Low grade DCIS

I wanted to hear from anyone who has had low grade DCIS and had a positive outcome following nipple removal and radiotherapy? My microdochectomy showed I had early DCIS and the MRI showed 7mm. The plan is to remove my nipple where the bleeding first started and to follow up with radiotherapy. Had CT scan on Tuesday but she couldn’t see it. Seeing consultant on Monday and wondered am I gonna look like a volcano breast? How was the recovery time.

Hi Coralie, 

I am sure any users who have had experience of low grade DCIS will be along soon to share their experiences. In the meantime you can always call our helpline on 0808 800 6000 who will be able to chat through your questions and offer a friendly ear. The opening hours are below. 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

Best wishes, 

Lizzy 

May be worth reposting your question in the surgery section too Coralie .

Thanksxx I’ve been given a date now. 5th Dec to remove nipple and 7mm of DCIS. Four weeks after will be radiotherapy for 3 weeks. He said I may have to have more off if they can’t get clear margins. That terrifies me. I was on HRT so they can’t do any reconstruction as I’m too firm. I will have one small and one bigger boob. They will offer me a tattoo nipple in the future.

When is your operation rj7777? Will I be able to get the same time every day. I need to plan around my son who is autistic.

Thanks for that as it is a worry.

My operation is this thu 17th. Not sure about the appointments for rads. Where do you live? I live in Kent and they have been pretty good so far. X

I live in Forest Hill. I’m going to Guy’shospital on 5th for this nipple removal and WLE not sure what it is excactly. I had a microdochectomy to remove the duct to stop bleeding and test. Unfortunately they didn’t get it all and I have to have wider margin. Not sure how I will feel after for going back to work as I’m a hairdresser at the end of my career, so I’m hanging on for as long as possible. I’m 65. My son is autistic so I want to try and recover asap. Scared about radiotherapy yet I’m lucky it’s only 3 weeks. Just have to plan everything, cause of my son. I feel everyone else is so brave what they are going through. Good luck for your operation ladies.

Blueash how are you feeling after the rads? How long are you at the hospital?. Can you drive after?

Forest hill is that near brockley? My best friends brother is severely autistic so I do know some of the challenges you face. From what I’ve been told radiotherapy isn’t that bad some tiredness and skin burn. It only lasts a few seconds and is painless I think. I’d have that over chemo any day!

I hear you about being left alone. They’ve offered me to tattoo a nipple but can’t reconstruction because I’m too firm and small. Thanks for the radiotherapy info. Good luck

HI Steph I wondered why you opted for mastectomy for Low grade DCIS? I was going to ask for that when I went for my consultantaction but he threw his hands in the air and said it was overkill for me. According to the MRI I have 7mm in one duct. I’m praying that’s it but worried, is it?

Hi RJ7777 I hear you on that one. Good luck with your rads.

Hiya Steph I understand what you mean now. I would do the same in your position. I saw the consultant with the intention to have a mastectomy because I didn’t understand that there are different sizes of this DCIS. are you having a reconstruction at same time? I’ve been told they can’t do anything to reconstruct the top of mine as I’m too firm and small. I think I’m going to look mutilated. How did you find out you had it? My sign was bleeding nipple. No show on the mammogram or CT Scan. I certainly wouldn’t wait for this DCIS timebomb to go off. Your doing the right thing.

Hiya Steph thanks for the compliment on my name. After I did my first post the forum said I shouldn’t use my real name but it’s to late now. I’ve been feeling tired too after the microdochectomy. They say it’s the anaesthetic. I’m getting sweats and aches too as I’ve had to cold turkey my HRT. Two girls at work have had mastectomy with radiotherapy and tamoxifen. One had reconstruction5 years ago, 10 years after her mastectomy. The other one hasn’t. They look so beautiful and we’ll sort you have that to look forward to. I would never have done a wait and see trial. You’re doing the right thing. I will have one small boob and one larger but in the scheme of things, I’m lucky. I just want it all over with. Hugs to you

Hi Coralie,you can change your user name to something a little more anonymous if you want.Your past posts will show under your new user name.Its easy to forget sometimes that anyone can read our posts so it is better to be a little more anonymous really .

Hi Jill I did respond to a name change by email and it didn’t happen so I don’t mind now.