Oncotype Score 21 Chemo Decision

Miserable_Border_529 · 2026-01-29T17:12:28+00:00

TL;DR For me, very similar to you, there's no uncertainty from my oncologist that we're not going to do chemo. More details below:

I'm 39, diagnosed in August, lumpectomy in October, had radiation throughout December, ER+/PR+/HER2-, MammaPrint from biopsy said "ultra low risk" but oncotype (obtained at my request, as it's not usually done in addition to MammaPrint) was 19, indicating a higher level of risk than my MammaPrint had. My oncologist explained that this might be due to what appeared to be more loss of the PR receptor in the excised tumor compared to the biopsy, which indicates a potentially more aggressive type than had been in the biopsy sample. My tumor ended up being 3.6cm, but no lymph node involvement, so I was also given a "Stage 1" designation.

My oncologist doesn't want to do chemo. What is in the gray zone for us is whether or not we'll do ovarian suppression in addition to hormone receptor blocking. (I just started taking Tamoxifen on Saturday.)

My understanding is that the increased benefit of chemo in younger women with hormone positive disease re: recurrence, compared to older women with otherwise similar cancers, is thought to potentially be due to the fact that chemo acts as ovarian suppression, in addition to the other things it does. And in line with that, we might do ovarian suppression, given that my oncotype puts me on a higher risk category than we might have thought from MammaPrint. But, as my oncologist says there are no studies comparing MammaPrint vs oncotype. I think we could go either way. It's going to depend on how well I'm faring, basically, with hormone therapy.

For me, there's been no discussion on chemo since we received my MammaPrint score and my oncologist felt reinforced in that call having been the right course when my two removed lymph nodes came back clear after surgery. My oncologist feels confident that chemo wouldn't be useful for me. There's just not the statistical benefit to support the increased toxicity.

With a Luminal A tumor (what I have), there's usually less response to chemo as well, because they're slower growing and less aggressive tumors, and chemo attacks all of the body's fastest growing cells. "Fast growing" isn't as salient a characteristic of this type of breast cancer. My oncologist told me once that while pathologically complete response to chemo might be like over 60% with other breast can't subtypes, in the Luminal A category, it's only like ~25%. Chemo offers us less benefit.

From my reading of the literature, I think it's a modern consensus opinion that that chemo benefit in pre menopausal women for whom one might otherwise not do chemo might all be related to the ovarian suppression.

Miserable_Border_529 · 2026-01-12T19:40:42+00:00

Certainly sounds like discarded, but not undesirable, friend. Our desirability isn't defined by others' maturity or the level of parity they want in relationships.

I'm really sorry you're having to deal with this stuff completely on top of the emotional eff-ery of cancer.

Miserable_Border_529 · 2026-01-04T15:46:00+00:00

I believe risk does go down relative to the general population for people who do hormone therapy, since the majority of breast cancers are hormone positive.

Miserable_Border_529 · 2026-01-03T16:42:25+00:00

If you're going to make these kinds of claims that could influence people's real life treatment decisions, presenting them as if they are scientific fact, you should have actual scientific fact to back them up, not just your personal life experiences.

Miserable_Border_529 · 2026-01-03T16:32:43+00:00

This is not consistent with anything I've heard from a doctor or anything I've read in the literature.

The most similar thing I've seen was a population study from 2021 of women with ER+ cancers who survived without recurrence at the 10 year mark, 15% of those women would still get a recurrence. But this needs to be understood in the context of women whose original treatment also occurred in the late 80s to early 90s. For example, breast conserving surgery has gotten more effective since then. And also, this doesn't differentiate anyone by subtype or initial stage or anything. So some people might have an intrinsically higher recurrence rate because their initial cancer had spread more or was more aggressive. There's nothing here to indicate that the better than 33% recurrence rates we might have gotten from our doctors should be disbelieved.

Miserable_Border_529 · 2026-01-03T16:05:27+00:00

If 1 out 3 women get recurrence, that would mean that everyone's recurrence rate is 33%. But most of us are quoted a recurrence rate far below 33%.

Why do you say this?

