Oncologist Response to Fear of Recurrence

Sister
Sister Member Posts: 4,961
edited November 2018 in Health and wellbeing
I went to my checkup with my oncologist on Thursday and I thought it worth sharing.  I like my onc and trust him to be doing the best for me but I know that to a large extent, that's on faith and recommendations from other health professionals.  He's a fairly quiet and reserved man who I have come to know more over the last 11 months and in all of my dealings with him, he has shown concern and care.  

Some of you might remember that a few weeks ago I had my treatment review with my surgeon (another one I really trust) and he dropped a bombshell on me that my cancer was pleomorphic and that it quite possibly had only been there for 12 months, maybe up to 2 years, prior to diagnosis.  Now, this may have been told to me early on and I just didn't take it in.  I still didn't really take it in when the surgeon said it recently but it has played on my mind since and of course, I looked at Google for pleomorphic lobular and didn't like what I read.

Anyway to get to the point, this, in my words, is the gist of what my onc told me when I asked questions on Thursday:

Firstly, they can only estimate how long the cancer has been there - there is no test that works backwards. My prognosis is good and the numbers are on my side against a recurrence.  With Letrozole, it is even better.  Obviously, these are statistics and while statistics tell a story, they don't help the individual.  He said that he knew for me, there is only "cancer" or "NED".  But at this stage, I have to believe in NED until it is shown to be otherwise.  Because living, thinking every twinge or pain is a recurrence, is no way to live.  And between him and my surgeon, they will be monitoring me closely.  He also said that he knew that trying to live without anxiety of recurrence wasn't an easy thing to do but that it was really important for my mental health to try.  His final words on the topic were that the best thing I could do to help prevent a recurrence was exercise and fitness but at this stage I had done everything I could do and that now it was time to try to get back to living.

Before anyone gets upset with this, if I haven't imparted the tone of the discussion properly, that will be purely my fault.  At no time was my onc suggesting that I was being foolish or that my feelings were unfounded.  And these are my words because my memory is terrible (something he is aware of and understands!).  This was all said in both a very professional and considerate fashion.

I hope this helps someone who has gone through treatment and is trying to deal with the anxieties of living afterwards.  While I know that I won't stop worrying immediately, I do hope it lessens.  I was dealing with a pretty dark whirlwind of emotions prior to my appointment and what he said has certainly calmed that significantly.  I have to try to live with what has happened to me.  I don't know how much time I will have - 1 year or 40 years - no-one does, BC or not.  But I do know that I don't want to live them under a constant cloud of anxiety.
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Comments

  • Sister
    Sister Member Posts: 4,961
    Librarian's are go!
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    Oh, to be finished treatment. I had to have another blood test this morning, one week after the last one. It is easy to understand why people say "enough is enough". Just leave my poor arm alone!
  • kmakm
    kmakm Member Posts: 7,974
    Beautifully written @Sister. Thank you.
  • mum2jj
    mum2jj Member Posts: 4,315
    Wise words. Thank you for sharing 
    Paula xx
  • arpie
    arpie Member Posts: 8,020
    Great write up @Sister.     Your Onc sounds a wonderful man.

    "Yesterday is History, Tomorrow is a Mystery, Today is a Gift - That's why it is called the Present''

    Someone told me once:   Live every day as if it was your last .... One day, you'll be right!  ;) 
  • Jrcn
    Jrcn Member Posts: 16
    Thank you all for sharing your stories, they have helped me today to not feel alone xx

  • kmakm
    kmakm Member Posts: 7,974
    Nevet alone here @Jrcn. K xox
  • Jrcn
    Jrcn Member Posts: 16
    Thanks @kmakm xx
  • melclarity
    melclarity Member Posts: 3,524
    @Sister well this all sounded extremely reminiscent of what my Oncologist told me at the end of Treatment in 2015. Though I'm 3 years on, he's told me clearly he's not worried of me getting BC again but a secondary...gee thanks :/ though he said diet and exercise are great to feel better but won't change an outcome of genetics. He said to me exactly the same thing, there is NED or you have it, there's no test to show before it happens, that's why they don't do constant tests. Remembering there are hundreds upon hundreds of mutations that have not been identified in BC at this point. So I bounce in every 6 months because he wont let me go to a year LOL, doing great and just tell him all good and see you later. I don't worry about it anymore, why? can't change what will be, I tried with a passion after the 1st time and I never dreamed I'd get it again. It's a beast...but ladies just live, live, live and enjoy in whatever capacity you choose, I certainly do :) It's been a really long 7yrs but I focus less on looking back and more moving forward. Hugs xo