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Recently diagnosed with DCIS.

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Recently diagnosed with DCIS.

Hi everybody. I have been recently diagnosed with DCIS and will be having my operation on the 28th October.

I now realise that I did not ask enough questions at the time , and now all these appointments have arrived and I'm become slightly overwhelmed by it all . I seem to spend all my time telling everyone else that it's not as serious as it might have been, however, I know now ( the Internet is a wonderful thing!!) that there is a whole lot of stuff that could happen. I guess I'm just looking for someone to tell me that everything is going to be ok but deep down I know that life will never be same .

Sorry I seem to be ranting , writing it down is a big help.
If anyone is out there, thanks for listening !!
15 REPLIES 15
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I had high grade DCIS on one side,showed up as a smattering of white dots all over,then recently DX with tumour 4.5 inches across,again high grade.Mx both times but no RT......but we are all different,as are our Drs and consultants.
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Hi All - Hi Maisiecat

I was diagnosed with DCIS (Intermediate grade) in October and have since had a wireguided WLE and a second WLE the same as you Masiecat

I found out today that the margins were clear following my second WLE and my consultant said that I would receive an appointment from the Oncology department to discuss options for Radio therapy. 

There was only a small area of Intermediate grade (5mm) and the rest (30mm) was low grade. 

Obviously i need to speak to the oncologist, but I'm not sure whether the radio therapy is needed after a low grade DCIS? I work freelance so I'm not sure whether this would mean I would need to be off work for a further 3 weeks?  

I only took 1 week after each of the other surgeries and am back to work.  Any thoughts would be really appreciated! 

thanks! Zoe 

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Thanks again everyone for your comments . My return to work went on although I'd only been at my desk an hour and I was ready for a nap!!!! I'm doing a phased return so only doing half days for the next week or so. Then I will be off again during my Radiotherapy ( mainly because I will have to travel from Bromsgrove ( Worcestershire ) to Coventry everyday for the treatment !!!) Hopefully, in time, the pain and stiffness in my arm will ease . Has anyone suffered any side effects from their Radiotherapy treatment ???
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I had nerve pain,all down my arm to elbow,then further down to the wrist.BUT it did go.This was following my DIEP.When I had lymph nodes looked at after my initial operation the pain under the arm was really stingy,for want of a better word.Called BCN and this was normal,and she said just think what it was like a week previous,and yes,had improved
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So pleased to hear all is as well as it can be. I was diagnosed about the same time as you and having mastectomy on 4th dec with immediate implant and reduction to other boob in same op. My bmi was too high for any tissue recon options. Positive vibes to anyone else going through this trauma. X
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Hi Maisiecat,
Good to hear that nodes are clear and lump small. Sympathise re the long wait on day of op - I had to wait rather too many hours testing my meditation abilities!
I got nerve pain in my back rather than arm. Found usual painkillers didn't help so took amytriptyline for awhile which seemed to sort it. Med can make you sleep for ages, about 12 hrs a night I found, which can make it tricky getting back to a new normal.
Hope the PT return to work goes ok and arm pain eases a bit.
All the best Seabreeze
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Thank you everyone who replied . My operation went ok. A bit traumatic as I was last on the list and ended up staying overnight because I didn't come back from theatre until 7pm. I'm 3 weeks down the line, I have been told that It was in fact less than 2mm in size and the SNB came back clear so all I need now is some radiotherapy . I'm having some pain under my arm and down the arm to the elbow which I've been told is just nerve damage and should heal with time. This afternoon i'm going back to work ( just part time for now) and I'm looking forward to it. Has anyone else had problems after surgery with pain under the arm???
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I have had DCIS,twice,both high grade.First one Dx 1999,the other side 2013.both times decision made for me.Consultant told me both times I would need radical Mastectomies.I don't think I could have made any decision..First lot was all in the ducts,second one was a large tumour,15cm wide.Helen by the sea....you do get better,inside and out.A complete roller coaster though
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I was told 97% are this and 96% are that. And that is how the hospital tell you. Hang on to that....
i had dcis and was like you saying to friends that it could be benign or not, then i got told mine was not, then told lumpectomy usual treatment but then had to have mastectomy...so my journey got bigger and wa a real roller coaster.
everyone s journey is like that. The waiting is the worst, no one who has never waited can fully understand that. A few weeks after surgery, they,ll tell you the big results which affect future treatment, i was 97%, so did not need chemo or rads... Big relief and then you have to find the new you and get better,...ouside, inside and in your head
Helen
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hi there . as your reading this your op should be over , just wanted to say hi and hope all goes well x deborah

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Hi Maisecat

 

I also was diagnosed with DCIS back in April.  I had 2 wide local excision ops and then 15 sessions of radiotherapy.  Having had the treatment and am now healed I can with confidence say you will be ok!! Everything with be fine. If your having a lumpectomy it is a relatively minor op and I can say that despite the fact I also lost my nipple and aereola, I still consider it minor.  I'm not going to say you wont worry about the procedure, the healing and the what if it comes back senario but we are so much luckier that the women who have had to endure mastectomy and chemotherapy.  I know what you mean about being overwhelmed by it all but DCIS is probably one of the least aggressive cancers please dont forget that. 

Very best of luck for 28th not that you will need it.

 

Chin up xx

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I am in a very similar situation - recently diagnosed and with an op scheduled for Oct 29!  I also have been looking at the Internet - maybe different sites, because it's had the opposite effect on me.  I'm low grade DCIS - maybe yours is higher? - and I'm serously wondering whether it's worth having the op.  I've read many times that thousands of women have surgery unnecessarily, because in most cases DCIS does not develop into 'true' breast cancer for years, if at all.  So tell yourself you will probably gett the all-clear and have nothing to worry about afterwards!  

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Hi Maisiecat,
I was diagnosed with invasive ductal carcinoma in spring, had op to remove lump and test sentinel nodes, and radiotherapy, due to start medication soon. I too told everyone it was treatable - since I couldn't bare the thought of people thinking otherwise....and knew that in reality it was treatable re removal of lump and zap etc but small residual risk re other cells or reoccurrence. I became an Internet fiend at night for all kinds of info.....when in hindsight I actually would have been better coming to a website like this for reassurance of how I was feeling plus a bit of sharing of info. But hey....google ehh!
It sounds like you have a fairly philosophical approach....can treat it...but nothing will quite be the same....is a fairly sound approach. I've got though the first key stages....
If you have any q's feel free....
Seabreeze
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Hello Maisiecat

 

Sorry to hear of your diagnosis. I also had a diagnosis of dcis earlier this year and have recently finished treatment. This is a difficult time and even though dcis is deemed to be less serious it is still worrying and I too have concerns for the future.

Please feel free to ask any questions 🙂

Xxx

 

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Hi Maisiecat,

 

Welcome to the BCC discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

 

To help you along I have put for you below links to some of BCC's publications you might find helpful.  Also our helpline team are just a free phone call away if you would like to talk through your concerns.  The helpline staff are here to support you through this.  0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-...

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

Take care,

Jo, moderator