Breast Cancer Care Forum

On the morning of my mastectomy surgery, my breast surgeon met me in the corridor. I was already gowned up, but upset, crying and scared. Rather than reassure me with a 'we'll look after you', she simply said 'you can always change your mind'! I know she meant it to make me feel like the power was in my hands but I didn't need any more seeds of uncertainty sown in my mind, I just wanted someone to reassure me that this was what was medically needed. ... View more

It's strange how everyone is told different things - I was told that one re-excision is the norm and doing a second one isn't very common. No-one mentioned that back muscle could be used to help reconstruct the breast. I have to live with my mx now but wasn't really given much choice even though there was only DCIS left and no-one could tell me how much! ... View more

It is a hard decision to make isn't it? I was told after an WLE and re-excision that my margins weren't clear but that they couldn't do a third re-excision, because I'd had a therapeutic mammoplasty the first time. The BCN said it was like origami and the surgeon didn't know where the margin would be in the breast so I would have to have an mx. I wish someone had told me that beforehand as I might have questioned it a bit more. When you meet your BCN I'd ask if they are concerned if there is anything else in the breast beyond the margin. I was told that the mx might reveal even more than they'd been able to see before in the tissue. Luckily for me it looks like there was nothing else scary beyond the DCIS in the mx so I've been told no further treatment needed beyond the hormone therapy for my ER+ status. I know that being faced with an mx can seem very scary and upsetting but it can be managed. I was terrified of the op and how I would look afterwards, plus losing a breast seemed such a major trauma. But I'm dealing with it ok - I've still got a long recovery road ahead but it's getting easier each day. Hope you can get the best support and advice to help you make the right decision DaisyDi. Feel free to ask any questions about my mx if you want xx Sending you strength and hugs xx ... View more

Hi Linda   I'm still here (have swapped over to the Nov surgery thread mostly).  After my WLE and re-excision in August, I had my mastectomy and DIEP reconstruction on 21 Nov.     I was hit really hard by the op, and had totally underestimated how ill and exhausted it would make me feel.  For the 5 days I was in hospital I felt like I'd made a terrible decision.  I'm home again now (have been for one week) and things are looking more positive.  I have a bit more energy, I've got my appetite back (partly at least) and I'm not in pain exactly, just discomfort.  I am almost walking 100% upright but my tummy feels very tight indeed.   But my wounds seem to be healing up nicely and the look of my foob is pretty good.  It's hard getting used to a boob without a nipple but in size and shape it's a pretty good match to my 'good' breast.  I haven't really looked at the scar on my tummy and new tummy button much as I find them hard to deal with, but that will come.   The hardest part is being reliant on other people for help.  After my previous ops I was able to do everything like normal within days, but with this one I've been told I can't do things like hoovering and laundry for the next 8 weeks.  It's been difficult to have people here doing things for me and I'm sort of looking forward to being left on my own for a bit to find my own speed/way of doing things.   It's been a really tough few months and I've still got to deal with the emotional side of things, plus wait for the path results from the op which I hope won't show anything unexpected.  But thigns will get better and i'm hoping that 2019 will bring the chance for me to return to some sort of normality.     Glad to hear you're back at work Linda - hope you continue to recover and return to normal well too.  It's been a long road hasn't it?   Take care all  Karen ... View more

Carol Lina - a mastectomy can feel 'extreme' but I'd hope that the doctors are advising you on the basis of the size/type of the tumour that needs to be removed. If it is very large then a lumpectomy could potentially leave you with a misshapen breast, different in size and shape to the other one. In my case I had a lumpectomy and they didn't get clear margins, so they had to take more. The 2nd op didn't get clear margins either and after that the surgeon was concerned that taking any more tissue would lead to a significant difference. And there was still some DCIS in place so there might have been even more in the rest of the breast which would have been dangerous to leave alone. I really think you need to push to see a counsellor or psychologist to discuss your fears and anxieties. Your breast care nurse should be able to refer you to one but you will have to push and keep pushing for it. It's also worth looking online to see if there are any local cancer charities that offer free counselling services. I did a Google search and found one in my area - I see a counsellor on a one to one basis there every week. Often these services aren't offered to us but we need to ask and push, and make a nuisance of ourselves to get what we need. I hope you can get the answers you need - if you're uncertain of what you're being told by the doctors then you could also call the Breast Cancer Care helpline who have nurses available, they might be able to explain terms or the likely reason behind the surgeon's thoughts on the need for a mastectomy. ... View more

