Breast Cancer Now Forum

Hi Kat, Hope you got all of your questions answered this morning and you feel more informed and empowered xx ... View more

Hi Kat, reading your post took me back to the way I felt after my diagnosis 16months ago. The shock is overwhelming and hard to accept yet at the same time convinced it would have spread to lots of other places. I also got fed up having Angelina used as a shining example...not to undermine her situation but if I'm correct she didn't have cancer, her mastectomy was preventative surgery. As you get more information and a plan with dates etc. You will hopefully feel more confident that whilst not what you want, the treatment will get you through this and out the other end. I had a mastectomy, the sentinel nodes out and reconstruction and for me none of it was anywhere near as bad as I had expected. Thanks to fantastic pain relief I had slight discomfort but no pain. I've just had my nipple reconstructed and await tattooing. Though my breast isn't the same it looks amazing considering everything, best of all I am cancer free. No matter what lies ahead, voice your fears to your doctors, cut short conversations with people that aren't actually being helpful, remember this is treatable and you will find the strength to get through it. Wishing you well and always happy to answer any questions xx ... View more

Hi, I'm sorry to hear your still waiting for the exchange. To give you some comparison, I had Mx/SLNB/LD flap recon with tissue expander in Dec 2014. The expansions were done between Feb & May 2015 and in June a date was set for my exchange op, which was carried out in Sept 2015. The reason It had to wait until Sept was due to me having holidays booked in July & Aug. My next appt. is end of Oct to plan the nipple reconstruction. I don't know if my timescale is the norm or not but my surgeon has always informed me what will happen and when. More importantly he has stuck to it, which has helped me plan for work etc. Do you have a BCN you can call to get some answers or even ask to see your surgeon again. Hope you get your exchange soon xx ... View more

Hello all, I haven't posted for a while but thought I'd add to this (again). I no longer give chapter and verse to anyone, I say I've had cancer and my treatment for it is currently on-going. Treatment covers so many things but the majority of people wrongly assume if you haven't had chemo you haven't had cancer, how wrong they are. Whenever I say DCIS/pre-invasive it just opens a door where anyone & everyone gives me their own opinion. I have found that this causes me upset and stress that I don't need, so I just stick to 'cancer/breast cancer' My genetic consultant also refers to it as cancer. I'm in for stage 2 surgery next Weds to exchange the tissue expander for a silicone implant and tidy up the dog ear under my arm. Feeling nervous but will be glad to have the expander gone. Nipple reconstruction to follow at a later dat then tattooing then hopefully done. Sending you all good wishes xx ... View more

Hi FizzB, I am also going to have my expander exchanged and then nipple created with tattooing to finish off. My surgeon has never mentioned no NHS funding for nipple but I will certainly check it with him in June. Could it be due to the area you live in? Let me know if you have any further info, best wishes xx ... View more

Hi Jomar that's exactly how I feel - can't be bothered 🙂 xx ... View more

Hi Ladies, I can empathise with all these feelings. I don't like to be told how brave I am however I don't like being told how well I've coped and how i can put it all behind me now my Mx / recon is done. The reality is I'm waiting for the results of 3 different types of genetic tests, I am undergoing regular implant increases. I have more surgery to replace the expander later this year, I need to decide if I want my ovaries removed, I am horribly scarred and constantly uncomfortable and psychologically scarred for the rest of my life so when people tell me how relieved I must be now it's all over I want to scream at them to F off. Of course I don't do that, I try to understand that these people mean well and desperately want me to be healthy/happy and the person I was before my diagnosis. It is frightening for everyone involved. I have found people don't ask me how I am, they tell me how I am i.e. You look great, you're doing so well, you've coped amazingly! The only friend of mine that genuinely wants to know how I am has unfortunately been through this herself. At least by sharing on here we can be honest and we see we are not alone xxx ... View more

Hi, I have just had genetic testing done and I'm awaiting the results. My mum died of ovarian cancer and I have had breast cancer, I think it was my diagnosis which made me eligible for the test, they wouldn't have tested me Based solely on my mum. I can understand your concern and if you want it done push for it, though my understanding is that everyone tested has to meet a criteria. I don't understand why my mum wasn't tested when she was diagnosed with cancer as her result would maybe have saved me and my family the anxiety we are currently having to deal with. I wish you well, let us know how you get on xx ... View more

Hi Seabreeze, So glad to hear you have no reoccurrence 🙂 ... View more

Hi ladies, I met with my consultant and asked about reoccurrence & what to look out for, he told me that as I'd had a mastectomy & 2 nodes removed were clear reoccurrence was very unlikely. I also asked him to check what I thought was a new lump in my other breast, which he said felt like normal tissue. I have an appointment at the genetics clinic next week so I'll wait to see what that brings as well xx ... View more

