Such a confusing diagnosis!!

[Westcoastwife]

Hiya. I was diagnosed last week and they said at the screening centre it's precancerous, but gave me a leaflet saying it's early stage cancer. I've to have the area removed and then 4 weeks of radiotherapy, and feel a fraud because folk go through actual graded breast cancer. I have my surgeon on 6th January so will put it on my list of questions to ask. For now I'm calling it my non cancer

How are you doing now? 

[Musicmoll]

Hi Limegreenfairy, I am going in tomorrow for the blue dye injection prior to a mastectomy on Wednesday. I suppose I’m lucky that I’m having it all in one go,but then I’ll still have to wait 2/3 weeks for the pathology to come back to confirm whether the DCIS has become “invasive”. It’s definitely a rollercoaster ride. I wish you well with whatever happens x

[Limegreenfairy]

Hallo,

I've had similar, first had a biopsy with the cancer pointed out, and I was told I had DCIS non invasive - (Duct carcinoma in situ), then I had the operation to get the cancer out, but they said The cancer is "invasive", so had to have a blue dye in my lymphnode sand bossom to see if it had spread.

Now waiting (total 3 weeks for prognosis as to whether the cancer has spread to my lymph nodes or not)...

As I have a VERY active imagination, but I do have a few friends who have been through Breast cancer stages very similar, with Radiotherapy and "the blue pill".    I still can't believe I have cancer.!!! even after 2 operations.

[Naid]

Hi, you're right, it is a confusing diagnosis but it doesn't need to be. I think sometimes people suggest DCIS is not cancer because they think it's helpful, but personally it left me feeling confused and invalidated. 

DCIS is definitely cancer, but it's cancer that has yet to become invasive. There's a website I really like by a Dr Halls who is a radiologist in Canada, he's written some very informative posts about DCIS. You can find his site here: 

breast-cancer.ca

Hope your appointment goes well x

[Ostrich_Kat]

I've reading this strangely reassuring - is that normal?!

I am still having tests but was told I have abnormal cells but not cancer then I got a letter saying it was possibly DCIS - as with others on here googled and it does say cancer!   

I am pretty sure I have DCIS and the contradictory messages are the same as you have had

Tuesday I had an ultrasound of the lymp nodes which resulted in a biopsy again so now beyond stressed!

have an appointment on Wednesday so will hopefully have answers either way

Hope you get some answers!

[Musicmoll]

Wow, me too! Initial diagnosis on 28th August I was told I did not have cancer as DCIS, then when I saw the breast surgeon a few days later he said it was early stage breast cancer! Not only that, but I needed a complete mastectomy.  Now seen another surgeon regarding reconstruction and it all seems so unreal. Due to see the breast cancer nurse today so hopefully I’ll start to take things in a bit. When I got home yesterday I felt really angry about it all. Different messages, and now who knows whether it has spread or not. 

[Naid]

Hi Flossyadams, thanks so much for your message. I'm fine now, the confusion was around the time of diagnosis and caused entirely by my breast care nurse and my sister who googled and read the first thing she clicked on which happened to say 'DCIS is not cancer' 

In the end I phoned the Breast Cancer Care helpline and they clarified things. I also phoned the breast clinic and requested a change of breast care nurse

I'm post treatment and have the all clear. Just focusing on trying to process what has happened and the changes to my body xx

[Guest user]

Hi Naid. Sorry to hear of your confusing presentation of DCIS. I hope you feel more reassured now with the replies, 

[Naid]

I'm so sorry to hear you were invalidated by your oncologist. If it's not cancer why on earth treat it with surgery and radiotherapy! I'm assuming the oncologist meant it wasn't invasive. Thank goodness you have a sensible breast care nurse. 

Naid xx

[Anniebannie63]

Hi, I had the same thing, consultant said dcis pre cancer, so I said to my breast care nurse after, so it’s not cancer, she replied yes it is!! After my op and radiotherapy I went to see the oncologist, and my sister came with me, she said it wasn’t cancerous! So my sister was yaaay you didn’t have cancer after all!! So made me look like a liar, but my breast care nurse still says yes it was cancer!! Xx

[Naid]

Hi, I was diagnosed with DCIS in February this year. When it was diagnosed my cancer doctor said 'you have low grade cancer that requires surgery' which was shocking but straightforward. Then half an hour later my breast care nurse said 'it's not cancer, it's pre-cancer'. She then handed me the breast cancer care booklet on DCIS which states 'DCIS is an early form of breast cancer'. My head was in a spin, which didn't help me come to terms with my diagnosis or understand why I needed surgery!

Bottom line: DCIS is an early form of breast cancer. Cancer cells have developed in the ducts but have yet to develop the ability to spread outside of the ducts. In some places it's referred to as 'Stage 0 Cancer' (which makes sense to me)

Perhaps some people think it makes it easier for us to be told 'it's not cancer'. I just found it frightened me more. I remember thinking 'if it's not cancer, why am I having half my breast removed?!'

In the end, I focussed on what my cancer doctor said: 'you have low grade cancer that requires surgery'

and then after my surgery: 'we removed 12mm of cancer'

Hugs xx

[Wop]

Has anyone else been confused with their DCIS diagnosis?  First they said "you haven't got cancer" then they gave me loads of written info that said the DCIS is early breast cancer, then they advised flight socks as cancer puts you at more risk of blood clots, then they said again that it's not cancer.  So confusing along this journey. 🤕🤕🤕