DCIS

[Cla46]

I'm so glad I read this, I was diagnosed with high grade DCIS 13/7/16 I had a pain in my boob went and got it checked then got sent for a mammogram and ultrasound had a call back within the week for biopsies and was then told the news 🙁 it's all contained as far as they know and I've got an MRI on the 29 th July to check size and 2 other sites in my right breast then a discussion about surgery. I'm fine with the surgery bit but terrified of radiotherapy etc if I need it. My mood is swinging all over the place I just want it gone and to get back to normal although I know it'll never be normal now!! I scared myself by reading a lot so now I've stopped . I've been working which has helped keep my mind off things enormously but I break up for the 6 weeks hols tomorrow so I made a plan to pass the time before my next appointment. Im so glad I'm not the only one to feel this way xx

[76Ag]

I feel exactly the same as you. My DCIS was 10mm high grade with no invasive cells found . But having read so many articles on the subject it worries me that although the prognosis for DCIS is good because it is high grade it has a higher risk of coming back than if it had been graded as low or intermediate.

[Pluckyducky393]

Thanks Jo. Appreciate the reply. My story sounds similar to yours. Hopefully my sisters are OK too. Glad I found these forums xx

[Jill1998]

Or psychic even !!!!

[Jill1998]

Physic !!!!😜

[Jobey68]

Blimey Jill I've just posted the very same words.... Cancer is cancer!!! Separated at birth 😂

[Jobey68]

Hiya, welcome to the forum Plucky Ducky , great name under the circumstances!! 😜 DCIS isn't "pretend" cancer and you should in no way feel guilty and have every right to feel sorry for yourself! My diagnosis was relatively minor if there is such a thing and I too felt like I had gotten off lightly and had no right to get myself is a state over it but Cancer is cancer! I lost my mum to BC 13 years ago and when I was diagnosed I freaked out and thought I was going the same way but our diagnosis were poles apart and I soon learned I would be just fine, my 2 sisters have been for screening and thankfully are both fine, it's totally overwhelming but you will get your head around it all and always someone here to lean on 😍 

No idea why or how I am typing in bold BTW!! 😜 Xx Jo 

[Jill1998]

Cancer is cancer,not matter what your diagnosis it shakes you up ,it's makes you very aware of your own mortality,don't give yourself a hard time for finding it hard .

[Pluckyducky393]

Thanks for the response x. name is an old nickname 🙂 Lots of breast cancer in my family with mum, aunt and great aunts. I'm the first of the next generation. Sisters getting screening now too. I'm all of a sudden overwhelmed by it all. I think I just tried to get it over with and talk of DCIS not being 'real' cancer or serious made me feel guilty feeling bad for myself especially when you read others stories. I'll check out that monthly treatment forum when I start radiotherapy. Thanks x

[Jill1998]

Hi Pluckyducky (interesting name !),welcome to the forum .Not surprised you feel exhausted ,you have had a major shock followed by surgery and further treatment to gear yourself up for ,you have probably been running on adrenalin and now things have calmed down a bit you get a big slump.Good luck with the rest of your treatment ,there are monthly threads for people going through radiotherapy at the same time in the going through treatment section.Jill.

[Pluckyducky393]

I'm new here. Ask doc about risk of cancer due to family history. Had no symptoms. Was so shocked to be diagnosed with DCIS 2.7cm. Had surgery 3 weeks ago and jumped full force back to life. Never stopped and now all of a sudden feeling completely exhausted and emotional. Radiotherapy to follow.

[Lambykin]

Ps find out as much as you can re types of breast cancer/stage and grade and treatment .... All useful info to your specialists

[Lambykin]

Sorry to hear this ... Take a day at a time but ask for genetics review - my geneticist says my family history is diverse so I have no more risk of cancer than anyone else

[Kris]

Hi I'm new here and was told yesterday I have dcis very scared ,have to have op ,day surgery ,and then possible radiotherapy I feel sick thinking about it ! Breast cancer runs in my family unfortunately.anybody had the same ? 

[Lambykin]

I have been really up and down too - mine was high grade but only 6mm so no oncology - was going to get tamoxifen but as on HRT it's enough to just stop taking that. Every reason to be positive. Was very bruised and sore so off work for 4 weeks but back now. Saw my breast today from different angle was previously unaware of the distorted shape so that upset me. It's a rollercoaster. Genetics appt on 14th March because of high incidence of cancer - my cousin died this week from a type of leukaemia. So I am still struggling with the emotional side although all the signs are good for me I can't help getting mini panic attacks. So goo to share all this as not told anyone else.

