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DCIS

MoorehealthMoorehealth Member Posts: 1
New diagnosis for DCIS.  Waiting to have a MRI before surgery to confirm what they have seen on the scans and biopsies are are accurate.  Like to hear stories of similar experiences please to help with understanding.  Thanks  
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  • Julez1958Julez1958 SydneyMember Posts: 607
    Hi @Moorehealth
    Welcome to the forum , you can ask any question on here and we will try and help - we all “ get it” in a way people who haven’t had breast cancer can’t.
    The waiting for test results is a very anxious time - try and stay away from Dr Google” and try and keep busy.
    I have never had trouble sleeping ( still don’t) but after my diagnosis until I got all my results back and knew where I was going ( stage 2, grade 2, lobular cancer , mastectomy , radiotherapy and now hormone therapy) I had some sleepless nights with a LOT of crying.
    The tests are necessary and will enable your medical team to formulate a plan specifically for you .
    Once you have the results and a plan you will feel a bit more settled.
    Breast  cancer has an excellent survival rate so try to avoid thinking the worst ( easy to say I know).
    Take care and note there is a wealth of information on this website including the forum .
  • KallenKallen Ballarat, VictoriaMember Posts: 5
    I had a small amount of DCIS (less than 10mm). I had a lumpectomy and re excision. I was told that I didn't require radiation treatment or hormone blockers, just surveillance.
  • Anne65Anne65 Member Posts: 418
    @Moorehealth Sorry to hear of your diagnosis but glad you have found us! I was diagnosed with DCIS in Dec. 2017 & had a lumpectomy. The surgery was successful, with clear margins & it was discussed that I may not need any further treatment. Due to the fact that my DCIS was aggresive, it was decided that i would have 15 doses of radiation therapy as a precaution. I have had no problems or further treatment & Im on no medication. I am one of the lucky ones & as you will learn, every case can be different & require different treatment but i hope you are like me & have a good outcome. All the best. xx <3
  • lovemoonlovemoon Melbourne Member Posts: 38
    Hi @Moorehealth I was diagnosed with DCIS in April this year. You are lucky that your surgeon lets you do a MRI before the surgery. Mine didn't think it was necessary but I kind of insisted of doing something before my surgery, so, I did a CT scan of the body and bone, which showed nothing. However, after my surgery (I had a double mastectomy), the pathology results showed that I had a micromet in one of the lymph nodes, ended up doing 3 months of chemo after the surgery. 
    So, everyone diagnosed with DCIS will be different and I guess a MRI may be more accurate than a CT scan. Hope that a surgery is all you need and you can be on the mend very soon. Good luck and all the best  <3
  • Pommy8Pommy8 PerthMember Posts: 81
    I was diagnosed with DSIS in April told very unlikely any cancer will be found.
    Went in had removed nevercrossed my mind cancer would come out of surgeons mouth when I returned for results.
    Very small 8mm so 3 weeks after 1st op back in 2nd operation to check lymph nodes thankfully all clear.
    Oncologist not sure if I needed chemo as border line and I had to basically decide I was offered the oncotype test cost of $5000.
    Took me 3 weeks to deceide to sent for test and mentally torture deceiding what the hell I should do.
    Thankfully tests came back no chemo needed which oncologist thought score world be high due to grade 3 and k67 was 58%.
    Had 15 rounds of radiation went well no side effects and tomorrow I start hormone tablet for 5 years.
  • Julez1958Julez1958 SydneyMember Posts: 607
    That’s a bummer you had to pay that much for the test but great news that you avoided chemo and it’s potential side effects.
    I also had radiotherapy ( very little in the way of side effects - ask about mepitel/mepilex or strata xrt cream ) and am now 2 years in on hormone therapy ( some side  effects but manageable so far).
    Take care 🌺
  • Pommy8Pommy8 PerthMember Posts: 81
    Just taken 1st tablet feel like life over as I know it.
    Just like a waiting game for side effects to start .
  • AfraserAfraser MelbourneMember Posts: 4,019
    @Pommy8
    With any luck, it’s just the next stage of your life! Some of us have few side effects that affect our day to day life. Best wishes. 
  • Julez1958Julez1958 SydneyMember Posts: 607
    Hi @Pommy8
    Not everyone has side effects and the side effects, if any , may be mild.
    Its important to talk to your oncologist if you get side effects as there may be things that can be done to minimise them.
    Take care 🌺
  • BlackWidowBlackWidow Lake GardensMember Posts: 262
    I was given a mastectomy and that was that.  No discussion of any other options. No need for other treatments as the nodes which were taken were apparently OK.  No other tests were recommended either.  Guess what will be will be. @Kallen, I have not been on for a while but see you are in Ballarat.  Can I ask who your surgeon was (PM me if you are happier to do that).
  • KallenKallen Ballarat, VictoriaMember Posts: 5
    Hi,
    I saw a surgeon in Melbourne. Her name is Katrina Read.
  • BlackWidowBlackWidow Lake GardensMember Posts: 262
    Thank you @Kallen.  Is there any reason you did not use a specialist closer to home ?
  • KallenKallen Ballarat, VictoriaMember Posts: 5
    Thank you @Kallen.  Is there any reason you did not use a specialist closer to home ?
    I was told to find a surgeon who specialises in oncoplastic surgery and reconstructions. I didn't need it in the end. I recommend Emma Gannon and Stuart Eaton for local surgeons.
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