Question about the "intermediate range" on OncotypeDX

beau

Hi Curly,

I know that it is such a tough decision, but, like you, i didn't want to be haunted by what if...Chemo is not fun, but it is doable. Just hope that you have some support on home front/ close friends to lean on when you need it. I found the chemo thread on this site really helpful. Also, I found it helpful to treat the psychological dimensions of this disease as well as the physical. If you need to sleep, if you are in physical pain, if you are depressed, please treat those symptoms like it is part of the diagnosis.

I just took whatever I needed when I needed it. I never worried about addiction; I just needed to function as best I could. Overtime. I reduced / cut out almost all the additional meds. My onc was great about working with me to keep me positive and active.

I hope that all goes well with you.

You will be in my thoughts in the coming months. Best, Beau

curly123

Wildrmura - I think if your biggest complaints now are the 10lbs and some joint pain, you are doing great!  I hope that's the worst of it for you and it is smooth sailing for you moving forward.

Beau - thank you.  It has been the worst year actually.  I have been separated for a year this month, only to find out this diagnosis and begin treatment.  All of us are guessing the stress of the separation contributed significantly to this.  I have a few good friends I lean on, but it is very hard.  My kids make me smile everyday - thank goodness for them.  But you are right - I need to keep the emotional side in check - not there yet.  I should probably talk more about that with the Dr.  How's life with you these days?

xo

curly

beau

Hi Curly,

Life is really good. I am thankful every day that I am still here I have 2 kids, age 12 and 14 both of whom are doing great. I am busy working part time and enjoy working out ( although not as much as i should). i did put on 10 pounds and have some stiffness from the AI pills ( I actually switched from Arimidex to Aromasin after a year and a half and that has lessened the arthritis). I am grateful for that little white pill because it helps ward off a recurrence.

It did take me longer than I excepted to get back to a reasonable energy level after chemo. Despite my initial disappointment ( had some anemia and neuropathy), i kept up yoga and some walking, gradually building back up my muscles and stamina. Please be kind to yourself and try not to pre- judge where you think you should be. Just try to accept. I struggled with this but finally got there.



My insurance covered nutritional and psychological counseling ( which I took at the same hospital where I got chemo) That, along with some anti- anxiety pills and pain pills, yoga and meditation, really helped.

I am sorry to hear about your marriage ending and then getting this diagnosis! That's hard. However, the doctors often say that cancer can be growing inside of you for years before it is big enough to see so don't dwell too much on how or why. Plenty of folks are dancing along in life, have done ever everything right with respect to working out and eating right, but they still end up with cancer.

I hope all goes smoothly with your treatment. Best wishes, Beau

Jazzygirl

Curly- I firmly believe stress triggers breast cancer. My sister and I both came through an 8 year process with our mother and her eldercare. The last year before our mother passed was especially difficult. Three months after our mom did pass, my sister was diagnosed with breast cancer. Two months later, I was diagnosed as well. Coincidence? I think not. We have no history of this in our family, yet came up with it basically at the same time after a very long and stressful period in our lives.

I spoke to someone where I had my rad treatment done about my story, and he said that many women who are diagnosed can look back and see a very high stress period in their life that preceeded their diagnosis. He said stress can cause things to turn on that otherwise would remain turned off. I think that was some very helpful insight from the ones who deal with this day in and day out in the medical field.

I am sorry about your seperation, but wishing you a successful treatment and better days ahead!

AllieM

Hello all! I'm new here and also have an intermediate grade IDC (27 oncotype score/17% recurrence rate).  I am going to see my MO tomorrow after putting him off for another two weeks so I could get a second opinion (also tomorrow). I will have to decide on chemo or not within the next couple of days since its already been 3 mos since surgery. My MO suggested TAC x6 and that seems a bit much compared to what I see on other people's posts for similar dx.  I had negative nodes and no LVI. He wants me to do a clinical trial and I'm wondering if that's why he suggesting the biggie. From what I've read it's the "A" part that's the most dangerous. I'm 51 and my kids are grown and I just don't know if the little bit of increased odds are worth the chemo problems. I also already have GERD (reflux) and chronic low back pain. Anyway, any ideas/comments would be appreciated.

Thanks,

Allie

rn4babies

I also had an Oncotype score of 27, negative nodes and no LVI.  3 MO's told me T/C x4 was the standard recommendation.  2 of these docs were at top notch cancer centers.  I was 48 at diagnoses.  I was not eligible for the Metformin clinical trial.  What are the stats of your tumor?

wildrumara

Im not an expert, but I would say that the adriamycin probably isn't indicated for someone of your age or nodal status.......I had TC x 6, which at the time (18 months ago) was a "trial" so to speak.....at least at my institution which is head of the NSABP.  I think now, they are only recommending TC x 4 to node negative women.     It will be interesting to see what the other MO suggests.......keep us posted!   Good luck to ya!

