DCIS with a lump

Hi Gemma, I was in your shoes in feb this year. I know it is all very scary but soon survival instinct will kick in! I am in active chemo since March and my aim is every week to look after myself well so I won’t miss an infusion. My story also started with lump on my left armpit and cyst on left breast. Just try to be positive and carry on with your normal life until doctors tell you what type of BC you have (4 types with different treatment regime). I am triple negative. Please try to stay strong and positive. Look after yourself. Gx

Thanks for your kind words Gini.

It's like a nightmare I can't wake up from at the moment.

I hope the chemo is kicking cancer's ass

Best wishes 

HI Gemma1234 

I had a lump and DCIS.  I didn't in fact know, but went for my first every mammogram calling at aged 51.  I got a callback and wasn't worried in the slightest as figured I'd feel ill / the booklet said it could happen if they didn't know your breasts. 

As it happened I had 1.5cm lump and 2 x separate areas of DCIS, totalling 5.4cm.  I had a lumpectomy of a whopping 8cm removed (luckily 38D) and then radiotherapy.  As the lump was ER+ (oestrogen positive), I was on tablets for 5 years.  I have just had my 6 year scan and it's all clear.

The one thing that I would say for anyone just starting treatment is that the waiting and the fear of it all, was (for me) the very worst part of it and the actual treatment (I didn't need chemo.) was just fine. 

So, hopefully you will find it is just DCIS (although the treatment is the same tbh), but it is like a stage 0 as not yet developed into cancer.  I was only stage 1 with the 8cm lumpectomy because my 1.5cm lump is what made it stage 1 which is very, very treatable.

I know it's very easy to say and not to do, but try not to worry.  I tried to keep saying to myself throughout - "no point worrying 'cause it won't change anything".  Easy said - but certainly not done!  But I do hope my story of being 6 years clear is the positive you need

Kindest wishes, Lesley

Thank you Lesley.

That's so kind of you to reply. I'm delighted to hear your positive outcome. It really does help.

I was ok to start with but all this waiting is making my mind go to all scenarios!!! 

As you say I think I'll feel better once I know for definite what it is I have and once the bugger is out of me!!!

Best wishes 

Hi Gemma,

I am sorry to hear your news.

my DCIS was picked up on a mammogram but at the follow up appointment a lump was found and a biopsy taken.  The lump was fine and just turned into a distraction as it was removed and given the all clear before someone in the MDT said shouldn’t we have a look at the calcifications which we initially saw on the mammogram.  So 3 biopsies and 3 months after the mammogram later DCIS was identified.

DCIS is a strange diagnosis.  It is great that it is non invasive and stage 0 but the fear is still there as there is no confirmation of it being non invasive until it is all removed.  The lived experience is therefore still pretty stressful.  In addition the treatment does not change much.  I have had 2 surgeries and now on RT.  

I hope my good news story with lump helps a little but I just wanted to agree that DCIS is probably only less stressful once the surgery is over and non-invasive nature is confirmed.  Until then try not to think too much (I know!) and don’t rehearse tragedy.  The waiting is horrendous (7 weeks to get results following my second surgery, 5 weeks for my first) but try to keep busy.

sending hugs  

Oh Sassy Gee (great name!) thank you so much for your reply, it really does mean a lot.

I think like everyone I'm all over the place at the moment. The waiting is so hard and seems never ending. 

I know I have to have my nipple removed so as you say although it may seem like a better diagnosis it all has the same psychological effects coupled with the unknown at this stage.

I'll do my best to take your advice, deep breath and onwards we go

Thank you for sharing xxx