Forum Discussion

Desley's avatar
Desley
Member
13 years ago

Increase in re-occurence after 5 years

Hi everyone,

I wanted to know if anyone else has been given the same information as me.  I was diagnosed in May 2011 with Pagets Disease and DCIS and had surgery and then radiation.  At the moment I am on 6 monthly visits and everything looks clear at the moment but my oncologist has said that as my cancer was aggressive and because of my young age at diagnosis (36) that after 5 years from diagnosis that my risk of getting a secondary cancer increases NOT decreases.  This has made me very anxious as I feel like I am counting down the time to the 5 years and feeling like a secondary is inevitable.  My surgeon has suggested that I have both breasts off to reduce the risk and this has opened a whole other can of worms - should I do it? shouldn't I do it? I'm really not sure about any of it and with a husband and 3 kids under 11 I really want to the best thing and give myself the best chance of being around along time so would love to hear from any of you who might be able to give me some words of wisdom as to which path I should take.... Regards Desley

2 Replies

  • louiseg's avatar
    louiseg
    Member
    13 years ago

    Hi Desley

    I was diagnosed with DCIS in 2003 and had a mastectomy (no chemo/radiation) and reconstruction.  Then I had another diagnosis of Invasive Ductal Carcinoma in the other breast in 2010 (this time a mastectomy and reconstruction again but also chemo).  Luckily for me, both times it hadn't spread.  The second diagnosis was a new cancer and not a secondary.

    In restropect, I wish that I had had a double mastectomy when I was first diagnosed, but I was only 35 and wasn't ready to make that sort of decision.

    You have to do what is right for you.  Everyone handles cancer differently and each of us has our own story. Good luck with whatever you decide to do.

    Louise :)

  • FD's avatar
    FD
    Member
    13 years ago

    Hi Desley

    I was diagnosed in May 2012 with DCIS. Although it was caught early the area was large in comparison to breast size so I was advised I would need a mastectomy of my right breast. I chose to do both at the same time for many reasons. Some of the reasons include I too was relatively young at 40 married with a 4 and 8 year old. My aunty has had bc (different types) both sides at different times. I was advised by my Plastic Surgeon that he could augment the remaining breast to match. I knew then if he was happy to cut it open just for aesthetic reasons I was going to have him remove the risk. But one of the biggest reasons was I knew how terrified I would be waiting for it to return. Cancer has always been one of my biggest fears and I didn't want to lay in bed at night wondering when it was coming back to get me. Removing both breasts to me was my way of controlling the disease and how much of my life I was going to give it. For me bilateral mastectomy with immediate reconstruction was not about loosing my breasts I felt lucky to have this choice. I understand for some this is a devastating procedure but for me it has given me peace. It isn't over yet I still have expanders due for exchange next month but I am already very happy with the results. I am a private patient in Perth WA. I do still wonder if the cancer will return even without breast tissue and I have lost both nipples which has it's downfalls. But I wonder just how much sleep I would be getting had I not chosen this path. For me there was never any hesitation I wanted them gone sooner rather than later. Everyone is different so this may not be right for you. For me it was a no brainer which makes the decision so much easier. Good luck with your decision making - always remember it is your decision and whatever you choose will be right for you. Take care Lara xx