AllieM

Thanks y'all for replying. I thought my "stats" would appear at the bottom of my post like everyone elses. How do I make it do that? 

Anyway, I had a bilateral mastectomy on 1/15/13. 1.1 cm IDC on right, stage 1, grade II/prophylactic on left. No reconstruction. 3 nodes taken, all negative. ER+, PR+ on breast profile (but PR- on oncotype dx), Ki67 was 99% and P53 was high but can't remember the number (on breast profile) and that's the only reason I can figure I'm intermediate grade. I had the BMX just because I hoped to be done with it.

survivor11

My Oncotype test was 19/ 12% recurrence. My tumor was 1.1cm with no node involvement. I was 38 at time of diagnosis. Like a few of you I had 3 young children, all under the age of 10. My Onc said that chemo was really up to me. I like some of you wanted to throw everything including the kitchen sink at this monster so I endured TAC x4. It was not fun at all, and I had 2 severe reactions that landed me in the ICU for a week at a time, but I don't regret it. My feeling is that if it ever returns, I can be at peace that I did everything in my power to prevent it.

doxie

AllieM,

I had TC X 4 with an Onco of 30 and no nodes.  My PR was low like yours registering neg on the Onco range, with high ER.  Are you certain that your Ki67 is 99%?  That is extraordinarily high.  Mine was considered high at 40%.  My BS said he had seen it as high as 80.  I'd double check both the Ki67 and P53 numbers with your second opinion MO.  Since these indicate high proferation, I would think your Onco score would be much higher.  

AllieM

I'll have to go back and check on the Ki67 score. The difference may be that the breast prognostic profile was done on the initial core biopsy and the oncotype was done on tumor from the mastectomy. I don't know what the Ki67 was on the oncotype because they don't report that separately.

Off to work. I'll let y'all know what the doc says. Thanks for your help.

Loral

I'm 51 also, and my Onco score was 34, MO thought I should have chemo. Onco score 23% chance of recurrence, chemo would bring it down to 11% recurrence. I decided to only have lumpectomy and Tamoxifen for 10 years. I have no childeren, and I feel fine. I just hope my surgeon removed it all. You'll make the right decision when you feel you have all the information you need. It took me 9 weeks to decide what to do.

AllieM

Hi LorAll, (and everyone)

I wonder why your score was 34 and mine was 27 when your tumor was 1 cm smaller, I'm grade II and you are grade I?

I have read everything I can find and asked everyone I can think of and still don't really understand this - and I work in a hospital.

I had my second opinion yesterday and he said the TAC x6 recommended by my original MO was a bit much, and said TC x4 would be what he would recommend. He also said that chemo would just be a precaution and that if I decided to just do AI that would be a good decision also....that either decision would be the "right" one.  What?!!!     He did a printout and it showed that chemo would only increase my survival odds 3% over ten years. Hormone therapy added another 2%. Doesn't seem worth it to me even with the recurrence score of 27.

Ugh!! I have to make a decision!  Have been asking for divine intervention and he's still not talkin!

HealingDreams

My understanding about this is that the Oncotype DX results are unrelated to stage or grade, the results we see on the pathology report. Instead, the Oncotype DX measures a group of breast cancer genes to see how active they are.

Here is more information from the oncotypedx.com site: The result of the test is reported as a number between 0 and 100, known as the Recurrence Score^® result. A lower score means the cancer has a lower chance of returning, and a higher score means that there is a higher chance of the cancer returning. The score also provides patients and doctors with important information regarding the potential benefit of adding chemotherapy to hormonal therapy. A low score indicates that the patient will receive minimal benefit from chemotherapy, whereas a patient with a high score can have significant benefit from chemotherapy. Because everyone's body and tumor are unique, obtaining a Recurrence Score result helps make treatment decisions tailored to you.

wildrumara

@AllieM - Give it some time and clarity will come.  Best of luck to you.  Please keep us posted on what your decide. 

As far as the oncotype score, you could have a 4 mm tumor that has a higher oncotype score than a 3 cm tumor, believe it or not.  Its an amazing genetic profile of a tumor......

Jazzygirl

Hi ladies: as I understand it too, the oncotype score is unrelated to the stage of the tumor. I have read about a number of very early stage 1/small tumor cases where women have had high scores and ended up doing chemo. It is a more recent type of test they are using, but unfortunately, does not have a longer clinical history yet upon which to make concrete decisions such as with other tests like BRACA.

