Oncotype Dx score 24 Chemo or no chemo?

Lisa1965

Dear Friends,

If anyone can share some experience on decision making when it comes to an Oncotype score of 24... the oncologist has already set up chemo appointment to start July 31st.  I am 42 years old and premenopausal just wondered if anyone decided NOT to do chemo with a score of 24 or similar.

Hugs to you all,

Thx Lisa

Anonymous

Im sorry to have to say this Lisa, but at your age and the grade of your bc I think you would be wise to follow the onco's advice and have the chemo.

I know its not a pleasant thought by any means, but can how would you feel if you didnt and it came back?? the grade alone is what would scare me into doing chemo.

You can do this sweetie!!!! We will help you through.

Hugs

Jule

Jisman

Lisa -  I just sent through my repsonse to your PM.  Now seeing your number is 24, you are relatively close to the high end of the "sweey spot" range being used in the TailorX clinical trial. Eeveryone higher than somewhere around 26 or 28 is getting chemo in that clinical.  Add in your grade 3 and why take a chance.  Invest in your future.  Good luck.

VBG

Hi Lisa,

My oncotype was 24 also and I am 48.  After being diagnosed with bc for the second time, in the same breast, my doc ordered an oncotype test.  I had rads and went on tamox after my initial dx.  These 2 therapies did not work for me.  My onc recommended chemo based on the onco score and also the fact that tamox did not work for me (despite being a high metabolizer of tamox).  I am going in for my 3 tx of chemo next week.   As Jule says given you age, your dx and your onc score your onc's recommendation to throw everything at this bc seems like the right thing to do.

My chemo has not been difficult -  hardest part is the bald head - but that too will be over in a matter of months.  I look forward to a long happy cancer free life from this point on and I wish you the same!

Valerie

kbuskirk

Hi Lisa,

My oncotype was 26 and I'm 37.  My onc's recommendation was chemo and then hormonal therapy after.  I am doing the tamoxofen/cytoxan and as you know had my first treatment a week ago.  I've had a few side effects..mainly a headache since the 4th day.  I think it would be a good idea for you to do chemo and you'll always be able to say down the road that you're so glad you did everything possible to get rid of those cancer cells!  Good luck with your decision....keep me posted.

Kim

nash

I was 38 at diagnosis, oncotype 18, grade 2 tumor. Four docs told me I had to do chemo--it was just a question of which one. I agree with the other girls--grade 3 tumors need chemo, and in general they respond to chemo better than grade 1 or 2 tumors.

Lisa1965

Hi Everyone,

I cannot tell you enough how all your comments have helped my decision making.  I truly feel along the same lines as all of you and will go for it... I want to do everything I can to avoid a recurrence and chemo is surely a step in the right direction.

I'll meet with my med onc next Thursday to discuss the details + already have pre-chemo appts booked for the following week prior to starting on July 31st.  Apparently they will insert the portocath on the morning of the first chemo tx on July 31st.  I'm really going to work hard on myself over the next two weeks to try and get in the best shape I can...lots of protein and exercise.

I'm wishing all the best for you continued treatments and continued good health...

Take care and talk to you all soon,

Lisa

OneBadBoob

Hi Lisa--

I chose to do chemo with a score of 24 and a tiny little less than a cm tumor--I was also a grade 3 and no nodes, but felt "hitting that little, strong sucker" hard at the start was the best way to go.

Good luck in your treatments--lots of support and suggestions here on this board to help you get through each and every step along the way.

MargaretNicosia

Hi Lisa- I Know this is close to the "date" but I opted for no chemo or radiation or tamoxifen.

I was IDC 1.8cm Stage 1, Grade1, 0/2 nodes ER+/PR+ HER2neu- My Onco Score was a 27

I chose a mastecomy with reconstruction with an implant. After they disected every inch of my breast and nipple and part of my chest muscle all the tests came back that there was no cancer in anything other than the tumor.  My next pet scan is tomorrow and when that comes back "CLEAR" I will schedule surgery to remove my ovaries to avoid taking tamoxifen. My kids are all in college. My situation is similiar but different- since you are grade 3 I do agree with the other women that chemo is necessary as preventive - I have other issues involving liver and kidney functions and chemo is not an option for me.  I was diagnosed 10/5/07 so it has not even been a year yet with all that I went through-  Good luck and god speed

flyrzfan

Hi Lisa ~ I know tomorrow is the "big day" for you so I wanted to wish you well. I would have chimed in to say "go for it" had I found your post in time. I finished my AC two weeks ago and start Taxol/Herceptin tomorrow. I was stage one, grade 3 also and +++. I was on the fence about chemo until my Ocono score came back a 49 ~ that pretty much settled it. I'm glad you're going to do it, your score is to high not to with a grade 3 (in my humble opinion ) and even though Chemo suks, a reoccurance would suk more!! No what if's if you do it all right off the bat. Best of luck to you tomorrow...it's not as bad as you fear it will be.