[Anita]

Hi I'm waiting for lumpectomy on March 24th was diagnosed in February after routine mammogram, I too hadn't found a lump. I've been told its 1.9 cm & hopefully I won't need chemotherapy but won't know til after the op. It seems ages til my op everyone else seems to have them quickly once they're diagnosed. So in my dark moments I imagine it growing & spreading. I can understand perfectly where you're coming from Aggielou I know even after treatment if I'm told I'm o.k. I shall worry about it coming back & every mammogram will terrify me. Being able to talk to others going through the same is helpful though. Anita x

[Aggielou]

Hi Lambykin and Julia1 and anyone else who can offer any thoughts. 

I haven't contributed to this thread since my first time-.was trying not to read too much and concentrate on my surgery. Had WLE ON 4 Feb. Biggest fear was actually having anaesthetic cos never had one before but was fine. Had wire put in at 8.15 and then waited for the op - I was late on list so didn't go down til about 3 pm.All went fine , only needed paracetamol for discomfort- no real pain..

ANYWAY.... Went for results on Mon (22nd)   Was good news - all DCIS with no invasive cancer found . Have oncology appt to plan radiotherapy as was high grade. Surgeon said he had been concerned that there would be some invasive cos it was larger than thought( 5.3 cm) and had formed a lump . So I feel very lucky.

WHY THEN..... Over past 2 days since having that good news ,do I feel low and can only think about high chances of recurrence ( esp as was high grade) and despite going to have annual mammograms what if still recurs ..

Also - have read that some hospitals give tamoxifen following radiotherapy for DCIS if it is oestrogen receptive as research shows that it further reduces risk of recurrence. Not routinely given where I live but can discuss with oncologist. Again , feel worried cos if its left up to me , won't know what to choose as tamoxifen has risks of its own. .

Think I should feel much more positive than this. Maybe it's just the culmination of the ups and downs since being told on Christmas Eve till now when I got definitive diagnosis. Has anyone else felt like this?

[Lambykin]

Hi Angielou
Just thought I would say hi ... If you read my original post you will know my situation is similar to yours - picked up on routine mammogram - no lump or discomfort - had 5 gas assisted needle biopsies which diagnosed DCIS but I did not get told the grade - just that it's a small area (8mm) in one duct ... Had the wire guided local incision on 21/22 Jan (take some painkillers for the wire insertion I found it quite uncomfortable) op itself was fine only prob I have had was bruising (try arnica cream) scar is 3 inches and healing beautifully ... Some mild scratchy stabbing pains now but assume that's just the healing process. Now back in the 'waiting room' again until they tell me what's next ... Appointment on 4 Feb to find out .... Will be thinking of you as you prepare for surgery ... Expect to return to work after the 2 weeks off but will see how it goes on Thursday ....

[Julia1]

Hi Aggielou

Ask as many questions as you like. I went to doctor complaining of a sore area on breast and decided to pay private to get seen immediately. Mammogram and scan done but s nothing showing there then they do a third assessment which was a biopsy. This picked up initially low grade DCIS. However I had a phonecall following day saying another pathologist had looked at results and thought maybe atypical cells. Whichever it was I needed a diagnostic excision to take larger sample. This was when they then told me it was def DCIS and would need further op to remove. Due to my anxiety I said that I was worried how much they needed to take as Couldn t see area in scans etc and i felt I Couldn t go through all the waiting again. She suggested mri to check as this may give better picture. Had Mri Tuesday which did show up Two small areas in different areas of breast. They did say could biopsy to make 100 percent sure but they were 80 percent positive that this it what is was. They said could be chance that it was normal tissue as sometimes Mri scans show up false positive but I decided to get rid once and for all. Let me know how you get on xx

[Aggielou]

Hi Julia- thanks for quick reply. Am a complete newcomer to forums. Sorry to hear that more DCIS has been found but feel you are making the right choice , despite it being very difficult decision. Do you mind me asking how your DCIS was picked up if out didn't show on mammogram? Also, what were the further tests after the unclear margins? Not just being nosey- it helps to hear other people's experiences as it broadens understanding so I can add medics more questions as they arise. Had prep assessment on Weds but still can't quite believe will actually be having surgery next Thurs and it will be over this time next week. My BCN advised 2-3 weeks off work but will have to wait and see    X

[Julia1]

Hi Aggielou

I had a diagnostic excision for suspected DCIS 2 weeks ago as there was some uncertainty as to whether DCIS or atypical cells. This is similar to a wide local excision and I can honestly say the recovery was not an issue. Operation only was about 40 minutes and hardly any pain afterwards. My results came back as mixed grade DCIS ranging from low to high and as there was no clear margins then I had further tests to see what tissue they needed to take. My case is strange in that nothing was showing on mammogram, ultrasound and so difficult to decide what to remove. Decided to give me mri on Tuesday and results showed today another small area of DCIS in other part of breast. I made the decision to have a mastectomy with reconstruction at a later time. This is a drastic decision but the right one for me as could not wait to see if anything invasive developed. Let me know how u get on x

