Don't know what to do

Jt1970 Member Posts: 1
edited April 2018 in General discussion
Hi I was diagnosed with DCIS in 2015 had it taken out and I have had radiation done, now i have another one come back in March this year and had it taken out way were both benign now my specialist is asking me to choose between a mastectomy or keep being checked regularly not shore on what r


  • kmakm
    kmakm Member Posts: 7,974
    Hi JT. I'm sorry that you find yourself here, but welcome.

    Perhaps you could ask your GP for a referral to another breast surgeon/oncologist for a second opinion. There's no harm in hearing another point of view and it might clarify things for you.

    Is there a history of breast cancer in your family? Has your specialist spoken to you about genetic testing? These things can sometimes influence the doctors and ourselves when it comes to clinical decisions. Your age can also be an influencing factor, as can the grade of the DCIS.

    How do you feel about having a mastectomy? What is your gut telling you?
  • Jt1970
    Jt1970 Member Posts: 1
    Hi kmakm thank you. I have spoken to my GP and as far as i know i don't have any family history with breast cancer. I don't know if there is any other treatments I could have before deciding to go ahead with a mastectomy because I have a friend I work with and she had a lump removed but not a DCIS and limp nodes removed and chemo and hasnt been asked to have a mastectomy is that normal. 
  • iserbrown
    iserbrown Member Posts: 5,552

    The link above will help hopefully for you to understand DCIS and give you questions to ask.

    Others on here have DCIS and might give you their story.

    Explore the BCNA website and maybe ring and speak with one of the nurses on the helpline 

    Take care 
  • kmakm
    kmakm Member Posts: 7,974
    JT it sounds like you need more info and I think @iserbrown's suggestion to call the BCNA helpline is a good one. The number is 1800 500 258. The trained nurses there will be able to give you some good advice I'm sure.

    To find what other people here have experienced with DCIS, just type it into the search bar at the top of the main page and you'll get lots of results. Take care. K
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    hi JT1970

    Below are a couple of links to help you find your
    way around the forum and also how to find a breast care nurse and how to order
    a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a
    diagnosed.... Breathe and take it one step at a time. 

    The what and how thread. 

    Breast Care Nurses 

    My Journey Kits and other

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information
    or support please call 1800 500 258.  The Helpline is open Monday,
    Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
    till 9 pm EST.

  • Anne65
    Anne65 Member Posts: 425
    edited April 2018
    @Jt1970 Sorry to hear your story but hopefully myself & others on this forum can give you some helpful advice. I was diagnosed with DCIS in Dec. last year. It was stage 1 but invasive. I remember going through what you are now in between seeing my GP for the result & prior to my first meeting with the surgeon. In the car on the way to the appt, I was wondering what I would have to chose as I was sure she would ask me the same question, "Lumpectomy or Mastectomy". I felt sick not knowing what to do & i don't handle decision making at the best of times. When I went to see her, she looked at my scans & test results & SHE made the decision for me. She chose lumpectomy & she would fill in the gap with tissue from under my breast. I walked out of her office feeling like a weight had been lifted. She was confident in her decision & I trusted her decision. She didn't even hint at me having a mastectomy.

    My surgery was very successful with clear margins. I did have family history of cancer with my mum dying of ovarian cancer when she was 46 y.o. so I was given the gene test. I had been booked to have 16 doses of rad treatment just as a precaution but the rad onc wanted to wait until the gene test came back as if it was positive, he thought i may consider having a mastectomy instead of rad. So that was another time of panic as i didn't know what i would do but luckily the test came back negative so the rad went ahead. I did speak to my surgeon & she said that even if the gene test came back positive, she would have recommended i still have rad treatment but with more regular checks from her.

    I guess i have been lucky that my medical team have made my decisions for me & decisions that i am happy with. i also got the feeling that my surgeon would rather put me through the least amount of surgery as possible & not jump into giving me a bilateral mastectomy when i only had an initial diagnoses of DCIS. She only operated on what i had at the time & not what I MAY get in the future & she was confident with regular checks, she could monitor any changes.

    So, I have now had a lumpectomy, 16 doses of preventative rad treatment & I have just come out of hospital two days ago after my medical team & myself chose the option of me having my ovaries & tubes removed due to the high risk of me developing ovarian cancer. That's my story & I am so happy with the decisions that my team have made for me so I didn't have to make the call on what operation to have.

    The idea of getting a second opinion is a good one & also just going with your gut feeling. The advancements they are making with testing is only going to get better so why have a bilateral mastectomy for DCIS, when regular checks can monitor any changes.

    Your goal posts constantly change so I have learnt to just deal with the cards you have been dealt with instead of worrying about something that may not happen. Get the gene test if you qualify as this may help your decision & see if their is any family history that may effect your decision. I have read posts of other women who have had bilateral mastectomies for DCIS after their surgeons recommended it & are now regretting their decision but others who are so nervous about the possibility of getting a recurring cancer who are happy with their decision to go the whole hog & get them both removed.

    It may seem overwhelming at the moment but the more info you get & medical advice you receive, it will help you make your decision or you will find a surgeon who you will trust to make it for you. i wish you well & know what you are going through. For me, every time i have been confronted with a crossroad, I have been blessed as my gut decision has been the same as that given to me by my medical team which has made this journey easier. take time & ask questions & listen to the advice from others but most of all do what you think is right for you. many hugs xxxxxx