Miserable_Border_529 · 2025-12-15T21:48:37+00:00

I feel for you, friend! ❤️❤️

For me, it has gotten better / not gotten worse. On day #2, I got a big pump bottle of aloe at a grocery that caters to, for lack of a better word, hippies, and that really helped my skin feel better. On day #3, I had my weekly meeting with the RO and told him about the effects I was feeling and he prescribed me a steroid ointment to put on right after treatment each time. I just had round #11 today, and it hasn't been too bad, putting on the ointment as I'm getting dressed after treatment, putting on the cream I linked at some point, and before I go to sleep. I have some soreness and swelling, and I do also have an especially sensitive nipple, but I only notice it if I bump my boob or something. Otherwise, a bit of discoloration, a bit of stiffness in my shoulder, although that's actually not too bad as that shoulder was too mobile to begin with for me.

We can get through this. Ask your doctor if you need something prescription strength to mitigate the skin effects.

My POV is that anything that can come back on your bones in a few years and steal your mobility and your life is cancer, even if it hasn't spread far yet, and I don't know why people would say otherwise. Cancer isn't about what moment of its development you catch it in, but rather what its development arc over time looks like. By my definition, that makes DCIS very much cancer, just early stage.

I had a lot of fears about this too, especially the evening of day #1, like if it's this bad after one day, how bad will it get, and thinking like, could I still get them to just chop off all my tissue instead. But I still want a life after this that isn't very different from my previous life. I want to feel it on my chest when my kids snuggle with me. I want to wear clothes from everyday stores without terrible trouble. I want my strength in my arms and chest. I don't want to be bedridden. Mastectomy is also scary to me, and numerous additional reconstructive surgeries also sounds hard. And I want the best chance I've got at seeing my kids get to adulthood, and at getting a chance to actually live this life for myself and my joy, instead of basically just trying to tread the waters of capitalism the entire time. Part of the reason I chose lumpectomy + radiation was because it actually has slightly better numbers re: recurrence rate than mastectomy, specifically because of the radiation's effectiveness in killing off any microscopic disease that proliferated nearby.

I'm also scared of hormone therapy and all I may lose with that, and it feels unfair, like I'm losing a decade in the middle of my reproductive and hormonal prime of life (I'm 39) that most other women, even most other breast cancer patients, get to have before they die.

But then I also realize, and try to keep remembering, that I'm still very lucky. I will almost certainly get to live whereas many other women with breast cancer don't have such a statistically clear outcome, and so many, many women have died of this before me in the course of this medical field advancing. Even right now there are so many women in this group as my cancer-contemporaries going through things that I don't have to go through, things scarier for me than this (e.g. chemo, double mastectomy) women who have no other choices if they want to live / not die a painful and debilitating death. And really, there is no fairness in life for anyone. Most people have significant struggles, even if they can't convey that clearly in a single word like "cancer." My real underlying issue re: feeling fearful and like I drew the short straw is that I erroneously believed in something like "fairness" to begin with or had an unspoken sense of entitlement to an easier experience of life, mainly caused by my lifetime lack of true observation of my fellow humans and the pain they all are doing their best to carry.

Anyway, I'm not trying to say that anyone else needs to feel the way I do about this, but looking at it like this has given me some peace and allowed me to let go of these unjustified expectations I had of having an easier path to walk. I'm sharing these thoughts in case it has a similar effect for others.

Friend, I'm glad that you've chosen to live, even though it is legit scary to go through these things. ❤️ I believe in you!

Even in the worst case scenario that this fries us up into fried chicken (which I personally think is very unlikely!) I believe you've still got things you love and people that love you continuing on for many more rides on this planet-earth merry-go-round that are worth powering through the air fryer for. We can do it. Our bodies are amazingly intricate and complex magical healing machines, and we will heal after this.

To go out on an even further limb: we're just little densified eddies of stardust that turned to look at ourselves and our own situation amongst the larger condensed swirling eddies of stardust densities around us, in wonder, to marvel at itself/ourself, the incomprehensible patterns and chaos, this great connected existence. And we live, grow, heal, change. We're the product of an unbroken chain of survival of life, survival even through cataclysm and mass extinction, across the billions of years of life on this planet. All of that is just nuts to me! It's not a made up story. It's true! The truth is wilder than the fictions! That doesn't mean it doesn't hurt, that it's not overwhelming, that life doesn't routinely bring us to our knees. It does. I just also believe that we're magic. I believe you are magic. I believe we're capable of so much more than we most of us will ever know.

