Staging confusion/anxiety DCIS and Invasive tumour size??

Hi, I found myself catastrophising (if that's a word) many times during my diagnosis and treatment so I do think it's quite natural to worry and think about the “what ifs”. I also keep reminding myself that thinking about it isn't going to change anything and I forced myself to focus on things I could control, and keep busy and distracted.

To chat through the medical diagnosis and outcomes you might want to give the team here at Macmillan a call, or have a chat to one of their nurses. I find they're pretty good at giving straightforward explanations of the complexity.   The number is 0800 808 0000.  Best wishes 

Hi TJGS 

I just wanted to say that you’re not alone in catastrophising about the worst case scenario. I do this all the time and doom scrolling doesn’t help.

my surgeon said they don’t really do ‘staging’ anymore but when I asked if I was Stage 3 he said that’s where he’d put my diagnosis. He’s remaining optimisic but also quite guarded whereas whenever I give it all more than 10 seconds thought in my day i spiral to thinking the worst, longer term.

i get frustrated with the medical teams sometimes, because they don’t have all the answers. However, if you push for a clearer explanation of what they have found they should be able to give more clarity.

X

Thanks for the reply. That’s exactly what my oncologist said, they don’t really do staging as it’s more about how the tumour reacts to treatment. But then when you try and find anything online about survival/recurrence rates it always refers to staging! 

Did you have a mix of DCIS and invasive too? That’s the bit I find most confusing as my invasive tumour is being described as 18mm pre chemo and 15mm at surgery plus high grade DCIS taking it to 94mm overall. 

So do I include the DCIS when looking at the staging stuff? Part of me doesn’t want to push for an answer so I can cling on that the DCIS doesn’t count….silly but comforting. 

what stage of treatment are you having now? Wishing you lots of healing x

I am not sure about the DCIS part, sorry. Maybe one of the Macmilan team can help answer that, there is a helpline on this website. Just speaking to someone may help anyway, I often find it does.

Mine was 55mm cancerous tumour and 2 cancerous lymph nodes. Removed by surgery nearly three weeks ago. Recovery going well, waiting on chemo next.

Glad to hear recovery is going well. I struggled post surgery, I think doing it after chemo took it out of me.

Best of luck with your Chemo, ricola sugar free sweets highly recommended for the taste issues! I did a mixture of EC and Docetaxel, different side effects for each but manageable. Xx

Hi there,

I had quite a similar diagnosis HER2 positive with invasive at 15mm and non-invasive at 30mm. I had surgery first and about to finish chemo, initially they thought it was all DCIS but after surgery Lobular ILC was found, this is notoriously hard to diagnose even though I had numerous biopsies and MRI! Anyway on the initial report it said T2 45mm so included both (I'm node negative) but then last week on a recent letter from the consultant to the oncologist, my consultant is at a different hospital to oncology it referred to diagnosis invasive 15mm no mention of DCIS, it is confusing!

I know it's hard but try and stay positive, with all the drugs now available they can get recurrence odds down to very low. 

xx

Hey - i think my diagnosis has some similarities- I’ve finished chemo and now await surgery in a couple of weeks. My actual tumour was large - 71mm - while the DCIS was spread throughout the breast tissue so cant really count as a tumour - the oncologist has never explained it as an additional tumour either. On my MRI the DCIS looks like sprinkles. The chemo and Phesgo have completely got rid of the cancerous cells and tumour and any cells in the lymph node were also visually clear - the MRI report was “complete radiological response” - again highlighting that it’s not about the staging number, more the response. I suppose if I’ve now only got DCIS that’s not even stage 1….but clearly they can’t treat me as only having stage 1 BC….i still need a mastectomy because of the extent of the original cancer. So back to the treatment and response answer…..plus immunotherapy etc massively cut down the recurrence issue, especially Phesgo. 

The vast majority of breast cancer patients have surgery first meaning that on these and other forums we don’t see this type of conversation with a potentially changing situation that often - also reactions from friends and family usually are “oh, my friend had surgery first, isn’t that the norm…?” 

Personally I decided early on I wouldn’t ask about staging as if it was higher than I expected then that would make me spiral. I think how you deal with it is up to you but I would ask the oncologist or BC nurse if you would like to know odds and staging rather than Google! 

In my mind its just a number. I hate people saying “glad they caught it early” and I just say “early enough”. When friends or family ask what stage it is, I say “it’s not stage 1 and not stage 4, but I know enough to make decisions about my treatment, I’ve decided I don’t need to know anymore!” 

It’s really confusing isn’t it! On my good days I’m pretty good at going with the flow and not obsessing but all it takes is a celebrity diagnosis or mention of BC in the news and I’m in google panic mode, literally the worse place to find solace and comfort I know!!! 

Wow Littlecaf what an amazing response, that must give you a real boost! 
You’re so right, they keep telling me it’s about the response rather than the stage. I need to try and keep my mind focused on that and not spiral down worm holes. 
I had total response in my nodes but smaller in the Breast tumour. I wonder if it’s the triple positive element as I understand it, Her2+ ER- responds much better to neoadjuvant treatment. 

Best of luck for your surgery, I can def recommend a mastectomy pillow, mine was a god send! I didn’t get reconstruction as I had a blood clot during chemo so flat close but the pillow really helped. Also silicone scar gel for when the bandages come off!