Sorry to hear you had a sleepless night. Hoprribel things. I had two recently and was amzed to hear the dawn chorus strike in at 3.17 am both nights!! I was deperate to put the light on to read but didn't want to wake my OH who has been very pressurised in work and has me to contend with as well. Unfortunately, duaghter No 1's bed was free as she's away in uni but wasn't made up and my arm isn't up to making beds. I didn't think of coming on here but then again I'd have to prise daughter no 2's laptop off her sleeping body and would probably wake her too. So I just lay there.
My new boob is very sore this week. It's started to clamplike a vice inside my chest so I rang my bcn who told there was probably inflammation present and to take anti-inflammatories for 5 days. The skin is so numb it really is not pleasant to touch. The tablets have worked as far as the clamping is concerned but the skin still feels very tender. I shall have to tell her on mon if she rings. I sleep on an amazing edifice of 7 pillows, arranged like a mini pyramid on the bed.This is not ideal as I like to lie on my tummy with nio pillows at all. I also wake in the morning with a tangled knot in the back of my hair. Not a pleasant sight!!
I have to start thinking about going out soon, as I've been cocooned at home now for nearly three weeks. I'm due to go to Dublin for a rugby international half way through March and I'm not looking forward to going. Two years ago we had a marvellous time with our Irish friends, eating and drinking to excess etc but there was an awful lot of standing around and pushing through crowds and we even went to the hotel disco at the end of a hectic day.I just don't have the energy to even think about the weekend although not going is not an option as I can't let our friends down and the hotel and flight was booked last summer. Maybe I'll feel better by then.
Hope you have a good night's sleep tonight and if not make a note of the time of the dawn chorus!!
Hi Annys - I'm in one of my 'waking up in the middle of the night' phases so have just read your last post. I think you're doing exactly the right thing not to contact work. I had very little contact for the first 6 weeks then started accessing work emails in January - big mistake I think as my brain wouldn't work - so I retreated and haven't done much. You'll be amazed at how tired you get and you need to take your time. I'm doing a phased return - working for the NHS - and I'm almost 4 months post-op - but could have had another 4 weeks off if I'm honest. I'm not looking forward to going back and feel a bit pressured to go back as I'm past the expected recovery stage of 3 months. Teaching is so demanding and you really need to negotiate a phased return. Its a huge op and your body needs time to recover - my tummy still gets tight and hurts from time to time - it also still feels a bit swollen but thats perhaps due to the few pounds I've put on sitting around! If you're sitting on small chairs with the children it won't be comfortable. The numbness improves but it all still feels weird - and I think always will do to a point.I didn't like touching my wounds either - it gets easier. How's your new boob - mine was very hard and tight around the side - still is - but improving? I'm finally sleeping without any pillows under my legs and am able to sleep on both sides but that took a long time to feel comfortable. Take it all very easy - build in rest times to your day - especially as you start to do more. Take care.
Just read these meassages - it's so annoying not having a computer anymore, having had to return my lap top to work. I can only borrow my duaghter's laptop when she's not using hers and that's not often. I persuaded her to do some GCSE revision and so have borrowed her computer.
Thanks for your comments Brook - I know I'll be scared to return to work too. My colleagues want to visit me but I don't want to see them as I'll feel pressurised to return. I'm definitely nor ready yet but they might ask me when they think I will be ready. I'm a primary school teacher and don't feel I can cope with the level of work I have to do at home as well as in school. They probably think I'm really weird, I haven't even texted them yet. I shall have to start to make an effort soon though. I haven'ty been out properly yet. I went to a breast cancer support group but that's it.
I have just started using aqueaous cream on my wound buy don't like touching it. I still feels very numb and tightens like a vice periodically on my chest. It doesn't feel like me yet - I hope it will soon. Does the numbness ever go because all the nerve cells have gone haven't they? Take care. Annys xxx
Annys - how lovely to read your last post - so differnet from just after your op. I'm sure you will be ok - its a bit of a rollercoaster but the worst is over and to know that the cancer is out is great. You have virtually the same results as me except I was grade 3, 5mm invasive but no chemo needed. I'm now 3 months post op and going back to work soon (that's scary though as I get very tired still). You've done well to be in nice clothes - I'm still wearing elasticated waist leggings etc but feel like dressing up more and have treated myself to some new clothes - I had a reduction as well so I'm less self conscious now about my big boobs! I found a great bra in M & S which is slightly padded so hides the one nipple problem - its one of the T Shirt style bra's - but I waited 2months before getting one - I wore a crop top until then. Take it easy, massage your wounds when they have healed a bit, have lots of treats and enjoy being pampered a bit. Well done. x
Hi Sorry darling you was caught up in your advice needed in such a hot topic, but so glad to here your doing well, just take each day at a time" you will get through this!