Bonnie

mzmiller99

  Hi, ladies,

How did all y'all get an oncotype dx?  My surgeon hasn't mentioned it.  I will see the rad oncologist Aug. 6 and hope he'll recommend it.  I dread chemo, but I dread not killing all the little cancer nasties more!!

Anonymous

mzmiller -  any of your doctors can send the request in for the oncotype DX test.  In my case it was my surgeon who ordered the oncotype dx test. You could have your surgeon,  an oncologist - or  even the rad onc order the test for you. 

Doreen 

rdrake0

I need advise.  I had a lumpectomy on December 8, 2008, with reincision on January 2, 2009, for clean margins.  Yesterday my oncologist called me to tell me I didn't need chemo.  I had to ask him what my oncotype dx number was.  He looked it up and said it was 25.  I am 59.  Everyone else at this site has been told by their doctor that they need chemo for the same as my cancer.  I don't really want to loose my hair, but I'd rather that than have cancer come back.  I live in central Illinois.  Do I need another oncologist?  Help!

Ruth

rdrake0

I need advise.  I had a lumpectomy on December 8, 2008, with reincision on January 2, 2009, for clean margins.  Yesterday my oncologist called me to tell me I didn't need chemo.  I had to ask him what my oncotype dx number was.  He looked it up and said it was 25.  I am 59.  Everyone else at this site has been told by their doctor that they need chemo for the same as my cancer.  I don't really want to loose my hair, but I'd rather that than have cancer come back.  I live in central Illinois.  Do I need another oncologist?  Help!

Ruth

rdrake0

I need advise.  I had a lumpectomy on December 8, 2008, with reincision on January 2, 2009, for clean margins.  Yesterday my oncologist called me to tell me I didn't need chemo.  I had to ask him what my oncotype dx number was.  He looked it up and said it was 25.  I am 59.  Everyone else at this site has been told by their doctor that they need chemo for the same as my cancer.  I don't really want to loose my hair, but I'd rather that than have cancer come back.  I live in central Illinois.  Do I need another oncologist?  Help!

Ruth

mzmiller99

rdrake0 - Certainly get a second opinion.  Especially if you don't feel comfortable with your onco's decision. 

 I kind of  thought the oncotype score needed to be lower, but then, I didn't realize they did the testing on node-positive bc.

As soon as someone smarter than I sees your post, I know you'll get better answers, but it is your right to get second, or third, opinions, if you choose. 

 Check with your surgeon for another onco, and check your insurance to see if they'll pay.

Let us know.  Good luck!

Susan

sflow

rdrake0

  Hi--my numbers are the same as yours only my oncotype score was 22 and I was 56 at diagnosis.  I opted out of chemo due to the serious side effects possible and the fact that we have heart issues in our family.  I am 2/12 yrs out and don't regret my decision.  Definitely get another opinion if you are not comfortable. 

07rescue

Hi rdrake

My Oncotype score was 23, with a 9 mm lesion, 0/3 nodes, ER+, low intermediate HER2+, grade 3. A PET scan showed no other cancer outside the breast. I had a bilateral mastectomy in September 2008.

It was the grade 3 that most moved me in the direction of getting chemo. All the oncologists I consulted said the decision was entirely up to me. I tend to believe the "character" of the tumor counts more than the size or node status, and based my decision on that, rather than that I found the nasty bugger so early, before it had grown large and metastasized to the nodes.

You may want to take into consideration what your other risk factors are as well. For example, I have kidney damage from another disease (endometriosis), which limits my chemotherapy choices and doses. Kidney failure would be as deadly as a cancer reoccurence for me, because with a malignancy you don't qualify for a kidney transplant, and dialysis is a dreadful, and foreshortened way to live. If you do not have additional risk factors in your way the decision may be clearer, if you have reason to believe you will tolerate chemotherapy pretty well.

Hormonal treatment is dicey for me as well. I cannot take tamoxifen because it is contraindicated for people with endometriosis. I developed my cancer while taking an aromatase inhibitor (Femara) for the endometriosis, so hormonal treatment has not worked for me. I cannot afford Faslodex, the only other hormonal treatment left to try. No insurance will pay for it in my case because it has not been approved for early, non-metastasized breast cancer, and it is over a thousand dollars a month, for an indefinite period of time.

Your tumor is HER2 negative, so it may well respond better to hormonal treatment than mine does, because HER2 positive tumors don't always respond that well to hormonal treatment. That would be an option you might want to talk about with your doctor. You likely have hormonal treatment options that I don't have, because you are ER+ and PR+, plus you are HER2-. Had that been my case it might have swayed me against doing chemo. Most oncologists believe that hormonal treatment of hormone receptor+ tumors is even more important and works better than chemo.

