I was diagnosed with Invasive Lobular Cancer in 2024 and I also had a 5cm and 2.5cm Grade 2 DCIS.
Over the last two years i’m getting such mixed messages and understanding of DCIS.
Is DCIS Cancer? All research I’ve done says no its early and not invasive so thats great. However on so many groups I hear stories of ladies who have DCIS only no invasive tumours discussing their treatments and talking like they have an invasive cancer. Is this true? I’m just really confused and intrigued as my oncologist actually said to me we are not here to talk about your DCIS as that isn’t my job and its not Cancer. I had no treatment at all for my DCIS tumours that were succnifienly larger than my invasive cancer. I had no rads and no chemo but did have a double mx and hormone therapy. I’m worried that my DCIS tumours were completely dismissed because of my invasive cancer and other patients with DCIS and no invasive have had more treatment than I got.
Sorry a bit of a rant but I’m generally confused is DCIS actually a dangerous cancer like my invasive was. Or like i’ve read its pre-cancer not yet dangerous. Why do patients with DCIS say they have a cancer diagnosis if its pre-cancer??
Hi @kat-jack
I’m not a medical professional, but my understanding is that DCIS is a non-invasive, insitu, very early cancer, that some professionals consider pre-cancer. It doesn’t have the ability to spread when first diagnosed, but could develop that possibility if left untreated. That’s why DCIS is always surgically removed.
I think radiotherapy is sometimes offered if margins are close, and very occasionally hormone treatment is given if the area is large and the receptors have been tested. (Hormone receptors aren’t routinely tested on DCIS).
I think sometimes on forums, people get confused with their own diagnosis, and refer to their IDC (invasive ductal carcinoma) as DCIS… I’ve seen this before, and have also wondered why they’ve gone through chemo!
Chemo would not be offered on just DCIS.
I’m sure there are plenty of other people on this forum who know much more than me, and can probably explain and reassure you better- but that’s my understanding and I hope it helps xx hugs xx
Oh and btw I had multi focal ILC (6.5cm), no insitu - mastectomy, clear margins, clear lymph nodes - low enough oncotype, so no chemo or rads either. Just 5 years letrozole. Happy with that xx
Hi, thanks for your reply, that would make sense about perhaps not understanding their diagnosis. I just get a bit frustrated with it all. I am on 10 years Tamoxifen may move over to Letrozole but not sure yet. My oncotype was also low so didn’t need Chemo. Rads was taken off the treatment list once it was clear I was needing a masectomy after a failed lumpectomy.
Understandable… I keep hearing about ribociclib and wonder if I’d have been offered it if I was having treatment now.. it’s a minefield. I do try hard to accept that our medical team do what they know is right for us as individuals and wouldn’t deny us treatment that we need.. cancer is pretty shit at the end of the day and it’s hard to stop thinking about. Take care lovely xx
You’re right to be confused. I had DCIS 3 years ago and all along it was referred to as cancer. Once I’d had the lumpectomy my BCN even said ‘you no longer have cancer’. Then later down the line it was referred to as ‘pre-cancer’ so I asked ‘have I had cancer or not?’ and no-one was able to give me a straight answer.
I always felt like a fraud, like I was ‘playing at’ cancer. However, the experience comes with the same traumas as any other cancer, albeit perhaps not quite as severe or aggressive, but the impact of it still runs deep.
This time round I have gone the whole hog with HER2 +ve, so I do have something to compare it to.
is DCIS actually a dangerous cancer like my invasive was. Or like i’ve read its pre-cancer not yet dangerous. Why do patients with DCIS say they have a cancer diagnosis if its pre-cancer??
xx