Stage 2-recurrance percentage % risk?

ThinkingPositive

I did not have the oncotype test...MO said that based on my Ki 67 (28%), he was pretty sure that my oncotype score would come back high, Please he said it would take 3 weeks to get results. So I went ahead with the chemo. Now I am reading that the oncotype score gives you percentages of recurrence? Does everyone know what their percentages are and if you didn't have oncotype how do you find out? I know MO gave me some percentages, but it was vague.. Just wondering if you all could share if you are stage 2. Or how to go about finding out?? Thanks.

moni731

Hi ThinkingPositive, I also did not have the onco-type test or get Ki67 results. I am triple + and my MO threw it all at me. Unfortunately, I had majors problems with chemo and Herceptin, no rads and no AI's. Was lucky to live through the attempt at chemo and Herceptin, wasn't going further. Had lump and pCR with very little chemo! My MO gave me 30% recurrence rate. Not good, but my family was given worse odds that I would live through some of the complications. Everything I have read brings me to the conclusion that it's a crap shoot whether it will return or not. So many in the stage IV posts did it all and still recurred. I try not to dwell on it. I have a MO appt on 3/12 for raising Tm's. We'll see.

What were your stats? Are you doing neoadjuvant chemo?

ThinkingPositive

I was diagnosed with DCIS with a biopsy after mamo and ultrasound back in Sept. Then an MRI picked up additional lesions which led me to having a mastectomy of my left breast. Pathology came back as Stage 2A,, 11mm invasive ductal carcinoma, grade 3, Ki 67 at 28%, one node positive and 16 negative. ER/PR positive, HER2 negative. Did chemo, 4 treatments of TC. Gray zone for rads, but radiation oncologist said that I had a very good surgery with 10 mm clean margins. So she was not recommending that I needed to do radiation, but could if I wanted. Opted out since I think I have chest lymphedema, my tissue expander feels like it keeps swelling so PT said it could be, don't think that would mix well with radiation, plus she told me that since I had some many other nodes negative, that was a good thing. So i don't remember the percentages / risks that the oncologist discussed...so I was trying to see if others could share what they have been told.

edwards750

Thinking Positive - I did have the Oncotype test. My recurrence rate is 8%. I have IDC, Stage 2, Grade 1. I had a lumpectomy and 33 rads treatments. Currently taking Tamoxifen. 3 1/2 years out.

Despite my score which was 11, I know there are no guarantees. BC is a crap shoot. I don't know how many Stage IV ladies had low scores or early stage BC that metastasized.

Oncologists don't know why some of us drew the unlucky card and got BC but it is what it is. I am guardingly optimistic about my chances.

Good luck!

Diane

moni731

ThinkingPositive, It sounds like your odds of recurrence are pretty low. There are several online prognosticators that you could try,Adjuvant online being one. I would ask the Mo to tell you what they thing again. Hopefully others will be along soon. i must say though, it gets better. I even have days it never enters my mind! Hang in there.

coraleliz

Thinkingpositive- There is a website

http://www.lifemath.net/cancer/breastcancer/outcom...

You can plug in your numbers & it will give you percentages.

There is also a website adjuvantonline.com that my MO used & gave me a printout from. For this website you need to say you're a healthcare professional in order to gain access. I'm a nurse so I didn't have to lie/fib. Many others have.

For my cancer, the results were similar on both sites.

jenlee

Coraleliz,

I'm a glass is half empty, scared and anxious person -- especially since BC. So I was afraid to try this, and going to recommend that others don't! But couldn't resist and despite the fact that I had decent sized tumor and high ki67, my stats on this link were quite good. So I'm going to consider that and think positively for a change until something else scares me. I'll take any good news I can get.

Thank you

SpecialK

Just wanted to add a couple of things - Oncotype Dx is for ER+, Her2- only, so if you are Her2+ the test will not be offered.  Just recently are some MO using it for 1-3 positive nodes although the original trials were for node negative, so it is a bit unclear whether the numbers are as indicative for node positive patients.  Your recurrence score assumes 5 years of hormonal therapy.  If you don't take Tamoxifen or an AI, your score increases - I believe that it roughly doubles, based on other BCO member input.

If you are Her2+ there is another calculator called PREDICT that includes data on treatment with Herceptin for Her2+, as cancermath does not factor that in.  This is a British site so enter your tumor size in mm, not cm (multiply cm x10 to get the mm), here is a link:

http://www.predict.nhs.uk/predict.html

 

 

Hopeful82014

Thanks for the link to PREDICT, SK. It's one I'd not seen before and I like its format. I don't know how carefully validated it is but would expect it to have been fairly carefully vetted.

SpecialK

hopeful - I also like to use the pictogram format for results when using the cancermath site, to me it is easier to read - you can select how you would like to see results, graph, pictogram, etc.  From what I understand the PREDICT tool is comparable to other calculators.  Many MO use Adjuvent Online but it is not available for direct patient access. Here is some info for PREDICT that may be helpful:

http://www.predict.nhs.uk/faqs.html

Hopeful82014

Many thanks, Kay. I hadn't explored the site beyond the nomogram previously. It's interesting to me that it was devised using women from both England and BC; to me that's potentially more useful than information derived from just one population.