Hello Demi, I hope my reply is of some help to you.  I had my Mx with immediate LD flap reconstruction and SLNB 8 weeks ago and initially dreaded seeing what lay underneath the strapping, dressings and steristrips.  I cried the first time I looked at my new breast minus its nipple, I disliked everything about it and wouldn't look at it, it all just felt so alien and I wanted what I couldn't have - my old boob.  My clever surgeon then told me that I had to massage the boob every day with bio oil to help the scars to heal and help the skin become supple to accomodate the expander implant I currently have.  As I felt I didn't have a choice I did as I was told and over the weeks I have come to love my new boob, I feel sorry for it and everything it's gone through and I feel like I do need to take care of it as I would any other part of my body.  I know that may sound ridiculous but massaging it has helped me to accept it, if I hadn't been told to do that I'm not sure I would have wanted to look at it or touch it again. I'm sure you're feeling very shocked and scared about it all at the moment and I hope that this will ease for you with time, don't be too hard on yourself, this is no easy thing to deal with but you will come through it xxx ... View more

Hi,   thank you for sharing your experience.  I was diagnosed with high grade dcis 8.3cm, had a left mx slnb and LD flap recon, thankfully nodes were clear.  I worry about how I would know if something started up again.  One of my lymph nodes was very enlarged according to the radiologist but came back clear, though it was enlarged I couldn't feel it and it only showed up on the ultrasound.   I have an appointment with my surgeon in a few weeks so think I will be asking him for further explanation about what to look out for post mx.   I would happily pay for additional checks and scans.   Wishing you well xxx ... View more

Hello ladies, your posts and the article have struck a cord with me. I am 4 weeks post mx with ld flap reconstruction.  Because everyone tells me that to look at me you would never suspect I'd had anything wrong with me or done I feel like I should be on cloud 9 but everytime I strip for a shower all I see is an alien boob and scars and I know I will never be the same again. One of my closest friends hasn't been near me since the day I told her of my diagnosis and because I've been lucky enough not to need chemo most people are behaving like this is a blip and I now need to get on and return to 'normal'.  One person even compared it to when she had sinusitis and it hurt to move her head, so she could understand how uncomfortable I was moving about! I think the phrase out of sight out of mind is apt so maybe we should wear a bikini top around certain people as a reminder that covering up doesn't mean it hasn't happened and we have to live with the physical and emotional effects forever! ... View more

Thanks Mary, I'll give a call and ask for it to be sent to me as next appt. isn't until Feb xx ... View more

Hi Jillybee, I'm sorry that you've had to go through all of that and possibly more, sounds like a nightmare.  Sending you hugs, prayers and best wishes xx ... View more

Hi,   I prefer pre-invasive as pre-cancer is undermining and insulting.  My doctor/surgeon was crystal clear in telling me what I had was cancer (high grade multi focal DCIS comedo type with necrosis 83mmx79mm).  My BCN on the other hand described it as being the same as getting an abnormal smear test result! What utter rubbish, an abnormal smear test result (which I've had in the past) didn't result in a hysterectomy whereas my DCIS resulted in a mastectomy, discussed and agreed by a MDT as my only option.  Like others my surgeon gave me a signed form that entitles me to a 5 year prescription fee exemption card, don't recall getting that after an abnormal smear test.   My notes/copies of letters to my GP all refer to my diagnosis as cancer and I take serious offence when anyone down plays it.   In my opinion medical professionals/info booklets etc. All need to sing from the same hymn sheet so there isn't ambiguity over this diagnosis and we don't feel we need to justify our surgery or other treatment or convince anyone (including ourselves) that this is cancer.   This really does press my buttons...and breathe lol xx ... View more

Hi Jillybee, glad my post was comforting, I re-read it and thought it sounded like a rant lol. I am also part of MDT meetings as part of my job so I know cases are discussed weekly and decisions are made jointly by a team of experts. Whether the author of the article likes it or not I do consider myself a survivor of breast cancer and I'm glad that medical advancements enable me to say that and will help many others to say it. I'm sorry you had it twice, I hope you are doing okay now? ... View more

Hi I read this article and agree and disagree with it in parts regarding DCIS.   I can only look at things from my experience, perspective and the medical advice given to me. I went to my GP in 2014 having found a large lump and within two weeks underwent a mammogram, ultrasound and biopsies resulting in a diagnosis of high grade multi focal DCIS comedo type with necrosis spreading 80mm x 78mm with further microcalcifications in a wider area.  My surgeon was clear that the MDT agreed mastectomy with SLNB was the only option for me and that IDC couldn't be ruled out.  My surgeon was clear that this was cancer, not pre cancerous changes or a risk factor but cancer. The MDT were clear that with my diagnosis it was a question of when not if it became invasive. I underwent the mastectomy with SLNB and LD flap reconstruction and received the good news that there was no invasion or spread to lymph nodes.  How lucky am I. Sometimes I read articles about DCIS and they don't explain that there are different grades and sub types of DCIS that help medical professionals decide what treatment is best for each individual, which for me caused a lot of confusion in the early stages. To say DCIS can be dealt with easily and less invasively is perhaps a very straightforward way way of looking at it, though medically correct, for me it    has not been easy and has felt very invasive xx         ... View more