Why are they doing 'staging' when I'm supposed to have DCIS?

Please help. I am scaring myself silly because when I had my diagnosis of DCIS last Friday, they told me I had to have a mastectomy as it was all over my breast but they also said they were doing ‘staging’. I didn’t think anything of this at the time because I had no idea what it was and I was in shock as I was expecting nothing to be wrong. But now I have read up about cancer I realise that ‘staging’ is what they use to define what kind of cancer one has ie. stage 0, 1, 2 , 3 or 4. Why are they doing this when I am supposed to have DCIS? (which apparently is stage 0). It is making me sick with fear for my next appointment with them for my ‘full results’ on Tuesday. When they did the stereotopic biopsy they couldn’t manage to get any calcifications and I was due to have a larger biopsy this week. But then they said the nearby tissue had picked up DCIS and that’s what I have. Please can anyone enlighten me? I’m frankly very scared now. I really want my diagnosis of DCIS and am terrified of it being worse as I have 2 young kids and I am already ill with something else.

Many thanks in advance.

L

Hi flaxhigh,

In your particular situation I am not sure if this applies but I do know that at some hospitals (mine included) when one is dx with bc they do a chest x-ray, CT scan and bone scan. This acts as a ‘baseline’ so that if you have any more problems in the future they have a record of what was ‘normal’ for you at diagnosis. They can then check against that information if they need to do further scans. If only they realised how vulnerable we all are at this stage and could take the time to explain more clearly they might save us a lot of anxiety. I guess what works for one doesn’t for another - we want them to be mind readers too.

Dawnhc

Hi flaxhigh

It sounds like you’re having a tough time at the moment. It’s not at all unusual to be worried in your situation, as I’m sure you realise. As well as the support you are getting from the forums you might want to phone our helpline and talk through your diagnosis in detail.

The helpline is run by expert nurses who will be able to give you the most up to date information and sources of support.

The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this helps

Kind regards

Lucy
Moderator
Breast Cancer Care

Many thanks Dawn and Lucy. Dawn, I did have an x ray - but they told me that this was just to see if I was fit for my mastectomy. I still don’t know what ‘staging’ can be other than what I fear. I am going to ring the helpline tomorrow. I wish it wasn’t the weekend. It’s useless getting a diagnosis on a Friday as you have the whole weekend to stew and no one to speak to.

L x

Hello flaxhigh,

I’m afraid that no one used the term “staging” when my DCIS was diagnosed. I am sure that the staff on the helpline will be able to advise you.

I was told that my DCIS was high grade (grows quickly) and, for that reason, I had radiotherapy after the operations. I was not offered a bone scan or a CT scan; hospitals do seem to differ.

Of course you are scared, which means that you will not be able to sleep properly. Try to write some questions down to take to your Tuesday appointment. A friend or husband would be useful at the appointment, because you may not have time to write down the answers, and it is difficult to recall the details later.

Hi Flaxhigh

I am sorry no one used the word staging at my dx of dcis, I was told mine was high grade and close to the chest wall which is why I have to have radiotherapy. Go for planning on friday. I have not been offered a bone scan or CT scan. Like Elena it is good to take someone with you who has also got a list of your questions as your brain seems to turn to jelly when you are at your appointment.

Take care

Heather

Hi Flaxhigh,

I was diagnosed with high grade DCIS in June. There are 3 grade’s of DCIS- high, medium and low. Treatment will depend on the grade and your age. I was 39 at diagnosis and had surgery and 25 sessions of radiotherapy. The reason that I had radiotherapy was because I didn’t have a mastectomy and beacuse I was under 40 (radiotherapy is often not given if you’ve had a mastectomy).

Staging for DCIS is part of the overall assessment- blood test and chest x-ray is the norm. It is a precaution and forms a baseline assessment. I know that it is hard not to worry and be scared. DCIS is early, has not spread out of the ducts yet (not invasive) and the prognosis is very good. You will be given all of the information at your next appointment. Write some questions down so that you don’t forget to ask them.

Take care and let us know how you got on.

