This is so hard!

Hi lmb5,

People can say the rudest things and I honestly don't think they realize what they're doing. My mom had told me that my brother had been really upset over my diagnosis. The first time I saw him, he told me that he wasn't upset for me, just for my husband and sons.What? About worry, I think we all have that in the back of our mind. I try to think of it as my Doc does. She said that breast cancer is curable. It's just at this time they have no way of being able to tell which women are cured. And you know, that's true. Many women, especially early stage will never have a recurrence in they're lifetime. We can't dwell on what we can't control. We just have to live each day to the fullest, and I think BC makes us more aware of the fact that each day is a gift. It helped me to realize what is truly important in life.

(((((HUGS)))))

Susie 

jmb, of course you are scared.  Of course you worry about this happening again.  Your diagnosis is still so fresh, you are still in treatment.  You are at the time when your fears will naturally be the strongest.  But chances are good that you won't always feel this way.

I was diagnosed with DCIS with a microinvasion.  Even though my nodes were checked and they were clear, the microinvasion means that I have the chance of mets (unlike those of you with pure DCIS, who do not have this risk).  Only a tiny tiny chance, but it's there.  For the first year or so after my diagnosis, with every ache and pain anywhere in my body, I thought I had mets.  OMG, I have a headache.  It's brain mets!  OMG, I have a pain in my side. It bone mets! (Never mind the lifting that I'd done the day before!)  As my mind was having these scary thoughts, I knew rationally that the thoughts were illogical, but it didn't stop the thoughts from coming.  So I just kept reminding myself to ignore those thoughts, to just push through them.  And after a while - maybe a year or so - when I had a headache, it was just a headache.  When I had a pain in my side, I remembered what I'd done the day before to cause it. As for breast cancer fears, that took longer.  It probably was about 2 to 2 1/2 years before my fear went back to my pre-diagnosis level.  And then, to my complete surprise, I realized that my fear was actually less than it had been pre-diagnosis. Here's why: I now know what my risk level is - and it's lower than I had thought before.  I know that I get the best screening possible, so if I am diagnosed again, it's likely to be caught early.  And I know what to expect if I am diagnosed again - I made it through this once, I can do it again.  So I worry less now that I ever did before.  I'm not saying that this will be true for you too, but you really do have to give it time.  You can't judge your long term feelings by how you feel today.

As for your future risk, what you said about the chances of recurrence being higher as you get older is simply not true.  Recurrence risk is greatest in the first 3 years.  It's possible that you could have a recurrence 10 years or even 20 years after the original diagnosis, but the chances of this happening are very very low.  Let me explain.  If you have a 10% recurrence risk after your treatments, 5% of this risk might happen within the first 3 years.  This means that after 3 years, if you have not already had a recurrence, your recurrence risk would be down to 5%.  Another 2% of your recurrence risk might occur over the next 2 years.  So after 5 years, 7% of your 10% risk would have passed, leaving only a 3% risk for the next 15 - 20 years. (Note that my numbers are examples only - your risk level after treatment might be higher or lower - your oncologist should be able to tell you what it is.)  What's important to understand is that as times goes by, you leave risk behind.  The way this was explained to me is that "you can't have a car accident tomorrow on the road that you travelled yesterday".  If you had a 2% recurrence risk last year and you didn't have a recurrence, that risk is gone. 

The same concept of leaving risk behind applies when you consider your risk to get a new breast cancer (not a recurrence but a new primary).  For all women, our risk to get BC increases as we age.  But as we age, we have fewer years left to live, so while our annual risk goes up, our total risk goes down.  Here's how this works.  The average 40 year old women has:

• a 1.44% chance of getting breast cancer by the time she is 50
• a 2.31% chance of getting BC between the ages of 50 and 60
• a 3.08% chance of getting BC between the ages of 60 and 70
• a 5.19% chance of getting BC between the ages of 70 and 90. 

So, over her lifetime to age 90, the average 40 year old has a 12.02% risk of getting breast cancer.  And it's clear that as she ages, her annual risk goes up. While in her 40s, her annual risk to get BC is only 0.144%.  By the time she is in her 60s, her annual risk is 0.308%.

But, once this 40 year old reaches 60, although her annual risk is higher, her lifetime risk is actually lower.  With only 30 years left till she reaches 90, her remaining lifetime risk is now 8.27%.  So as she has aged, she's left risk behind.  This is exactly what will happen to you - and to all of us - with our recurrence risk and with our risk to get a new BC.  Although our risk may be higher than that of the average woman, just like everyone else, as each year passes, our total risk goes down.  When I was diagnosed 4 years ago, my risk to get BC again was estimated by my oncologist to be about 22%.  Today, it's 20%.  In another 5 years, it will be less than 18%. 

Sorry for all the numbers. - I do tend to get caught up with the numbers.  But I hope that what I explained makes sense and I hope it's reassuring to you.  You are at the worst time now - your fears are highest and your risk level (recurrence and/or new primary) is the highest it will ever be.  Over time, your risk level will go down and hopefully your fears will ease too.