Jacob - surgeon envy is definitely a thing! My initial consultant/surgeon was awful in his patient contacts and I had some trauma trying to get a transfer to a new surgeon. She's much better but still not ideal - for example, she met me in the hospital corridor as I was on way to theatre for my Mx/Diep and saw I was upset. Instead of offering comfort she just said 'you can still change your mind'. Not really v helpful!! I don't think I've been able to find the level of surgical/medical care that I think we all deserve and that I see other women on hear have managed to find. I'm envious of the Marsden treatment which seems exceptional. I wish I'd known that a referral there was possible! Linda Corinne - can I ask if you went back to work 3 weeks after mx/DIEP? That seems remarkably quick! I'm about 10 days post-op and barely able to do anything! As I'm post-op now and I know some ladies here aren't, if anyone has questions about the process and recovery, I'm happy to try and answer. Wishing everyone strength! ... View more

DaisyDi - what an awful complicated mess, how horrible for you. I hope the surgical team were very apologetic, not really acceptable. I can't offer much advice but if you're getting results on Tues from the re-excision then maybe wait until then to see what the next steps are? I know it must be hard to not have your brain whirring through all the options especially if the issue of chemo is still hanging over you. But as you and your surgeon said maybe if you get clear margins then maybe the axillary clearance won't be necessary. Sorry I can't offer any help or advice but just wanted to send hugs and good wishes. Let us know how it progresses and in the meantime focus on your recovery from the re-excision. x ... View more

Hi all   Just jumping into this thread as I had a single right side masectomy with immediate reconstruction (DIEP, using my tummy tissue) just last Weds so it's all new to me and I'm still dealing with the emotional and physical scars that it all brings.   I just wanted to ask Carol Lina if your surgeon has recommended you speak to a psychologist as part of the process?   My plastic surgery team (I'm seeing them as I was having the DIEP reconstruction) insist that women see their psychologist to discuss the process and to check that they are ready emotionally (or as ready as anyone can be).  Although I'm not sure this is only if you are definitely having a reconstruction.   It might also be worth asking if your hospital has a 'show and tell' evening for reconstruction options  where you can meet other women who've had the different reconstructions, see the work of the surgeons involved and ask any questions.  I went to the one at my local hospital just a week before my op and it put my mind so much at ease.   This really is a very difficult, distressing, emotionally hard time and there's so much information to take in.  I think the medical staff often forget that although they deal with this all every day, for us, it's a single major event in our lives and we haven't experienced anything like it before so need time to absorb, understand and accept it.     I think I've been fairly positive throughout my process but it's been a rollercoaster as I was initially told I would only need a lumpectomy and things have slowly escalated into needing the masectomy.  And I have some very dark sad days when I get upset about how my body has changed and how exhausted, frail and vulnerable I feel.  And I let myself have those days because they are necessary.  I'm in the early stages of recovery post mx (its 8 weeks of rest after a DIEP) and I feel frustrated that I can't do the things I want as I'm fiercely independent and live alone, but I have to focus on the fact that the tissue needed to be removed to try and preserve my life.   It's a tough road but I think most women who face it are incredibly strong, even on the most rubbish days.  So I hope you get the best advice and support you can Carol Lina to get the right results for you.   Wishing you and everyone else strength!  ... View more

Hi all   Just jumping on this thread as I had my single mx with immediate DIEP reconstruction last Weds and am at home recovering so looking for company ;-)    Brief history - dx July with small IDC and DCIS so recommended WLE and SNB, which was done early Aug.  SNB came back clear but they didn't get clear margins so had re-excision end of Aug.  That didn't get clear margins either hence the mx.  Been a bit of a shock to the system.     Have had a quick scan through the thread and realise everyone has had very different ops but most disappointed to hear that you don't feel the BCNs are there for you.  Mine has been a pillar of support - helped me through a lot of difficulties with my original surgeon and has been happy to see me and talk to me whenever I need.  I definitely feel she's there for me, not the surgeons and has actually challenged them a couple of times in meetings when she didn't think they were giving clear information.  She even came to the show and tell evening I went to so she could help if I had questions.  I think if you're not getting the personal support you should be then you should let your hospital PALS team know.  The BCN's role is as the patient liaison and support.  Or should be.  I'm sad that's not happening for everyone.   I did feel a bit abandoned when I was discharged after my 5 day hospital stay post-surgery as nobody gave me details about who to contact if there were problems etc but the dressings clinic more than made up for that today with the loveliest nurse who looked after me so gently and kindly and answered all my concerns. I'm living alone while recovering so it's nice to know I now have a point of contact if there's an out of hours emergency.   The DIEP op hit me much harder than I thought it was but at least i'm making baby steps to recovery.   Hope everyone has a good day xxx  ... View more

