Roll Call! Oncotypedx lower range but still intermediate

Alikat123 · June 2013

Hey Everyone,

Calling all lower end but still intermediate range Oncotypes

I wanted to start a post if I could for any one like me who is stage 1 no nodes, small tumor 1.3 but with an Oncotype score (mine's 21) that just bridges the low (which stops at 18 for them) And what you decided on for chemo? Because I am having a tough time trying to decide.... this is so rough because if I came back closer to the intermediate but more toward the high like say 25-26 For my own personal preference I would not be stressing over chemo or no chemo. (I would do the chemo) You do not have to be a 21 like me, just within intermediate numbers, and what that did for your treatment plan.

for Reference: Low reccurance Onco score 0-18 Intermediate 18-31 high- anything 31 or above

Thanks

lynnt · June 2013

Hi, My diagnosis more than 3 years ago was similar to yours. My onco score was mid intermediate (I don't recall the exact number) which means I had a 20% risk of recurrence without chemo. For me, it was a no-brainer. I suggest talking to your oncologist about it and getting her/his opinion. Find out what your specific risk of recurrence (if you don't already know) is. Chemotherapy was hard but not as bad as I had expected. I don't regret doing everything possible that I could to prevent recurrence. Please let us know what you decide. My prayers are with you.

Lynn

Alikat123 · June 2013

Lynn,

Thank you for your reply! This Monday I have an appt with my onco, to go over the numbers. He called me yesterday (Friday) to give me the oncoscore itself, said to considering adding chemo (Yea! happy weekend for me LOL) But he will go into more detail when I see him, he did say he would'nt judge me if I turned down chemo, which I found - him saying that quite unsettling not sure why. But yes I will let you know, when i have all my numbers and a decision.

HUGS to you

Alicia

lynnt · June 2013

Hi Alicia, I remember getting a similar call from my oncologist in the evening (sweet dreams!). Yes, I know that uncertainty is so hard. Take deep breaths and try to do something fun for yourself this weekend.

Lynn

Alikat123 · June 2013

Thanks so much again Lynn, Your support at a time like this is a ray of sunshine! I am happy to hear for you that you are 3 years+ out from a similar diagnoses to mine And yes my hubby and I are spending the weekend doing a movie night. If there is anything we (my husband and I) have learned from this process is you take it day by day as it comes. And maybe through doing all of this treatment there will come a day when BC is not taking up every possible thought in your brain. I need to believe that for me and my hubby, he has been my rock through all of this!

Take care,

Alicia

LakeGirl2 · June 2013

My oncotype was 22. My onc did not have a recommendation and said I don't know what I'd do if I were you. I did 4 rounds of TC. I am about 3 weeks pfc. Chemo was not fun but I did ok with it for the most part. It is a tough decision but I have 2 young boys and wanted to do everything I could. I have seen the advice on here to do what lets you sleep at night - for me, that was chemo.

Alikat123 · June 2013

Hi Lakegirl2,

Yes, I agree, the ironic thing is my onc had told me had this been 5-10 years ago that chemo would have been warranted as they gave chemo to any tumor over 1 cm mine was 1.3 cm. so even with that small amount over

chemo would have been part of the plan. And the fact that I am 44 plays into it too as the younger you are the more opportunities for things to reoccur....May I ask how were the SE on the TC?

Alicia

Beckers · June 2013

My tumor was T1c (1.3) invasive ductal carcinoma and oncotype came back 19. Two MO's both said they do not recommend chemo. I am highly ER+ so tamoxifen will have to do. I also feel like at least the chemo will be available if needed later.

Good luck to you.

LakeGirl2 · June 2013

Alicia- I had heartburn, a reoccuring rash, aches and joint pains (could have been the neulasta shot), a few bouts of diarrea, constipation, a superficial blood clot in one of my veins (no port for me since only 4 treatments), and a dry cough, which I still have. Water and food tasted off for several days each treatment. I had loss of appetite after 1 round and some weight loss but my appetite is back now. Also chemo induced menopause and of course, hair loss. The heartburn, rash, aches and pains, big d, constipation - all managed by my onc. Blood clot was checked out and resolved by itself.

If TC is recommended, check out the two or three threads in the Chemo forum for others SE. Hope this helps and doesn't scare you. I had lots of fear about what the SE would be but felt prepared by what I read here and had good support from my MO 's office.

momand2kids · June 2013

my score was a 25 or 26--gray area.... decided to go for it--4 rounds of A/C. not pleasant, but I was able to do it and more or less live my life..... no regrets....

good luck-this is a hard decision. I think you really need to know the numbers--- what is the % benefit and what would the % of possible recurrence be if you don't do it.

klaudiak · June 2013

My score was 20, but weakly ER+, so that's why my MO recommended 6 TC, I did it and was doable, some SE but mostly fatigue.