I decided to try the chemo even with my kidney damage, and will be starting it next week. I have talked with my oncologist about titrating the chemo carefully to avert any further damage to my kidneys, and we will try our best to make it work. He is a good egg, and we work well together, have a very comfortable rapport. I had to try several doctors to find one who pays attention to detail, like preserving kidney function, LOL.

Good luck with your decision, a second opinion may be very helpful. I wouldn't hesitate to go for a third, as well, if you need a tie breaker!

Please let us know how you are doing. 

otter

Ruth, IMHO, you ought to seek a 2nd opinion from another oncologist.

My situation was very similar to yours.  I was 55 at the time of dx, with a Stage I IDC that had not spread to my nodes (0/3 nodes involved).  My tumor was larger than yours (1.8 cm), but it was just a grade 2. It was also ER+ PR- HER2-.  I talked to two different oncos, and with my Oncotype score of 26, they both recommended chemo.

The factors they considered "risky" for me were the size of the tumor (larger than 1.0 cm); the fact that it was "intermediate" in grade (not grade 1); the fact that it was ER+ but PR- (tends to be more aggressive than ER+ PR+); and my Oncotype score (risk of distant recurrance was 17% with estrogen-blockade but no chemo).  Oh, and at 56, I was considered "young"; younger women tend to have more aggressive tumors.

So, with your Oncotype score, tumor grade, and ER+ PR- status, you should at least find an onco who will sit down with you in-person and explain your risks, and the pro's and con's of chemo.  07rescue's post was very good--there are factors on both sides that need to be weighed.  Find out from another onco whether the characteristics of your tumor warrant a 2nd look at chemo.

otter 

kmarkou

Hi Lisa.  My name is Kim and I am 44 years old.  Just had a bilateral mast. June 26.  Lymph nodes all negative, but positive margins on part of breast tissue.  They immediately told me I would need chemo and radiation.  I told them there is no way I'm doing chemo, not having just removed my breasts in an effort to be proactive with this shitty disease.  Asked if the surgeon could go back in and get clear margins at the time of my 'swap' out from tissue expanders to perm. implants.  He said no because he doesn't know if I def. have cancer cells there and he wouldn't know where to cut.  But then I go to the radiologist who tells me I definitely still have cancer cells and they know exactly where to pinpoint the radiation.  I ask them how they know if the surgeon didn't know and he's the one who cut it out.  Then I  got so upset at the bullshit that I tell him I will wait for the ONCA score, which was in two days ago.  Today I find out the radiologist has the results, but won't give me over the phone.  Have to go in and meet with him.  My oncologist never got the results.  Called Onco's number direct.  They won't give me the results.  They'll give to everyone else, but the patient.  I am so tired of being treated like I'm just the stupid patient with cancer who should shut up and do what she's told to do.  Not my style.  Radiologist said there is no risk with radiation and they won't be anywhere near my heart, but they want to radiate near chest wall on left side...  It's all bullshit.  You have to make up your mind and follow your gut feeling.  My gut is this sucks and nobody can give me a straight answer.  Will I do chemo depending on the ONCA score?  NOPE.  Will I do radiation?  Maybe.  But someone has got to convince me they know exactly where they need to radiate.  Do not go quietly into the night.

luckyrabbit99

Lisa,

You are where I was 3 months ago.  I to have grade 1 stage 3 er/pr+ HER-.  When Oncodx scroe came bake I was in the gray area 26 or 17%.  I took me some time to decide on chemo.  I decided to go ahead and start.  I finished my last round on July 2nd.  I will not tell you tha tit was easy because in was not. I had developed weird SE but overall It was worth doing it.  3 weeks after the last chemo I have regained alot of my lost energy, I seem more alert, and my head looks like kiwi. LOL

SusanFL

I waited 4 weeks for Oncotype results, hoping it would be low.  I was told that in most cases, if lymph node positive, they would automatically start chemo.  But with Oncotype low and other criteria, my oncologist said I would not have needed chemo.  My Oncotype came in at 19, one point higher than the low range.  Therefore, my oncologist recommended chemo.  I suggest that you take your oncologist's advice and do what he recommends.

I started my chemo on Monday, 7/27/09.  I don't know of all the different types of chemotherapy drugs, but it is my understanding that mine will not be highly toxic, so I'm hoping for fewer SEs.  I am taking Cytoxan, methotrexate, and 5 fluorouracil (CMF).  If anyone taking these meds, I would appreciate any information regarding your experience. 

timpmama

HI Lisa,

My diagnosis was almost exactly the same as yours, only difference being my age was 45 at diagnosis. I don't rembember my exact oncotype score--21? 23?--but I opted for chemo. It was of course upsetting when my onc recommended it; we all hope to avoid it.  But I went for it along with radiation.

