My score was 16. The printout said my risk of recurrence was 4% and chemo benefit was <1%.

But then the latest TAILORx results (which are the basis of the Oncotype % in the low and intermediate ranges) came out. Adding my age and clinical risk, my new stats were ~12% risk of distance recurrence in 9 yrs, and an absolute chemo benefit of ~6%.

I also asked my MO to do my RSPC score and it said 13% chance of recurrence.

All of that added up to more risk than I wanted, so I did 4 rounds of TC. I'm happy that I did everything I could.

How much we should trust Oncotype for ILC is another question. See the threads here about LobSig.

LobSig looks good, but one thing I note is that 5 people died within 8 years who were considered low risk. Four of those were considered high risk by Oncotype testing, and the fifth was considered low risk by both.

I think LobSig could mean that far less people are overtreated, but 4 would have died potentially from being undertreated versus with Oncotype.

https://www.nature.com/articles/s41523-019-0113-y

It will be exciting to see how this develops and is refined over time.

Yes, LobSig is not available, and may need more work. My point in mentioning it, and this is just my opinion, is that since Oncotype has been validated mostly with women who had IDC, perhaps we should pay particular attention to clinical features and age, and err on the side of caution, in cases of ILC.

I think the source of that idea is a study that showed not as many compete pathological responses to chemo in ILC compared to IDC. But that does not mean no response. In addition, it is apparent that advanced ILC often does respond to chemo. To further complicate matters, there is the idea that some or all of chemo's benefit for younger women with ER+ Her2- bc could be that it suppresses ovulation (chemopause), and not the cytotoxic effects per se. Another thing to consider is that we have data that seem to show at least a subset of ILC may be de novo resistant to tamoxifen, whereas the aromatase inhibitors are more effective. I will refer you to the web site of the Lobular Breast Cancer Alliance where you can read articles and see a list of medical journal articles. Lobularbreastcancer.org

If you were to do ovarian suppression plus an aromatase inhibitor, that would be considered more aggressive than just tamoxifen, and less aggressive than chemo. Keep asking questions, make your oncologist work hard, and come up with a plan that is tailored specifically for you.

MikaMika, You didn't say anything about your node status or lymphovascular invasion. I'm guessing it's negative because your report had an actual quantification on it. The node positive reports do not report a number because the studies are still ongoing so they just say "no apparent benefit". I'm Oncotype 15, 54, pre-menopausal, pleomorphic ILC, with lymphovascular invasion and extra-nodal extension, 2 positive nodes, 3 mm and 2mm, Ki%=18. Although Oncotype says "no apparent benefit", this all added up to chemo in my mind. I had one dr. say I don't know, one say definitely NO chemo (she is involved in Oncotype studies and said I have a low miotic score). I was uncomfortable with this so went to Sloan for another opinion and they said definitely YES to chemo (due to ongoing studies not yet finished and my other features described above). How could 2 drs. have such different polar opposite opinions? To be honest, I totally respect the dr. that said I was in the gray area and I don't really know, because you can't be sure. I started chemo on Monday. Sloan also seems to really like CMF for "lower risk" people. Our CMF string is mostly recommendations from Sloan. That being said, if you are node negative and Oncotype 11, it's another tough one. I don't know how children factor into the equation. If you want to have children, maybe you don't want ovarian suppression.

Thanks OnTarget and Shetland Pony for your help in my decision process!!!

When I lived in WI and first dx, my then second oncologist (fired the first) also stated what ShetlandPony said: Most of the european countries that opt to give patients chemo and have better outcomes is due to the ovarian suppression from the protocol (he is British).

MikaMika, The decisions in this process are so hard. I'm sorry you also have to factor in children. I had mine late, 39 and 41, no problem getting pregnant (overly hormonal, I thought it was a good thing.....) If it is important to you, than maybe get another opinion. Maybe chemo and radiation, break to have children, than AI? Or freeze eggs and get a surrogate? I struggled with getting another opinion until the time was right. When I didn't like what I was hearing it was time, and my MO was very supportive. I got two additional opinions. It was my BS that I hated. That support prompted me to go back to him. I'm not surprised yours doesn't like CMF. It appears to be a Sloan and CA thing. Everyone else is doing TC. I have some worries about that, but decided to trust the Sloan recommendation as they are #2 in the country. The risks for permanent side effects are lower with CMF. And supposedly I won't lose all my hair, yay!

I started Monday. I just posted the details at: CMF treatment survivors and experiences. The brief summary is, I had a few pretty crappy days this week, but feel pretty good today, day 7. I've been shopping all day. I'm prone to nausea and thought for sure I'd be really nauseous. But I wasn't. I think they overmedicated me and my worst side effect was medication withdrawal and insomnia.

Hi, Mika, I just got my Oncotype test results today, it was 10. Neither of the 2 med oncs are recommending chemo. I am 59 and had my kids. I agree with other posters - get a second opinion on any matters that are in your personal "gray" decision making zone. I saw 3 surgeons, they all said different things. The 2 med oncs are not differing on chemo, but they have diff preferences for which AI to start me on.

Dreamer Me to regarding info on different ais

Mika thanks! Not the worst case scenario but still not up for working for going out the first week much and can’t even relax in bed due to jitters and insomnia so still sucks. Second week was fine.

Mika,

From the standpoint of tolerance, which is best depends on the person taking it.

