Topic: Oncotype Dx score 24 Chemo or no chemo?

Jul 17, 2008 12:42 PM Jisman wrote:

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.

Jul 17, 2008 01:47 PM kbuskirk wrote:

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

Jul 17, 2008 02:06 PM nash wrote:

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.

Jul 17, 2008 04:49 PM OneBadBoob wrote:

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.

Jul 30, 2008 03:19 PM flyrzfan wrote:

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

Aug 2, 2008 07:15 PM DoreenF wrote:

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 

Jan 10, 2009 01:27 PM, edited Jan 10, 2009 01:29 PM by rdrake0

Jan 10, 2009 02:20 PM mzmiller99 wrote:

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

Jan 10, 2009 09:40 PM 07rescue wrote:

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. 

Jul 21, 2009 05:24 PM kmarkou wrote:

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.

Jul 29, 2009 01:50 PM, edited Jul 29, 2009 02:42 PM by 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. 

Jul 30, 2009 02:53 AM mtnuts wrote:

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. 

Jul 30, 2009 04:05 PM sheri47 wrote:

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

Jul 31, 2009 12:46 PM lbrewer wrote:

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!

Aug 1, 2009 06:59 PM jude14 wrote:

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