Kat x

I had DCIS around my tumour - it was low grade all of it. However, they didn’t know whether any cancer cells had got into my lymph nodes so they tested some of them using sentinel node biopsy at the time of my second op (the first was to remove the lump). Even if you have DCIS there is a small possibility of what they call micro invasion so I imagine they are going to test some lymph nodes for this possibility. My tests came back with no cancer in my lymph nodes so that was good

Mole

Thanks so much all. I don’t know what is wrong with me, I feel so bloody awful: stomach churning, heart beating ten to the dozen. And I’m normally a pretty together person. It is most strange. Thank you so much for your advice. I found out about ‘staging’ this morning and it is as you say Kat. Why on earth they use that term, when it can so easily be confused. Today I had my full report which is high grade DCIS - but I still don’t know if there are micro invasions or not. I do know that I am going to have a mastectomy and that they are taking lymph nodes out (because there are calcifications all over my breast. I have no idea if I am going to have reconstruction or even if I’ll be allowed reconstruction - don’t you have to wait until they get the results of the lymph nodes first - and are the plastic surgery team just waiting while you’re still under anaesthetic to find out if they can go ahead. I don’t even know if I WANT reconstruction. So many decisions…I’m just trying to get my head round this.

Did any of you present with bleeding from the nipple? I’m 42 by the way .

L xx

Hi there

Pleased you’ve got some answers on the ‘staging’ issue. Not surprised you were concerned because the term staging is usually used with invasive cancer.

Ntoice you saying you are not sure if you want a reconsruction. I’d say if you’re not sure then wait…you can have one later if you want. I never wanted a reconstruction and for me living with one breast and a prosthesis is absolutely the best option.

Take your time.

best wishes

Jane

It is natural to worry so don’t be hard on yourself. I didn’t have bleeding from the nipple but know that my diagnosis would have developed into pagents disease.
Your options will be discussed with you at your next appointment. My surgeon gave me a further week to consider the options and make a decision. That decision is unique to you.
Immediate reconstruction can be done if radiotherapy is not required and the surgeon is sure that all cells have been removed.

Because I was a 34JJ pre surgery, I didn’t need a mastectomy as the DCIS was confined to a specific area and there was enough clear breast tissue to reconstruct with. My surgeon made me a 34D and reduced the other side to match (I cannot thank him enough).I was offered a ‘new’ nipple and tattooing but declined at that time. I was adamant that I did not need it or want it but changed my mind last week. I am seeing my surgeon next week to arrange having it done.

The decisions that you make need to be right for you at the time.

Kat x

Hi I also had high grade multifocal DCIS and Pagets disease of the breast. I didn’t have bleeding of the nipple but I did have an inverted nipple. Trouble was that was normal for me! I did have a burning sensation occasionally through my nipple, a bit like a red not needle through it, but I never associated that with breast cancer.
I had a mastectomy with reconstruction using an implant immediatly after surgery and yes the plastic surgeons are waiting to do their bit.I also had sentinal node biopsy as DCIS was widespread.
The breast surgeon told me that as it was DCIS and non invasive there was no mad rush. I saw the breast surgeon 2nd Aug, the plastic surgeon 17th Aug and by the time they could get together, bed was available, theatre time etc etc I had my surgery 14th Sep.
It gave me time to think about what was best for me and become accustomed to the idea of losing my breast.
Take your time to get your head round this. Then you can make your decisions.

Best Wishes

Sandra

Hi Flaxhigh

I too presented bleeding nipples and then was dx with DCIS and because widespread was advised to have mastectomy, After biopsy consultant advised me to meet with plastic surgeon and discuss reconstruction, as he felt I had time to make a considered decision. I did go ahead with immediate diep reconstruction, lymph nodes were taken from under my arm through a separate small incision (which is virtually invisible now - 8 weeks on). My DCIS was grade 3 which I believe is aggressive, there was some micro invasion, which I understood meant that the cancer was trying to get out of the duct but had not succeeded. The lymph nodes were clear (14). I do not need any further treatment. I return to see cancer specialist in December to cover any questions I may have.

I am still recovering from the reconstruction but otherwise feel well and am virtually back to normal in daily life. I feel so incredibly lucky that I caught the b-------- whilst it was DCIS, of course some days I still worry.