If you read the board, you'll find that there are people who started with Letrozole (Femara or generic) or with Anastrozole (Arimidex or generic) or with Exemestane (Aromasin or generic) and did well. Then there are others who started with any of the three, had quality of life side effects, switched to one of the others and did well. There are some people will tolerate any of the AIs well, and other people who will have trouble tolerating any of them.

For those for take the generic versions, sometimes one brand of generic is more tolerable than another brand of generic, for the very same drug.

From the standpoint of side effects, again it depends very much on the individual, but here is a comparison from BCO:

https://www.breastcancer.org/treatment/hormonal/comp_chart

And here are comparisons of Anastrozole vs. Letrozole, and one of Aromasin vs. Anastrozole .

From the standpoint of effectiveness and toxicity, the results seem to vary depending on the study. Generally all 3 AIs perform about the same.

Here are a number of studies that have compared the effectiveness of the AIs:

Adjuvant anastrozole versus exemestane versus letrozole, upfront or after 2 years of tamoxifen, in endocrine-sensitive breast cancer (FATA-GIM3): a randomised, phase 3 trial (2018)

• "5-year disease-free survival was 90·0% (95% CI 87·9–91·7) with anastrozole (124 events), 88·0% (85·8–89·9) with exemestane (148 events), and 89·4% (87·3 to 91·1) with letrozole (129 events; p=0·24). No unexpected serious adverse reactions or treatment-related deaths occurred."

.

Do all aromatase inhibitors have similar efficacy and safety? (2017)

• "Letrozole is a more potent inhibitor of aromatase than anastrozole at their conventionally used doses, and leads to more complete inhibition of whole-body aromatase. Geisler et al. reported that mean percentage aromatase inhibition with anastrozole was 97.1%, whereas more than 99.1% suppression of aromatase enzyme was observed with letrozole in standard treatment doses"
• "In a randomized Phase III MA.27 trial (NCT00066573), the efficacy of
  steroidal aromatase inhibitor exemestane and nonsteroidal aromatase
  inhibitor anastrozole for 5 years in the adjuvant hormonal treatment of
  hormone receptor-positive postmenopausal early breast cancer was
  compared [7].
  Total of 7576 patients were enrolled in this first comparison of
  steroidal and nonsteroidal classes of aromatase inhibitors trial, and
  the primary outcome 4-year event-free survival (EFS) rates were similar:
  91% for exemestane and 91.2% for anastrozole in the initial adjuvant
  therapy of hormone receptor-positive breast cancer with a median
  4.1-year follow-up (HR: 1.02; 95% CI: 0.87–1.18; p = 0.85). In a recent
  published randomized Phase III Femara Versus Anastrozole Clinical
  Evaluation (FACE) trial (NCT00248170), Smith et al. compared the
  efficacy and safety of adjuvant letrozole and anastrozole in
  postmenopausal patients with hormone receptor and node-positive early
  breast cancer [8].
  A total of 4136 patients were randomized and 5-year estimated
  disease-free survival (DFS) rates were 84.9 and 82.9% for letrozole and
  anastrozole arms, respectively (HR: 0.93; 95% CI: 0.80–1.07; p = 0.31)."

.

No Efficacy Difference Between Adjuvant Letrozole and Anastrozole in Postmenopausal Women With Early Breast Cancer (2017)

• "The 5-year estimated disease-free survival rate was 84.9% in the letrozole group vs 82.9% in the anastrozole group.....The 5-year estimated overall survival rate was 89.9% vs 89.2%"
• "The most common adverse events of any grade in the
  letrozole vs anastrozole groups were arthralgia (48% vs 48%), hot
  flushes (33% vs 32%), fatigue (17% vs 17%), osteoporosis (11% vs 11%),
  myalgia (11% vs 10%), and back pain (10% vs 9%). The most common grade 3
  or 4 adverse events were arthralgia (3.9% vs 3.3%), hypertension (1.2%
  vs 1.0%), hot flushes (0.8% vs 0.4%), myalgia (0.8% vs 0.7%), dyspnea
  (0.8% vs 0.5%), and depression (0.8% vs 0.6%)."
• "Adverse events led to discontinuation of treatment in 15.1% vs 14.3% of
  patients and dose interruption or reduction in 8.2% vs 7.7%. Serious
  adverse events considered related to treatment occurred in 2.6% vs 2.3%.
  Death occurred in 2.0% vs 2.2% of patients; causes other than disease
  progression included cardiac failure (six vs two patients), pulmonary
  embolism (two vs four patients), and chronic obstructive pulmonary
  disease (one vs four patients)."

.

Differences between the non-steroidal aromatase inhibitors anastrozole and letrozole – of clinical importance? (2011)

• "In addition to being the most potent non-steroidal AI, letrozole is the
  only AI that has demonstrated superior efficacy in both the neoadjuvant
  and adjuvant settings compared with tamoxifen. A significant reduction
  of early DM in the adjuvant setting has been shown with letrozole, and a
  survival benefit is emerging with longer follow-up in the BIG 1–98
  trial. In contrast, 100-month survival data from the ATAC trial do not
  demonstrate an OS benefit for anastrozole vs tamoxifen."

.

What it comes down to is that different MOs have different preferences, possibly depending on which study they read last or which study sticks in their mind most. There is really nothing out there that says that one is any better than the others, or that one will be more easily tolerated. It's all a question of how your body reacts to one vs. another.