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2 surgeries later...

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Was diagnosed with DCIS in September 2023. Was told it was high chance of spreading but was DCIS so not to worry as caught it early enough just to whip it out.
Thats where it all started to go downhill. Went in a week before surgery to have a magseed placed to mark the target, the radiographer seemed to be having some difficulty getting my squashed boob in the mammogram machine in the right place, but after much squashing and squeezing was happy and placed the magseed…. Only to then look at the images and decide that it was not in the right place! So another hour of much the same they placed a second magseed. Looking at their faces I still wasn't convinced when she told me 'that is ok' in terms of placement.
Several days later a call from the consultant to advise that he was not happy with either magseed placement so would have to have a wire guided surgery with the wire fitted on day of surgery.
Surgery took place end of October, wire placed (unconvincingly by the same radiographer), lumpectomy done, all seemed to go well and was home same day to recover. Results 3 weeks later and was dealt the blow that they had failed to remove ANY of the DCIS so would have to look at further surgery. Was told this happens very rarely but not to worry it is DCIS and by doing a further surgery where he would carry out a cavity shave to take the required tissue would work.
Fast forward to mid December. Cavity shave surgery. Asked how positive he was that this would do the trick, told 50-60%. Not feeling full of hope but surgery done.
Came round in recovery and taken back to ward, thinking I would be ready to go home, only to discover that my gown was soaked in blood from the surgery wound. So spent the night in hospital to monitor bleeding. Released next day, despite the wound being open and just passed to district nurses to redress my wound daily.
Back for results 3 weeks later… to be told exactly the same thing as I had been told the first time - they failed to remove any tissue that showed the DCIS.

Devastated!! How can this happen twice. to add to the blow my wound was still open (no problems after first surgery with wound healing) but told to be patient it will take time to heal.

Fast forward to today (2 months post last surgery) - wound still open, although is healing slowly, and despite seeing consultant every couple of weeks to check on healing just being told have to wait for wound to heal before they can do anything further in terms of removal of my DCIS.

Latest plan is to 'start again' by redoing biopsy and perhaps a contrast enhanced mammogram or an MRI to pinpoint cells before further surgery….

6 months since diagnosis. No one has re-imaged or looked at my DCIS on any further scans, I worry it has now had a chance to spread, but still being told have to wait for current wound to heal. Driving myself insane worrying whats happening internally and feel like I am banging my head against a brick wall in trying to get answers.


Comments

  • mavericksmom
    mavericksmom Member Posts: 1,246
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    dcismumma I am so very sorry you have had to go through this. Do you live in USA? I do and never heard of anyone going through what you have gone through. If someone on BCO has, I hope they will respond to your post.

    I had new invasive breast cancers three times in 20 years. Because I never heard of anyone having the procedures you had, I have nothing to offer. I'm so sorry. Wishing you the best moving forward.

  • moderators
    moderators Posts: 8,286
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    Dear @dcismumma, we are so sorry to hear about the difficulties you've encountered with the surgeries and wound healing process, but glad you found us and posted. We're sure many members of our community who have gone through similar struggles will offer support and advice soon. In the meantime, here's some helpful information on DCIS from our main site. And this popular discussion might also be a good place for you to tell your story: Lumpectomy Lounge....let's talk!

    Hope this helps! We're here to listen, so please don't hesitate to reach out whenever you need.

    Sincerely,

    The Mods

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,060
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    I’m so sorry you’ve had to go through this ordeal. Although modern medicine has come a long way, unusual or unexpected things can and do happen. Even if something rarely happens, that doesn’t mean never. I had a side effect after port installation that happens less than 1% of time. Thus far no one on this site has experienced the same, yet it happened to me*. That being said, have you considered a second opinion? It really might help allay some of your doubts, answer some questions and just having a new pair of eyes look at the situation may be very helpful. Take care
    *Post surgical x-ray did not pick up small nick in my lung. I experienced a complete pneumothorax about two weeks after the surgery.

  • anthurium73
    anthurium73 Member Posts: 3
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    I’m sorry to hear you are worrying and feeling like you are banging your head against a wall.

    So this started in September 2023 and by now your wound is probably healed and hopefully all this time you have successfully coped with all these setbacks.

    You mentioned looking forward to MRI to continue your treatment. I hope you were able to achieve that.

    Good luck