LakeGirl2 · June 2013

Alicia- I am 45. Also, how could I forget fatigue? Fatigue was definitely cumulative.

Alikat123 · June 2013

LakeGirl,

Thank you for your information, it has really helped me, and yes I was wondering about the SE- but no you did not scare me I really don't think I am scared of just about anything anymore, Once you hear the word cancer, fear of what is involved at least for me, became kind of like, surgery first OK, at least it's "out" of me and well what's next, and you take it as it comes... I have to say too being 44 (now almost 45) that did kind of knock me for a loop that they found BC. Take care and continued health on your journey through this.

Alikat123 · June 2013

Momand2kids,

I am so happy I found this board everyone is so supportive! Tomorrow I have a visit with my onco to go over the numbers to see how the chemo could benefit in bringing the % down.

Alikat123 · June 2013

Beckers,

Thanks for giving me your expierences, your number is close like mine and because I think for me too, that in my situation, I am also strongly ER and PR positive as I was told before adding the chemo came up that hormone "blockers" (and rads) were definately in my future. So I will see how this all plays out when everything is put in front of me, and how much benefit the chemo will add.

Alicia

Hollycat · June 2013

Hi all. I am 46 and had a BMX on Halloween and lovely implants placed on Feb. of this year. I opted for this and tamoxifen instead of rads and chemo. I am an ATM gene carrier (so rads were really not an option) My oncotype was low intermediate so I had the choice. The small % difference the chemo was going to make was not worth the SEs in my situation.

Hollycat · June 2013

Oncotype was 19...had to look back in my records! and...my 9mm cancer was removed with clear margins in a lumpectomy (which I can not manage to make the profile read...??) and then I chose to have the BMX!

IngridJ · June 2013

Hi

I just posted in the June chemo thread. I had an oncotype score of 18, small tumour, er pos, but I have opted for chemo as I felt score was verging on the intermediate, also my er and pr scores from the oncotype were lower than the path report which concerned me.. The ki67 was 25 also, and was a high grade two, nottingham score of 7/9. So... Those were my concerning factors, although I think I found them more worrisome than my oncology did...

At 43 I felt the extra insurance would, if nothing else, give me greater peace of mind!!

Not an easy decision and I don't know about side effects yet as am starting today!!!

Good luck with your decision.

Reggie411 · June 2013

Good Morning: I have been a breast cancer nurse navigator for over 7 years. I worked with breast cancer patients from diagnosis and treatment to survivorship at a community based hospital/cancer center where we diagnosed 200+ breast cancer patients a year. 40 percent of the time Oncotype will come back intermediate... So, I am very familiar with your situation. I am now affiliated with a second generation test which eliminates the intermediate score. You may want to consider visiting knowyourbreastcancer.com for more information. Good luck!!

Alikat123 · June 2013

Hollycat,

Wow it's just so interesting to me that even when people seem to be on similar journeys they choose different paths. I am so glad I am getting so much feedback. Wishing you all the best with your plan!

Thanks,

Alicia

Alikat123 · June 2013

IngridJ,

I'll be thinking of you today as you begin your chemo. As for me I have my Onco appt this afternoon, kind of nervous because I want him to actually LISTEN to me first, (I have been praying for that all morning) before trying to push chemo on me. I am really feeling like I'm going to get pressured by him. But I will see how I feel once he gives me the numbers.

Good luck! , Stay well I'll pray that the chemo does not give you too many SE for you IngridJ

Alicia

Alikat123 · June 2013

Hey everyone who has been following this thread On my chemo no chemo decision with an Oncoscore of 21. Met with the onc this afternoon, and we collectively decided no chemo, as my preexsisting Cerebral palsy was a concern as far as having longterm and possible irreversible SE in my case if we did do chemo....Plus the fact that my scores for ER+ and PR+ were strongly high so with all that in mind, we decided to keep th current treatment plan of shutting down my ovaries with Luperon and putiing me on Femera and maybe a bone density drug not but Zometa- maybe Reclast? We will do a DEXA (bone density) scan to figure out if I will need it.

THANK YOU to everyone who has supported me on this board, Please continue with your aswers to my Roll call because I am really interested to see what people decided when they ended up in what I call "no woman's land" with their Oncodx score.