[Aggielou]

Hi- recently diagnosed with DCIS ( first lot of biopsies taken on Christmas Eve , then had to wait for 2 weeks for results cos bank hols)  Those results inconclusive so more biopsies which came back as high grade DCIS. Am having WLE on 4 Feb and probable radiotherapy .  Have never had an operation so worried about that but my main worry is that they may find some invasive cancer cells in amongst the DCIS which I know is not uncommon . So ,instead of focussing on fact that DCIS is a better diagnosis , I'm worrying about getting worse news! Anyone else felt the same? Am not even really sure what my breast will look like after the surgery - am only 32-34B to start with.      

[Lambykin]

op done - bit bruised and sore but no real pain ... Just very tired ... How much time off work do people take? Nurse suggested 2 weeks but fit note suggests 1 week ... Now waiting begins again ... Follow up on4th Feb - an auspicious day - https://www.breastcancercare.org.uk/world-cancer-day

[Julia1]

Feeling really anxious again. Feeling well after the wide local excision last week but now anxious about results. It s been such a roller coaster this last month. Firstly being told DCIS and then atypical cells. Just hope that results come in good and that no further action is needed. How do you all cope with the anxiety ?

[Julia1]

Thank you. I ll send you an e mail now to keep in touch xx

[Lambykin]

@julia1 just to let you know I am thinking of you

[Lambykin]

Hi Julia1 how are you feeling about tomorrow/Wed? I have pre-assessment tomorrow so will think of you - Sarah (theangrysheep@msn.com)

[Julia1]

Hi @nickif

How are your rads ? Xx

[Julia1]

As if you haven t got enough on your plate, you would think hospital would get it right. All bit up in air with me too as consultant said in on the 12th for guide wire, op on 13th and then home on 14th but nothing in writing. Didn't t say I could come home after the guide wire. I ll check with them tomorrow if staying in or not. I m bit gutted as its my daughters 13 th birthday on the 14th and I won t be there in morning to see her. I haven t told my children yet that I m going into hospital as don t want to worry them. If you want me to give you my e mail address to keep in touch, let me know x

[Lambykin]

Yes go home then go back the following morning. Getting bit annoyed now as just had appt through to sign consent - I have already done that. The surgeon had said they would do the pre admission the same day I saw him but we got sent home after doing the consent and then realised not done so now got to go back on 12/1 and today get another letter saying got to do consent! I know it was Christmas Eve and bit chaotic but really this is third 'admin error/misinformation' the hospital have made. I know I shouldn't get too het up but it makes me cross. Sorry for the ramble. Feel in limbo now just waiting can't concentrate on much. Heart keeps racing. Then feel a fraud coz others have a much worse prognosis than me ....

[Julia1]

Hi Lambykin1. Glad to hear you re not doing too bad. I m the same with the guide wire. Having it done on the 12th and then op on 13th. Did they say you ll have to stay in once you ve had wire put in or can u come home? Still feeling a little anxious but am sleeping better. Keep in touch and let me know how everything goes xx

[Lambykin]

Hi Julia1 not too bad trying not to dwell on things too much ... Annoyed with hospital as they told me guide wire and op on 22 Jan and so rearranged my work diary and now they want to do guide wire on 21 Jan and op on 22 Jan 😡 Makes things difficult at work. Part of me also feels a sort of fraud when I know others are in a much worse position than me - daft aren't I? Hope you are ok and not too anxious x

[Julia1]

@Lanbykin

Just wanted to drop you a note to ask how you doing? X

[Julia1]

Two weeks today and I will be having the wide local excision for abnormal cells. Feeling anxious that results will confirm this and nothing else x

[Suziex]

Hi All

I would just like to say good luck to you all I was diagnosed with DCIS 5 years ago had mastectomy and no further treatment except hormone therapy you must make sure to to ask if your DCIS is hormone related in which case you will have to have tamoxifen or letrozole for 5 years.

xx

[Julia1]

@Lambykin

Thanks for your comment. I have done some research on the op and it doesn't appear to be too bad. Recovery seems to be quick too. I think the worst part will be waiting for results. I think whatever the outcome, we are lucky found so early and no aggressive treatment will be needed. I m just hoping that results from op will be ok. I suffer terribly from anxiety and always think on the worst side. We ll be ok and get through it together xxx

[Lambykin]

@julia1 that sounds positive - I am more anxious about the surgery than anything which probably sounds silly ... But it's not as if there is a choice really ... It seems so long to wait but when I think about it it's already been 25 days since the mammogram and 26 till the op so it will soon pass ...

