DCIS - 28 years old and scared

I went to the gp in august as had blood coming out of my nipple. Told likely blocked milk gland and very common, had them removed in September results came back last week to say I had a 20mm area of DCIS that needed to be removed. I then had a mammogram which found another area, which I will have a biopsy on on Wednesday. I’ve been prewarned I will need a mastectomy, one boob is good though. Not worried about the op or losing my boob but the dcis part specially as there are two areas now and I’m still quite young the consultant said it was rare in my age group. It is this waiting around I don’t like. How long from finding out to being back on form and should I be getting gene tested, what about lymphs so many uncertainties x x x

Hi Michelle, it is a very scary time but this forum is great for support so you have come to the right place. I don’t know how long til it is all sorted but my diagnosis was 7th Sept and I’ve been told to aim for after Christmas - at the earliest- for a return to work. The waiting truly is the worst part - every appointment brings worries!! Try to stay in the day and get all the support you can xxx

Hi Michelle 

I was diagnosed with low grade DCIS  and other suspicious cells in August , the type of DCIS I have has determined that I am lower down the ladder for timescale to op  , this is absolutely fine with me . I too have to have a mastectomy and it was mentioned at the first consultation when I was told of my diagnosis . I am very lucky in comparison to some ladies in that at present I dont have to have chemo . The thing that I have learnt is that the picture unfolds more with every visit and until the tissue from the mastectomy is sent off for histology the final picture will not be clear . I was very impatient initially and very anxious about the unknown and waiting . I now have a plan and dates and I feel much better . I am having my lymph node ( 2 or 3 ) biopsy on 17th Nov , results 30th and op on 5th Dec . As well  I have to start on Tamoxifen and have a CT on my abdomen to check if blood vessels are viable as this is where the tissue is hopefully being taken from for my reconstruction . So I guess moral of story is everyone is different and timescales differ although like you I wanted to know so I could sort it out in my head and plan . the gene part I have no idea except someone I know has been gene tested and they did it after she had her mastectomy and treatment . Your breast care nurse should be able to tell you . I spoke to my breast care nurse from hospital and the nurse on this site quite a few times initially beacause I couldnt make sense of things . All nurses were lovely and even though Im sure some of my questions were silly I felt that they were listening to me . The girls on here are fab too and Iv had so much comfort from coming on here . Steph xx


HI Michelle, it is a difficult time when you first find out, so much to get your head around and what seems like so many unknowns - as others have said, things do improve as results and a treatment plan gradually fall into place. I’m no expert but I have had genetic testing - I had cancer in both sides (tho thankfully both DCIS and only a very small area on the left) and also some other stuff going on which lead the medical team to question if there was something genetic. I think if enough pieces of the picture (family history, specific medical symptoms) are present then they will look at testing - I don’t know if your age is a factor in this.

Re the lymph nodes - my consultant said it would be standard to do a sentinal lymph node biopsy with a mastectomy even though they were fairly sure it hadn’t spread as it does give a way of double checking. I think this is fairly standard but of course your team / BCN will know for sure.

Hope things start to fall into place a little for you soon xx

Thanks everyone, I just want to fast forward this week. Having up and down days, don’t know if should be going into work or what. I’m a teacher so finding it rather difficult at moment in terms of focusing on my own emotions. How much time did people take off? I also have PCOS which is related to hormones so wondering if any links there. So many questions hopefully feel more normal once have some answers to those. Xxxxx

Hi Michelle, I am a teacher too and 9nly did 2 days back in work after the summer hols before being diagnosed on 7th Sept. Then had my pre op and a week off before my op due o docs saying they did not want me to get bugs or anything as it would delay my op. I have been told to aim for returning after Christmas. Wok would be a distraction but I would not be able to apply myself properly at the moment and my head and colleagues have been fantastic. Do whatever you feel is necessary for you - my friend said to e someone else can do everything else but only you can fight the cancer and get through what you have to get through - this is a time when you have to put yourself first her ever possible xx

I’ve already had a week off when they took the milk ducts out but be looking at mastectomy not sure how long will need especially as teaching isn’t sitting at a desk. Came home today as head wasn’t right hoping to be back Thursday and Friday so will wait and see. All a bit up in the air with dates, will feel better I think when fully know. School have been great, just guess finding it hard to focus on me…have you had your op? Definitely thinking will need gradual back to work once things all sorted…thanks for all support x x x