Take care, luv Teresa xxx
I'm so pleased for you Annys. It's such a huge weight off your shoulders. Look after yourself and take things easy - the healing takes a long time.
Thanks to everyone's advice about my surgeon. I saw him today for my results and he was actually pleasant. I was so surprised. He called me by by name and chatted about my job. He made me feel like a person. He also gave me good news!!! I don't have to have chemo. The cancer was invasive grade 1 8mm in size but having the mastectomy means its all all all gone. He also says that the lymph nodes are probably clear - he'll be 100% certain when I see him next month. I was surprised that they've not got all the results in 15 days after the op but he said they are rechecking them again but he's more than certain it's ok.I have to take tamoxifen because the cancer cells were oestrogen positive.
I'm also quite pleased with the reconstruction - he has done a good job. Its difficult to say for certain as I have all the staple marks across the top and its still swollen and bruised but looks good. It was also wonderful to put some make up on and wear heels and some smart clothes again. I truly felt I had rejoined the real world. Its been a terrible 3 months and I'm sure there'll be down times still to come - I haven't thought too much about that nasty little invasive tumour yet -but I'm savouring the feelings of relief I have tonight. Hope there's others on line tonight who are also feeling happy and if you're not, just re read some of my miserable past postings to realise that good times can lie ahead.
What a horrible experience you've had! Sounds like you're coping with it pretty well though. Glad you're doing ok.
All the best
Please don't take any rubbish from your surgeon even now. It took me a long time to change surgeons and hospitals but in the end it was in my hands, not theirs.
I'm new to this site but was dx a long time ago and I'd like to think my experience would not be repeated but sadly that is not what I always read. Surgeons are full of the same human frailties as us.
Please get in touch on herer again if you are unaure as to how to put yourself in the care of another surgeon. A decent man will not object to you asking to be referred to someone else and I bel;iev your GP might even be able to facilitate that.
Please don't suffer in silence as it were.
hi, sorry to hear you are having such bad treatment from this surgeon. I was initially misdignosed 6 months before finally being told it was cancer and the surgeons attitude will always be with me i think. He was just interested in passing the blame elsewhere and didnt look either myself or my partner in the eye. He was a very rude man but to cut a long story short i changed surgeons because of this, you are entitled to change to another surgeon if you wish to. I now have a wonderful female surgeon, who is so down to earth, even to the point of giving me a hug when she knew how scared i was the morning of the op. Speak to your BCN if you want to change, im sure she will support you.
what a trying time you have had due to the arrogance of your surgical team, so sorry , its hard enough to get through this , have you thought of changing your surgeon, its patients choice and we all deserve basic care and good manners .
A big thank you to everyone who have posted their reassurances and advice for me to read. Unfortunately, just after my last posting I had to return my laptop computer back to work - I'm a teacher and the supply teacher needs it for lessons. As a result, I didn't have access to the forum until today and I'm now 8 days post op.
How I went through with it I don't really know. I came close to recalling the consent form an hour before the operation but an understanding nurse talked me through my worries. Now, several days on I'm a lot calmer if a whole lot sorer (if there's such a word!) I realise now that it was a lack of information and a totally cold surgical team that freaked me out more than I needed to be. My surgeon did not see me on the morning of the op even though his colleague saw his breast patients to reassure them. When I was in the anaesthetic room being prepped for the op he came in banged my notes on to my feet and totally ignored me,not even a good morning. I started to shake really violently and the anaesthetic team clustered around in concern and genuine warmth to reassure me and then I was knocked out. I did not see him the following day but the hospital bcn came round and I told her how I still didn't really know much about my cancer and that my surgeon's treatment of me left me feeling like an object. She got my notes and told me that I had grade 2 dcis 52mm and that the mastectomy was essential becuase of the size of the dcis. A short time later the surgeon and his two robotic assistants came up (I'm sure becuase of the bcn) and he told me the dcis would have evolved into a nasty cancer. He then joked about my flat small breasts and said he'd tried to find an implant that was small enough and flat enough to match it and then left. I was under the impression I was supposed to be have been gratified by his visit. I did not see him again for the rest of the 4 days I was in hospital. His registrar and house officer are both women and I feel shame on them that they seem to be adopting his cold clinical manner.
