, but I do feel it's important to educate them more gently. From a different point of view, it used to really, really get me when still being single and no boobs, people said "You'll find someone who loves you the way you are". I used to make a point of letting them know, that if I wasn't happy looking at myself, I certainly wouldn't be happy with someone else looking at me, especially in the bedroom debt. I know they were just wanting to "try to make me feel better", but all those who said it hadn't had breast cancer and two mastectomies, and were either married, or in a long term relationship. But I'm slightly better about that now, being part way through recon, which gave an immediate boost to my confidence.
I felt very alone in what I went through, with immediate family and friends, but better when I found other women to speak at a local support group, although all much older than I, and most married. I felt even better when I started using this Forum, 3 yrs ago. Wasn't around when I went through my BC 2006 and 2007. Girl do I wish it had. Immense source of support, help, advice from others. There's always someone who's experienced the same thing. Plus a friendly bunch of lovely women, many of them very inspiring. Maybe there's a support group near you - can't beat meeting other fellow women to chat, share with and befriend.
Afraid I can't say "all those feelings will go in a year" though. Am just being honest. I used to get upset around yearly checks, because it can tend to throw up a lot of associated emotions and doubts again, when your life's started to settle and your mind forget. Year 5 and still nothing found was a milestone for me and tears of relief that I was going to be signed off from regular checks (But the medics are still there should anything else arise. I get terribly upset for other people though, newly diagnosed, and occasionally hearing about someone who's develop secondaries, when they may have been clear for some time. It'll likely shake you again.
But, you just have to have faith, Futuretwo, keep trying to think that won't be me, I'll be okay. Because if you don't, you'll be spending your life living in fear, which isn't really "living".
I still think about BC, because my body's scars remind me daily, but I don't "worry" about it anymore, don't fear for my tomorrow because of it. I'm always sensibly vigilant though (vigilant's a favourite word of mine), if anything crops health wise, that could possibly be related. But not to the point of being psychotic about every twinge, or stomach upset. Just sensibly. There's a big difference. And I've always found my GP likes to be vigilant for me too, so responds very quickly.
You weren't "going on", if the length of most of my posts are anything to compare!! (Am a bit reknowned for!!).
But do. You go on all you like. Make good use of this Forum, Futuretwo. It'll help even though it is just through the ether. Quite a brilliant godsend, by whoever came up with the idea of it.
Sending you a warm hug.
Love to all of you xxxxxxxxxxxxxxxxxx
I'm two and half years on from treatment now and things do get easier, I can't say I'm totally over it all but the feelings of dread and gloom have certainly lifted and I can plan ahead and genuinely feel like I will be here!
Having recently welcomed our first grandchild I'm overwhelmed with emotion and have allowed myself a moment to think of how different things could have been but then I pulled my socks up and got back on with enjoying her and planning all the things we will do together over the years ☺️
The joy will return to life and gradually you will begin to make plans and have fun again, we don't waste a minute now and cram as much as we can in to our lives and appreciate every day with our loved ones Xx Jo
Well futuretwo I can't catagorically say "In a year or two these feeings will go", 'cos I'm only 11 months on from my surgery and 9 months on from the end of active treatment, but I can relate to what you say about looking ahead and I can say the feelings will probably change over time as you adjust to "life after bc". Once I'd had the holidays that were already booked before I knew I had breast cancer, I dithered a bit about booking ones for next year, but then gave myself a bit of a talking to and went ahead and booked anyway, even though I'm coming up to my first annual mammo after diagnosis, which most of us find a bit of a tricky time emotionaly from what I've read. Even if something new is found it'll get treated the same as last time so I won't be shuffling off the mortal coil even then. But it is all a bit of a process as the time goes on and gradually you will find you aren't thinking about bc every day.
Yes, people can say the most stupid things sometimes - probably because they just don't know what to say and want to help you be more cheerful 'cos it helps them cope! I think we have to accept that folk can't really know what it's like to have had cancer treatment unless they've had it themselves and rather than expecting people to say the right thing, I tend to not discuss it unless anyone asks how I am and then I tell them I'm fine, because i am! But life is always going to be a little different after a bc diagnosis, even if it is true that we probably aren't more at risk of dying than our sisters who haven't had such a diagnosis - (actually I tend to think the odds are a bit more in our favour since we get annual monitoring now!)
Glad you've found this thread - you will find a wealth of info and support here. xxxxx
It's strange when you finish treatment because you'd think you'd be happy and relieved. The reality is though that the fear and panic is still there, but no one is there to help. We do know what you're going through. We've all had the same feelings. I'm one year on from active treatment, and I can honestly say to you that it does get easier. I no longer wake up with BC the first thing on my mind. In fact, I can almost go a day without thinking about it. Life does carry on after BC, I promise. We are always here on the forum to lend a listening ear.
