How do I come to terms with risk of recurrence?

littlechicken

I just receive my oncotype score. It was 17. I Know that is considered low risk but am told it still means an 11% chance of distant recurrence. I know the odds are in my favor, but 11% feels so scary. Do you ever get used to living under a dark cloud?

lisa137

The way I see it is, if you look at the high percentage of people who get some sort of cancer in their lifetimes, we were *always* living with that risk, so really we're no worse off than we were before. We just didn't see it as living under a dark cloud until it happened to us and became "real" rather than that awful thing that happens to other people but not us. The difference is that now we have been given a new opportunity to really do things to try and keep ourselves healthy, we know more acutely than we did before that we need to listen to our own bodies and head for a doctor if something is "off," and we know that life really is precious and needs to be lived to the fullest each and every day. 

Nan54

I keep hoping that it will get better with time - that the fear won't be front of mind all the time, that every ache and pain won't scream cancer to me, that I will feel more and more like the "old" me. Afterall, I kind of liked that confident girl that never considered for a minute that she wouldn't live to a ripe old age! But, I guess this new me does appreciate the little things more. And I do try to take better care of myself now, hoping that it will give me an edge. One day at a time and hopefully those days will add up and the fear will be a memory!

Moderators

littlechicken,

As lisa137 suggests, it may make you feel better to do what you can do to help lower your risk. There's some great advice in the main Breastcancer.org site's section on Lower Your Risk, including the Risk Factors you can and can't control with tips on helping to manage those factors. Some people also find the Organic Living section and Think Pink Live Green column helpful, for tips to help manage environmental toxins and eat healthy.

Obviously, nothing is a guarantee, but taking some action may help you keep a better peace of mind...

We hope this helps!

--The Mods

NancyHB

That's the question, isn't it - how so we move on and live our lives without worry and dread?  My score was 42 - I'm somewhere between 23% and 28% - but really, no one knows.  Conversely, I have a 72% - 77% chance that it won't return!  I think Lisa makes some really good points - this experience makes us more aware of the mortality we already have.  It's been two years post-tx for me and I'm still dating NED - and a therapist because sometimes I just need a little extra help.  I keep one thought in my mind - today is today. And I'm here, and that's good. Take it one day, one moment at a time if need be.  It gets better - maybe not easier, but we start to make peace with this new path in our lives.  Hugs to you

littlechicken

Thanks ladies. I am starting to focus on diet and prevention that I can control but already feel better just venting to gals who understand. 

momand2kids

So, I am 5.5 years out--- per my oncotype I have a 7% risk of distant recurrence.... so at this point, I really don't think about it... and I do think that subsides with time..... there are so many things to worry about related to health and aging..... I just try to be as healthy as possible and live as much in the present as I can...... it really does fade.... just takes time.....

edwards750

Littlechicken- my BC group talked about this very thing at our monthly meeting a few days ago. Our guest speaker was a radiologist with the Women's Health Center. The jest of what she said was time helps. We know there are no guarantees. The thing is once you are branded with the C word every ache and pain is a concern. That's what the fear factor does to us. Having said that she did say the Oncotype test was a good barometer. Their findings/reports have proved to be very accurate. I had the test done and my score was 11 with a recurrence rate of 8%. She said I could feel optimistic from such a low score. I know it doesn't guarantee it won't recur but I am less afraid because of it. I also take Tamoxifen which helps as well. I just try to keep the faith as best I can. Diane 

farmerlucy

Time really does help. Staying busy helps also. I think about it every day but it doesn't consume me like it did at first.  Also I think taking Effexor is a good thing for me, not only does it help with hot flashes it evens out my moods. and being perimenopausal I need help with that. Exercise helps me put things into perspective also. This is something we all have to work through. As my friend Ziggypop said, (and I paraphrase) if I worry about it now and it never happens I will have put myself through all that for nothing. If it does happen I would have wasted all that precious time worrying.

Each day, week and month will get a little easier.

HollyHope

Lisa - I wish I could like your post!  That is a GREAT way to view this. :-)  Thank you!!!  My oncotype score is 51 and that's what makes me so much.  My MO said that with the chemo I'm doing, I'll bring my risk from 34% -31% to between 9%-6%.  I have to keep that in my mind!! You all made very good points.

TarheelMichelle

Gals, those are just numbers, and if clinging to a number makes you feel stronger, hold on for dear life. I held my breath until the 3-year mark, that was my good luck charm, because that's when statistically my chances for a recurrence diminished (I was told). I was so happy and finally exhaled. And 6 months later, my Stage I, which had become a faded memory, was now metastatic cancer, in my bones and lungs and lymph nodes. 

It WASN'T the end of my world. I'm still here. I'm happier than I've ever been in my life. 

Numbers don't make us invincible. 

If you hope for the best and expect the worst, you won't be blindsided. Expect the recurrence. Take the best care of yourself, so when the recurrence is detected, your chance of controlling it is high because you are healthy and educated. If you remain free of cancer symptoms, then every day becomes a celebration. Much better in my opinion than pronouncing one's self "cancer free" then collapsing into a heap, shocked, when cancer returns. 

Find your strength in yourself, not in numbers. Statistically I should have beaten cancer. There's less stress for me with metastatic cancer, because I'm not worrying about what will happen. It's already happened. I'm alive and looking forward to each day. 

Best of health to all of you, sisters. 

HollyHope

I love your outlook and spirit TarheelMichelle - thank you so much for posting your story.  We are all in this together and this site has already helped me so very much.  Did you do chemo after your 2008 dx?  Hugs!!

Holly

TarheelMichelle

Thanks for saying that, Holly. This site has lifted my hopes and spirits so much. No, no chemo for me. My hormone-positive tumors are responding to anti-hormonal meds for now, so chemo isn't best for me, my doctors say. Others doctors recommended chemo, but my oncologists have not, and I trust their judgment. 

HollyHope

I'm so glad to hear that you have good doctors who you trust!  I feel the same about mine and think that's so important.