Low Oncotype score VS Pathology findings

Kaimana

Hi everyone, I have been referring to this site for insights and stories of others, over the past months since my diagnosis back in January. This is my first post (hope I am posting in the correct place!).

I was diagnosed January 19th, 2016. I am 41yrs old. 3.8cm, Grade 3, Extensive lymphovascular invasion, clear nodes and margins. Right from Day one there was confusion as to whether I had one large mass, or if there was a large one, and a 2nd smaller one right adjacent to the larger one. In the MRI imaging there appeared to be a separate smaller mass, but in ultrasound imaging it appeared to be one mass, and that extra "thing" was concluded to be just a part of the main mass. They went ahead with surgery believing the ultrasound imaging.

Thanks to one of my radiologists, a post-op MRI was recommended, to get a new imaging baseline, and to make sure everything had been removed.

Unfortunately, rather than wait for the MRI results (my doctors were not expecting to see anything), I started radiation treatments and had just completed my forth, when my oncologist contacted me to tell me that extra "thing", extra small mass was still in there... it could be seen in the post-op MRI. Needless to say, I nearly fell off my chair when I heard this. Because I had already begun radiation treatments, they didn't want to interrupt this treatment, and decided the best thing to do was to complete the rad treatments, then give my body about 6-7 weeks to recover before getting surgery to remove this extra small mass - which at the time, they believed to be a mammary lymph node - which, it turns out it was *not* a lymph node, but another mass, that was 1.3cm. Had I not already started radiation, I think my surgery for this 2nd mass would have happened very soon after discovering it in the MRI.

When all of this began, my oncologist said I was in the "grey zone" as to whether I would benefit from chemo or not, but given the pathology findings, all of my doctors were quite certain that I WOULD need chemo. Still, she suggested we get an Oncotype test done to help us decide. My score was very low, it was an 8. All of my doctors were shocked it was so low, given my pathology findings. Because of the low score, my oncologist said "no chemo". I was blown away, so relieved, since before receiving this score, everyone was so certain I would need to do it.

My doctors have repeatedly said that my case has been "complicated". They have also repeatedly said how "complex" my imaging is. All of them have said this... not exactly something a patient wants to hear hey! But I appreciate their honesty.

After my 2nd surgery, because of the complications throughout my treatment etc., they held a conference review to discuss if there is anything further that needs to be done or not.

Summarized.... the oncologists were completely divided in their opinions as to whether I should now get chemo or not, something I had no idea would be on the table again. My oncologist said there is a "huge discrepancy" between my surgical findings and the low onco score. At the conference review, half of the doctors said yes to chemo, and half said no.

We have decided to get an Oncotype test done on the 2nd smaller mass that was removed in July, to see if the score will come back the same as the first. Even if it does come back low though, it is a question of whether I believe this test or not.

Quite honestly, the more stories I read from other women who also had low scores but despite that, had a recurrence has left me, personally, not having a lot of faith in this test. The more stories I read, the more it all seems to be a guessing game and a crap shoot.

Another thing... they are uncertain as to whether or not the 2nd smaller mass was connected to the larger 3.8cm mass, or if they were entirely separate. I had clear margins from both surgeries, so I don't understand why there would be this confusion as to whether they were connected or separate. My doctor has asked the pathologist to try to investigate this and make some conclusion. (I guess if they were connected, then they might add those numbers?)

Anyways, at the earliest, we are likely to receive the 2nd onco test results this week.. at the latest, next week. Still, at this point I am feeling as though I should just do the chemo to at least say, I have done everything possible to fight this. Oncologist said if I opt to do it, she would 'just' give me 4 rounds.

Thank you for hearing my story... my health timeline of events is a bit loopy, I hope I have explained things clearly, apologizes if I haven't. I am wondering if there are many out there who were in the same boat as me... with a low onco score but had more aggressive pathology features?

KathyL624

Sorry to hear about the confusion. It does seem incongruous. Was your mitotic rate low? Does the second mass have the same pathology

KathyL624

It is also concerning to me that if these masses were so close they weren't sure if it was one or two, your surgeon did not remove the second during the first surgery? Maybe you can find out? Also it seems like a second opinion would be very helpful here

MelissaDallas

Kathy, they thought they got all of it on the first surgery, but MRI showed they did not. No different than lumpectomy having unclean margins. It happens all the time

Kaimana

Hi KathyL624, thank you for replying.

I just updated my profile to make my diagnosis and pathology features public..

The 2nd smaller mass was basically 'overlooked' in the beginning. Under the MRI imaging, it looked like a 2nd one was there, but they could not see it with the ultrasound. So they believed the ultrasound (in the beginning, before my first surgery). The 2nd mass is also ER+PR+ (but they were not able to discern if it was HER2- because of the radiation I received).

I just looked at my pathology report - I see my mitotic rate was "score 3". I honesty don't even know what that means. (I had assumed it was related to the Grade of the tumor).

TarheelMichelle

"Still, at this point I am feeling as though I should just do the chemo to at least say, I have done everything possible to fight this."