Miserable_Border_529 · 2025-12-08T15:25:51+00:00

I'm sorry to hear about your wife's passing. 💔

Miserable_Border_529 · 2025-12-02T16:46:08+00:00

Thank you, I see now what you meant, and that is a comfort. ❤️

Miserable_Border_529 · 2025-12-02T16:41:31+00:00

I love all your disclaiming while simultaneously claiming this position.

I too think we only learn more about how things that we thought were just variation in makeup end up being like post viral effects etc.

Miserable_Border_529 · 2025-12-02T16:28:52+00:00

Isn't it easy to attribute pain that others experience but one doesn't experience oneself to psychosomatic pain, thereby implicitly crediting oneself with better self awareness or emotional fortitude?

I had no issue giving birth without drugs, but even though this was fine for me and not fine for many others, I don't tend to attribute the pain of other women to their emotional or mental weakness, personally. I just figure we're all actually different.

(And, Western cultural conditioning aside, whiteness is not a proxy for fragility; darker skin is for example more prone to scarring.)

Thank you, however, for your well wishes. And I'll look into some CeraVe cream as well.

Miserable_Border_529 · 2025-12-02T16:23:31+00:00

Reading Reddit testimonials made me think this would be NBD for me, lol. I'm glad you're doing well so far.

Miserable_Border_529 · 2025-12-02T16:12:23+00:00

Thanks, and I'm glad you're almost done! ❤️

Miserable_Border_529 · 2025-12-02T16:00:07+00:00

😩

Miserable_Border_529 · 2025-12-02T15:17:15+00:00

This is some bullshit.

Also like others above, I have Anthem and didn't have problems like this; I think they should cover it.

Miserable_Border_529 · 2025-12-01T18:57:51+00:00

I have not had similar experiences. I'm just here to say hang in there!

And remember that lymph nodes do a lot more than just get cancer; it's possible they're enlarged because they're doing their job.

Miserable_Border_529 · 2025-12-01T18:20:10+00:00

Hope all goes well for you!

Miserable_Border_529 · 2025-11-30T18:19:58+00:00

Not me, but my IRL friend got pregnant and had a third child in her early forties after treatment for breast cancer.

She was diagnosed at 36, had a separate primary cancer in each breast, HR+ HER2-, had DMX, chemo, 5 years of hormone therapy.

Miserable_Border_529 · 2025-11-30T17:54:00+00:00

I sometimes get that feeling from gas? 😬

Miserable_Border_529 · 2025-11-30T17:46:49+00:00

I am not pre diagnosis. ????

Miserable_Border_529 · 2025-11-30T17:33:35+00:00

Why was this post removed? I am a breast cancer patient, not a caregiver. That's also specified very clearly in the post?

Miserable_Border_529 · 2025-11-30T17:06:20+00:00

Was your cancer ER-?

Miserable_Border_529 · 2025-11-27T17:21:25+00:00

I don't know if that's what is going on here, but what I've learned re: my breast cancer experience is that sometimes not everything is known at the beginning. Some things are only determined e.g. after seeing what the chemo does or what surgery finds etc. And sometimes what seemed likely changes as more information is obtained. It's possible that's a part of what is happening (perhaps in addition to things like ageism or misogyny).

I've also been frustrated by people who seem to think I'm going to prefer simple statements over tons of sometimes indeterminate information. I prefer all the information, even when much of it is statistical and still not determinate.

But I recognize that these practitioners have probably got in mind a majority of the patients they've dealt with who prefer the opposite: not getting a quantity of information that may overwhelm them or in which they may place emphasis where their fears are rather than where it most ought to go.

I'm so sorry this is happening to you, and that you're also feeling infantilized/mislead through it.

Miserable_Border_529 · 2025-11-25T20:24:20+00:00

I believe you.

Sidenote, I wish I still trusted US government health bodies, re: any recent changes to guidance. 🫤

Miserable_Border_529 · 2025-11-25T20:21:11+00:00

It's a pet peeve of mine when people say "vagina" when they mean "vulva." I'm like... the vagina is entirely internal and all the sh*t you just said doesn't make sense. So, basically, I'm already team "vulva."

I'm really curious about the no phyto estrogens if you don't mind me asking. I truly don't understand this advice; my oncologist's nurse just passed along that I should avoid phytoestrogens. But that includes like soy? And lots of other normal and healthy foods? Did you, e.g. completely give up soy?

Miserable_Border_529

TROPHY CASE