At least now, I feel my mastectomy may not have been in vain. I am due at the clinic on thurs to have my staples removed and I will see his handiwork for the first time. I am worked up about his contemptuous opinion about my small flat breasts - I'd never thought of them in that way before- and it has affected my body image now. I try not to think about it too much, as I don't have a high opinion about him either except that he seems to think he has the right to vocalise his views whilst I'm too good mannered to say that he may be a marvellous surgeon - by reputation I'm told but I'll be the judge of that myself on Thurs- but his bedside manner is non-existant and he should have stuck to general surgery not breast surgery as he cannot empahise with women at all.
Two lymph nodes were removed and I'm not sure why as my dcis is supposed to be non invasive. I'm a wee bit worried that maybe there's more there than was thought of at the time but I only have 2 more days to wait to find out. I have spent the last 8-9 weeks waiting for closure on this, maybe that's now about to come.I'm nor looking forward to having this man as my consultant in the coming weeks and months but I'll just try to grit my teeth and bear it. I've been reading some more comments about lovely understanding surgeons and bcns and I feel very envious. I am a naturally anxious person and need a lot of reassuring and information. To have had an understanding surgeon and bcn who's not bustling around recommending anti depressants would have been marvellous.
Thanks again for all your comments. Keep in touchj.
Cathy your right. I told my surgeon that i was scared of dying in theatre and he laughed and said that if he had a penny for every person who told him that he would be a billionaire.
Its a very natural emotion. I was convinced i would and i survived 11 hours under the knife with no ill effects x
Just wanted to add that for me too, this was my 1st ever operation and, like many, I was terrified I'd die under anaesthetic (8 hour op) but have to say, was amazed at how 'OK' I was afterwards, even if totally bedbound for a few days (then a further 3 months recovering.
As others have said, please please don't be frightned by honest posts on here. Personally, I felt empowered by reading both good and bad expeiences, ie, there were no 'shocks' for me and this helped me psychologically.
Lots of love. Cathy x
Hi Annys, my friend had DCIS and had double mastectomy. She actually requested it herself just to try to ensure she was safe.
I totally understand your fixation on the mastectomy and not the cancer. I dont think i really thought much about cancer in the six weeks between diagnosis to surgery as i couldnt think of anything but the fact i was about to be 'mutilated' in my eyes too. I felt angry and resentful that they were 'doing this to me'. I was in tears going into the hospital and didnt want to go. Burst into tears entering the ward too.
Hope you get all the answers you need to calm you prior to op. I got thru it and have to say have surprised myself at how well I have coped. It didnt actually bother me afterwards and my usual humourous approach to things got me thru.
Its a scary thing to go thru and am glad you felt able to post on here cos it does help to talk to others who have been there x
I'm in a similar position to you, and understand exactly what you mean about not taking in the cancer and feeling so overwhelmed. I really agree with what most people have advised, that you should make sure to ask your questions before any surgery and be certain that you understand everything. (As far as I understand it) there isn't a great big rush regarding DCIS. My BCN admitted that they try to process you quickly so that it looks good on their waiting time stats! But I've refused to rush, and am feeling better for taking even that small amount of control.
My initial diagnosis of DCIS was back in October. Diagnosis sounds very similar to yours (though I'm a bit larger, at 34C/D - depending on time of the month!) I went in in Novemeber for a WLE, but the margins weren't clear and I was advised a mastectomy. I said I didn't want to do anything til after christmas, and I didn't make an appointment to go back, but left it open. I read as much as I could, talked to loads of helpful people here on the forums, then had a holiday from thinking about it over christmas, which was lovely!
I went in to talk to my surgeon again in January and during a mammoth hour and a half consultation where I went in armed with a notebook, pen and attentively listening boyfriend, went through every single little thing I wanted to know (including, 'exactly how many pies would I have to eat for DIEP to be an option??', and they listened and explained everything thoroughly, even the stuff they'd told me before at least once.
I have decided to have another WLE even though I know there's a good chance the margins won't be clear again and I'll end up having to have the MX anyway. And even though I know it'll leave me lumpy and misshapen. And even though I'll then be looking at weeks of radiotherapy and maybe tamoxifen (which I probably won't even take for long, cuz I want to have children pretty soon!) All of that is worth it for the chance to keep most of my real breast with its feelings and sensitivity - rather than have some weird alien lump for the rest of my life!
I know we're all different, and your experiences and priorities might be very different to mine, but I wanted to explain all this to show that there are options, and you can assert yourself more (I could be wrong, but it sounds as though maybe you haven't?)
