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Topic: Does Oncotype apply on young women with larger tumor size?

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Apr 17, 2019 05:47PM

SoffeeH wrote:

Hi all, it's my first time post here!

It's been a month after my mastectomy, and I'm still struggling on my treatment plan, so would like to hear your thoughts!

I'm 39 yrs old, IDC, 2.9cm, Grade 2, ER+/PR+/HER2-, Node 0/2, LVI present. My Oncotype came back with a score of 16, and 4% of distance recurrence risk at 9 yrs with AI or TAM alone, and <1% Chemotherapy benefit. My MO wouldn't want me to do the Oncotype at first place since he thought my score would fall on the grey area (which it did), and he would still preferring me doing chemo anyway. After showing him my Oncotype score, he thought it's still necessary, only with lighter regimen (from ACx4+Tx4 to TCx4). I consulted another oncologist, he said no chemo with confidence, and thought using Tamoxifen with ovarian suppression would be good enough. I'm really stuck here! Since it's already 5 weeks after my surgery, I really don't want to missed the optimal time of initiating chemo if it's really necessary! Any advice or insights would be appreciated. Feel free to share if you have similar experience, thanks!!

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Apr 17, 2019 06:48PM rbreny wrote:

PH.i Soffee and welcome to this site. Sorry you have to be here but it is a great site. Age has nothing to do with your onco score. Personally I would not get chemo in your situation. You had a mastectomy and the help you would get from the chemo is small. Keep doing your research but I agree with the second oncologist. Take a deep breath, think with your head and not your emotions and truly believe that all will be well.

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Apr 17, 2019 07:08PM Beesie wrote:

Yes, the Oncotype score does apply to your situation. That said, given your young age, if possible it would be beneficial to see more than the generic results that are given to everyone, but instead see results that are adjusted to reflect your age.

While the Oncotype test is meaningful and does have prognostic value, to my understanding, the other factors that have prognostic value are tumor size, tumor grade and patient age. Genomic Health (the company that does the Oncotype test) have a computer program available only to Medical Oncologists that allows the MO to input the Oncotype score along with those 3 factors, to determine a recurrence risk figure that is more specific to the individual patient. It's called "Recurrence Score - Pathology-Clinical). A couple of people on this site have mentioned that their MOs used this program, as did my MO. In the situations I am aware of, the patients had very favorable factors (older age and/or good pathologies) and their recurrence risks ended up being significantly lower than the Oncotype score alone would have suggested. I don't know if this program is also used on patients who are younger and who therefore might end up with a higher risk than indicted by the Oncotype score alone, but I think you should ask your MO about this. Perhaps he has already run the program, which might be why he is recommending chemo. If not, perhaps he can run this program for you (or explain if it is not applicable or appropriate in your situation).

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 17, 2019 07:49PM Cpeachymom wrote:

soffee- you can see from my signature stats that I had a similar decision. In fact my mo wanted chemo and wouldn’t run the test. It was my second opinion who ran the test (score 14) and then recommended no chemo. Because of the positive node, I did do rads. MO still wanted “chemo lite”, I opted out. You have to make the decision that’s right for you and that you can live with. There’s no crystal ball and no guarantees, even with chemo. I’m comfortable with my decision, but OS plus Tamoxifen is no joke! I’m prepared to stick it out. It’s my insurance.

Best of luck to you!

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/17/2017 Lymph nodes, Chest wall Surgery 10/9/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Apr 17, 2019 07:51PM Sara536 wrote:

Don’t forget that chemo can cause harm to healthy tissues as well as cancer cells. My understanding is that the oncotype score helps to determine if it might cause more harm than good. Getting chemo “just for good measure” could cause unnessary lasting side effects. I suggest you get a third opinion or talk to a nurse navigator to get a better understanding.of oncotype. Unfortunately, with this disease we have no guarantees.The elephant in the room is that oncologists get paid well for prescribing chemo and that can unconsciously affect their judgement. I found a long article written by an oncologist about this so it s not just my admitted paranoia.

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Apr 17, 2019 08:08PM - edited Apr 17, 2019 08:11PM by buttonsmachine

Can you see an oncologist at an NCI designated cancer center, if you haven't already? I'd trust that opinion more. In my experience those centers are more familiar with how to treat breast cancer in younger women - it is a little different for us.

