Hi - I realise this thread is from last year, but I would really like to know how Sarah66 is getting on. I am awaiting my PET results for a lung tumor. But it is only 4mm in diameter, so my Onc doesnt think the PET will pick it up. In which case I'll have to wait 6 months for another CT scan to see what has happened to it. I would be very interested to know Sarah how you are doing and what has happened in your treatment etc since last year. I sincerly hope you are doing well and send you lots of love and good vibes!
Lemongrove, if you read this - you are inspirational. I've seen many of your posts and it would seem you have the strength of an army! Thanks for always taking the time to give people true and lengthy answers.
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Hi River Girl,
I'm so sorry that you are having this stress. I totally understand. I was diagnosed May 2011, and am well on my way to getting my life back together, but they have done a CT on me and found a lump in my lung. Have just had a PET scan to see if it picks anything up from it (ie. if it is definitely the big C spread to my lung), or if I have to wait 6 months to have another CT and see what the lump has done in that time (ie. spread, grown, shrunk, dissapeared?? who knows). The waiting game is absolutely horrendous. I'm going mad inside. The thought of operations, or chemo or any of that stuff is terrifying to me. I know it must sound crazy, but maybe you'll understand, but I dont want to bulk up again, I cant stand the thought of losing my hair again, of losing my identity. I only just got me back, with a lot of hard work.
If they tell me that I have Mets and i have to have chemo, right now, I dont think I have the strength to do it. I imagine these are the things that you are thinking about too. You are not alone. This fear will have been experienced by so many people on this forum. I wish I had a magic wand to use on all of us. I hope you are ok. I will bookmark this thread and keep checking to see how you are getting on. I hope for your sake that your scan comes back clear and that there is some other reason for your symptoms. I have everything crossed for you.
Makes you wonder tho doesn't it, what the hell did we do to deserve this?
PS. OMG do I have the runs too... for two weeks so far... my insides are spontaneously combusting, whilst I have to maintain a calm and smiley outside for work. I feel like going to the top of a mountain and screaming. Not quite sure how that'll help, but I'm sure it would release some of this worry and frustration. Its so hard to be going through this uncertainty around the people you love, because as hard as they try, they just can't understand. Plus, they tend to get very upset too, so then you dont want to make them cry. So you just hold it all inside. Well, thats what I do. I don't think its very healthy!!!
Anyway, I could waffle on for hours, but i am actually at work so had better go. My thoughts are with you. xxx
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Hey Sonja - how are you feeling this week? Been thinking about you, hoping things might have improved a tiny bit? Or is that just wishful thinking?
I'm waiting for CT scan results - get them a week today... it has sent me to some dark places since having the CT, my mind is exploring every possible result/outcome.
Whats going on with you?
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The 'you could get run over by a bus tomorrow' or 'it could happen to anyone, just because you've had cancer doesnt mean you're going to get it again, even I could get cancer before you do' comments do me in. Yes, they are both true, but they really REALLY don't make you feel any better. I have not got secondary mets but live in fear of them, I'm only two years from initial diagnosis, and don't feel confident in my body at all. I just had an upper body CT scan to see how my lungs are doing. I have 'multiple nodes' which they are not sure about. Could be 'inside freckles' could be cancer. If they have grown since last years CT then thats that. If they have stayed the same size, who knows what they'll decide? Maybe I'll have to go back next year, and the year after that and on and on? Its so scary.
To all you ladies with secondary mets, i send you my love, and sympathy (but not in a patronising way) - I hope that you are finding a way to live with your diagnosis. I genuinely don't know how I would handle it. Good days and bad days, right?
Hands up if you are sick of pulling all your inner strength out the bag on a daily basis!!
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PS. Forgot to say - about 3 weeks after I'd finished Radiotherapy I went to a Yoga/Relaxation retreat for three days. (initially I was looking at places like The Priory... so you can imagine what my state of mind was - I really do understand how you feel!) Anyway, it was in the countryside, with really good people running the show. I needed to get away from the same four walls of my house which I had spent A LOT of time in (as I'm sure you have too), and do something that gave me some real quality 'ME' time, and even though my energy levels were poop, the whole weekend was amazing. It honestly helped me so much. Yes, it wasnt too cheap, so its not really affordable to all, but I'll put the link up of where I went and you can have a look. And, I'm sure she won't mind me saying, but to add to the brilliance of this wonderful place, the lady that runs it (the yogo, the meditation etc) also had BC a few years ago so she really understands. Must pre warn you it was a 'raw food' retreat, so although very nice, my bowells weren't that keen!!