When diagnosed I was confused and very frightened, loads of decisions to make and felt I had no time. I was diagnosed on a Thursday and by the Sunday had really scared myself. I was very lucky as my onc was very patient and was able to meet with him on the Monday when he was able to answer all my questions.

As advice before, write down any questions and take someone with you.

Good luck for tomorrow and keep us posted. I’ll be thinking of you.

Linda

Hi and thanks for your comments.
Linda, I was very rushed in my results appointment. I waited 2 hours (with a two year old!) and the whole room was packed with old people.I was the youngest by far - it was so upsetting. I basically had to make the decision about reconstruction in about a minute and thought: no I won’t because I am so scared that as I have wide spread high grade DCIS in my breast that they are going to find a stage 3 invasive tumour when they get the breast off and also take the lymph nodes out. Before this appointment I didn’t realise this was a possiblity - I was terrified but clung on to the idea that DCIS was all I had and that, yes, I would lose my breast but that is all. The registrar I saw was rather blase about it all (easy for him to laugh about it and be jolly…). He said there was a 60/40 chance of my having invasive cancer (ie. 40% chance of it). I have fallen to pieces as I am already ill with something else and I just can’t stop crying. I had to tell my 5 year old about me coming home without a breast (or our word for breast) and he was really really upset. It was awful. I didn’t cry in my appointment but the guy when I was asking about the chances of invasion told me not to be so pessimistic which really gets my goat seeing it’s my life not his I’m talking about. Now I feel I should at least speak to the plastic surgeon about reconstruction. My mastectomy date is 11the December. I feel sick with it all and honestly wonder if I will see my two boys (that I had to wait 20 years to have as I was so ill before) grow up.

Feeling pretty desperate tonight.

L

It is really hard to not be worried, scared and pessimistic. I think we have all done that at some stage. I am sure that the doctors would have had some indication by now if it had spread. I know that there is a possibility of the surgeon finding something else during the surgery but that is usually rare. At the moment, you have an early diagnosis and the treatment is constanly evolving and becoming more accurate. You have a very high chance of seeing your boy’s grow up.

I suggest that you contact the hospital and arrange to see the plastic surgeon and your Consultant- you should not have seen a Registrar anyway. The easiest way to do this is by speaking to your named Breast care nurse (I hope that you were allocated one). If this is not possible, contact the McMillan Nurse at the breast clinic or the breast clinic directly. They will see you, as some big decisions are to be made by you and most professinals will appreciate that. As an ex-health professional, I strongly advise you not to be scared of hospitals, Doctors etc. Be clear about what you want and why you want it, be polite and you will always recieve the care and informaion that you deserve.

Let us know how you get on with making another appointment.

Kat x

Thanks so much Kat for replying. I did ask to see a plastic surgeon but they couldn’t get me an appointment for a while so I am just going privately tomorrow. I want to be able to keep my 11th December appointment but the registrar said I wouldn’t be able to if I went for reconstruction. Why should I have not seen the registrar? Is he not qualified enough? They were so busy, it took 2 hours to see me as it was. I don’t think they will be happy at all to see the great man himself. The resgistrar definitely told me there was a 40% chance of my having up to a level 3 cancer and that at this stage they simply didn’t know what I had. Is he wrong? How can I find out if he is wrong? Maybe after all I should try to see the consultant.

L x

I always thought that you saw the Consultant and once diagnosis was made, decisions made etc you could then see a Registrar. for follow up. Maybe I’ve got it wrong. It could be that the team discussed your case before clinic started and the Registrar was passing on what the Consultant had said. Do not get alarmed (easier said than done I know). You need to write down your questions and take it from there. Also, talk it through with a nurse on this forum’s helpline as he/ she may be able to put things into perspective for you and advise you more appropriately.

you can always ask for a second opinion - and maybe go to a different surgeon. I regret not discussing more reconstruction options. I would have liked to have a partial reconstruction, some hospitals do them but not many. The best place to go is a breast cancer centre of excellence. Research seems to indicate you get the speciality of your surgeon so the more surgeons there are the better the choice and they need to tailor the op to you and your body type