The grey area, where you and many of us fall, is the tough call. The clinical trials for the intermediate range are not completed yet, and no findings published. So it is mostly based on professional opinion of the MOs, and what you are wanting to do.

I found out I would only have a 3% improvement with doing chemo. My MO said "if you want to treat this aggressively and get yourself down into the signal digits for reoccurrence rate, you can consider chemo."  I did not see a 3% reduction as being worth going through chemo and the possible SEs. Your age, overall health and other factors really play into your own decision on this.

I begin Arimidex this weekend.

Tammy_M43

Chemo is a big decision and a very personal one.... No one knows the right answer, ask 3 different MOs and you might get 3 different answers!



I took my time to make a decision and, as Wildrumara says, if you take your time clarity will come... I think it is great that with cancer intruding on our lives we can take back some control in how it is treated.



Best wishes to all having to make the decision

IamNancy

My oncotype score was 25 - I was hoping it would have been a 3 or something so I'd have no decision to make but a 25 score, I had to chose.. I decided to go with the chemo because I want to do everything I can to never have this return again...My doctor was glad I decided to do chemo as he thought that was the right way for me.. I am halfway through 4 treatments- will begin radiation when chemo is completed.

JLow

My ONCO was 24 (16% reoccurence rate).  MO said it was entirely up to me which direction I wanted to go, but he recommended chemo.  The thing that concerned him was that my ER+ was 78 (he wanted it closer to 100) and my Ki67 was 53 (this was his biggest concern). Basically, he said to me if you feel that the surgery with radiation (I was high nuclear grade) and Tamoxfen would do the trick then go that route.  I said that I never wanted to look back with regret and say "I wish I would have, could have or should have."  My surgeon explained this to me:  I am at 16%; Tamoxifen would bring me to around 9% and chemo to 4-5%; so what number are you comfortable with?  I said 0% but that isn't an option for anyone so I want the lowest number I can get.  I am 45 with 2 teenagers.  For me it was a no brainer -- scary as hell; but still not even up for debate.  Give me the best chance possible to live to see my children marry and have kids of their own.

AllieM

I decided to go with the chemo. I got a second opinion and he said he suggests the chemo, but I could go either way - it's up to me. My numbers don't show any great improvement in prognosis with chemo or AI, but after researching the significance of a high Ki67, it scared me enough to think I'd better hit it with everything right off the bat just in case any of the ca wandered off unnoticed. I've gotta run but just wanted to let y'all know. I'll write more later.

IamNancy

I never heard of the Ki67 - what is it?

301724

Hi,

A number of folks have posted something similar to Curly's message: "My risk of distant recurrence with tamoxifen, rads and no chemo is 16%, which the chemo supposedly would reduce to 10%.  I am having a hard time believing in chemo for an improved 6% chance."

My Oncotype Ex score of 27 gave me similar info - with BMX and AI, risk of distant recurrence would be 15%. With chemo, it would drop to 10%. There's two ways to think about risk reduction. One is an absolute decrease of 5%, which as Curly noted, doesn't seem like a lot. The other is a relative decrease - so the decrease from 15% to 10% represents a relative decrease of 33%. That *is* a lot.

Either way, we as individuals have to choose what we're going to do. I found it helpful to run the numbers both ways.

curly123

I did come around to doing the chemo.  It was a huge internal battle, but in the end, I decided that if it did come back, i would  have a hard time wondering if it came back because I didn't do the chemo.  i have to beautiful little children to take care of and I am separated.  I need to do whatever I can to make sure I am here for them.

I start this week. Wish me luck.  I am scared.

curly

AllieM

Curly,

Good luck and best wishes and prayers...

I decided to go with chemo, too. Will find out tomorrow when I start.

Very scared, but just want to get it over with!

AllieM

Ki67 is a measurement included on the Oncotype DX. Without getting too technical, it indicates the aggressive nature of a tumor because of cell reproduction (mitotic rate) as far as I can tell from what I've read. A high number means fast growing.  What it meant to me was that if by chance any cancer cells got missed in surgery they would probably grow very fast and be too far gone before I had symptoms. This is just an assumption I made on my own. Also, a couple of articles I read indicated that chemo is usually pretty effective on high Ki67 tumors.

IamNancy

AllieM - thanks for the answer - also good luck tomorrow

curly123

Thank you Allie.  Wishing you the best also.  We can be scared together.

xo

curly

Jazzygirl

Curly123 and AllieM- good luck with your chemo start, and let us know how you are doing as you wish to.

Tammy_M43

Curley and Allie, best wishes for a speedy end to your treatment!

curly123

Thank you Jazzy and Tammy.  Best to you also.

xo

curly