Oncotype DX gray area for woman under 50

Lisey

Good for you Maiyen,  I wish more people would know about the Mammaprint.. it could help a lot of us intermediate oncotypes make a more informed decision.  People just assume it's thousands out of pocket - which it isn't (and you can see it's quite inexpensive)  and I think the Oncotype corporate peeps don't want the competition so they continue the myth.  . 

JNKK

My now former MO refused to do mammaprint test and doesn’t recommend it. I am waiting to see my new MO to see what she thinks. But I get this feeling that she will say the same thing.

Lisey

JNKK... Your body, your choice.  If you want the second opinion and are willing to pay for it out of pocket, it is not their decision.  Do your research and decide for yourself if mammaprint has value for you - rather than completely trust your docs. 

TomMorrow

Both of the MO's we saw also recommended against Mammaprint when the tumor is small (6mm) and low grade (they both agreed it wouldn't provide any additional information that we didn't already have). We had the option to order it, but opted out based on their recommendation and how they explained the pros/cons of chemo in my wife's case. But I agree that you should make your own decision on whether to order a different test. At one point, I asked the primary MO why I wouldn't order Oncotype DX, Mammaprint, BCI and Endo Predict. My wife thought I was a bit crazy to ask for all of the tests.

JNKK

I won’t be able to see my MO until 8/27... I am also looking into the types of chemo drugs that would be most effective and less damaging to me. My former MO suggested 12 rounds of taxol weekly then 4 rounds of AC or FAC every 3 weeks for total of 6 months. I have since then been reading about it. I have seen woman that are similar to my situation get 4 rounds of TC, and i met two ladies today, both had triple negative, reieived AC + Taxol. It’s my body and i have the right to have options. I don’t think AC+Taxol is for me! I have lost 6 pounds since I diagnosed with BC. I am stressed out and my poor kids have seen me crying more than smiling

ChelseaSculler

JNKK, absolutely it's your body. My MO was suggesting CMF, which is older but apparently doesn't have as many SE, so that might be an option? I was pretty against the entire idea myself so I completely understand where you're coming from. Just keep making a list of questions about why the MO is recommending certain treatments so you're ready for that meeting.

Lisey

Also, just another thing to consider.  I took the Kailos Genetic Complete RX, which rather than is genetics on your tumor, actually evaluates your metabolism pathways and if you have mutations that would prevent proper absorbtion. (think people who cannot handle pain meds.. or Tamoxifen).  In any case, it actually showed that one type of chemo agent would be fatal to me given a mutation on a certain pathway.  I highly suggest people look into this test as well - knowledge is power. 

https://www.kailosgenetics.com/pgxcomplete

Here is a snapshot of JUST 1 page of the 60 pages I received showing all my various pathways for medicines. 

Honestly this test was huge for me.  It showed I was an extensive metabolizer of Tamoxifen and could have a reduced amount with the same effect. 

ReadyAbout

FWIW, I would also ask the oncologists about the decisions that women with your same profile usually make. For example, when I was diagnosed with DCIS, I decided not to take Tamoxifen and the MO was fine with that, saying that 50% of his patients with my type/stage cancer opted to take Tamo and 50% did not. However, when my cancer was reclassified as invasive (long story), the MO said that 95% of patients with my type/stage cancer took Tamo and the 5% who did not were women who were adamant about not taking it, preferring to try homeopathic remedies. My Oncotype was 19 and MO said I have a roughly 19% chance of cancer later. Tamo drops it to 12% and I told MO that going from a 1/5 chance to a 1/8 chance wasn't a particularly compelling argument for taking Tamoxifen, but knowing that the vast majority of women in my situation take it helped me make a decision.

Insideout2

JNNK- Hang in there. I had FAC for my chemotherapy. It was a four day treatment. Day 1 in office, leave with fanny pack, and return on day four to remove fanny pack and get last bag of chemo. I worked from home the weeks of chemo.

I am preparing for radiation. My simulation is Monday.

Take care everyone.

ShetlandPony

Thank you to Lisey and others who brought up Mammaprint. I don't know how I missed mentioning it in my previous post. I think that determining luminal A vs. luminal B with this test is important in cases where the best treatment path is not entirely clear.

Maiyen, thank you. My current treatment is indeed working very well. No evidence of active disease.

JNKK, yup, we do what we need to do for our kids. When my onc suggested chemo on my second diagnosis, she asked what I thought about it, as if she expected I might refuse. I just handed her a photo of my kid. (Of course the choice was made easy for me because my scan looked pretty bad. Not really a choice as far as I could tell.) I hope you got your questions answered at your last appointment. This process of decision-making is so stressful. Most people find that once they have a plan it gets better.

JNKK

Hi ShetlandPony - I am going to see a MO at another hospital tomorrow for a second opinion. I won't be able to see my new MO at MD Anderson until August 27. I am sure the second opinion would be chemo, but I am mostly interested to see what she would suggest on the chemo drugs. I have been doing my own research on the different regiments. I was told by my first MO (you know, the one who fired me because I asked if I can get a second opinion from one of his colleagues) that he would put me on 4 rounds of FAC and then 12 rounds of Taxol, after reading and talking to people, that didn't fly with me. I was told by a woman who had inflammatory BC, FAC + T was what she had 10+ years ago. Then I was told by my neighbor who is a pharmacists at MD Anderson that the new regiment is dropping the F, just do to AC + T (and that's what I have been seeing with lots of woman here). Then I found an article/study comparing AC + T and TC, AC + T has a slight better outcome than TC in 4 year survival rate, but then they went into detail looking at all the different characteristics and compare between the two - for me TC has about 2.5% reduced recurrence risk than AC + T. Here is the link to the article https://www.breastcancer.org/research-news/chemo-w....

