20-30% recurrence risk?? For real?

kksmom3

I've heard in a couple of different places that eventually 20-30% of us go on to eventually metastasize. Doesn't that seem inordinately high? I know this includes stages 0? 1-3. It seems really high to me. What about all those low oncotpe scores? I wish these scores were broken down more by stage.......or maybe I really don't want to know.

I was given a low risk of recurrence. My tumor was 3mm, not even enough to get an oncotype score. Do I believe the number I was given? I want to. These numbers are scary.

Claire_in_Seattle

Hi.... Let me weigh in here as someone who did have close to this risk. You will notice that my diagnosis was IIB. So no, yours is less than 10%. Now you could land in the unlucky 10% but that is not how you should live your life.

I have lived mine as "cured until proven otherwise" and that has served me well over the past 10 years.

Relax and move forward with your life. Many more things to do than be paralyzed by the "what ifs". Right now, I am blissed out from a tomato-prawn pasta dish which was the result of needing a solution to the overripe tomatoes and fruit flies. This worked admirably.

Fortunately more for the days ahead.

Relax and count on many more glorious days in the future. BTW - the one thing that you can do at this point to improve your odds of staying cancer free is exercise. This is no joke, and fortunately is something all of us should be doing anyway, breast cancer or no breast cancer.

So get it in gear and lose the worry. Not to mention it's a lot more fun. - Claire

Beesie

The stat is that 20%-30% of those with early stage invasive breast cancer will eventually develop mets. That does not include Stage 0 (DCIS) but includes Stage I through to Stage IIIA - so it covers about 85% (I'm guessing but I'm sure I'm close) of people diagnosed with invasive breast cancer. Within this very large group, there are those with low Oncotype scores and indolent, non-aggressive cancers, who have a risk that is lower than the average, and there are those with high Oncotype scores and very aggressive cancers, who have a risk that is higher than the average.

The 20%-30% does not reflect your risk, it's just an average of everybody. Your pathology reflects your risk. With a node negative 3mm ER+/PR+ cancer, your risk will be very low - likely less than 10% (possibly well less than 10%), as Claire said. There is no reason to not believe that. Some generalized stat doesn't change anything about your diagnosis and your prognosis.

MountainMia

I'm glad to see this question come up now and then. It's a scary stat, and it's sometimes easier to remember than one's own, actual risk profile. So having the question and the answer, and also the encouragement offered by people like Claire, is always helpful to me for reframing.

My tumor was triple negative, so Oncotype wasn't an available resource for me. A tool I've used to look at my more specific risk is Predict. It works for hormone or HER2 positive tumors, too, but not for DCIS only.

https://breast.predict.nhs.uk/tool

It uses information including the tumor size in millimeters, nodes status, your age at diagnosis, what treatment, etc, and then provides risk stats for 5 year, 10 year, and 15 year survival. The results can be viewed with multiple formats, so you can see it in a way that makes sense to you.

With tnbc, no nodes involved, and my other stats, I have about a 79% chance of surviving 10 years. That includes death by cancer and by any other cause! Since I'm about to turn 60, I think that's not too bad. It's still sobering that I have a 13% risk of dying from cancer in that time. But I'll still choose Claire's way to assume I'm fine and going to live a long time. And I get my exercise and maintain a healthy weight, as she also recommends.

Anyway, take a look at Predict. I hope it will help settle your mind a bit.