It is not as bad as you probably think. Yes, traumatic, yes, you feel like crap after treatment, but nowadays, no nausea and lots of other meds to help. So go for it. Get it behind you and get on with living.

Thinking of you, 

timp

mtnuts

Hi All!   I feel as though I have just entered the grey zone a.k.a. intermediate risk with an Onco score of 18.    Yes, I too have scoured the Journals of Oncology looking for answers regarding whether or not to have chemo.   I have also consulted with two oncologists.   My stats are 50 yrs old, 2 cm, Stage 1, ER+, PR+, HER2-, IDC and DCIS Grade 1 & 2, RM.   I am definitely walking the fence on my decision whether or not to have chemo.    If you could share any thoughts regarding making a decision in the grey zone, I would appreciate your help. 

chiquita

Ruth (rdrake0)

The best way for the cancer not return is CHEMO and is also the best way to get a clean future...go for the CHEMO!!!!

Lisa go for the CHEMO, a friend of mine die 5 months a go because she was afraid to loose her hair!!!!

sheri47

hi  i am stage 1 c grade 2 no nodes onco gene was 18 i did 4 rounds of AC not pleasent but very doable  i did the chemo for a good peace of mind i needed to know i did all i could do. i would follow your dr advice but always up to yopu god bless sheri

Lisa1965

Hi Everyone,

I'll first let you know that my diagnosis was May 2008.  Definately the Onco score of 24 was not a question for me to do chemo.  I have completed all the steps for recovery and feeling great.  I had a lumpectomy on the left breast and then on July 31, 2008 started 5 rounds of FEC and then 30 sessions of radiation.  I must let you all know that the chemo was not easy, but I survived.  I was hospitalized twice with very serious intestinal infections through October and November 2008 which almost brought me down, but I fought back, didn't give up and to this date I would recommend chemo because I feel I have done everything to fight this disease I could.  Radiation is a piece of cake, seriously.  Some mild skin irritations, some mild aches in the breast, some mild discoloration, but everything has returned to normal now.  I am going back to work next month and truly feel good.  My decision was if my onco Dx came back over 15 I would go for the gusto...put it on the fence and decide.  My doctors told me that even with clear nodes, maybe some microscopic cells could have been released in my blood stream showing up later on maybe in my liver or elsewhere, so that really made me think about my decision.

At the very least, if you do not have clear nodes do chemo! 

Kamarkou...at the very least do radiation, it's not really that bad.

If you have any further questions, please don't hesitate to contact me.

Bigest hugs ladys for your journey through this...bless you all.

Lisa 

lbrewer

Mu onco was also 24 but only 7mm.  I spoke with several onc both at MD Anderson and Moffit Cancer center and they all urged me to have chemo.  I finished TC 2 months ago and feel great now.  The decision is alwasy yours but you have to be comfortable with the decision.  If it comes back and you did not do all you could to prevent it, can you acccept that?  Chemo wasn't fun, but it made it through and am not looking back!

majdoyle

I completely identify! My oncotype score was 16; much higher than I had hoped considering my cancer was 1.8 cm, stage 1, grade 1 with no lymph node involvement. I am 42 years old and I have decided to go ahead with the chemo though I had truly hoped to avoid it. I just don't want to look back and wish that I had done it-and I certainly hope to be alive long enough to do some looking back! This is what swayed my decision; I am ER/PR + and Her2 - but the oncotype dx found my ER status to be at an 8 which means my cancer IS estrogen receptor positive but not strongly positive. I don't want to bank on tamoxifen with a ER score in the gray area. The decision making process has been agonizing but now that I have a plan I feel strangely peaceful. My first chemo (TC) is next Friday. I would have gone today if they'd let me. I just want to put all this behind me! My prayers are with you as you make your decision-it is yours and yours alone to make. God helps them who help themselves!

jude14

rdrake0...I was a stage one grade 3 no nodes but they got clean margins on me with the lumpectomy.  My onco score was an 18 and I was 58 at the time.  I was told no chemo and I ran....I did the radiation and taking the femara right now but I was told no to chemo....jude14

choca1711

My oncotype DX score was 27. Oncologist gave me the choice whether to do chemo or not, but did highly recommend it. I decided to do the chemo. One of my main reasons for choosing chemo was to be as aggressive as possible to  beat the cancer. I asked myself this question: If I get a recurrence down the road, how will I feel if I don't do the chemo? Will I live to regret that decision?

Ultimately I decided that chemo was the best way to go for me. That way, in the event of a recurrence, I at least will be able to say that I did everything possible to prevent it.