I had biopsy on 24th Aug. Results & diagnosis on 7th Sept then WLE on 19th September. I was really worried and scared of op but everyone was lovely. Got results from op last Wednesday which showed all DCIS and clear margins on 3 sides but close to the edge on the other. So now I am having 2nd op next week to take 'a shaving ’ they said to get a clear margin. 4 to 6 weeks after that I will begin 3 weeks of radium. All a bit of a shock to say the least but now just trying to get on with it. I went into work the day after my diagnosis as if it ‘was just one of those things’ but then i listened to what me BCN said and i havent been back since. Michelle you are coping with a lot and work is just one thing that you could do without - unless that is you find it easier to cope going to work. Call your BCN or the nurses on this site and chat to them about how you feel etc. They will be great at helping you to come to a decision about work. Will be thinking of you tomorrow and I hope you have lots of love and support xx

Bless ya, what age do you teach? I’ve just moved schools in our federation and started a promotion so timing is pretty rubbish, but everyone has been brilliant. Had yesterday and today off (have my biospy today) and hopefully will be okay for Thursday and Friday and then next Thursday should have the full results and dates of what is happening when. It is this waiting that I am finding the hardest.

I have a whole list of questions for the nurses/consultants so might get some answers today.


I teach year 7 in a special school and music to years 7 - 9. Hope today goes well and you get some Answers xxx

Bet that can be rewarding. Didn’t really get any answers other than what happens during biopsy and next stage. Now got myself worrying as a gland near my ear is all lumpy and raised so wondering if there is any link…love to fast forward clock so have a understanding if what is wrong and how it will be fixed. Bodies just so complicated…xx

Phone your nurse or go to your GPS about gland. Could be just a reaction to you being stressed. Try to rest and give yourself space to get over today! When do you get results?

I am struggling with work, my class are hard work (I know people say shouldn’t say that and that all classes are the same, it’s the adults) and finding it hard to stay focused and in control of my emotions while in class. Hoping to get through today but we will see. Worrying about a gland too, so going to phone nurses, time has never gone so slow.
How was the mastectomy and reconstruction? At the minute I just want the mastectomy and consider reconstruction later. All just very emotional and no idea what should or shouldn’t be feeling…thanks x x x

Michelle be kind to yourself and take time off. Ring your nurse or GPS today. Have you got family support?

School have been great, I did manage a day yesterday but taking today off. Have been signed off and lots of people at work surprised I have been in, but the distraction was great yesterday but know I won’t be able to sustain The Act. Least less than a week till get results. Just not sure how long to expect to wait for op, the hospital have been fab and don’t think they like to hang around but you never know. How was reconstruction? I still need to make decisions x

Glad you are taking time for yourself Michelle. Rest up. Praying for good results for you x

Thanks everyone you are all great and I’m convinced it is the support I have around me that keeps me strong. If honest things haven’t really sunk in and struggling to believe it all.
I’m off work this week, popping in and out but not in charge of children!! Hate thought I can’t do my job and unlikely to be able to do it properly for some time, got to try really hard to focus on me!!
I have to still make decisions on reconstruction but will do that more with results on Thursday but at moment just want rid of DCIS.
Did anyone have come back in their other boob? X x x

Hi guys, results on Thursday as expected more dcis found and also found out it was high grade. Booked in for a mastectomy on Thursday with pre ops tomorrow. Not having reconstruction at moment as just want to get rid of DCIS and get back to normal and see how go with prostheses. Been a funny week as get those results, sell the house and buy another. All a bit nervous as taking samples from lymphs to check unlikely to show anything but so nervous as this is all a million miles away but will be glad to know it’s being dealt with. Anyone any experience with life or holiday insurance? Xxx

No experience with finding insurance after diagnosis Michelle. At least now you know when you’re op is and can prepare. Hope you are coping ok and have plenty of support xx

Support has been fantastic, been up and down and normally really positive but now again worry about the firther results and things. Just been looking at prosthesis and things on market, seem to be some differences between England and Wales, (I’m in England!). Will soon have experience around insurance when sort life insurance for mortgage. thanks everyone x x