Chemotherapy is not always the most successful treatment for breast cancer. Breast cancer can return; it returns often. Take a look at the Stage IV forums and look at the bios to see how many women had chemo, then a recurrence, sometimes only months later. .

There are other ways to decrease the chances of cancer returning. The harshest treatment is not necessarily the one that will keep you alive the longest.

This is a stressful situation However, you are in the midst of treatment You have had the major portion of the cancer removed and your tissue is now being radiated. You are moving in a positive direction Best wishes

beebs2704

What a stressful and difficult situation for you. I have seen a number of others on here who also had the Mammoprint test for additional information. With a grade 3 tumour and a mitotic score of 3 would usually assume a higher Oncotype score but maybe not. These tests can't predict 100%. If it were me, I would go with the oncologist's recommendation

Kaimana

@ TarheelMichelle (Ronda), thank you so much for responding, and for taking the time to give me your perspective. Yes, that is completely true, and a sobering thought.. that the chemo might not even have an effect. I am running laps in my mind, going back and forth on my decision everyday. Maybe the results from the 2nd Oncotype score (which might come back this week) will offer a bit of clarity. thanks for your good wishes.... my best to you too! Cheers x

@ beebs2704, Thanks so much for your feedback, I really appreciate it. Because of the low score (yet grade 3 and vascular invasion), my oncologist said she wondered if they sampled the correct area of the tumor, (I guess she meant the most active part of the tumor). Pretty sure my oncologist is leaning toward me doing 4 rounds of chemo... But at the conference review all oncologists could not agree.. Half said yes, do chemo, half said no.. If the experts can't even come to a conclusion, how am I suppose to!? Yes, I agree, these tests are not 100%.. Thanks for your help!! x (I see you're starting chemo on the 16th, wishing you the best, hope all goes well for you!!)

bluepearl

With extensive LVI, a grade 3 tumour, that size, I would recommend you have the chemo despite the oncotypeDX score. Being node negative doesn't mean rogue cells haven't come off the primary tumour, especially since you have LVI that is extensive (rather than focal). I haven't a clue what those oncologists find confusing. One test shouldn't out rank what has been traditionally seen as an aggressive(grade 3) and large tumour (3cm), that has had access to lymph nodes (which it could by-pass) and the blood stream (through which circulating tumour cells could have gotten away). Gee....I even wanted chemo for my small tumour because of the grade 3, didn't have oncotype because oncologist said not needed, I now say BS to THAT, and now worry I didn't do everything I could have....another oncologist agrees with me. Hope you get really good advice soon.

lkc

there are a lot of gray zones with BC. However , I don't know of one single person who opted out of chemo, then recurred and did not regret their decision.

Chemo is not fun, but it is often our best option, not to have the beast return. There are never any guarantees.

I wish you well

Fe_Princess

My oncologist told me that I was high risk (36%) and needed chemo right away. My surgeon had told me since I had no node involvement that I wouldn't need chemo. I then got my oncodx score 15 and I opted not to have it. I was moving to Switzerland too. My oncologist over here told me that I wouldn't need chemo either. I just found a lump in my unaffected breast. Who do we believe? Should I put my life in the onco sceore. I feel crazy with it sometimes. I am sorry that you are in this situation too. All of us.

elimar86861

The mitotic rate IS one of three factors in determining the Grade. A mitotic rate of 3 signifies the most rapid rate of growth. Since rapidly dividing cells are the most susceptible to chemo, this certainly should be a consideration when you and the doc discuss chemo. While your Onco score came back low, I agree with the person who wrote that that the low score should not override all of the other indications that point toward you doing the chemo. Personally, although I am usually a less is more person, I would probably do the 4 rounds (and that is the least given as treatment) if I had the pathology that you have. Afterward, you will have a second line of defense by going on an anti-hormonal drug. In that way, you will cover as many bases against a recurrence that you can. That is about all a person can do. And stay vigilant.

By the way, with clean margins on each surgery, logic does seems to point to them being separate.

Hopeful82014

Fe Princess - I 'm sorry you're on the roller coaster again. I hope you can get that lump checked SOON and that it's completely benign.

Fallleaves

Hi Kaimana, this recent study involving mammaprint seems like it might be applicable to you (I don't know if you've already made a decision, but thought I'd post.)

The finding was that in women with early stage breast cancer, a low genomic scores on mammaprint, but high clinical risk scores, getting chemotherapy only reduced risk of distant recurrence (after 5 years) by 1.5% (96.2% of those getting chemo were distant recurrence free, while 94.7 not getting it were.) http://www.nejm.org/doi/full/10.1056/NEJMoa1602253

So, maybe you need a second opinion test-wise, too. You might want the extra little edge, but keep in mind, chemotherapy does come with risks.

It might be helpful to see if the doctors can give you an idea of the additional benefit that chemo would give you over hormonal therapy and radiation. I think those two things give you the biggest bang for the buck (in early BC), anyway.

Fe_Princess

Kaimana, what was the result from your 2nd onco test?