I'm going in for my second WLE next thursday, then I'll get the results about 10 days after that. Of course I'll be devastated if the margins aren't clear and I'm looking at an MX after all, but I really believe I'll be able to cope with it a lot better for knowing that at least I've tried alternatives. I don't think I could live with the knowledge that I'd allowed my breast to be lopped off in a rush of panic and confusion, and not really even understood what was going on, what the risks were, what the options were...
I think snowwhite is right that going in for the surgery feeling helpless and uninformed is likely to lead to emotional repercussions. It's not necessarily even about avoiding the MX, but doing all you can to understand the issue and the problems and the options, and feeling as confident as you can that it really is the best option. That's how I feel anyway.
I notice you haven't posted back here for a few days and I hope we haven't all scared you off with our forthright advice! We all wish the best for you, and it'd be great if you could let us know how you're doing - no pressure 🙂
ps, I too had never had surgery before my biopsy, and was terrified due to the unknown. But it was fine in itself. I was groggy for a day or two, then quite quickly back to normal. I wasn't half so scared going in for the WLE, cuz I'd been through it all before. Again it only took a day or two for me to be back to normal-ish, but I was very tired for some weeks afterwards and really struggled at work a few times.
Wow, what a weekend you must be having - I'm so sorry but hope you're bearing up.
Firstly, please please please DON'T feel that it's a 'done deal' and you HAVE to go through this on Monday if you're not ready. Sno and Jane really do know what they're talking about where they've advised not to feel you have to 'please everyone' by being a brave girlie and 'get on with it', you don't! We all cope differently and have different issues/lifestyles to contend with. I'm not saying leave it but ask for a little while, (I took about 6 weeks (my surgeon said I was 'probably OK for a few weeks' before I was comfortable with the decision).
Secondly, I have to say that I felt pretty much exactly as you feel now at the time of diagnosis. I had, at that time, 10 cms of med grade DCIS and was told mx was only option due to size. I was told that if I wanted reconstruction then my hospital did LD flap. My hobby is kayaking and so that wasn't a doable option for me. Believe me, I totally freaked out - not about the cancer threat - but about being mutilated when I had DCIS not full blown cancer. Fortunately, by expressing my fears and not stopping until I had the full facts about what was going to happen to me, I was referred to another hospital who did the DIEP op (using tummy fat) which, for me was a far better option (ie, didn't mess with my back muscle). After the operation, the histology provided showed that the DCIS was in fact 'predominantly high grade with 4 foci of invasive disease' and I was, in fact, going on to develop IBC which would have been fatal without any treatment whatsoever. So, I have the comfort (I consider myself lucky for this) of 'knowing' that the operation DID save my life. That said, and as Jane and Sno have said, with DCIS, a great number of people will have unnecessary operations in the name of 'preventing' rather than treating cancer - ie, low grade DCIS may never develop into anything else whereas high grade is likely to.
Annys, all I can say is that you 'may' have a little time to think on this and I would personally suggest pressing the 'stop' button (even if only for a week or two) before you decide, but that's just my opinion. I personally could not have psychologically coped with waking up with no breast (although many women do - fear of cancer usually works!) Sorry for such a long post but really wanted to offer some support as I've been in your situation.
Lastly, I totally admire and respect Jane for her honesty and opening up on her feelings that so many chose to keep private and 'put on a smiley face/get on with it'. We need to hear the truth from all angles, or at least have access to those who will tell it. Knowledge really IS power here! My recon isn't briliant but it's OK, however, I remain with issues as a single woman, despite being one of life's 'copers' and can sympathise with anyone who feels they would rather take the consequence than go through recon if they had the choice again. My first surgeon, to whom I remain in deep gratitude, told me when I apologised for 'being a baby', 'What's the point in me giving you surgery to save your life, only to give you a miserable one in return'. Thank you Miss Evans!!
Lots of love to all. Cathy x
I just wonder how many recons you have seen? Where I live my BCN organises re-con meetings every so often. She takes about 6 women who are contemplating recons and six women who have had recons who are willing to show us the results. I have been to one and have to say I was very impressed at the results of each of the different recons available and would have gladly have had them myself. Unfortunately due to the progression of my cancer I haven't been able to fulfill that ambition yet, but the results were so natural looking that I wouldn't have been able to tell that they were recons if I hadn't of known.
If you are not ready for surgery it is unethical for surgery to be carried out. It must be carried out with your informed consent. You must not feel pressured into surgery unless and until you feel it is you driving it - if you go into surgery with your present state of mind, there will be emotional repercussions afterwards. It is not going to suddenly be okay for you.
