Dcis - 1st appointment with consultant

Diagnosed with breast cancer DCIS/LCIS
1

Hi

I was told I had DCIS im my left breast about 10 days ago. It was a huge shock (as I’m sure it is to everyone), I’d been led to believe that both my biopsies were just precautionary. I’ve not been told much other than I have an area that they’ve been looking at during the biopsies and an ‘older area’ whatever that means. Having spent some time reading posts on here I called the breast cancer nurse asking if she could tell me what grade it is, she said at least low grade which didnt feel terribly helpful. The only thing I feel has been made clear to me is that I’ll have to have surgery. I have small breasts and I believe the area they have biopsied is very close to the chest wall. With my very limited knowledge I can only assume I’ll have to have a mastectomy. I’m nearly 53, I care a lot about what my breasts look like. I feel as if I’m being stupid and vain right now as I’m sure after my appointment with the consultant the full reality of the situation will kick in and my concerns about my appearance will slip down my list of priorities. I’m struggling to write this as I’m not someone who likes to share stuff or ask for help but I know that only those in a similar situation to me will truly understand how I feel. So… My consultant appointment is next Friday. I want to get the most from the appointment, get as much info and understanding as I can. Can I ask what are the most important questions to ask? Location, grade? Treament options (I appreciate I may not really have any choice). Time to surgery, reconstruction? I’ve read about markers and margins but don’t understand what these are. Lastly, am I running away with myself? Should I just wait for the appointment? Do most people take someone in with them? I’m planning to as i think i’ll be in a bit of a state and a lot of it will go over the top of my head. Big learning curve eh? Lastly i’d comment that whilst i’d like to have been told more at the diagnosis appointment (it was pretty brief), all the staff ive come in contact with have been very nice and caring. Huge thank you to anyone who replies. X

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Hi Dylan, Welcome to the forum ?

 

Firstly yes definately take someone with you to your appointment, a second pair of ears is invaluable as you just can’t take it all in yourself and I also found my husband spoke up and asked the things I said I wanted to but had completely forgotten to say on the day. 

 

DCIS can be wide spread across your breast so sometimes a mastectomy is needed to remove it all but it varies and everyone’s case is different so you can’t read too much in to what others have had done.

 

Margins refer to removing the cancer with a few mm of clear tissue surrounding it, sometimes they don’t achieve this first time so a second surgery is done to remove some more, again this doesn’t happen to everyone so dont assume if you have a lumpectomy it will to you. 

 

A marker is sometimes put in to a lump at point of biopsy purely so it’s easy to find if it needs removing , I had a guide wire inserted via ultrasound on the day of my op.

 

At your appointment your team will talk you through what will happen next but question anything you don’t understand, you can sit there like a rabbit caught in headlights then come away kicking yourself for not asking more. Get someone with you to right it down and ask for clarification on things you don’t understand. 

 

They cant give you a definite Diagnosis at this stage until your DCIS has been removed and analysed further so there will be more waiting but they will tell you what they know from your biopsy.

 

Questions to ask include what size, type and grade they think it is, will there be further tests i.e. scans or MRI, what will the likely treatment be and what is the time scale. 

Knowledge is the key to dealing with this, once you have that your brain can start to make some sense of it.

 

Its not vain to worry about losing a breast, I hated the thought initially that it may happen but my husband said if it’s trying to kill you then it’s going! As it happens I had a lumpectomy and still have a normal ish looking boob, of course if I needed to I would have had a mastectomy but like you my initial thòughts were that I didn’t want to. 

 

Write down all these thoughts as they happen and put them in to some sort of a questionare to take to your appointment, as you have found they are lovely and will happily answer you and help reassure you at every stage, just be prepared for more waiting over the next few weeks , it seems like for ever at the time but things do move pretty quickly, I had my appointment on a Monday and my op the following Friday. 

 

Plenty of ladies here to chat to so feel free to pick our brains anytime Xx Jo 

 

 

 

 

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Hi Dylan, its good that you are sharing your worries and feel8ngs on here although you find it difficult! We all understand and you will get great support here!