Hi all   I'm gate-crashing this thread as I'm at the planning stages for my single mx with DIEP reconstruction so I've found all your comments on here really helpful and will keep re-reading them when I'm nearer to my op.   A few people on here also recommended I come on here to talk to you Marla as I think we're in v similar situations.  Living alone without family or friends nearby.  I've been very anxious about this surgery as a result because I'm really worried about how to cope in the immediate aftermath of the op.  My immediate plan had been to go and stay with my brother for a couple of weeks but my surgeon and BCN weren't keen as they'd rather I was nearby for post-op checks and didn't think a 90 min drive after discharge was a good idea.  When they said this I had a bit of a meltdown and I was considering just having the mastectomy without recon as it felt easier and quicker.  But friends have talked me round from that I think, saying that I need to consider the long term and not just panic about the short term care that I'll need.     But I'm still finding considering having this op, such a major surgery, very difficult and scary.  I've already had a WLE and then a re-excision op, and had been hoping I'd be finished active treatment by the end of the year, but that doesn't look like it's going to be the case now.  Dragging this out in 2019 isn't what I had planned!!    Anyway, just wanted to post something rather than just stalking the thread! Wishing you all strength xx ... View more

Hi all   Thanks so much for all your replies and thoughts on this.  I've been struggling with dealing with this all week but think I'm getting better used to the idea.  A couple of friends have offered to stop over for a couple of days each and my brother will also do some days so hopefully I can cover at least a week after I'm discharged from hospital and then after that I will have to see.    I met the reconstruction psychologist today which was good - she was lovely - although she didn't really help me on the decision front.  The hardest thing is actually thinking about losing the breast and having something else in its place - I just don't know how it's possible to conceive what that's like until it's actually happened.  Did any of you ladies who have had that op manage to actually properly think about it beforehand? Or did you just get on with it and deal with it afterwards?   The psychologist was very interesting about how you have to look at the new breast and touch it as soon as possible after the op, so that your brain can adapt to your new body part.  It's fascinating from a neurological point of view.     A friend said something that made a lot of sense to me on Friday - I'd been thinking about just having the masectomy and no recon because it was the quicker recovery and would be less drain on family/friends support wise, but she said that I couldn't think like that and had to consider my own long term well being first.  I think we're just not programmed to think in what seems like a 'selfish' fashion.    Anyway, I'm going to go along to a 'show and tell' session at the plastics clinic in mid Nov which might help consolidate my thoughts a bit more.  Anyone else have any experience of these?   Hope everyone's well - sending hugs xx  ... View more

Hi all   Just thought I'd pop in and say hi.  Good to hear everyone is doing well.     I'm still weighing up the options I have for reconstruction after mastectomy - everyone (my BCN, my new consultant and the plastics surgeon) are pushing me towards the DIEP which is scary but does seem like it might be the best in the long run.   I've had a couple of emotional meltdowns when the team warned me off going to stay with my brother (see my other thread about my DIEP decisions), plus I've now been referred to the gynae oncolog team urgently as an itchy lump ... ahem ... down below, worried my GP.  So that's fun.  Waiting for an appt there so I'm anxious I'm heading down a new cancer road of course.   Anyway, taking each day as it comes.  Not much other choice really.     Hope everyone has a good week xxx   ... View more

Thanks to all your lovely ladies for your kind and supportive comments. They really helped me get through a difficult couple of days. I'm still processing the news and emotional about it all but it's starting to sink in a bit. I'm still waiting to get an appointment with the plastic surgeon who would do any sort of reconstruction if I take that path and apparently they run a sort of ‘show and tell’ where I can go and meet women who’ve had reconstruction to discuss the issue and take a look at what they look like. Sounds a bit like a weird peep show but I guess it’s a good idea and it will be nice to talk to people who’ve been through the process. Once I’ve done a bit of reading up from the leaflets my BCN gave me, I’ll also post a question on here and canvass views and experience from the women. This community is such an invaluable resource isn’t it? I’m also meeting a Macmillan nurse at a local charity next week, and then seeing my counsellor so I can deal with the anxiety and emotional side of all this. I’m mostly just frustrated at still living in limbo land. I had left my job just before my first op and had hoped I’d be in a position to look for a new job by now but don’t really feel it would be a good idea until I know what sort of recovery I’m looking at from this surgery. I also just want to book a holiday and fun things!! Anyway, thanks again all for all your lovely comments and support. I’m going to be re-reading it all as I start making decisions about what’s next. Hope everyone’s ok today? Autumn is definitely upon us xx ... View more

Hi all   Hope everyone's well - people have been a bit quiet recently so I'm hoping that means everyone is recovering well and out getting on with life and fun.   I'm feeling a bit bruised and low today as I had my follow up from re-excision op and was told that they still didn't get clear margins, with DCIS still present, so I'm now going to have a mastectomy after all.  I'm gutted and rather depressed by the news as it feels like the last two months and the last two ops were a waste of time and I might have been better off having the mastectomy straight away as at least by now I'd be on a better road to recovery.     I also just don't trust anything the surgeon tells me now.  He told me at the time of diagnosis I'd only need one op then radiotherapy, then I'd just need the 2nd op and rads, and now the mastectomy and probably not rads. But I know that even the mastectomy doesn't guarantee clear margins and that if that doesn't happen then chemo might be an option.  So I feel constantly on edge and, yet again, don't know what the next few months look like.  The uncertainty is driving me insane. I'm also bewildered by the options they've laid out - mastectomy without recon, mastectomy with implant recon and mastectomy with recon using my own fat.  I don't know where to turn right now.   I know this is all because it's new news and hard to process.  I'm waiting to hear about an appt with a plastic surgeon to discuss the recon options but at the moment I just want it gone and am erring towards not having recon.  I just want my life back.   Sorry to rant - am home alone and feeling vulnerable and scared.  This stuff really is s**t.   K   ... View more