ThinkingPositive

I tired the cancermath but had a difficult time out how to read it. Not good with stuff like this.

farmerjo

Thinkingpositive...my Ki 67 was 29.1. My Oncotype was 19. As a rule, under 18 = no chemo. However, because my ER was so high, he said hormonal therapy alone is good enough. 

So with an Oncotype of 19, my 10 year recurrence risk is 12%. With chemo it would have been around 10%. You have the risk\benefit ratio. Chemo wasn't worth it. 

farmerjo

I will add that the Oncotype score is assuming you will be taking hormonal therapy.

coraleliz

What I found was that the Predict calculator was even more favorable for my numbers than either adjuvantonline or cancermath. I agree with SpecialK about the pictogram on cancermath. The 100 faces depicting the outcome makes it easier to see the benefit.

ThinkingPositive

Jilly59

Seems like your stats are pretty much the same as mine with the exception that I have one positive node. I wonder how that changes things. I did not have oncotype..but ER was 98%. MO said he knew my oncotype would come back high so there would be no reason to do it and wait the 3 weeks. Wish I had done it.

farmerjo

Thinkingpositive... Lets say you would have received a low oncotype score - think of the chemo as extra insurance. As I said, I am on the low end of intermediate and they said no chemo. Although I'm happy about that, it's also unsettling at the same time. 

TeriMP

hi ladies, does anyone know the adjuvant online link. When I google it the link always seems to be broken.

I too did not get my Oncotype don't as my MO said because of my age. And high grade tumor it would most likely come back high and she didn't want to delay treatment.

Teri

SpecialK

Teri - I believe adjuvant online can only be accessed by medical professionals

6doggies

This is my first post and I was wondering if anyone had a high Oncotype score? I'm 47 and mine came back at 32, which is high. I was diagnosed with IDC on November 18, 2014, had lumpectomy on December 10 and started Chemo on January 23, 2015. My tumor was 1.7 with 2 out of 5 positive nodes, puts me at 2A.  Currently doing Chemo, then radiation, then hormone therapy, worried about reoccurrence.

Claire_in_Seattle

Thinking Positive....I highly suspect that with Grade 3 cells, chemo was in the cards anyway. Why I did not have Oncotype done, but this was more than 5 years ago. I found chemo not fun, but got through just fine. 5 years later, I am thrilled to be here. This, unlike my childhood friend who is nearing the end with kidney cancer. She would have jumped at the chance to do chemo and did try a clinical trial. But nothing slowed things down.

Good luck with everything. - Claire

ThinkingPositive

Thanks Claire in Seattle... your pathology looks almost like mine... I had TC vs. ACT, was very worried about heart problems with ACT..since I have extremely high blood pressure and a few other minor things going on. Glad to see you doing fine..are you on any hormonal treatment?

coraleliz

The Adjuvantonline link doesn't work for me. It use to. Perhaps they cracked down on patients claiming to be medical professionals. For me the results were quite similar to cancermath

TeriMP

Hi Rose,

The only one I can answer for you is that Taxotere and Cytoxin are 2nd generation.

Teri

Claire_in_Seattle

Thinking Positive....I was fortunate to be extremely fit and healthy otherwise. So I was able to do AC + T. In fact, I was in a study where I got six rounds of each, not 4. Yes, I am down to 2 more months of anastrazole. More of a bother than anything else. I do have a bit of achiness, but nothing else that I notice. I feel and look great, although glad it's Friday.

I will mention that once you are able to, exercise is the best thing you can do for yourself. It will speed your recovery, and make you look and feel better. All you really need is a pair of comfortable shoes. I don't do gyms....but I did walk 2 miles last night when I got home, past a frog serenade and cherry trees in bloom with the most amazing scent. The stars were out and I got to see the Milky Way.

I used the post chemo time to grow into a better hairstyle. I now have someone professional cut it....major life upgrade.

Good luck with everything. You will feel better soon and summer is coming. Just remember to put sunscreen on your ears and get out there. - Claire

SpecialK

rose - a Ki67% above 20% is considered high, meaning that the cells are dividing more rapidly.  It is a high/low result with 20 being the cutoff.  That is generally good from a chemo perspective, as it seems to work better on more rapidly dividing cells, however, rapidly dividing equates to aggressiveness.  P53 is more complicated because it is tied to breast cancer sub-type - but because it functions normally as a tumor suppressor, you could probably generalize that if you have a mutated P53 it may indicate an increased level of aggressiveness, since the gene's ability to regulate cancer cells is impacted by the mutation.

SpecialK

rose - I would assume - have you asked your MO what his/her interpretation is?

linnyhopp

I should also probably know this, but can anyone tell me what "generation" of drugs carboplatin, taxatere and herceptin might be?

SpecialK

linny - Herceptin doesn't factor into the generation because it is not a chemo agent - it is a monoclonal antibody targeted therapy. Taxotere, with the addition a platinum agent like Carboplatin, is third generation. The drug combo and number of cycles help determine which generation, as Taxotere and Cytoxan for four cycles is second generation even though it includes the same taxane

shelleym1

I am Stage 2A (no nodes) with an Oncotype score of 15. My recurrence risk is 10% with five years of tamoxifen. Chemo would have knocked about 1-2% off of that so chemo was not recommended. As someone else said I am relieved but it is a bit unsettling not to have chemo.

SpecialK

rose - Lol!  I would need to go to medical school first!