I echo what jobey said - defin9tely take someone with you and write every question down as you think of it.

Your team will tell you your results and your options. Once you know the plan you will feel more in control and ready to get on with it.
I had a masectomy in february and i am glad the breast has gone. The surgeon did a great job and 13 weeks on the scar is barely noticeable. I am 51!

I hope you get your answers soon and find out what happens next. The waiting is definitely the worst time!
Love Ali xx

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Hi Dylan,

I hope you are okay. I can very much relate. On 14/05/18 I had a doublemasectomy with implant reconstruction, following my diagnosis of high grade DCIS, back in February.

On 24/05/18 my surgeon took it upon himself to call me, earlier than my arranged appointment, with great news - my pathology and lymph nodes are CLEAR. The NHS has pre-empted that large murky area of pesky, surreptitious, sneaky bastard cells, catching them early in my ducts, and discarding them. NO FURTHER TREATMENT is required. I am very lucky, dodged a massive, toxic, nuclear missile.

If I could pocket the sheer amount of perspective I have right now and carry it at all times, I would. Today I am the happiest girl in the world (just had dressings off) and feeling elated and cathartic, so I am putting my near miss into ‘Take a break’ style words to give you hope.

It’s been a bit of a **bleep**ter - breaking up with my breast tissue was never going to be easy. Being told you haven’t quite got cancer yet, but it needs treating as invasive is a bitter pill to swallow. Waiting on results and dealing with the ‘not knowing’ exactly what was going to happen has been by far the worst thing for me and that is exactly what you are going through.

My response to the DCIS dilemma went something like this:

1.feeling backed into corner and hysterical “I am NOT having my boob removed - Kylie didn’t”. NHS promptly pointed out that Kylie did endure a horrendous course of chemo and rads though.

  1. Gun to head moment of realisation that I am not invincible and my problem is not special “**bleep** I might die if I don’t have my boob removed”

  2. Moment of ‘life is great’ clarity “can I have both boobs removed like Angelina please?”

Due to my high risk (despite not having the BRCA genes, both my Sisters have had B.C, the first Sister had it the worst) the NHS said ‘yes’ to my double request. It was there I started my journey with a wonderful team of professionals and personals behind me all the way.

I am 38, so aesthetics and not compromising my femininity were a huge deal to me. You are not being vein. I am in Cornwall and opted for braxon implants (immediate reconstruction) - 15 days on my foobs look great. My 44 year old sister had masectomy with diep flap recon in February in Nottingham, her foob looks amazing, it is unbelievable what can be done. Be a squeaky wheel and get the oil… This forum helped me no end. Best of luck lovely, you will be fine xxxx

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Hi Jo, Ali, Kate. A huge thank you for taking the time to respond, means a lot.

Kate, I’m so pleased that you got the all-clear this week! That’s amazing :slight_smile: Your long message made me smile :slight_smile:

I’m going to have to keep my response short-ish, it’s gone 9pm and I’ve done nothing to prep for tomorrow am. I don’t want to sound all ‘woo is me’ but the timing of this is, let’s say not great (like there’s a ‘good’ time to go through this). I won’t go into the details but both myself and my partner are under great pressure for a number of reasons, the most pressing being his extremely high blood pressure. He HAS to see the consultant tomorrow and the only time he can get an appointment is at the same time as mine. His need is on balance more pressing than mine so hes reluctantly agreed to go, i’m taking a good friend. This wasn’t planned until this afternoon. We have so much going on in our lives right now that I honestly haven’t had chance to really think about the appointment at all. It’s hitting me a bit now, I feel sick and lightheaded.

Anyway… It is what it is and as some have said, the waiting is the worst.

I’m going to write down my questions now. My friend that is going with me is sensible and will in some ways be a better person than my partner as she’s more detached if that makes sense. I feel as if one way or another I’m going to learn a lot tomorrow…

Thank you all again for sharing. It’s a massive help, both practically and emotionally. I’ll let you know how I get on in the next day or two. And i’m sure I’ll have more questions.

Xxxx

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One last thought, you’ve all made me feel a little braver about what lies ahead. Thank you xxx