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ronnie61's avatar
ronnie61
Member
12 years ago

My BC Journey of Complications !!!

Hi Everyone, it has been a fraustrating 2 weeks for me yet again.  I have bben referred to a Hematologist whom I saw on Tuesday. As I reported 3 weeks ago my full pathology results were in and I am HER2 negative, Oestrogen postive, and a very low Ki 67 resullt. My Oncologist is very sure that my treatment plan will be radiation followed by the hormone therapy, Tamoxifen. I had 3 lymphs removed during surgery on March 13th. 2 nodes clear, and the third showed one very small micromet.

Three weeks later they are still looking into this micromet and my bloods. This week I have had lots of blood tests. Tuedsay hematology appt, yesterday I had a PET Scan which took nearly 3 hours, and today I was in the hospital again having a Bone Marrow Biopsy. I came home 2 hours ago and I am in pain. On top of this I still dealing with the lymphodema in the left breast. My next appt with the hematology doctors is in 2 weeks where they will have all these results. Then they will consult with my Oncologist, and thereafter maybe, just maybe, I will be able to get my treatment plan.   

I am anxious again with all of this because I have never had an abnormal blood result and even my GP who saw the latest blood results feels there is nothing wrong. But the hematologists want to investigate this micromet. Has anyone else had this problem ?  Because of this delay with my BC I have been told to start the Tamoxifen tomorrow, even though treatment hasn't begun with radiation. Very confused at this point, but I will do as I am told. 

Best wishes to all. Ronnie xx

 

10 Replies

  • ronnie61's avatar
    ronnie61
    Member
    12 years ago

    Hi Christine, the real plan is hopefully only 2 weeks away now so it will be a relief to know finally what treatment I will need to have on this journey of mine. My surgery was last month but it feels like it was alot longer so in the 4 weeks since surgery I must say my doctors are being very thorough, and I am happy for that. Thank you so much for your good wishes, it's very much appreciated. Wishing you a happy Easter and good health always. 

    Take care

    Ronnie xx

  • Christine_Marie's avatar
    Christine_Marie
    Member
    12 years ago
    I know it's hard not to worry & the waiting game is the hardest thing as we all know, but once you know what the real plan is you will feel much better & it will be finished before you know it, I have now been on this BC journey 6 1/2 months & I'm surprised at how fast this time has gone by...I'm glad your team are being thorough & looking after you well...good luck with all your test results & here's wishing you a happy Easter:) take care Christine :) xox
  • ronnie61's avatar
    ronnie61
    Member
    12 years ago

    Hi Anna, I fully support getting a second or even third opinion if necessary. I think we all  should if we have any doubts at all about a doctor or maybe just a vibe that we might have. Sometimes people feel embarassed or uncomfortable seeking another opinion but personally I don't think the doctors mind. In fact my surgeon said that they have no problem with it at all. At the moment because I am having to see afew different specialists I feel that they are looking after me very well.  

    Take care, 

    Ronnie xx

  • AnnaB's avatar
    AnnaB
    Member
    12 years ago

    Sounds like you are being well supported.  However, at anytime you would like another opinion it is perfectly reasonable to ask for one.  Your GP can refer you. When i wanted another opinion I asked chemo nurses, breast nurses anyone who stood still long enough to ask and got the name of other oncologists.  It was very reassuring as the 2nd opinion fully supported the recommended treatment plan.  If I hadn't got that second opinion I would have always wondered.

    Anna

  • ronnie61's avatar
    ronnie61
    Member
    12 years ago

    Thanks mona for your best wishes. The waiting is the worst part because all I want todo is get my treatment plan started and get on with it.  

    Wishing you a happy easter. 

    Ronnie xx

  • ronnie61's avatar
    ronnie61
    Member
    12 years ago

    Thanks Robyn, I just felt that I should be taking Tamoxifen after treatment finishes, but because I am having delays with other pathology blood tests at the moment my Oncologist wants me to have Tamoxifen now. Oh well, I will do that starting tomorrow. Not sure whether to take it either in the morning or evening.  Robyn, you are so right in that my medical team are being very thorough with all this and checking my bloods before my radiation treatment starts. It worries me ofcourse, but I am sure I will start treatment soon enough.  

    Wishing you a happy easter. 

    Take care

    Ronnie xx

     

  • ronnie61's avatar
    ronnie61
    Member
    12 years ago

    Thanks Marg, great that you have been able to go to work but look after yourself and don't over do things. All the tests that they wanted me todo finished today so I will get all the results in 2 weeks when I see the hematologist and Oncologist. I will start Tamoxifen tomorrow as I have been told todo and see how things progress from there. You never stop worrying especially when more invasive tests are performed but I know that I am in good hands and that I have a great medical team.   

    Enjoy the long weekend and rest. Wishing you a happy easter too.

    Take Care, 

    Ronnie xx

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    Tamoxifen blocks the effects of oestrogen on any breast cancer cells that may be in your body,so the sooner you start on it,probably the better.Because your BC was oestrogen positive ,like mine,it is important to take it.I think it's good that your people are being so thorough.Too often we hear of doctors that don't take things seriously enough.My oncologist is very thorough,and she has told me on more than one occasion,that it pays to be conservative,when it comes to BC.I take Tamoxifen,and I have no problem with it.I take it each evening,just before dinner,with a large glass of water.I think we always need to do as we are told by our doctors,as they are the ones that know the best.Have a good Easter ,and try not to worry.Cheers xox Robyn
  • margiemoo's avatar
    margiemoo
    Member
    12 years ago

    so much waiting - I feel for you. I guess the investigations are all to help you but just makes you worry more. Hope you hear soon what your treatment is so you can move forward with it all. 

    I have been to work the last couple of days - glad its the long weekend so I can have a break as I am coming to my down cycle where I will be very tired and need to be careful of not catching infection. Starting to feel tired. will enjoy the long weekend resting. 

     

    Keep well - let me know how you go. have a happy easter

     

    Marg xx

  • margiemoo's avatar
    margiemoo
    Member
    12 years ago

    so much waiting - I feel for you. I guess the investigations are all to help you but just makes you worry more. Hope you hear soon what your treatment is so you can move forward with it all. 

    I have been to work the last couple of days - glad its the long weekend so I can have a break as I am coming to my down cycle where I will be very tired and need to be careful of not catching infection. Starting to feel tired. will enjoy the long weekend resting. 

     

    Keep well - let me know how you go. have a happy easter

     

    Marg xx