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Delos's avatar
Delos
Member
7 years ago

3 types of cancer, how do I not live in fear?

I had Hodgkin's Lymphoma 23 years ago.  Was successfully treated with radiation therapy +surgery.  10years later they confirmed I had what is now considered an overdose of radiation (standard amount at the time).  It caused a chronic thyroid condition,  and receding gums,  half my teeth fell out... healthy teeth :'( .  21 years after the radiation,  I was diagnosed with invasive breast cancer and Padgets disease, both diseases  in both breasts and both nipples, caused by the radiation therapy.  (they NO LONGER administer such large doses,  they are more educated in radiation therapy now).   Chemo,  full mastectomy,  and tram flap reconstruction later,  now on tamoxifen.   I feel no anger that the radiation has had such lasting effects,  I have lived,  loved,  become a parent and for the most part I have been healthy for decades.  The doctors saved my life.  But I fear recurrence, and mostly I fear more long term complications.  I had the least amount of chemo possible and no more radiation as they now fear my heart may not stand too much more cancer treatments. I fear leukemia etc as my life has proven you CAN get secondary cancers from treatment.  I live in limbo.  If I have thrush... the docs send me for an internal ultrasound,  if I have constipation...they order a colonoscopy, their caution keeps me in this world of fear. 
 I try not to be scared,  but it is the first thing that enters my head every morning when I wake.  
  • @Delos It's very sobering to hear from someone who has had the misfortune to be the exception that gets the really nasty repercussions from treatment. As you say, there is no point in being angry, but it is not surprising that you've lost your confidence.

    Im not in your situation but I've had recurrent breast cancer, so understand that feeling that it won't go away and leave you alone. I struggle with it, then have good days, then bad days. The tests thing is intersting, isn't it ?The things you are concerned about personally are often dismissed, but there seems to be a bizarre enthusiasm for shoving tubes and cameras where you really don't want them.

    Many of us struggle with side effects and the constant worry things will get worse. That doesn't help, I know, but please know you are not alone. Mxx
  • No worries Delos. I meant that a psychologist might be able to give you strategies to manage your fear. All the best. K xox
  • Kmakm 
    I do not think that there are many councillers who have had two cancers caused by the treatment for another,  I really think it's only fellow survivors who could possibly understand the day to day fear of having that history. 
    This is why I am reaching out through this site.  
  • I don't know what to say except that my thoughts are with you and I'm glad your doctor is taking care of you.
  • @Delos 
    Don't know what to say except we are here to help you through this!  Can't imagine for one minute how you feel!  The fear that you mention, living in limbo...….it was good to read that your Drs are being very careful and ordering tests to head off anything else and to put your at ease!  Goodness it has been a long haul for you.

    Not sure how long you have been part of the network and if you have taken advantage of the resources available.
    Our @SoldierCrab has put this list together - I hope it helps you to understand where you are at and to get resources to help you

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

     

     

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

     

    This link you can click on the type that matches your diagnosis and hopefully gives you a better understanding and helps with questions or to formulate questions for your next visit

    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    Take care

  • Oh you poor thing Delos! I'm so sorry you have to live like this. Have you had some counselling? Maybe talking out your fears would help manage them. K xox