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DCIS

Mazem83
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I am now 5 weeks post op

single mastectomy after DCIS diagnosis due to mass being 11.5cm in total. I also had reconstruction at the same time and some lymph nodes removed.

just had my pathology results, the DCIS had progressed to the next stage but because I had a mastectomy I won't be needing any Chemo or radiotherapy, also my lymph nodes that were removed have come back as clear so even though it had become invasive, it hadnt yet reached my nodes!!

i have been so lucky that I caught it really early.

i have been put on Tamoxifen for 5 years and also had genetic testing done by my consultant, so it's a 3-6 month wait for those results to determine my next surgery.

i have been lucky to have leading experts as my consultant team at my local hospital and I owe them and the nurses so much, I can not fault any of the care or treatment I have been given.

Keep fighting and keep positive x

 

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    Hello Mazem83, 

    I hope you are recovering well from your operation. It's fantastic news that you won't be needing chemotherapy or radiotherapy and that the lymph nodes were clear. What a relief it must be for you and it's great that it was caught so early. 

    I can imagine this 3-6 months wait is stressful for you and I hope that you can find out more soon about what to expect. It sounds like you were in the hands of great experts and that you received excellent care. Thank you so much for coming here and sharing this with us as we love to hear about positive stories like yours. I am sure this will inspire many ladies here who are currently going through the same thing. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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    Hi Mazem83

    Sorry to read you've had to go through all this.  My diagnosis was much the same as yours.  DCIS and a small invasive that post histology turned out to be slightly larger than originally thought at 10mm.  I had a mastectomy without reconstruction last March.  No chemo or radiotherapy just Tamoxifen for now.  It took me a while to come to terms with what had happened and there was a raft of emotions.  Feeling enormously grateful that it had been found so early, with no spread, but then feeling terrible guilt for others who hadn't been so lucky (I know a few people and family members who've had a tougher time than me).  It took a while to realise that everyone's journey is different.  
    When we haven't had to go through the trauma of chemo or radiotherapy it almost feels as if we havent had a 'proper' cancer journey.  I know I was very insecure about not having any further treatment and it took a lot of reassurance from my nurse and consultant to convince me that I was going to be okay without it! 
    We are the lucky ones I suppose and every day I'm thankful.  I'm so glad that you're okay too.  Wishing everyone else well on their journeys.  None of us want to be a member of this club, but thank goodness they can look after us all so well and there is now so much success in treating this and that in many situations we will all be okay.   
     

    Mary x

     

  • Offline in reply to marywj

    Hi Mary

     

    yes we have been so lucky, and I totally get what you mean about not needing the extra treatment afterwards.

    How are you finding the Tamoxifen? I have heard so many negative stories about being on it. I'm only two days in so still waiting for side effects to hit me.

     

    Emma x

  • Offline in reply to Mazem83

    Hi Emma,

    I've been on Tamoxifen for 6 months and it's been okay really.  Nothing major.  Bit of flushing and insomnia at night and I'm now having a bit of joint stiffness but it's not bad.  The main thing I've noticed is that my hair doesn't grow anymore and it's thinner.  I'm on it for 2 years then the plan is to switch to Letrozole.  The Tamoxifen does seem to suit me so I'm worried about changing actually.  
     

    I try to drink a lot of water and stay active to help prevent a blood clot too.

    I hope you manage to stay feeling well on it, I'm sure you will.  My feeling is that it's a small price to pay.

    Take care

    Mary x

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