Anyone experienced DCIS recurrence?

This feels like a strange deja vu as I visited these forums a lot in 2022 when I was diagnosed with a 5mm high grade DCIS. And it gave me lots of hope and information. Within 6 weeks I went from mammogram, ultrasound and biopsy to wide local incision and finally to be discharged to come back for annual mammograms. It felt like a whirlwind however I’ve felt so grateful to have “got away so lightly”. No radiotherapy, no drugs to take, minimal scar and in the first year my mammogram was clear. 

However, this year my mammogram picked up something. I didn’t find out until the biopsy that it was either a new or growing calcification. I’ve now been booked an appointment at the breast surgery clinic and I can only assume that you wouldn’t waste a consultant’s time on a patient if there’s nothing suspicious. I’m pretty devastated as I hoped I’d put this behind me. All my past worries about it becoming invasive, having a mastectomy, radiotherapy, etc and all the knock on implications on our life have flooded back. I just can’t imagine being so fortunate to have minimal treatment twice and, if this is a recurrence of DCIS, the speed of recurrence feels worryingly fast. Trying to take solace in the fact I’m forties and otherwise fit. 

So I just wondered if anyone else has been in a similar position. 

  • Well done in getting through all of that. I'm impressed by the amount of physical activity you have managed.

    I was told genetic testing can take months, it depends on the capacity of the laboratory, so I wouldn't be worried that you've not heard back yet. 

    Tomorrow is the chance to get all the info you need to move on. As they say Knowledge is Power and it should stop the intrusive thoughts in your head, which in itself can be exhausting.

    You have come this far, you can do the next stage

    Do come back and let us know how you get on x

  • Thanks   that means a lot. So, hugely relieved to find the invasive cancer has been removed and is NOT in my lymph nodes. I recognise this is very very good news. Sadly, as seems to be the way with cancer, there’s less positive news too. They found 2cm more DCIS around the invasive cancer so my margins aren’t clear which requires more surgery. Also the team has looked back at all my scans they think there’s several small calcifications at the edges of that area. They weren’t concerned about them before as they’re not a cluster but now they’ve found a much bigger patch of DCIS they are uncomfortable leaving them there without knowing what they are. They’ve gone away to consider all the options but mastectomy seems quite likely now as they sound difficult to biopsy and a further lumpectomy would be pretty disfiguring. No news on genetics tests. So more waiting to find out where we go next - feeling a mixture of partial relief and exhaustion x 

  • Thank you for updating, it's a much clearer picture than before. I also had to have further surgery to clear the margins, much easier than the first. How do you feel about having a mastectomy? Have they offered reconstruction? I had over 7cm of DCIS in my right breast and 6.9cm in left, my surgeon was able to do a reconstruction on both. I went into surgery with C cup and came out with a D cup, don't ask me how as I have never been told how that's even possible

    However if mine comes back I will be opting for a double mastectomy. There's only so many times I am willing to go under the knife. x

  • Honestly, I feel absolutely gutted to have a mastectomy. I really like my breasts and I’ve come to love my body as it is over the last few years. A mastectomy was the thing I was most relieved to avoid after both diagnosis’. I was most shocked as I hadn’t considered it would be reappear as a treatment option on the table. They say chemo is unlikely to be needed but I’m quickly learning to not count my chickens and just take this one consultation at a time because it seems to be an ever evolving picture - who knows what the small calcifications actually are?! I’m in agreement with the consultant, I’m not prepared to wait and see because I don’t want to risk being back here again worrying if it’s in my lymph nodes whilst knowing that I could have taken them out much earlier. So, I guess I’m slowly coming to accept it just needs to be done. Like you, I also don’t feel comfortable repeatedly having lumpectomy surgery. They were clear how tricky my last surgery was and the huge amount of bruising I have this time compared to last time is indicative of that. The consultant mentioned nipple-sparing mastectomy and reconstruction with an implant, which I really hope will be possible as I’m an F cup. I’ve got a lot of questions I hope to get answered next week. Huge admiration for you having gone through treatment on both breasts - that is a lot to get your head around and a lot of simultaneous healing to do. I’m very much hoping my other breast remains ‘unremarkable’ ;-) x

  • I was the same, last thing I wanted was a mastectomy, for me it was more to do with the length of time in hospital and the down time. A nipple sparing mastectomy sounds okay, my surgeon was going to remove mine and "make me new ones". Honestly, if only it were that simple. Gave surgeon a lecture on why nipples are important to women, especially when it comes to sex. Don't think a lot of surgeons realise that there won't be any sensation after surgery. 

    I am in the position just now that my left breast is slightly swollen so back to the breast clinic next week for scans. I am not worried, just so fed up with it. 

  • Let me know how you get on as I’m also here to support you too. I can entirely empathise with the fed up feeling. It would just have been lovely if both of us had been able to draw a line under our BC experiences first time round and it sucks that neither of us have been able to do that. It helps me to sit with that feeling sometimes before I can move forward and accept it. Take care of yourself ahead of your scan x

  • It would have been nice to never have any worries again but I know there will be times when something doesn't feel right and needs to be looked at by the breast cancer team. I let you know how I get on and please let me know how you get on too x

  • Hi RainbowCats,

    Please do let us know how you get on. I had lumpectomy/reconstruction 2nd April 2024. It was 4.6cm in the end (they thought it was 3cm from scans). MRI flagged up a smaller lump that was not showing on mammogram or ultrasound so that was also removed. It could have easily been missed if they had not given me an MRI. Mine is HER2 positive. My oncotype score was borderline 20. For my age (46) the threshold is 16. So I am at the point where they have offered me adjuvant chemo before radiotherapy and tamoxifen. I have decided to do it. Anything to try stop it returning. I am curious as to whether you had an MRI at your first diagnosis? If not it could have possibly already been there but too small to see on mammogram x

  • My swollen breast turned out to be of no concern. The breast team have put it down to the effects of radiotherapy all those years ago. 

  • Oh  I’m soooo pleased to hear this. I’m sure it’s been on your mind on the days leading up to the appointment and you must be really glad they’ve been able to confirm this for you x