How do you know if you are "high risk" for recurrence?

Hammie28 · March 2016

Curious about other's experiences. How did you determine that you were high risk for a recurrence? Did your medical team tell you? Are you concerned based on your own research and conclusions? Are you doing anything specific after the conclusion of treatment to reduce risk? Thank you.

edwards750 · April 2016

Hammie - I think it's a combination of doctors DX, tests, path reports, type of cancer, stage, aggressive or non-aggressive tumor, etc all are factors that can determine whether you are at a high risk for recurrence.

I am Stage 1a, Grade 1 IDC. I had a lumpectomy and 33 Rads treatments. I take Tamoxifen and this year I will be 5 years out.

I had the Oncotype test. It is a test Oncologists like patients to have done to help them determine treatment. Genomic Labs performs the tests. Their report concludes how likely you will have a recurrence by a percentage based on their findings. Mine was 8%. My score was 11. Obviously no guarantees but the lower the score the better.

As for doing anything to help prevent a recurrence I do everything in moderation. I don't abstain from drinking or sugar which are supposedly triggers. I just don't partake every day.

My sister and I got BC more than likely because our mother had it. Neither of us are health nuts but we weren't textbook cases to get it either. There are women who do everything right and still get the unlucky draw and vice versa.

There are also women on this forum that do all kinds of things in their minds to help prevent a recurrence. That's their call. You have to do what's best for you in that regard.

Finally try not to stress about it or agonize about what might happen. It will drive you crazy.

Diane

Anonymous · April 2016

My MO periodically reminds me I'm "high risk" (as if I'd forget!). I think it's my # of nodes + since I was grade 1, stage II, and the ILC I had was relatively small for that type of BC.

dtad · April 2016

Hammie28....there are many factors which include stage, grade, size of tumor, hormone receptors,age, etc. That being said IMO recurrence is somewhat of a crap shoot. There are women on this forum who were considered low risk and had a recurrence and vise versa. As far as doing what you can to prevent an occurrence besides the conventional treatments I think excercise and weight loss are very important. I've eliminated sugar and have lost 22 pounds since my diagnosis. I also take supplements. I think keeping your blood sugars in check are key too. I would be happy to share my regimen with you if you want to private message me. FYI they are somewhat unconventional and are not well received on the general forum. Good luck to you and keep us posted....

Hammie28 · May 2016

Thank you for the input. I would certainly imagine that I am high risk as well. But my MO cautiously avoids the topic. At diagnosis both the MO and the surgeon mentioned that I would need extensive treatment to reduce my recurrence rate. Anytime I tried to drill down on exactly what that meant, I was always told to wait until I completed chemo and had pathology back after surgery. Now that I'm passed that stage, I still have never gotten a straight answer. It seems like others are given percentages. I've never been told anything like that.

edwards750 · May 2016

Good grief Hammie make them tell you now. You have the Path report and completed your treatments. I see that your tumor is Grade 3. That may be their concern. I have IDC too - Stage 1a - Grade 1. I had a lumpectomy and 33 radiation treatments and take Tamoxifen. My 5 years is up in August.

Regardless you have the right to know. I would badger them until they told me.

Diane

shorfi · May 2016

Hammie...I was told that we are ALL high-risk because we had breast cancer in the first place. Also, I never knew I was at high-risk until I diagnosed with a new primary in the opposite breast. My BS NEVER told me about being high-risk. I should have known something because I would have breast MRIs followed 6 months later with a mammogram (the first time I was diagnosed). I thought I was done.

Just the fact that we are women is the risk.

Lily55 · May 2016

Well I was reminded of it at every appointment until the last one (4 years out) when all of a sudden he said don´t think of cáncer.........!!! the truth is none of us actually know as there is no rhyme or reason to who recurs and who doesn´t.............we all know people with great prognoses who are no longer here and others given the serious faces who are thriving...............live for today is all we can do......

wintersocks · May 2016

I have been told that I am 'a future risk of chest wall recurrence' I think that's just a nicer way of saying high risk.

Valstim52 · May 2016

Bottom line, they really don't know. They can tell you factors based on past patients, tests etc, but no one really knows if cancer will come back, progress etc I think some MO's refrain because each person is different. Otherwise, think of this? If they knew how and who will progress then they could predict who will get breast cancer. And having a percentage does what? If you think you need it for your life and peace of mind then definitely get them to tell you what they think based on whatever factors of your recurrence percentage.

Maybe my perspective is different because my diagnosis going in was not so good. IBC, lymph node involvement, stage IIIB and TN. I'm just glad it has not killed me yet during treatment. Less known coming back or spreading. My MO has told me from the beginning if I can get past 3 years, then I'm on the way to having a complete remission.

I say this, and this is only my little opinion, but I wasted years when I had BC 24 years ago, worrying about it coming back, spreading etc. Would I see my kids grow up, graduate, marry.(they were 3,4 and 6 at the time). I've seen them all grow up, marry, go to college.

Precious time worrying about something that basically I had no control over. I did keep my weight down, eliminate sugar, take a boatload of supplements, see a nature path doctor, worked out all these years, and still got one of the most aggressive cancers ever, in the other breast. And it did not show up on a mammogram and ultra sound 9 months previously.

So for me this time, I've moved my mind elsewhere. I am scheduled for surgery 5/24, then meet with my MO 6/13 to discuss my path report etc. I really don't care what's in it because it won't change my next step which is 33 radiation treatments.

Oh and for the record I was told 24 years ago I had a 50/50 chance of it spreading. And a 70% chance of it recurring again in that breast. Can't even recall now what tests they based this on, and I went to a very large cancer center in Chicago. So much for percentages. So they did a tissue sparing masectomy and I had radiation.

We were wrecked and stunned for years after hearing those numbers. I was only 32 at the time.

How do you know if you are "high risk" for recurrence?

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