I was diagnosed with DCIS in February.  I had a wide local excision 3 weeks ago.  There were unclear margins so had a second op a week ago and will get the results from that on 7th April.  If that is OK I should start Radiotherapy in 5 weeks.

I've found telling others the most stressful, and trying to keep it from my Mum as she has Alzheimer's and I am her main carer.  I don't want to upset her, she writes really important things in her diary and reads them over and over and wouldn't be able to fully understand but would be upset every day.

Most of the time I feel fine and positive but occasionally have a bit of a wobble but don't feel I can say anything to family and friends as I don't want to upset them.  I am having exemplary care, my surgeon is brilliant, I have my nurse who rings me to make sure I'm OK, but I don't want to say anything to them either as I feel a bit of a fraud (not sure that's the right term) as I know I am lucky that I only have DCIS and so many other are coping with so much more

I'm not good at discussing the way I feel either. It is normal to feel up and down, although physically I'm fine it is harder on the emotional side. I still haven't quite come to terms with it. Also I struggle with the change in my physical appearance. But I'm trying to be positive and now planning to do a sponsored walk raising some money for my breast care team so I have another focus. I am back in work, to keep my brain thinking of something else. You are not a fraud , I know exactly how you feel but take a step at a time and move forward. 

Got my results yesterday.  The second op discovered much more DCIS, I now have to have a mastectomy, would you mind me asking what kind of reconstruction you had?  I don't want an implant, so considering other options.

Thanks

Sorry I should have replied earlier . I had a latissimus Dorsi flap with an implant. Result reasonable but still I haven't accepted my changed appearance. It is not the surgeons fault as he did a wonderful job but it has affected me mentally as it changes you. I have seen many women with reconstructions or mastectomies but this did not prepare me in any way. At the end of the day you have to make thevrightvdecision for you.

HI Jane. I am glad to read you are on the mend and that you posted positve comments about the surgery. I am waiting to go back and have the full diagnosis next week 9th, all i heared was Cancer and Mastectomy.. and its been hell waiting. what does clear margains mean ?  and if you dont mind me asking how long is it before they have you back for reconstruction. I have been scared to death about the pain side too of an op. Even though i have given birth twice its not quite the same as having an actual part of your body cut off ! Emotionally do you feel ok after having the reconstruction, does it feel different. I have been single 7 years after a long marriage ended and have not had a bf in that time just the odd random flings after, but  i have not been intimate with a man now for 4 years and im feeling so insecure at the thought of looking deformed or abnormal, but then i feel guilty for feeling these thoughts as if feels like im being vain. I dont even know if they will remove it yet but its all running around my head like a crazy person.... Suzie.

I had reconstruction at the same time as mastectomy. Ask if you can have this done. If your nodes are clear I can't see why not. I am 62 but I found the surgery pretty ok. Up and around the next day, pain nowhere near as bad as you think. Home within 5 days. I think I was out walking within the week. My main painkiller was paracetamol! I am married and the intimate side has been very difficult. I haven't yet come to terms with my change in physical appearance. I even haven't yet shown my husband as I have found it very hard but I know it is ridiculous. I have seen many women with mastectomies and don't find it anyway terrible but when it comes to myself I just cannot come to terms with it so it shows we are all human. I am back in work now, 3months after surgery. I have done loads of walking and even doing a sponsored walk for my breast team.  You are not crazy, it is all normal and I still get down days but I try to be positive. I'm a very down to earth person so I find  this has been a huge learning curve. My advice is go ahead , you can get through it. When they take the excision they look around the area to make sure that all the abnormal tissue has bend removed, if some of the cells don't look quite normal then they say the margins aren't clear and then the surgeons can't be absolutely sure they have removed all the cancerous area. It is difficult to understand but your nurse should be able to explain this in simple terms. Because my margins weren't clear I was advised to have a mastectomy. When they did this a tiny area of cancer was seen in the breast tissue so it was good I had this done. Don't get me wrong I was devastated but deep down I know it was the right thing to do. Your consultant is the one you want to discuss it with as he will know best. Still a big decision do give yourself time. Take care and I hope this helps. Being a nurse is very different to being a patient!

