DCIS and Invasive Grade 3 - but no scans before treatment?

Morning MazEmily 

Yes, that's likely to be usual for DCIS, so please don't worry.  As you cancer is often described as 'pre-cancerous' and hasn't reached the invasive stage yet, then they highly likely wouldn't do scans.  

I was diagnosed nearly 6 years ago and had 54mm of grade 3 DCIS and also grade 2 of 15mm invasive tumour and I didn't have any scans at all.  Because of the tumour, mine was stage 1 and maybe (a) they didn't do that many scans 6 years ago and (b) stage 1 they weren't too concerned about.

Yours is classed as stage 0, which although all the procedures /operation you had to go through is similar, it's the best news for you as it's not turned into cancer.

I hope this reassures you a little.

Best wishes, Lesley

Thanks Lesley.

I was found to have invasive cancer after mastectomy (instead of before).  I think what I'm thinking about is now I have to go through all this horrendous chemotherapy and radiotherapy etc that as no scans were done initially they cannot scan me now to see if the treatment has worked.  I'm just wondering the usual order of events that would mean a scan would be done prior to surgery and chemotherapy as other people have had.

Oh, MazEmily that must have been a shock to get this news afterwards. 

Did they find any in your lymph nodes? If they did, I would be asking the BCN if you should be having a scan now then.  If they didn't then they are reassured that it hasn't spread, but the fact you have had radiotherapy following a mastectomy - as a general rule they don't necessarily do this unless some cells have been found in lymph nodes.

I guess they just didn't do a scan before because at that time they must have been pretty sure (based on the mammogram) that it was DCIS and non-invasive and it must have been just as much of a surprise to them as you that they had found invasive cancer too.

I never had one, but then when I was diagnosed, I didn't have Oncotype DX test for ER+ cancer which seems to happen for every lady now for this type of cancer. 

Hopefully someone who's had a mastectomy recently will be able to pop on and give you an idea whether they had a scan as I guess I'm a little out of date with the way treatment has progressed so much in the last 6 years.

Best wishes, Lesley

Thank you Lesley, I've had mastectomy, chemo and will start radio soon. I just feel like they missed it out and so I won't get the chance to see if this treatment is doing anything.  I think they just assumed it was DCIS and by the time I had had a mastectomy it was too late which is very frustrating.  I appreciate you replying. 

Yes one out of 2 lymph nodes were positive.

Hi Emily, I am sorry this has happened to you. I had a similar experience which I hope will help. One of the things I have learned is that everyone is different. I was diagnosed with invasive cancer but grade one and no lymph node involvement from the biopsy. I had WLE including sentinel node removal. Unfortunately they found a lot of disease in the sentinel node and advised full axillary node clearance. The remaining nodes were clear which was unexpected.  I haven't had any scans but instead was advised that chemo would remove any cells still circulating (which wouldn't be picked up by scans) and radiotherapy which is localised.  Ask your team any questions ..It is important you have trust anthem , otherwise they just proceed with what they think is the best option for you . I hope this helps x

Thank you, that is very helpful.