I cant sing their praises enough. I really found some small pieces of myself again when I was there. They have a few different retreat weekends so be sure to read up and chose the right one for you. Of course you could live miles and miles away and this wouldnt be suitable for you, but maybe you could find something similar in your area?
I've put a link on here with the course I went on.
Virtual hugs. xx
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Oh how I know how you feel. I was diagnosed May 2011, had mastectomy/lymph node removal, fertility treatment, chemo, radio - then a hellish 'break' (ie back to work - very hard) for 10 months before double reconstruction. Have just had nipple recon two weeks ago, and in three months time will be getting the nipple tattoo to 'complete' the surgery. So the journey just goes on and on.
I don't know your situation with regards to if you had a mastectomy and are considering reconstruction - is that still to come for you? Everybody's journey is different, but I bet we all come out with the same feelings of hopelessness and depression. Some may only experience this for a week, some for a year, but we all get it - i feel I can say that on behalf of us BC ladies!
I am quite a bit further along than you with treatment being further behind me, and I can guarentee you that as time passes, you do start to come to terms with what has happened. I often feel that nobody understands me, or the way I think anymore. And the only people that do are the ones who have been through it too. The attitude of 'its all behind you' and 'you must be so happy its over' and 'how brave of you but you've fought it' - it all comes from a good place, but its just not helpful. Most of the time, you just want someone to say 'you've had a sh"t time haven't you, is there anything I can do to help?' - that would actually be of some use to us!! (Yes please, it would be so helpful if you could you cook me a couple of freezer meals, or yes please, would you kindly wash my bed linen - i haven't the strength to do it this week etc etc).
Even when you are a year down the line, and you've got your face on, and your dressed up and going out for lunch with your friends (and yes, I know you probably can't believe that will happen again, but it WILL - I promise), even then, you sometimes need to have someone acknowledge that you are still a different person than the one you were before. Not worse, not better - just different. And you could do with some support. Don't be afraid to ask.
What you need is to believe in yourself. Believe that you do have inner strength which will keep getting you through these dark days. You've got this far through it haven't you. That is testiment as to what you can endure. I hope you are talking to someone about it - I still see a cancer specialist clinical psychologist, organised by my Breast Care Nurse. Its only once a month, but I find it invaluable. She really does understand. Speak to your BC Nurses maybe?
The truth is once you've had cancer, you cant 'unhave' it. It'll always be there. But you do learn to live with it. Plus, your body has been through the mill, so you are bound to feel terrible right now. It is still such early days for you, I was an absolute mess mentally and physically at the point you're at now. Believe it or not, I am feeling pretty OK these days. Sometimes I'd even go so far as to say, I'm really on form. So it can happen.
Be kind to yourself, allow yourself time to go through this period and I know, I've been there, its bl**dy hard. Its that never ending bucket of patience we are supposed to have, because of that annoying 'time is a healer' statement. But you know what, I wouldnt have believed it, but things have brightened up, and the dark days don't come half as often, and I would say that in the last 6 months I have really begun to enjoy life again. I still have days that drag me down to the pits of desparation, but I wake up the next day, and somehow, just carry on. And, some days are, believe it or not, good. Actually really good. When I was in your shoes, I couldnt even remember what that felt like. But please have faith, in time, you will start to heal, inside and out. Frikkin 'Time'. Fast Forward button pleasssssseeeee!!!!
Incidentally I was on antidepressants and antianxiety drugs all through my treatment, and continue to be on them today. It may not be the right path for you, but I agree that you must talk to your doc and see what they would suggest for you.
I feel like I'm waffling, but want so much to give you a virtual hug and tell you everything will be fine. It won't be fairytale fine, life is not that kind! But, you will find some light again, you will.