Unfortunately people can say the most annoying and insensitive things. They are trying to be empathetic, but it can come across as ignorant and self centred. You learn to take it on the chin, and surround yourself with people who really care.
Please come and chat whenever you need to.
I picked up this thread today as I am feeling scared isolated and had to turn somewhere. I too have just finished all the treatments recently. What is apparent to me (and others may relate to it) is other people's poor understanding. The assumption nowadays that all breast cancer can be cured, that now the treatment is finished life is no different to if you just had a bunion removed, or insensitive comments like 'we all are at risk of dying at any time' comments. Yesterday a friend said this last comment to me when her mother died just a couple of months ago at the age fo 94 and my friend is mid 50's and perfect health how does that qualify her to even comment on what I may be feeling!!!!!! The thing is she just dismissed me as being negative which just makes you feel more isolated and not understood and a failure for not being more upbeat! My husband seems to have come to terms with my increased risk of dying now but mention HIS mortality and he can't cope. My life feels like it is taking place behind a glass screen now. Granted I am a lot calmer now than in the really early days but it is there in my thoughts when I wake and when I go to sleep. Any conversation during the day about long term events just trigger in me the immediate thought of 'will I be around then'. I would be interested in hearing from anyone who feels the same or can relate to it all but especially from someone who has experienced the above and can now say to me "do you know a year on all those feelings will go"
Cor sorry for going on!!
Awwww Treeze, flippin 'eck, I was only thinking about you, and your Dad, the other day and wondering how you are?? So good to see you flower.
How are you doing?? Good in health I hope. But know you'll be missing Dad. xxxx
Late in picking up your response Char. Having a prob with no notifications at the mo'.
Have you now finished your chemo?
I no longer worry about BC coming back. Taken me a while to reach this. But then, I don't have others to consider, husband/partner, children and other family.
Up until recently, I used to respond very reactively with anyone who said "So you're now cured then" with the likes of "It's impossible for anyone to know whether stray cells that may have spread prior to treatment, or escaped it, are lying dormant elsewhere, and may spark off 2ndaries at any time".
Thing is, we can't do anything about it coming back, can we. So my way of thinking now is - I've had it and as far as I know it's gone, so carry on as if it HAS and as if I'll never get it again. If it does recur, it's tough, I'll just have to deal with that if and when.
Hope Williams 5th birthday was a lovely occasion. I'm sure it was. xxx
Char - Hi and a huge welcome and massive warm embrace from me.
My Darlin girl. You are to be applauded and saluted, for everything you have been through and suffered. Yep, "suffered". I can't tell you how sorry I am that you're here, joining this myriad of many other, quite frankly, wonderful fellow women. But, believe me, I am NOT sorry that you have taken a good positive step for yourself, by bringing yourself here.
You have the added heartache, but also the absolute "joy" of a beautiful 4 yr old son. What's his name Char??
HE is going to help you stay strong and fight. Along, as I'm sure, are your husband/partner, all the rest of your family, friends, your medical team, and. . . . everyone here, in whatever way we can to support you. As you've already found out, this is a great place where you are free to be able to air and speak your fears. Where no-one thinks you're over-reacting, because we've also been there, There's pretty much someone on here, who' s been through all the different aspects of this gawd awful disease, and recovered, or are on the way to.
It's all so easy for me to say, but please take hope and strength from just that fact - there are sooo many women on here who HAVE come through it all, recovered, and plenty who are still here on the forum, simply because they wish to support other women going through the same.
I wished I'd found this forum, when I was going through it all 11 yrs ago. Don't know if it was going then?! I'd have loved to have interacted with others experiencing the same.
Please also take strength and hope from all the constant, massive advances in treatments and surgeries.
No one expects you to be strong all the time. Please don't ever feel you're being weak if you are struggling. NOone here wants you to struggle. What you're dealing with, and are getting through, is not anything any person would wish upon themselves to have to cope and deal with. Also, some things aren't always easy to speak about, or understandable to someone who hasn't directly experienced it. But where so often someone on here someone can and does understand, because they have experienced it and, more often than not, can give you some friendly, helpful advice and support, as you,ve already found. Or even just give you a cheerful laugh or giggle that can make a change.
Make good frequent use of it, when you can, Char.
Much love to you
Welcome to the forum.
Good question! Not sure whether I am always positive......I think we all have good days and bad. In order to move on, you have to assume all the treatment has worked and the hormone therapy will prevent a reoccurrence. Why do you think that the risk is high? Have you had a mammogram yet? Because that will reassure you. It takes time to get over it all and it gets slightly easier as time goes by.
Come and chat here anytime, as it always helps.