It is absolutely wrong to expect someone to commit to mutilating surgery when they are in a state of shock and not give them time to assimilate the information and feel ready to make their own decision on what to do about it, whatever it is. Your medical team should be aware of your feelings of shock and confusion, should be sensitive to this, should give you the time to discuss the details with them - and above all whether there are any reasonable alternatives, and what these are, in an unbiassed and unpressured way.
Your diagnosis is DCIS which is controversial anyway, and is not an emergency in that it may never develop into life-threatening disease, and is certainly not going to do so by next week. You have a right to put off surgery or any action until you are ready to take whatever action you decide to take. You absolutely do not have to be thinking about pleasing or not pleasing them. It is your body.
It's obvious now you explain it - I'm so not on the ball these days! Also really good advice - definitely worth getting someone who is assertive to go with you, to record, advocate, challenge or whatever.
IFKWIM probably meant to be IYKWIM - if you know what I mean
Hi Annys - just some practical advice about appointments, as your reaction of not really taking it in and getting to ask the right questions is, I suspect, very common. I found it very hard - I get weepy - so my husband came to all my appointments well briefed to take over if I needed it. Is there someone that can go with you next time?
Thanks for your concern. I did see a psych, bless her who gave me some silly exercises for body image. Basically you stare at yourself and breathe deeply. Though I accept it may be highly effective treatment for some it does not help me. She actually did not diagnose depression, she just thinks I feel sad, which is not the same.
I am sincere in what I say and I think it is important to be honest, even if it is sometimes scary, I think there are any well meaning people who sugar coat this horrific reality. Women who feel like me, whether many or few, must remain silent and not express our sadness to our loved ones, medics or even on here for fear of offending anyone.
If "vulnerable" women read my posts and question some aspect of what they are or are not being told then that's a good thing. I think it's the only route to informed consent.
Actually, I have never complained about chemo. For me it was far from the worst bit, the SE's were doable and I was lucky that my hair and nails etc grew back - it is the mx and sorry attempt at recon which repels, disgusts and distresses me. It is the only irreversible and permanent effect I have.
And nearly 18 months on I feel worse than I ever have in my entire ife as the new normal unfolds.
I don't known what IFKWIN means.
It's precisely because there are no guarantees that we should question and be happy with any advised course of treatment. It is that unpredictability in outcome that makes me want to make everyone aware that you may have more options than you havebeen told. What's wrong with that? Percentages are totally irrelevat - you either are cured or not, have recurrance or not, can live with mx or not.
Best Wishes to all
I know we have 'discussed' before, but I do worry about your posts and wondered if you are having treatment for the depression you are experiencing.
Your points regarding questionning and pushing for alternatives are very valid - we do all tend to go along with what we are told to have, and do trust in the doctors, maybe too much.
But it does worry me - for your sake and for the sake of vulnerable people who post or read here - when you say that you would rather have died than go through your MX & chemo. I would hazard a guess that your experience is in the minority (although by no means a tiny minority, IFKWIM).
At the end of the day, there are no guarantees about any of the treatments we are offered or given. They can go well or they can be hard, they can give us more tim, or they might not work. There are percentages and likelihoods and some of us will fall into the % where stuff did not work and did not go right. Its all about how willing you are to take the chances that it might work and might go well. Those percentages are generally higher than the chances it might not, so IMO, it is worth the chance. If it doesn't though, sadly, you have to find ways to come to terms with what hasn't quite gone to plan....
Take care Jane
I know this is controversial but for some women (eg me) it is definitely better to (possibly) die with two boobs than have mx, and not be able to even look the body you live in. I realise others feel differently and respect that. I do think for some of us the prospect of years feeling the way i do is no prize. Everyone encourages us to have this hateful op because they think it's a cure and doable. It's presented as a life for a breast swop. Recon can easily replace the loss we are told - but recon is really an unpredictable, mixed bag. The recon inflicted upon me is painful and ugly. Some people say they get great results but I have only ever seen one that actually looks remotely like a breast. I guess the key point is some women are content with it and happily a loton here do seem genuinely pleased with all types of recons, so perhaps my experience is just unfortunate.
However, I am learning that mx is not a more effective way than WLE to control cancer and many women still die despite mx. NICE guidelines say take the breast off in many circumstances but these women still often have disease progression. Better cosmetic results with recon are not guaranteed.
I know a woman with a similar diagnosis to me who really hated the idea of mx and communicated this to a surgeon who then made every attempt to save the breast rather than take it off, even transferring her to another hospital with more skilled surgeons. When she asked why he had not done this at the start he said "Well, we see whether people can accept it first" - in other words if she had been docile and compliant he would not have put himself out. As one of the sensible, non complaining, stiff upper lip, compliant folk I resent that my blindly following "best advice" really just meant that he thought I valued my body less. And another friend, whose surgeon said "There is no point in me saving your life if it is going to be miserable" indicastes that surgeons may well listen if you let them know how much the prospect distresses you.