As for chemo, it must ultimately be your decision. If there truly is only a 1% benefit to doing chemo, it might not be worth the potential damage that chemo causes. On the other hand, if you're more comfortable knowing you did more treatment, that's also a a factor.

I did a lot of chemo, and sometimes it didn't even work well, but it did cause some lasting damage. It's a hard situation, but I hope you find some answers here. Best wishes!

Diagnosed at 32. Local recurrences in the skin, and now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Apr 18, 2019 03:59PM SoffeeH wrote:

Hi Beesie,

Thanks for your info, they are so helpful! As I know that the mean age of TAILORx trial was around 55~58 yrs old, and the median tumor size was only 1.2 cm, that's why I feel worried that it may not apply to my situation. My MO only used and showed me the result from Predict site by University of Cambridge, and I guess he is more concerned about my age, tumor size and grade regardless of the Oncotype result, but I'll ask him about the Recurrence Score Pathology-Clinical (RSPC) tool for sure, I didn't know they are exist until now, thank you!!

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Apr 18, 2019 04:15PM SoffeeH wrote:

Hi Cpeachymom,

We really do have similar diagnoses! I wish I could be as decisive as you. And you're right, there's really no guarantees, and we just have to be comfortable with our decision. I've heard that OS plus Tamoxifen is a long journey too, but they yields way more benefits than we thought!

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Apr 18, 2019 04:22PM SoffeeH wrote:

Hi Sara536,

That's the thing I'm worried, the long term side effects of chemo! Even with the light does, I don't even know if they could outweigh the benefits :(

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Apr 18, 2019 04:38PM SoffeeH wrote:

Hi rbreny,

Thx for your message. I think you have quite similar thoughts with my second oncologist, he thought I don't need to worry much about LVI since I had mastectomy with 0 node infected. I will try to clear up my mind and not to let emotion making the decision.

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Apr 18, 2019 04:52PM moth wrote:

I think if I had results like that I'd want to get the Mammaprint test done as well as Oncotype.

I'd also spend a lot of time on the Predict website looking at the charts and stats with the various options and meditating on what I value and how I think about things.

fwiw, I didn't have to make this choice with chemo but I had to with tamoxifen/AI as I'm only very slightly ER+ and there is a lot of confusion about whether hormonal tx helps people in my boat or whether risks outweigh the benefits. There are things for which we just don't have a lot of data and we have to be ok with a fair bit of uncertainty, as well as considering how much you can modify your other factors (diet, exercise, alcohol, smoking, stress).

Once you make a decision, don't look back. Just leap in and don't look back at all. Whatever happens in future, you'll deal with it then.

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Apr 18, 2019 05:45PM SoffeeH wrote:

Hi buttonsmachine,

Thx for your suggestion. I'm sorry you had gone through those chemo. Just thinking ever since being diagnosed, the decision making seems to get tougher and tougher. You're right, either way it's ultimately my decision, I shouldn't let fear interfere my decision.

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Apr 18, 2019 07:45PM Beesie wrote:

Soffee, here is more information about the additional Genomic Health tool (RSPC) that some Oncologists use to assess and personalize Oncotype scores:

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Apr 18, 2019 11:09PM TomMorrow wrote:

Thanks for posting those links. My wife went for a second opinion at an NCI cancer center and he used the RSPC when evaluating whether she should do chemo or not. Her Oncotype score was 23, with a 15% recurrence risk. He said that, based on the RSPC, we should really be thinking of the recurrence risk at 5% if she took an AI (and 6% with Tamoxifen). Her primary MO also agreed with relying on the RSPC percentage. I never understood why the Oncotype score doesn’t just factor in the additional information, to get a more personalized view based on tumor size and grade.

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Apr 19, 2019 06:34AM Monl wrote:

I understand your worries about your treatment plan.

I had 3 tumors, biggest 1.9. But with micromets. And LVI. I am on Tamoxifen since my mastectomy in august. January I took my ovaries out( own initiative) and in november I did rads 15 times. There was no way I could get chemo-of course at some point skipping chemo made me feel like I was in danger! I had 2 grade one tumors and one grade 2. My oncologist said: you will not benefit from chemo.

Good luck on your decisions dear,


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