Sending you hugs ElliesMum - always tough to wait for and receive results, especially if they're not what you were expecting/hoping for.  Presumably the good news is that the masectomy removed the invasive competent?  Maybe it was better that you didn't know about that part while you were undergoing the treatment as it might have increased your anxiety?  I know that it is horribly scary to be facing chemo but a lot of women say that the fear is worse than the reality.  But of course it is all sh*t and sometimes that's all you want someone to acknowledge isn't it?  So it is sh*t and I'm sorry you've been hit by this news at a time and place when you weren't emotionally ready.  Can you speak to your boss and maybe head home early so you can process the news properly?    I'm facing the results fear too as I should get mine tmrw after my re-excision op.  I'm terrified they'll tell me that they didn't get clear margins and that I'll need an mx and chemo as well.  But I also just want to know so that I can start thinking about the next step.   Anyway, just wanting to send you a hug and good wishes ElliesMum.  We got you. xx   ... View more

Ah, now I understand Lilac Moon. My incision is right round my areole too but I don’t think that means the nipple was taken off, just that that’s the neatest way to leave the scar. ... View more

Ok, so I had a nice leaky blister and a bit of a hole under my steristrips but no infection, so my BCN just swabbed me with iodine and gave my some gauze to pack into my bra for now.  I see my surgeon on Weds so she'll check the wound again then.  She told me to go home and get some air to it - I better just remember to put a top on when the Amazon delivery guy shows up otherwise he's gonna get a bit of a shock!    I'm glad I got her to take the steristrips off though as it was quite painful and I'd have freaked if I'd seen the hole when I was home alone.  Although probably not as much as if I'd found my nipple missing like you did LilacMoon!  That must have been a really weird moment.     The BCN also said that most surgeons she's worked with in the past just use the glue to close everything up on an WLE rather than all the dressings my surgeon used (glue, steristrips, dressing) so then the patient could shower no problem.  Wish she'd tell that to my bloke!    Anyway, onwards and upwards with a stingy boob!  ... View more

Sorry to hear everyone is feeling so tired.  We're pretty hard on ourselves aren't we?  We're going through such a mentally and physically difficult time and yet the slightest bit of tiredness and we think we're being weak.  I'm trying to get out for a daily walk as well, just wish I had a little doggie to keep me company.  Usually it's just me and my headphones!   Am off to see my BCN today as i took the dressing off my boob after my re-excision and its started oozing again.  Plus it's itchy beyond belief.  I just want to scratch it all off!  I don't think it's infected as it's not hot or sore or anything but I want the nurse to take the steristrips off rather than try it myself.  I feel bad for bothering her as I know she's really busy but I'd rather it get done professionally.     Back for my results on Weds hopefully.  Am really anxious this time.  Can't help fretting as it could mean a full mx or moving on to rads.  I hate living from appointment to appointment at the moment.  Am hoping that this one will give me a better sense of the next few months so I can get a bit more organised.   Wishing everyone well today - remember to be kind to yourselves!  ... View more

Linda/Jane - I've found that buying one of those full length pregnancy pillows as been a game changer for me getting some sleep. I always sleep on my side and having to sleep on my back for the first few days post-op was torture (no real sleep had). When I could sleep on my side I invested in the 'summer infant maternity pillow' from Jo Maman Babe as it has the bit for your head, the bit to cuddle down the side so you don't roll onto your bad boob and a bit that goes between your knees so your hips are comfy, and it also stops you rolling onto your back. It's been the best thing I bought and I might keep using it even after I'm fully recovered (although I live and sleep alone so have nothing else to snuggle with!) Anyway, just thought I'd throw that out there in case you were looking for ways to get more comfy. Lucky you having beauty therapist daughter! I've never been very glam but even I could do with something to make me feel a bit more pampered right now. Although I have booked a free oncology massage with a London spa place that I got through Ellie's Friends which I'm really looking forward to. I feel completely shattered after my trip into London to see King Lear last night, but it was totally worth it. Amazing performances , I feel so privileged to have seen Ian McKellen in the role. I'm a huge theatre fan and not being able to book stuff was driving me mad so I feel happy I got to see something so wonderful. Today is all about sofas and books though to recoup the energy expended. ... View more