Frankly I have never cared about the cancer - at the start I thought it was too insignificant a threat to take seriously. As time goes on i realise that this disease can only be treated and not really cured.
All i know is that I wish i had not let the medics process me and it seems to me that you already feel strongly, so don't let others make you feel like you are being selfish, vain or trivial in the grand scheme of things - you have to live in that body for the rest of your life. It's true we get through it - it's doable and you find courage for the ordeal, maybe like me even minimising it at the time. It's the long term consequences that you can't hope to see when you are in the thick of it that are the hard part of cancer treatment. I detest living with the consequences of mx - hair grows back, chemo ends etc and you may be happy with your recon if you proceed.
I am unhappier every day because eventually reality kicked in. I am loathe to advise but am sharing honestly because I think as women we try to encourage by saying positive things, even when we know the truth is different. Be sure you have no other options before you proceed.
Every best wish to you and everyone
I like others on this site sometimes find it hard to post/advise to others. It is such a terrible time that you are going through. I would just like to say that if you can can you must try to look forward to good times, because they will come back. Looking back over the years (10 yrs post mx) and I do wonder what if?! but hey I just think maybe we are the lucky ones they found the cancer and we are able to get rid of it, thanks to modern technology etc. Okay we loose a boob (and I did not take this likely!) but sometimes we have no choice... would we all rather die with two boobs or live a longer fulfilled with one boob! I know what i would prefer as I have and still here! After about 1 year had reconstruction and nipple reconstruction, I wouldnt go topless on a beach but with clothes look the same as others. Back to your op Annys you will be fine, I
know you must be very, very scared... but you will come out the other end. If you can have a reconstruction go for it, it sort of makes you feel normal again, I must admit when I first saw myself I felt a bit like Nelson!
Believe me you will feel normal again, but it just takes time! Thinking of you on the 25th.
I'm another one who has not had a bad experience with my MX and full lymph node clearance. I was in hospital for 2 nights - one pre-op and one after, and then home again. I didn't have recon though, wasn't an option for me at the time. I had my drains in for 7 days, but was home and could walk into town and do some shopping with my drains in a bag over my shoulder!! No pain and it took 8 weeks or so to get full movement in my arm back.
When I have my bra and prosthesis on, no-one can tell I am missing a boob (except you have to wear slightly higher tops). My OH isn't bothered by it, and my scar is healing up really nice and neat.
My mum had recon a few years ago (7 years after her mastectomy) and is really, really glad she had it, so I will be having one when I am through the chemo/rads/herceptin.
I think most women seem to get through all this and come out the other side and get back to some normalilty. Take it all one step at a time, and get as much information as you can. I take a list of questions in with me and they laugh when I get my notepad out and start taking notes!! But it works for me. Ask again, if something hasn't sunk in, even if you know it was explained before. They don't mind. Stop them if they seem to rush on to the next topic. They are busy people, but this is YOUR life and no-one is going to take better care of you than you. Take control.
It sounds like talking to someone to get your head around all of this would be helpful, so do call the BCC helpline in the first instance and see if they can help answer some immediate questions.
My BCN knows more (or at least as much!) about most stuff than the oncologist does, (and it was the same with the surgeon) she is a mine of information. They are not all just sweet but unhelpful, some are marvellous. I hope you get a good one.
Take care, but be reassured that it is doable.
I thought long and hard about whether to post: I had mx Autumn 2008 and I'm still not over it. In fact, it gets worse every day. I was told there was no alternative but I really question it now - mx won't definitely save my life so I question why i had it. My quality of life, sexual confidence and pain from the reconstruction, which is not a realistic or comfortable attempt at re-creating a breast make me deeply regret going through with the op. I was not that unhappy about it at the time because I thought it had to be done and was for the best but it has got worse as time goes on. If I had my time again I would not do it even if does mean that cancer is more likely to recur.
Reading your post I wonder if you are ready for this as it does not sound like you are in immediate danger. Once the breast is gone it is gone forever - a reconstruction is not a breast, it does not feel like a breast even if you are lucky enough to get one that looks like a breast. You need to be able to accept that to be able to live with a recon.
I found BCN's sweet but not that helpfulor knowledgeable, but if yours is any good talk to her. Don't be rushed to please people.