[Julia1]

@Lambykin

Hi. Glad all looks good for you and it being in its early stages. I had some good news Thursday. Results of second lot of biopsies came in and the area around abnormal area was clear. Also pathologist said that the biopsy they took again from abnormal area are atypical cells. Three pathologists have looked at results. First said DCIS and the other two are saying atypical cells. Having op on the 13th Jan to remove abnormal area and then have to wait 2 weeks for results. Feel bit better but still having overwhelming moments of anxiety. Consultant said Couldn t say 100% not DCIS but positive cos two other pathologists said atypical cells. Please keep in touch and let me know how you get on. You re not alone with this xx

[Julia1]

@Lambykin

Hi. Glad all looks good for you and it being in its early stages. I had some good news Thursday. Results of second lot of biopsies came in and the area around abnormal area was clear. Also pathologist said that the biopsy they took again from abnormal area are atypical cells. Three pathologists have looked at results. First said DCIS and the other two are saying atypical cells. Having op on the 13th Jan to remove abnormal area and then have to wait 2 weeks for results. Feel bit better but still having overwhelming moments of anxiety. Consultant said Couldn t say 100% not DCIS but positive cos two other pathologists said atypical cells. Please keep in touch and let me know how you get on. You re not alone with this xx

[Lambykin]

Hi all I hope that you all managed to have a good Christmas despite the anxiety. We met my surgeon on Thursday - he was very reassuring that the cancer is in it's earliest stage and he is confident that if it's treated now it won't affect my long term health. He hopes radiotherapy won't be required as you only get one shot at it ... I had not realised that. My sugery is on 22nd Jan - longer than I had hoped but not to long. I am trying (not suceesfully) to put it to the back of my mind ....

[Lambykin]

@julia1 How did appt go? Were results available?

[Lambykin]

Hi all I hope that you all mana gaged to have a good Christmas despite the anxiety.  We met my surgeon on Thursday - he was very reassuring that the cancer is in it's earliest stage and he is confident that if it's treated now it won't affect my long term health.  He hopes radiotherapy won't be required as you only get one shot at it ... I had not realised that.  My sugery is on 22nd Jan - longer than I had hoped but not to long.  I am trying (not suceesfully) to put it to the back of my mind ....  

[Julia1]

Thank you Jan. Your words are comforting x

[Julia1]

To nickf

Thank you so much for your reassurance. It s been such a roller coaster of ride. Told last Thursday low grade DCIS and then phone call next day to say another pathologist had looked at results and said atypical cells and not DCIS. Consultant said there is a very fine line between the two. As a result she suggested more biopsies to try and identify size of area affected so that she could remove on 12 th Jan. I have appointment tomorrow morning but she did warn me results may not be back. I have two daughters and trying to hide this from them is difficult. Thank you all for your support.

[nickif]

Lambykin, I have to have 20 sessions. Will finish them on the 26th Jan. Had a meeting at hospital today about them and I feel quite positive..I know I might have some side affects but will deal with them when or if I get them..

[nickif]

I feel for you Julia. I don't think I slept properly until I got my results after my lumpectomy, up until then you think the worst. I am feeling much more calm, sleeping better (except for the tamoxifen hot flushes) and ready for my hopefully last lot of treatment next week. It does get better hun xxx

[Jan-65]

Hi there

To you and the other ladies that are recently diagnosed.  I was diagnosed on 2nd April 2014 with high grade 5cm dcis underneath my nipple, at first I was told this was a papilloma which is a non cancer tumour but biopsy results showed DCIS.  I ended up having 2 Lumpectomies and removal of my nipple and aerola, plus 15 radiotherapy sessions. 

I totally understand how frightened and alone you can feel but please believe me this will pass and you will be totally fine. The treatment is really ok, and radiotherapy as scary as it sounds is not too bad at all.  

I might have a boob that is smaller than the other and looks different but it is a small price to pay for good health.  If I knew then what I know now, I would tell myself to put things in perspective and not to dwell each day on what is happening and try to get on with life as normally as possible.  DCIS is very early cancer and in comparision to other cancers this is the most treatable/cureable.  

Please please talk things over with your breast care nurse and or friends or just come on here and ask questions, do not feel alone and scared we are all here to help and support you. 

You can ask me anything and I will answer honestly.

Take good care of yourselves xx

[Julia1]

How are you dealing with anxiety? I m not sleeping, eating and just feel so alone ( despite having lovely friends and family). It s the waiting that I can t handle. Panic attacks overwhelming me.

[Lambykin]

Hope the rads go ok - how long/often do you have to have sessions?