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high grade dcis- 35 years old

jadejgreen
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Hi on Wednesday I was diagnosed with high grade DCIS. I found a lump in my left breast and then was referred for an ultrasound and then a biopsy which confirmed the DCIS. They then sent me for a mammogram where they found some more calcification in one area of the same breast and I am waiting to have a biopsy of that one done. 

I have since spoken to the breast care nurse who has been very relaxed about the whole matter and said as long as I have surgery within the next 20 years that should be fine even though everything I've read if you have high grade then it can change to invasive within 3 to 5 years and we don't know how long I've already had it for. I've also been worried about my age being young at diagnosis the nurse also said that doesn't affect things but again everything I have read shows that the younger you are at diagnosis more chance of recurrence of the DCIS or even invasive breast cancer. I said that I was thinking about having a mastectomy and potentially a double one to me as I never want to go through any of this again I also don't want radiotherapy. She was very cross with me even saying this as she said they wouldn't do this they would do a lumpectomy and probably not radiotherapy. And this goes against what I have been reading and I feel like I have no control over what is going to happen now. I understand that the prognosis with having a lump ectomy and Mastectomy is the same as in survival but it's not the same in recurrence rates.

If anybody has any advice it would be very welcome thank you very much.

x

 

  • Hello Jadejgreen

    I'm sorry to hear about your recent diagnosis of DCIS. It's obviously been an anxious time for you and I can understand that you would want to do all that you can to protect your health in the future. 

    I've linked our website info above but you might find it helpful to talk things through with one of our team of nurses. I'm sure they would be happy to answer any questions they can and to help you think about what points you may want to raise at your next appointment. They're available Monday to Friday from 9 am to 5 pm on 0808 800 4040 so give them a call when you're able to. 

    Keep in touch Jade and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

     

  • Offline

    Hi Jadejgreen

    Sorry, you find yourself here. I was diagnosed with high grade DCIS 3 years ago and unfortunately, my breast nurse was incompetent.  My advice is to ignore the nurse. You seem to have read up on breast cancer and know what you're talking about. You have ALL the control - don't let anyone let you believe you don't!

    As I mentioned, I had bilateral high grade DCIS, and had to make my options according to that diagnosis and was given two options by the consultant; double mastectomy, or reconstruction. I decided to go with my own option of wide area incisions (lumpectomies) as I too had read up research papers, prepared a list of pros and cons and felt this was the best decision for me. Post op the lumpectomies showed invasive cancer that was not picked up in the many mammograms and ultrasounds I had - so high grade DCIS can never be taken lightly.

    You have not mentioned a surgeon so I guess you have still to meet one. That should help separate the wheat from the chaff and you'll get a better understanding of the plan for you. If the surgeon's nurse is the same one you spoke to, I would advise you to ask for a change of nurse, trust me you'll regret it if you don't as you'll need a competent, compassionate and supportive nurse to get you through your treatment.

    Hope this helps and here if you have any more questions or need support x

     

  • Offline in reply to Magpiemaggie

    Thank you so much for your reply and am so glad you;re on the other side of this.

    I am so worried because I ultimatley want a mastectomy given that my DCIS is high grade with necrosis and my age. But becasue they found additional calicific changes on the masectomy they need another biopsy. This is all going to add a lot of time to any treatment. Which of course I am concerned about given the high grade, age and it being found clinically via a lump all add to the possible invasiveness and future reoccurence. when they first knew my high grade DCIS they said I would have surgery within 4 weeks. Now because they have found more this is going to be delayed by quite some time. I do understand but given that the outcome I want is a masectomy either way I don't understand the need for the biopsy and additional time. 

    But as it stands I will hav eto go throuth th rest of th etesting before treatment.

  • Offline in reply to jadejgreen

    Hi Jadejgreen

    I know where you're coming from and I can't answer that question but my guess is that perhaps they want to rule out anything that would change treatment and surgery options. I waited 5 months before I had my first operation as they didn't see High Grade DCIS as a priority. I wasn't too worried as I was told it was 'only DCIS' and contained, Even post op invasive cancer pathology meant that my treatment and surgical options wouldn't have changed anyway. It was just living with it, waking every morning for those 5 months knowing that I still have this thing inside me. I was really relieved once I had the operation and it was gone. 

    Putting myself in your shoes I think I would try and get answers from the team treating me, I would write a list of questions and put them to the team. If nothing else having some control may help alleviate your worries.

    other than that it's a case of wait and see and keeping busy - easier said than done but we've all been there and got through it. x

     

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