DCIS

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I’m 29 and have been told that I have DCIS today. I’m in shock. Me and DH where trying for DC3. I suppose that’s out of the question now. I can’t believe it. I really don’t know how to feel.

Bump

I am so sorry to hear your news. There is no right or wrong way to feel, have you contacted Macmillan?

Hi, i had this 5 years ago. And had 2 children after. I had to have a mastectomy as mine was at the very higher end of DCIS- but no other treatment.

What have you been told so far?

I don’t think I took much in. I wasn’t expecting it to be anything and then to be told it’s cancer but not an invasive cancer messed with my head a bit. I don’t know where I am with it all.
I need to decide between a mastectomy and a lumpectomy (?) The DCIS is huddled in one particular area of the boob so I could go for the less invasive option. They said because I am quite flat chested anyway though a mastectomy might make the most sense.
They also talked about radiotherapy and possible hormone therapy after that as it is ER+. 10 years of that would kill any chance of having another child though.
I don’t know how to feel. Feels a bit like I’ve been hit by a truck.

It's a horrible shock and they do give you an awful lot of information and potential outcomes.

I am five years down the line from the same diagnosis. I chose mastectomy and don't regret it. No other treatment. You might not either. The only advice I can give is to try and work on what you definitely do know and be very easy on yourself.
They weren't sure of the margins o'r spread of mine so I asked them to take it off and delay reconstruction a) to avoid possibly having to go under again if they didn't get clear margins and b) because they didn't know exactly what they were going to find and I was advised that chemo and radio could mean immediate reconstruction might not heal well If they were necessary. I have quite large breasts though which might be why they said that too.

In the end they weren't and I was told I could be out forward for reconstruction after 6months in England. I've not had it done yet as I now live in Wales and the lists are much longer but it has been very manageable with just the prosthesis and I am relatively young (40)

It's a really bewildering experience, just try to take it one bit at a time. Feel free to DM if you want to ask any questions and I will try and answe.

Thank you @DieDeutschLehrerin that means a lot.
I am pleased you have recovered well.
I keep crying and my DH doesn’t understand why. He just keeps telling me it could be so much worse and I’m lucky. I don’t feel lucky

I am a cryer too. I sobbed a lot and you are allowed to. It's frightening and surreal. We're lucky in the sense that DCIS isn't life threatening but it's not particularly lucky to be having to go through all of this and confront all the uncertainties involved. You're having to deal with a completely change of plan for the moment too.

Your DH is probably just getting his head around it and being very practical but he must allow you to feel whatever you feel. You must put yourself first for now.

I honestly found my kids were a great distraction because they just carry on regardless (they were v.young) and I got carried along with them. I used feel very weepy about 10:30 every morning and then be able carry on after that.
It's all a horrible shock. I really feel for you but it's amazing how common it is and how many women have been through it and you'd never know.
Take it gently.

I was exactly like you when i was diagnosed. I kept bursting out crying for weeks. I was terrified of having to have a mastectomy and thought i would be horribly disfigured. 5 years down the line I hardy think about that time - its just a bad memory now. And i wish i had known that the mastectomy was not at all as bad as I expected.

I also thought i would not be able to have children after as the doctor mentioned various treatments that i might have to get. In the end the mastectomy was the only thing i needed.

Whilst I don't think your DH will be winning any prizes for diplomacy, he is probably vocalising his own main fear - that you would get a much more serious diagnosis. I'm not sure I think that makes you 'lucky' but I can understand what he means.

I think you should be able to talk to your care team about how to preserve your fertility if that becomes necessary. There's some information here on the Breast Cancer Now website.

I wonder if your DH needs some practical tasks to do so he can feel like he's helping. He could start off by writing down everything he remembers about what you were told in your appointment, it's basically impossible for you to take information in when you're being given that news. He could also be responsible for telling your friends and family and also telling them you have no definite information yet but he will let them know when you have a treatment plan.

Don't ever feel guilty for feeling this way. People who say you are lucky because a) breast cancer is curable and b) it could have been worse; mean well but it's the wrong thing to say.

You will be allocated a breast care nurse. They are supremely good at talking to you, going over things you didn't understand and finding out more for you.

I had BC 3 years ago. I had a lumpectomy but would have happily had a mastectomy. I'm very flat chested. The surgeon was adamant that my outcome would be the same with either. I also had chemo and radiotherapy.
I recommend the cancer thread on MN. Lots of women with similar experiences.

Thank you all. At the moment my biggest upset is whether we will be able to have another child. I know that’s stupid when we already have 2 healthy DC.
I am told you need to wait 2 years after BC treatment before even starting to try. At which point I’ll be 32. I know that’s not too late to have DC. So why does it feel like such a kick in the teeth

You had a picture in your head of how the next few years were going to go, and the three children being fairly close together in age, I assume. It's completely understandable that you feel like you've been hit by a truck - your plan has to change. All you can do now is roll with it, but it's far, far easier to say that than it is to do. Take your time to process your feelings.

For health reasons unrelated to BC I was told not to have a 3rd child. I was 41 and had two healthy children born when I was 37 and 39. I was surprisingly upset about this so I do understand where you are coming from.

It will take time to get used to all of this, much of the next few months is hard for you to visualise just now. The third child is something tangible you can imagine so you are fixed on that ATM.