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FD's avatar
FD
Member
14 years ago

Diagnosed yesterday

Hi

After what feels like forever when in reality it has been 7 weeks from first core biopsy I finally have what I have felt in my gut since first being told ADH border line DCIS confirmation of DCIS. My biggest fear is that my gut will be right again and it is infact more serious. I am opting for a bilateral mastectomy although it appears to only be present in my right side. I have chosen this for many reasons but mainly due to family history although not yet gene tested, being 40, the mother of small children and a fear that I would not be able to overcome the anxiety of possibly having to repeat the process as another family member did. I was originally hoping that the mastectomies would also save me from radiotherapy and was hoping to have immediate reconstruction. I have since found this is not going to be the case as with every visit I am told nothing is for certain and just in case etc etc. I am finding the different opinions of medical professionals difficult and confusing. For someone who likes to always have a routine in place and plan for tomorrow this has been an incredibly difficult journey and I fear it has not yet even begun. I do feel better knowing at least surgery is booked although I am terrified of general anaesthetics and hospitals. I survived the anaesthetic of the surgical diagnostic biopsy so I am sure I will be fine :). If I was to be truly honest with myself it was easier than the vacuum assisted biopsy - 9 samples taken to get the same borderline result. If someone had told me last year I would need to have the tests done I have already completed I would have probably peed my pants :). I just like to be in control. I am praying I have a successful sentinel node biopsy and it has infact been caught early with nothing missed etc. I am in awe of the strength of women in general being a busy mum of small children managing everday challenges and even more so now since my journey begun reading blogs on this website and the kind lady who offered her own personal journey having only met me once for that purpose. If it wasn't for her I wouldn't have known of this website or the My Journey Pack she lent me to read. I have been treated both publicly and privately so thought I should of been told this information was available. I pray I will be a survivor and this is going to be a relatively short process and I then can be one of you fabulously strong women sharing your stories, with a real sense of hope supporting others at their own beginning. Turns out I haven't peed my pants yet so this could be a real possibility :).

FD xx

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  • such_is_life's avatar
    such_is_life
    Member
    14 years ago

    Hi just wanted to say your story is so close to mine, I was diagnosed with high grade DCIS on the 20th of March in left breast, and had a suspiscious area in right breast on MRI which they where unable to biopsy, I am having bilateral mastecomies on wed which is 9 weeks wait time arrrh, mine was a lot to do with the only surgeon able to do it away on leave from my area, and also Peter Mac cancelled about 5 appts on me which was heart breaking, I too have a strong family history so thats why I have opted to have them off, wouldnt it be great if we could get the genetic results back quickly so they could be included in our options I dont even have an appt till august for that, I will sent a contact request so will can keep in touch

    hope all goes well Narelle xx

  • SoniaWhite48's avatar
    SoniaWhite48
    Member
    14 years ago
    Hi FD, My thoughts and prayers are with you at this time. 7 weeks is a long time to wait, whereas my initial diagnosis was a fast roller coaster with no time to think. I do know waiting is harder, as I am now waiting for results and oncologist's decision on what future treatment I need following on from my brain tumour resection. Hang in there, and I know it is easier said than done, try to be patient and focus on yourself while you wait and be kind to yourself, even if that is hard with a young family. It is time to put yourself first. They need you and the best you is well rested. Take care, Sonia :-)
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi FD, what a dreadfully long wait you have had to endure. It is so not fair that 7 weeks has lapsed and you still don't know for sure what you are dealing with. I guess they just want to be really sure before doing the mastectomies. If it is coming up as borderline DCIS, it has obviously been caught very early, which is good news for you, and the waiting, whilst hard on you, is unlikely to put you at risk of further spread, since it is contained. However, we all understand your anxiety, and the need to have a result, as we have all had to play that waiting game. My first wait was a week, but because I was told it looked only like a small cyst, I wasn't even the slightest bit worried, WRONG. The second wait, just prior to my precautionary 2nd mastectomy, was 2 days, and this felt like the longest 2 days of my life. This lump looked highly suspicious, but turned out to be benign. I still went with the mastectomy though, as the anxiety about future cancers that were invisible on mammograms were too great. My bilateral reconstructions are now complete (silicone), and I am happy. I have had chemo, but no radiotherapy, and like you, I really hoped to avoid it by choosing mastectomy, and though the Dr couldn't be 100% without the pathology report, he thought it unlikely that I would need it. I am taking Femara now for a period of about 7 to 10 years, as my cancer was heavily hormone positive. Good luck with all your waiting, and I hope you get the answers you need really soon. We are all here to support one another, and share anxieties and fears. It does help alot. Love Chris xx
  • Chris's avatar
    Chris
    Member
    14 years ago
    Hi FD, what a dreadfully long wait you have had to endure. It is so not fair that 7 weeks has lapsed and you still don't know for sure what you are dealing with. I guess they just want to be really sure before doing the mastectomies. If it is coming up as borderline DCIS, it has obviously been caught very early, which is good news for you, and the waiting, whilst hard on you, is unlikely to put you at risk of further spread, since it is contained. However, we all understand your anxiety, and the need to have a result, as we have all had to play that waiting game. My first wait was a week, but because I was told it looked only like a small cyst, I wasn't even the slightest bit worried, WRONG. The second wait, just prior to my precautionary 2nd mastectomy, was 2 days, and this felt like the longest 2 days of my life. This lump looked highly suspicious, but turned out to be benign. I still went with the mastectomy though, as the anxiety about future cancers that were invisible on mammograms were too great. My bilateral reconstructions are now complete (silicone), and I am happy. I have had chemo, but no radiotherapy, and like you, I really hoped to avoid it by choosing mastectomy, and though the Dr couldn't be 100% without the pathology report, he thought it unlikely that I would need it. I am taking Femara now for a period of about 7 to 10 years, as my cancer was heavily hormone positive. Good luck with all your waiting, and I hope you get the answers you need really soon. We are all here to support one another, and share anxieties and fears. It does help alot. Love Chris xx