Love Tammy xxxxx
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Thanks guys for your time in responding. I hope there might be more ladies out there with some nipple (or nubbin) stories to tell... I'm still pretty worried about them. Now it is two weeks post surgery and one has shrunk quite a bit, and has gone all mishapen, and the other is standing strong and proud, and doesnt look like its going anywhere!
Although I have to say, my very kind friend (who has all natural boobs) showed me her nipples yesterday, and she has sticky outy nips that are quite big, and I wouldnt have thought anything of it if I'd have seen them so I guess everyone is different, and perhaps I just can't get used to something that I personally didnt really have before. Unless it was cold of course!
Anyway. More stories please, if there are any out there...
lots of love
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My back still feels tight at times, especially if I have been standing for a long length of time, or sitting/sleeping in a funny position. But the new normal is probably what we have to accept, as if I think about it, it always feels that way, I have just got used to it. And anything more than that will be a bonus.
However, I may not be a good person to ask as I only had my recon in Nov 2012, so its only 6 months old therefore I can't speak for the long term effects. However, my goodness does it sometimes have a scratch I just can't itch. Loubel - I so know what you are talking about there. Its so weird isn't it!!
I'm just dealing with new nipples, but thats a whole nother story!!
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As the subject says, I just had nipple reconstruction last week, and they are very big, I asked for small, subtle ones, and these are like 1.5cm tall and 2cm wide. (Well one is, the other is somewhat smaller!) This is freaking me out, and making me very upset. My surgeon insists they will shrink by 50% by the time 3 months has gone by (in time to do the tattoo I suppose). Even then, even if they shrink by 50% I think they are too big. I had just got my confidence back after double reconstruction surgery, and now I feel ashamed of my breasts again. Please, someone tell me they had a similar experience, and that they shrank and now they are happy, otherwise I think I might have to ask them to just take them off altogether. If that is possible?
I'm so ashamed of them that I can't bring myself to even show my mum, let alone my boyfriend. Its taken me ages to get my confidence back, and I'm so upset that it feels shattered again. I need to know what other people went through, good or bad, to manage my expectations. I need to know what is normal?
We all know how managing expectations is something we would appreciate more during this whole process. Don't we just get piecemeal information all the time, and I don't know about you, but I've had the rug pulled from under me on a number of occasions. I've thought one thing, and out of nowhere, its another thing I have to get used to.
Don't know if I'm making any sense, but if you're out there, and can share your experience with the recon nipples, I'd be so grateful.
Lots of love to all.
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Well done to all. I know exactly what you are going through. I put on 2 stone by the end treatment was finished. Got my last herceptin in two weeks, but still on Tamoxifen (which apparently has the side effect of 'weight gain' - how rude).
I've already managed to lose 19lbs since January, but its been a long old slog, and I've still got a way to go because I wasn't a great weight when I got diagnosed. I'm having reconstruction surgery in 3 weeks, so I don't know if I'll put weight on during recovery, or lose it? I'm going for healthy eating, no pizza, no chocolate, no booze. Sounds boring, but I'm sick of feeling fat frankly.
After everything we've been through, why are we left with this problem? It just seems SO unfair.
Plus I'm hating my hair regrowth, I just look like Pat Butcher at the moment. Going through a very unpleasant phase. But you just got to keep on keeping on, right!?!
Lots of love. Keep the weight loss going. I'll join and post when I can, but I already owe £19!!
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Thanks very much for all your replies. I know I am not the only one suffering with the waiting game. Sometimes its just good to hear you are not on your own.
Nottsgal, I know exactly what you mean about being told information too late in the day, when you could have done something about it much sooner. I guess they are always just taking one step at a time, and I suppose them asking you to lose weight after everything you'd been through may have stressed you out when you needed to just rest and recouperate? I don't know, I always hope there is an actual reason for these things. Wishing you the best of luck for the last bit of weight loss (well done on the two stone, that is a real achievement - how on earth did you do it in such a short time? I'm on weight watchers, but find i'm good one week, and bad the other, so one step forward one step back. I'm not getting anywhere!), and roll on February I guess.