Alicia

barcelonagirl · June 2013

Hi Alicia! I'm so glad you have made a decision with your treatment! There's nothing worse than being in limbo! I was diagnosed in August (for my 50th) with Stage 1a BC. I had 2 tumors (1.5 and 1.6 with DCIS b/t) on the right side. ER+/PR-, HER2 - Had a unilateral mastectomy, nodes were clear, and thought all was smooth sailing, until the oncotype came back 21! After much discussion and a second opinion, I decided to get the Mammaprint test. It's a newer test that looks at 70 genes and gives a definitive yes or no for chemo. Mine came back "yes." So the decision was taken out of my hands (don't think I would have opted for it otherwise.) I've completed 4 rds of A/C and 4 rds of Taxol, and had my final reconstructive surgery late Feb. I made the best out of the chemo (chemo parties, great wig, wonderful friends making delicious dinners) and am so glad to be on the other side. Your situation is different with the CP, and I wish you all the best with your path of treatment. Stay strong and positive...attitude is everything!!

IngridJ · June 2013

Hi Alicia

Thanks for thinking of me.. So far all is ok..

Glad you've made good decision, the combination of ovary shutting down with the tamoxifan was proposed by my onc as being a very effective treatment.

Best wishes to you!!

Take care

Ingrid

Alikat123 · June 2013

Barcelonagirl,

Thanks for posting your story, Wow I feel awful for you getting a dx of BC on your 50th b-day! But I am glad to hear that you are doing well. And as a side note I did ask my Dr about th Mamaprint because I thought maybe being in that grey area I would make the "wrong" decision, My onco prefers the Dx test, so he felt confident with that.

Alicia

Alikat123 · June 2013

Ingrid,

I am very happy to hear that so far so good on the chemo SE, Wishing you the best that it stays that way! So yes I had heard that too of shutting down the ovaries, and using either the Tamox or Femera can be very effective especially in women with stong ER/PR receptor status. I will also have the radiation staring in a couple of weeks first, then start the hormone supression therapy, Not really looking forward to being put into menopause....but at almost 45 yo it's bound to happen on the sooner end of time rather than the later LOL. if you would like to keep me updated on how you are feeling and how it goes for you when you are completed with chemo, I would like that.

Thanks,

Alicia

AmyQ · June 2013

Before bone mets dx my oncotype score was 9 - doesn't this seem crazy since I'm stage IV or are the two completely unrelated?

Alikat123 · June 2013

AmyQ,

I am so sorry that you are stage 4 with bone mets! I am not a Dr. (obviously) but it would seem to me if this is a 1st breast cancer and not a recurrence BC- that if this is your intial DX for you they found you at a stage 4? Because from what I understand the Oncotype DX is run for women with stages 1 and 2 cancer with positive hormone Er/Pr+ status and no nodal involvement and what this test then does is gives them a score based on the characteristics of just the tumor or tumors removed at the time of surgery and that gives the doctors an idea on how likely a metastatic sitution may happen in the future -- estimate about 10 years and whether the addtion of chemo can prevent that from happening. it also gives a score of how hormonally senstive that a tumor was and high sensitivity with a low or borderline number may respond much better to hormone therapy, Tamox, Lupron, Femera without adding chemo. So I cannot say why it is exactly you had such a low score, Unless the 9 corresponds with something else (perhaps) you grading score which can run from (3-5 grade 1) (6-7 grade 2) (7-9 is a grade 3) that means that the cancer is most likely very aggresive in how it is dividing I hope maybe this helps Best of luck to you!

Alicia

AmyQ · June 2013

Alikat123 my initial diagnosis on 2/7/13 was stage 1 - I opted for BMX over lumpectomy given the location and that I had a begnin cyst on the other side of my r breast. When surgeon discovered lymphnode involvement she removed 3. Onc ordered the Oncotype test presuming I was Stage II at worse. Score came back after a bone scan revealing bone mets. Oncotype test score was confirmed at 9 which is very low. Anyway, I realized the score is a moot point since I'm currently getting chemo and have bone mets but have declined radiation for several reasons. I guess we all hold onto hope where ever we can find it and my hope is I scored 9 so if I have good results with chemo and femera I hope to have low chance of progression for many years.

edwards750 · June 2013

Wow AmQ...a 9 and you had bone mets? That doesnt make sense =...I had a score of 11; Stage 2, Grade 1. There was a lady on this forum who had an 8 score and had a recurrence...I think I recall though it was a new cancer not BS spreading. Regardless the test isnt perfect but has saved a lot of women, like me, from the dreaded chemo. I hope too you have very low progression for a long, long time. Diane

IngridJ · June 2013

Alikat123; I know, I agree; initially I thought menopause sounded harsh, but at 44 (almost) yes I guess it's not so far into the unforeseeable future..was envisaging it around 50 though pre bc...

So far day 4 post first chemo; don't feel too bad, just heartburn and digestive issues plus a bit tired. So can't complain too much...

Take care

Ingrid

Roll Call! Oncotypedx lower range but still intermediate

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