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Anyone experienced DCIS recurrence?

RainbowCats
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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. 

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  • Offline in reply to RainbowCats

    Thanks, I was a little worried but happy it's nothing for me to worry about. Only problem now is that my breasts different sizes now and noticeable. I guess that's the price I pay for survival. 

    Anyway how are you doing? 

  • Offline in reply to Topazeyes78

    Hi  , Good on you for deciding to go ahead with all that treatment. It’s a lot to get your head around isn’t it?! The first time I was diagnosed I just had a mammogram and ultrasound. So I guess it is possible that there was something else lurking there. It’s hard to come to terms with but I just have to recognise that I’ve done some good things in the last couple of years that might not have been possible if I’d had more extensive treatment. Ridiculous because no one wants a recurrence but it’s the only way I can make my peace with it. Very best of luck with your treatments x

  • Offline in reply to Magpiemaggie

    That is frustrating - will they offer you any treatment to help balance them up better? There’s a lot of prices to survival and it’s interesting how many people I keep having to remind that being sad/ angry/ frustrated with the cosmetic/ identity element doesn’t mean I’m not grateful they can treat me to survive. 

    TBH I’m not doing great. I feel like I’m constantly being kicked:

    - I’ve found out why I got breast cancer, I’ve a BRAC2 gene fault. I’ve not been able to speak to anyone about what that means for me, was just told before the weekend. I think it’d be fair to expect I’ll need a double mastectomy now. It feels like we’ve gone from 0 to 100 miles an hour in a few months.

    - The breast I had the lumpectomy on started hurting more over the last couple of days with another wave of bruising appearing and some very tender hard areas. I’d called BCN to discuss this when she told me the genetics result. She said it’s likely to be where the breast tissue was manipulated into place to fill the hole and now scar tissue is forming. But it’s felt gradually worse over last two days whereas the week before I was painkiller free, I’m now back on the paracetamol.

    Quite worn down by it all. X

  • Offline in reply to RainbowCats

    Hi

    Wasn't offered anything. Was told surgeons try their best but have to live with it. I will have to get padded bras and remove the padding from the left side. I know it sounds vain but people are looking at my breasts and it's made me feel uncomfortable.

    My swollen breast hurts, like you, this has been put down to scar tissue. I did see the scar tissue on the ultrasound and it is thick with around 5 layers of it. I have been advised to rub volterol on it to relieve the pain. 

    I am really sorry about your results and angry that you learned about this over the phone. NICE guidelines state that patients must be offered counselling. It is unacceptable that health care professionals treat patients this way.

    You have a lot of decisions to make, I don't wish to add to your woes but when I met my consultant prior to my genetic test, she advised that if it comes back positive then I should have my overies removed as well as my breasts as, according to her experience,  women with the gene got ovarian cancer not breast cancer. 

    I feel it's something you should raise with your consultant. Do you have a 'Maggies' near you? They offer all sorts of support as do Macmillan. I went to the latter and received massages, reflexology etc, it really helped me to relax and felt better for it. Don't forget to treat yourself, cancer doesn't get a say on how you feel about yourself and how you live your life. Keep doing the things that make you feel good. 

    I know how difficult this is and my heart goes out to you x

  • Offline in reply to Magpiemaggie

    I don’t think it sounds at all vain at all. It’s absolutely about how confident we feel in our own bodies. If the world wasn’t so judgy about bodies - particularly women’s bodies - maybe we’d not feel half the discomfort. However even then, there’s things we want for ourselves to feel happy and comfortable. Definitely push for more help if you find the padding and volterol are not good enough.  

    In the end I went to A&E and all round terrific service. Everyone understood my decision to get it checked sooner rather than later. My bloods show a raised inflammation marker so being treated for a potential infection and like you, having an ultrasound tomorrow. 

    It was certainly a bombshell over the phone. Stupidly I consented to be given the results by phone at my diagnosis appointment because I just wasn’t thinking straight. I was just floored as I knew from reading about it that it’d mean increased ovarian and pancreatic cancer risk (higher than the general population yet breast cancer is the highest risk of the 3 types by a long long way so that has to be the first consideration).

    The problem with the ovarian op from the basics I know is that they give women HRT to help reduce the big risks to their heart and bones created by the sudden surgical menopause. But as I understand it you can’t have HRT if you’ve had breast cancer. So I feel like I’ll have to have a lot of conversations with the genetics specialist I’ll be referred to now about which risks to take and which not to take. Otherwise, I feel like trying to outrun cancer is going to destroy my lovely body, causing lots of other health problems. Most of all I’d really like all these things are being considered holistically by all the right specialists together with me. 

    We’ve got a local cancer centre right near me so I’m going there first for physiotherapy and then I’ll explore what more I want to take advance of. I think most of all I need psychological support because I feel very bleak about what my life has become in the space of two months. Thanks for understanding. X

  • Offline in reply to RainbowCats

    Obvs I don’t know if I already have ovarian cancer so that should be the next fun set of tests :-( 

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