Even though I'm seeing my surgeon on 6th sept, I have no idea when surgery will actually be, so i just keep my fingers crossed that there isn't a long wait. I feel I might go a bit mad if there is!!
Lizdeb, I know exactly what you mean, getting away would be amazing, but I have to work (boo), and my boyfriend left me a few weeks ago, so I'd have noone to go with!! Life is just super isn't it!!
Thanks again for your posts. Thanks Lucy for giving me the number for the helpline, I may well use it soon!
Will update when I get any news after 6th!
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Wow, am I getting frustrated!! I feel like life is one loooooong waiting room, waiting for herceptin to finish, waiting for my surgery date for reconstruction, waiting for my clinical psychologist report back, and to know if it is going to be in my favour... Can't even begin to imagine how I will feel if it comes back saying I am not of 'sound' mind and shouldnt be making these kinds of decisions yet. (To explain, I'm opting for mx and recon on my healthy breast, as well as recon on my already mx side - I have my reasons!). Lets not even go into all the waiting room moments I've had over the last year and two months! You will all know what I'm talking about there.
I know I need to sit back and relax, and just wait patiently for things to happen, but as most of you will know, having BC is a long journey, which for me started May 16th last year, when I found my lumps. So from all the biopsies, surgery, fertility treatment to store eggs, chemo, radio, herceptin and tamoxifen, I'm ready to have the 'light at the end of the tunnel' of reconstruction. I've been ready since the day they took my right breast away, but of course there is so much to endure first, you can't focus on that. I don't know why I am so desparate to have it done, but my life feels on hold waiting for this surgery. And I know some people have really long waits with their surgeons, and I have a fairly new surgeon so hopefully his list isn't too long, but I would go into surgery tomorrow if I could. My next appointment is in three weeks, when psychologist report will definately be back and done (and hopefully good!). Three long weeks. Why is time dragging, and why can't I think about anything else?
I know there could be so many things that go wrong with surgery, and that there will be significant pain, and much rehabilitation, but I'm ready for it - why can't it be ready for me? I want to look forward, get my life started again, I need 2013 to be hospital free!! Fingers crossed no cancer spreading... that would do me in. Where would I find the strength for that? I've read many posts from ladies in that situation, and I admire your strength, and wish you well.
How do others deal with the waiting? I just can't be this half woman any more.
So sorry for the negative post/rant, I'm just going through a hard time right now. Anyone else wished for a magic wand throughout this whole damned process?? I have, countless times!!
Big love to all you ladies out there, whatever stage you are at, my thoughts are with you.
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Hi all. I was a 32 FF before mastectomy, and I'm now close to having reconstruction. What size do I go for? Do they say 'you'll have a C cup' or something? That's the only question I keep forgetting to ask my consultant. Any advice??
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Thank you everyone for all your comments. They really help. I've just seen a Clinical Psychologist this week, with her report due to land on my consultants desk in a week or so. After that I should get a surgery date very soon. I'm lucky (i hope) because we have a new surgeon who doesn't have a long waiting list, so he should fit me in quickly. Of course this is all dependent on whether the psychologist found me fit for purpose!! I'm only 34 so having two breasts will be so amazing for me, even if they are a bit 'frankenstein' rather than 'hollywood'!!
I feel so strongly about this decision for my body, i found it a bit maddening that I had to convince someone that I was making the right choice, but I do understand they want to make sure you have thought through all the pros and cons. I just can't wait to get in there and get it done, no matter what the outcome! I'm ready for it!
Good luck to all of you brave ladies.
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Hi everyone. This is my first post here... I am about to embark on risk reducing mastectomy on my one remaining healthy breast, and have a double reconstruction. All in the same surgery!! With nipples as well.
Has anyone had any experience of this and can give me some feedback as to their results? The surgeon and BCN want me to see if I can find someone who also had risk reducing mastectomy as they feel it is a very big decision to make. I feel it is right for me, but havent been able to speak to anyone who has actually experienced it.
I would be having the back muscle reconstruction on my already mastectomied side, and then a mesh implant on the other healty side. So any feedback on either of those surgeries would be really appreciated.
I look forward to hearing from you!
We're all in this together aren't we!!
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