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DCIS - treatment options

Charlotte1234
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Hi all,

I went to my local breast clinic for breast pain, and subsequently had 3 mammograms & 4 biopsy's taken (2 from each breast) as I was told I had what looked like a lot of calcified cysts, but nothing to worry about and the doctor wasn't worried about them.

I'm 36, and when I was a baby had acute myeloid leukaemia so generally doctors have always erred on the side of caution, I've always been seen quickly and I feel like because of my history tend to take things more seriously when there is even a tiny remote possibility of something being cancerous.

At my follow up appointment I was told I have medium grade (2) DCIS, and I am having a mammogram next Monday with a follow up appt on the Friday.

The lovely breast cancer care nurse explained everything really well, but I think in hindsight I was obviously in a bit of shock and didn't ask any questions.

She suggested genetic testing so we completed the form but St George's ultimately declined to do the testing.

The nurse did mention a possibility of a mastectomy, which I am fine with but have some questions if anyone has had a similar diagnosis.

I'm not clear what will happen with the 'healthy' breast - before I had my follow up appt and had my results the doctor mentioned that it would be likely I would have to have mammograms every 3 months because of the amount of cysts (they put titanium clips in).

My personal preference would be to have both breasts removed because I wouldn't want to have one go, then live with the worry that something would happen in the other. Is this something that would be considered?

I'm also interested in the timeline for any operations after diagnosis / MRI. I'm extremely grateful for the NHS and I understand you can't pick and choose, but my eldest daughter will be sitting her exams (and is currently unaware) shortly and if I can I don't want to do anything that will distract her from that, so ideally would wait another 6 ish weeks before we had to break the news / have any Ops etc.

im also interested in peoples experience and timeline of a lumpectomy / radiotherapy. Would this be something that I would need a significant time off work for?

Sorry for the long post! Thanks in advance 

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    Charlotte 

    welcome 

    sorry you had a diagnosis I had breast cancer july 22 I'm now fully recovered living back to normal life like a fizzy pop bottle 

    I'm here to chat or help with any questions you may have big hugs 

    lots of love Lara ️

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    Hi Charlotte, 

    Sorry to hear you have been diagnosed with DCIS. You have been through so much already. 

    I was diagnosed with DCIS in Feb 2022 following mammogram due to nipple discharge. Calcifications found so had biopsies which showed intermediate grade DCIS. MRI to check extent of area affected. 

    Had lumpectomy in March 2022 and second surgery in April 2022 although this was cosmetic to fill the gap as they had to remove a significant area. 

    Initially was intermediate but this was upgraded to high grade following surgery. Then had five sessions of radiotherapy. I delayed this until July cos I had holiday plans and the consultant said waiting would not be an issue. 

    Radiotherapy was actually fine apart from a little tired and recovery from surgery pretty straightforward.

    Have my yearly check up next month so fingers crossed all is well! 

    I wish you all the best. Happy to answer any questions you may have. 

    I was 42 at time of diagnosis. 

    Take care xx

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    Hi Charlotte, I'm sorry to hear about your diagnosis. Just in case it's useful, my timescale so far for invasive ductal breast cancer has been biopsy results 12 days after biopsy was taken then surgery (lumpectomy) 4 weeks after that. After surgery, I got a fit note for two weeks off work. That was enough time for me and I could comfortably drive after ten days. Collecting results from surgery this Friday, so three weeks after surgery. I may then need more surgery or chemotherapy but if not, I would expect to start radiotherapy about four weeks after this appointment for one-two weeks. I have not felt totally incapacitated at any stage and have been up and about but this was for lumpectomy - mastectomy may be different. I am 50, no other health conditions. I have a child doing exams this summer and I've been just praying the timings fit round his timetable too! Best of luck with it xx

  • Offline in reply to Case4

    Thanks all this has been really helpful.

    The ideal goal would be to not have anything surgically until early June but I assume it would be dependent on what comes back from the MRI.

    I also start a new (internal, at my current company) role in May so the timing of all this isn't the greatest but I'm conscious of just being grateful that it could be a lot worse!

    I do have some concerns that they will 'find' something else when they do the MRI, apparently I have very 'dense' breasts which is why the biopsy's were a bit of a struggle. I think it's just my mind getting ahead of itself and I'm trying to stay positive : ) 

  • Offline in reply to Charlotte1234

    Charlotte 

    I'm sure you will be ok in your job 

    I worked althrough mine had day off either side with minimum distruption I feel on times it was the best thing for me it kept me sane I didn't want to give in to it so keeping going suited me 

    you will fly it honestly 

    lots of love and best wishes love Lara ( I'm 48 ) ️

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