Wishing you the best of everything, it's your body, do what is right for you.
i also had DCIS high grade, and pagets.. I'm only a 34a.. So the only option i had is Mastectomy and reconstruction the same time.
I had my op on the 16th October 2009..
I had my lymph nodes done in a seperate operation where they inject a dye into your nipple and select nodes. I found i had plenty recovery from that op. I found the lymph node painful, but it ment i did not have a bunch of nodes removed. They adviced me to do it this way because they needed my cancer surgeon and plastic to be together and it would of ment waiting. At least if there was any cancer my treatment could be arranged from there.
The surgery took place at charing cross.. I was in theatre from 9.30 to 6pm .. but they did a good job. You will find after the first day they will want you up and mobile. It is not pleasant, but once you have adjusted u'll find each day gets better. Try to stay positive and you will get through this.
Ps i get my nipple in March if my other breast behaves itself.
I won't repeat what has been said before, just that I agree with the great advice already given by the other ladies. Please ask as many questions as you like in order to feel you are fully informed.
I had my MX with reconstruction at the end of October, and don't regret it. It is horrible losing a breast, but my recon (LD flap) has been fine so far. Admittedly it does take a while for the swelling to go down (still not entirely gone) and for the surgery sites to feel normal/comfortable. I am, however, seeing a definite improvement, and feel much happier with it than I did at first. I found it does take a while to get your head around the whole business - diagnosis, surgery, recovery, etc etc.
My heart goes out to you - please try not to worry too much. Brook is right, it is worse beforehand and the waiting is awful.
Sending you love and hugs 🙂
I'm having my op on the same day, but mine is lumpectomy and axillary clearance. Have been to see my breast care nurse today for the first time since my diagnosis on new years eve, then straight on to my pre op assessment. I too have never had surgery. I totally understand your fears but I try to think positively. Whatever I'm going to go through it is going to be worth it. I want to be around to see my 2 young sons growing up. xxx
Exactly one year today I had mastectomy for DCIS widespread and high grade, 4 nodes removed no other option then mx or wait and see well I waited for 3 weeks before going into hospital for op. as I wanted to be o.k. for xmas and that was the worst 3 weeks of my life so felt I made the right decision. I did not have recon. as due to other circumstances at the time needed the quickest recovering option. I went in to hospital at 12.30 down for op at 2.30 and back on ward having a cuppa of tea at 4.30 could have gone home next day but felt another day in hospital would be benificial. had drain in for 3days.
You will need to take things easy and the excersises each week get better. As for the emotional side I feel I have coped quite well with losing my breast but do have days when I feel really p----d off but it could have been a lot worse as many ladies on here bravely go through chem and r/t and still have to have mx.
I wish you well and a speedy recovery .
You're welcome. I had some hand massages the week before, listened to some relaxing music and tried to do some deep breathing - it all really helped. Hope this week goes quickly for you.
Hi Brook, thanks for the reassurance. I'm so looking forward to life after the op as this waiting is sheer hell.
Annys - I had a mastectomy and reconstruction 11 weeks ago and it is so much better after the operation than before it - I felt like you do now but it is so much easier to cope once you've had the op. The wounds aren't as bad as you think and the results are great. I have ups and downs but talking helps. Hope all goes well for you.
Thanks to everyone who has responded to my post. Feeling very overwhelmed today. I'm due to see my GP tomorrow who is very understanding so I plan to chat to her. Thanks for op details, I've not had one before so that is another fear to face. I will also consider the counselling suggested by Elinda. My bcn was keen for me to go on antidepressants but I have resisted this. Counselling might be better. These are all things I'll consider in the weeks following the op. You've all been very kind to respond and I appreciate all your good wishes.You've been there and done that and I'm grateful you're sharing your t-shirts with me! Thanks again.
Sorry you feeling so scared. I had a double mastectomy without reconstruction as it wasn't an option for me and I'm 7 months down the line. Yes I would rather have breasts of course but emotionally I'm okay about not having any. I shed quite a few tears both before and after the operation.
There is a lot to come to terms with so it's not surprising you feel like this. There is the cancer diagnosis and then the whirlwind of tests and treatments.
Once you're op is out the way you may want to consider some counselling? I had this via the Cancer Counselling Trust and found it really helpful. They offer 9 sessions over the telephone on a weekly basis and ask for a donation. It doesn't solve all the issues but I found it helped me to come to terms with things more. This is the link if you want to take a look.
Please feel free to call our helpline where you can talk things through with our specialist nurses or trained helpliners, they are there to offer you support and a listening ear. You may also find the following information helpful, I have put links up here to information about DCIS and also breast surgery:
The helpline is open weekdays 9-5 and Saturday 9-2 on 0808 800 6000.
