Lumpectomy and lymph removal now show DCIS

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Had lumpectomy just over 2 weeks ago and recovered amazingly well. No pain, full range of motion etc. Didn’t even need pain meds at all, zero discomfort. Lump never showed on mammogram was found by accident on ultrasound. Just had results back, lymph nodes clear thankfully, tumour was slow progressing and smaller than expected, 12mm instead of 17mm, was all going great, 3 of 4 slides clear margins, however 1 out of 4 slides didn’t have clear margins and are showing DCIS. Back in Wednesday to enter same wound to try got the entire DCIS removed, will be a wait for results again to see if a third op is needed or worse mastectomy  

Am I unreasonable to be concerned about what else is in my tissue perhaps an inch to the left there’s more, or right, maybe closer to the surface of nearer the chest wall? Maybe even the other side? I’m wondering where it all ends, how far do I go, will I ever relax completely? I know I should be grateful and take the positives but I’m concerned that starting back at square one, there’s a high probability that I won’t be so lucky to recover as well as before. Mind is in over drive wondering what even is the point and why did none of this show up on my MRI, many mammograms or Ultrasounds. Can only imagine there could be much more not found. I’ve went from hopeful to barely even able to think straight

Anyone else had DCIS found AFTER lumpectomy and how did their experience go and what happened afterwards regarding treatment. Any info I find seems to show DCIS removed during lumpectomy as it was known to be there

  • Hi MaryDoll welcome to the forum and I am so sorry to hear how worried that you are. I can relate to all that you are saying as mine was found by chance on the Mammogram and I could not feel anything and  thats scary. However, mine was Lobular Breast Cancer and needed to be confirmed with an ultrasound as it was so deep in my breast  which is not uncommon when things are so deep in our breasts. It is also not uncommon for further surgery to be required when they dont get clear margins around the Breast Cancer they remove. 

    I dont know what to say about how you are feeling except to say that you are not alone in feeling and thinking as you do and the fear never truly leaves any of us. I am out the other side and now on the 3 year cycle for Mammograms and that concerns me as well as I didnt feel anything but what happens if something is there and only gets found by accident? My answer to that is that Ill just have to try and deal with what comes because I refuse to let Cancer win and dominate and rule my life. Its taken enough from me and many others like me and you so  dont let it steal your life after Cancer as sometimes we dont always get any answers that make any sense. 

    Sending some huge big hugs your way for now. xxxx     

    gail

     
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  • I was always told that once they get clear margins you’re good to go and radiation will clean up anything else that’s potentially left behind

  • You’re absolutely right! I’m glad to hear you’re out the other side and doing well and I can see that being on 3 year cycles will also be pretty scary. It’s just one thing after another really but I agree that we can’t let it define us and take over our thoughts. I was having a somewhat neurotic moment I guess and spiralling as it was fresh news because I’m all about taking it a step at a time and jumping through the medical teams hoops they ask me to jump through as and when they happen and not a second before. 

    Thank you for your kind words

  • Absolutely! I have to trust in my medical teams process I guess and dust myself down and get on with it. It’s hard not to spiral sometimes, especially when the news is fresh. 

    Thank you, I hope you are well, 

  • Hello,

    I had the same experience. Lumpectomy and clear lymph nodes, but results after lumpectomy showed dcis. I had a further operation to get clear margins, which was successful. I then had radiotherapy to mop anything up.  That was 2 years ago now and I have had two clear mammograms. I take Anastrozole to help keep any relapse at bay.  For me, the most painful was having the lymph nodes removed for testing after the first operation. I wouldn't say the second operation was any more painful, but my nipple was very inverted after the second operation and there was a bigger dent. Although my nipple has popped out a lot more now. It may be that dcis is detected through tissue analysis only and for me, although it was a huge disappointment that I didn't get clear margins at first, I was glad they picked up on it. Hope this helps.

  • Thank you very much for your reply, that’s very encouraging to hear. Also I hadn’t thought of additional possible changes to the breast so that’s also good to know and perhaps expect rather than be surprised and shocked when or if it happens. Very true too that I should be grateful that it was found, and I really am, I’m just wary that there could be other areas also awaiting discovery but yes that helps very much thank you. I hope you are getting on well with your Anastrosole

  • So glad you feel a bit more encouraged! I found it to be doom and gloom, but went with the flow and realised the positive of finding just a bit more had to be taken for clear margins. I'm in my late 60s, but wear a bikini and just add an extra soft pad to the side I had the operations on! (I moved to a hot country the year I finished my treatment). Anastrozole has its plus and minus, but the plus outweighs the minus. Take it easy, try not to overthink things and keep us all up to date with your progress. Sending hugs.

  • Aw thank you kindly and well done you seeking out sunnier skies.

    Yes first time around I found all posts and info to be doom and gloom but my experience of the actual process was really positive and can’t complain. I’ve already changed my thinking to glass half full and I’m now taking the positives so once again thank you for your wise words, you’re so right, I’m indeed very grateful it was found. Enjoy the sunshine