ShetlandPony - I want to thank you. I took your suggestion and started doing my own research, after all, we are our own best advocates. Now that I have done my own due diligent, I will be able to work with my MO and not just follow blindly. Here is the article I found talking about how to be your own advocate. https://www.verywellhealth.com/how-to-be-your-own-advocate-as-a-cancer-patient-2248881 Thank you. I am really grateful.

momand2kids

For what it is worth-- I was dx 10 years ago under age 50--- TailorX trial was literally just getting organized. I came up a 26 or 27 on oncotype-which was a surprise as I had ILC--- so, we all agreed on chemo-- 4 rounds A/C-- at that time, the gray area was something like 19-30 on the oncotype and there was no mammaprint.

So, the TailorX results actually confirmed my decision ultimately--- which was a good thing! Chemo was hard, but I was able to work through it and generally live my life-- wouldn't want to do it again!

I think Tailor X is really going to change the game for so many people. I think I was possibly overtreated--but one never knows and I have never regretted the decision.

Best of luck.

JNKK

Momand2kids - it is so good to hear that you were diagnosed 10 years ago and under 50, but you are still here today. I think I am going to join the chemo train.. still waiting to see my new MO on 8/27.

ShetlandPony

Momand2kids, I'm glad TailorX confirmed your decision. I think I was possibly under-treated. I was worried because I was premenopausal, had ILC (suspected Tamoxifen might not be so good for it), had ITCs in the sentinel node (maybe actually under-rated because of ILC pattern of spread?), and my Oncotype was at the high end of the low range. But none of the three oncologists I consulted recommended anything but Tamoxifen after surgery and rads, even though I was asking about ovarian suppression and letrozole as a more aggressive treatment. One never knows. It could have been all the stupid delays on the diagnosis and treatment conveyor belt, or a sampling error on the biopsy of the other "benign" area. Or just bad biology and the recurrence would have happened anyway.

Sorry, not the topic of this thread. I'm not saying everyone needs chemo. I guess my point is, the more information the better, and don't discount your own intuition.

Thanks for the link, JNKK. I read several articles there. Good for you for doing your research. I hope your new onc will consider the two of you as a team. I love my current (second) onc for that, among other things.

Sadlynew2018

I’m so glad I found this string. I am one week post diagnosis. Finally getting my emotions (somewhat) under control to think intelligently. I was diagnosed with IDC, grade 2, 1cm ER+ (90%) and PR+(70%). HER2 not back yet. If negative, the MO said she will order Oncotype. I am scheduled for a bilateral MX the end of this month. I’m so so scared of chemo. She said I won’t need chemo only if my HER2 is negative, my nodes are negative AND my oncotype score is less than 15. The chances of all that happening is so slim. I really am thinking of lining up a second opinion just to feel ok. I’m 41.

edwards750

Sadlynew - this thread is one of many on this website that will prove helpful.

I have not heard a doctor give that kind of criteria to dodge or not chemo. Less than 15 on an Oncotype score? Actually mine was 11 but the reason I didn’t have to have chemo was because my tumor was small and not aggressive. Having a low score certainly helped.

There are ladies on this website with higher scores than that who didn’t do chemo. My guess is your age is a factor too.,Typicalky doctors prescribe more aggressive treatments for younger women.

Diane

Meow13

Just to let you know sadlynew, I had 2 separate tumors each 1cm, one ilc and one idc, grade 2 and grade 1, my mitotic rate was 1 for each of them. My er was 95% my pr was 0, her2 negative. No nodes BUT my oncodx score was 34, not sure which tumor was tested. Well I decided no chemo and I am still NED that was 7 years ago.

I just analysed all my information and wasn't convinced to do chemo I was a very healthy 53 at the time. We really need better treatment it all boils down to statistics.

I was post menopausal and think I scored high on oncodx because of the absence of pr. AI drugs are proving to be more effective than tamoxifen especially for er+ pr-. The oncodx score I received had a sample size of 651 and quoted my recurrence given tamoxifen use not AI drugs. Things to consider when deciding.

http://www.cancernetwork.com/articles/anastrozole-...

Lisey

Sadly, that's not in keeping with the guidance of the medical boards.  I was 41 when diagnosed and had an oncotype of 20.  No nodes, HER negative.  Grade 2 tumor.   most docs said since it's in the gray, it's up to me.  I had the mammaprint done as a second opinion and it said low risk.  Chemo only helps 4% for Oncotype 20s... and it has a 3% potential to harm (more for me given a previous melanoma diagnosis).. so you need to be your own researcher and weight your options.  Chemo has a lot of potentially lasting damaging side effects.. and if you are at 18.. only a 2% help...  not worth it in my opinion. 

maiyen

I just wanted to follow-up for a few reasons. First, there is a clinical trial currently going on called the FLEX Registry for patients stage I - III who receive MammaPrint and BluePrint testing: https://clinicaltrials.gov/ct2/show/NCT03053193?te... My MO mentioned it when I expressed interest in doing the test.

Second, I had to make a decision about chemo and for whatever reason not doing it did not give me a sense of relief. The clock was ticking and I could not wait until I received my MammaPrint test results back so I decided to go ahead and start chemo. I just got my MammaPrint and BluePrint results today and it's High Risk Luminal Type B.

Lisey

The mammaprint and blueprint should be used in ALL cases for intermediate oncotypes.  I'm glad you got the test and confirmed you made the best decision for you.  I also want to mention they rated my ki-67 at 30% as well.. but I came back as low risk / luminal A.   Another reason people shouldn't just believe the ki value.  Get the test instead.

Janemaria

Hi Maiyen, I am curious to know what treatment you went with