I agree - you need to go back to your breast cancer nurse and get all your questions answered. Its a good idea to write down all your questions and the answers you are given. It is all very confusing. You will receive a lot of support on this site. The waiting is the worst.
I had a mastectomy last June - for widespread DCIS. I chose not to have recon. I recovered quickly thank goodness.
I wish you all the very best. The op will soon be over and then you will start your recovery.
I wish you all the very best.
First of all, it doesn’t matter whether your surgery is one hour or five hours – you’ll wake up just the same. It depends on whether you’re having recon at the same time, and what type. I assume you discussed the possibility of reconstruction?
I understand the lack of registering the cancer – I’ve been the same and had to pinch myself sometimes to remind myself if you know what I mean – I was always focussed on the surgery. I’ve had 2 ops and can honestly say that the recovery has been much better than I expected, especially after my recent Mx op. I wish I’d had an Mx straight off – I had a segmental Mx but the DCIS was more widespread so I needed the full Mx. I had several small tumours which hadn’t shown up on the mammogram or the ultrasound, surgery seems to be the only way to be really sure what’s there. The first thing seen on my mammogram was the calcifications too.
Don’t read too much on this site, tempting though it can be. It takes a while before you get used to the whole thing. There are areas which I don’t read because I’m not affected by them, and they can be frightening, especially in the early days. This is a horrible disease, but remember too that there are lots of ladies out there who’ve had breast surgery and treatment and have recovered and are living happy healty lives – they don’t all post on this site!
I encourage you to go back to the BCN. She will be able to answer your questions. Write a list, and if you can go to see her, take someone with you who can listen too and take notes and then discuss it through with you afterwards. My husband is brilliant at this – I come out of appointments with only a third of what was said. He fills in the gaps for me! You must try to have your questions answered before you go for surgery.
And as Tally has said, everyone on this site will support you, me included.
Thinking of you
I can't answer re your op as mine was a lumpectomy and some lymph nodes taken on the 11th Dec.....but what I can say from my own experience is the waiting is worse....I waited 5 weeks from diagnosis for surgery, then another 3 weeks for result, and now I'm waiting to see oncologist next week before starting rads....
Please don't be terrified, we can all try and help with the emotional side. hugsxx
Hi Annys, I had a mastectomy on the 30th December '09. I was only told on the 23rd Dec that it was going to happen, like you I was shocked and frightened all I could think about was the actual operation and everything else went over my head. I did not have recon I may think about that later, but I think I was in theatre for about 1hr - 30mins. I went in hospital in the morning and had my op in the afternoon (couldn't believe I had to walk to the operating theatre though) must say everyone was fantastic and put me at ease, it felt I was no sooner put to sleep when I was awake again. I was amazed the day after the op. at how well I felt. I had two drains in and they stayed for 5 days they were a bit uncomfortable but bearable, I was in hospital for 5 days. During the op some samples were taken from my lymph nodes and this left my underarm a bit tender and stiff. I was given excersises to do and I do them daily I am almost 3 weeks post op and I feel better everyday. I have looked at my chest and mourned the loss of one of my 36DD's and decided to get on with it - Hey I woke up this morning didn't I -
Everyone is different and we all have our own way of dealing with things, I wish you a speedy recovery both physically and emotionally.
I've been reading the posts and am feeling overwhelmed by everybody's experiences. One of the forum's correspondents has advised me to stick reading about the condition I have which is DCIS. A lumpectomy was ruled out because I have small breasts and a mastecomy was ruled in as my only option. No choice. I know I should be glad I'm having a potentially life threatening condition sorted out but I'm not. I'm totally fixated on the fact that I have to have a mastectomy.
My mastectomy operation is in one week's time on Mon 25th Jan and I'm feeling sick and scared. Ever since my diagnosis I have not registered the cancer side just the mastectomy and although I'm having recon I still feel as if I'm going to be mutilated. I have microcalcifications throughout my right breast but I don't know how worrying they are as I was firstly told they were low grade but more recently my breast care nurse said they were intermediate to high grade. I haven't seen my surgeon since he broke the news to me a few weeks ago and I was totally incapable of listening to a word he said at the time. The next time I see him I will be on the operating table. I haven't questioned the nurse either as I was upset when she visited. It was only afterwards that I remembered what she said. I have to pinch myself to believe this is real as I have no lump, no pain, just a mammogram splattered with white dots and a biopsy result that has sentenced me to surgery.Those of you who have had DCIS and mastectomy ops - how long will the op take and will I get over the emotional trauma?