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I have mastectomy and reconstruction planned 18 May but tbh it's thought of chemo that bothers me most. Won't know till after surgery if I'll need it. I've surprised myself how I've been since diagnosis 17 Mar. I go for long spells without even thinking about it, going to work as normal and still laugh every day. I am nervous how I will look and feel after it. I was single for 4 yrs after splitting from long term partner so only been with my bf 18mnths but he has been so supportive and reassuring. I haven't told teenage daughter yet but plan to do that on Fri. Didn't want to give her too long to think abt it. Anyway fingers crossed for everyone on this chat, we',ll all get through it one way or other x

HI Jane. Thankyou for your reply. You have been very brave. I am sure you husband loves you no matter what, but I understand why you feel self concience about showing your body now. I never knew they could do a reconstruction at the same time as removal. seems to make sense to me ! 

I don't even know if I have to have it removed yet I am only going on other peoples experience and what the consultant said on the day he delivered the devistating news. Thanks for clearing up the " clear margins thing" Again as I have never experienced any of this its almost like everyone is speeking in a different language. I have just come back from a lovely woodland walk with my 18 yr old son and our dog for some moments I actually forget its happening to me then i feel some pain in my rib and I remember whats to come.... I have a 14 yr old daughter too, shes crying alot still. My son I can open up to about my fears and worries about next week when they tell me how bad it is. I am going throu all these emotions mostly angry because I have  been telling the Doctors about this since last year. ( a year and 5 months infact!) I feel had they sent me for a MRI not a CT scan and  Mamogram when i expressed thoughts about a lump months ago and took me seriously I would not be having this convo now ! I am 45- i Have so much to do yet with my life. My kids Need me. I am a single mum now of 7 years after a long marriage of 20 years ended. I have no one else in my life just my kids and my mum dad sister etc but no guy. Sometimes i feel if they take away my breast i wont ever be the same again.

For me for the last 7 years its been girls nights out, on the pull chatting up guys ( trying to find a bf if im honest) , sexy dresses, all about the hair ( don't even start me on that if i loose my hair I am seriously never leaving the house again, i can't even think about that) I enjoying being single and I feel i wont ever have that confidence again- I feel like they will know its not real ( i know i will) I know im talking as if i know its going to be removed but I fear the worst.

I was taking a shower this morning and looking down at my breast in the shower and cried why me why me!  I feel an over whelming feeling of sadness. I never smoked, i exercise, never done drugs , it feels so unfair...... In a way I am glad im not with a guy as i wont have to face being naked with him after an op and I can be alone in my bed without any pressure,but on the other hand I could use the support. I feel anyone i meet in the future ( if i ever do) is going to have to be a very special person as i am very shy of the whole sex thing with new men anyway ! and not even had a man in my bed for 4 years of the 7 single- Now suddenly there seems a whole new negative to deal with and lets face it what can be said about being told you got breast cancer as being a positive thing.

I am very worried about the emotional side of how i am going to feel when i look in the mirror. I am a nice curvy size 14/16 but never even got so much as one stretch mark when pregnant ! and to think what they doctors are proposing to do to my breast seems nothing short of barbaric ! 

You have a lot on your plate. I advise you take a step at a time. Your consultant and breast nurse will support you through any decision.  Like you I thought I was low risk, breast fed 3 children,never smoked, no family history etc and my consultant told me it was bad luck .  Looking in the mirror will not be as bad as you think. Be positive because you do have to get through this and you will. Keep going and talk to friends , your gp is also helpful and supportive. Hopefully soon you will know what is happening,sometimes it is the uncertainty.  Good luck and keep me posted.

Hello

 I had a lumpectomy, it was still very strange for me going from a 40 inch to a 32 bust size, with lots of scares.  I found once the treatment began, I became quite strong, even when I lost my hair.  I tried to keep positive most of the time, this does help I think.  The emphasis was more on getting better, and making the most of life.

Three years later, I now feel great, and look forward to the future. I know it is easy for people to say be positive, but once you know the treatment plan, you are on the way to getting better.

Keep posting for support.

Diane xxx