Treatment decision for oncotype score of 23, premenopausal

Blue_Heron

I need to decide whether or not to have chemotherapy. My pathology is: IDC, ER+ (strong), PR+ (weak), HER2-, 2.2 cm tumor, Grade 3, negative lymphnodes. My oncotype score is 23 and I am 36 years old. I had a lumpectomy on 8/10/21.

I met with my medical oncologist today and he said that my case is "on the fence" for needing chemotherapy. He talked to me about research studies including the TAILORx study and studies looking at ovarian suppression for premenopausal women. He said that his feeling is that the reason why premenopausal women with an intermediate oncotype (under 25) score saw a benefit from chemotherapy in the TAILORx study was because the chemotherapy caused ovarian suppression. Therefore he thought an ovarian suppression drug in addition to Tamoxifen would be sufficient for me instead of chemotherapy. He then immediately followed that statement up with saying that if I was someone who wanted chemotherapy, then he would consider chemotherapy. We had a lengthy conversation about the option of chemotherapy or no chemotherapy and he said several times that my case is "on the fence" for chemotherapy and therefore the decision largely falls to me. I am feeling very confused. I asked him what my risk of recurrence was with these options and he said my risk with ovarian suppression drug plus Tamoxifen and no chemotherapy was 7% and my risk with chemotherapy plus ovarian suppression drug plus Tamoxifen was 5%. A part of me is feeling that it would be a mistake to not do a treatment that had any chance of preventing recurrence. But I also don't want to do chemotherapy simply because it was presented as an option, even if it's not the best option. My oncologist is at a highly ranked cancer institute and I really respect his knowledge and I trust he's well aware of the most up-to-date research and I want to trust his opinion. However, I feel like he hasn't given me a clear answer of what the best option is. My plan right now is to call him on Monday to make a decision, and he also gave me his email address in case I had other questions.

I am wondering if others have been in a similar situation? What information did you use to make your decision? Is there anything you wish you had known beforehand or wish that you had done differerntly?

ARmom4

My MO was also on the fence about chemo for me. I think he used that exact phrasing too! With Stage 1A, triple positive, one would think no chemo. Especially because I also had a BMX. Then there's the fact that I was 35 at diagnosis, so we have many life years left for a cancer to return or to develop a second primary. My doctor consulted with the Mayo Clinic and they recommended chemo. I made the decision to do it because of the life-years explanation.

You had a lumpectomy, so you still have breast tissue left. Also, your IDC was bigger than mine. Mine was only 3mm with some DCIS. So, some factors to consider. Regardless of what decision you make, don't be so hard on yourself! Cancer is hard!

moth

Blue_Heron,

Has your doctor run the RSClin score? That takes the oncotype, your age, the grade of the tumor & the size of the tumor and recalculates risk. Beesie talked about in this post https://community.breastcancer.org/forum/85/topics...

I would ask the dr to run that if they haven't.

But here's my 0.02 without the RSClin

based on: age, grade & the weak PR, I would lean heavily to chemo. But full disclosure, I almost always lean to chemo. Someone has to really convince me chemo is a net likely harm and I just don't see it here. Weak and neg PR has its own issues which we don't really understand but these cancers can be driven by things other than hormone.

If you're not feeling able to make this decision, I'd reach out for a second opinion, esp with an oncologist who deals with cancer in young women.

You only get one kick at this. There is only one opportunity to wipe out any stray cells.

You can see some of the numbers from TailorX here: https://ascopost.com/issues/august-10-2018/how-to-...

See Table 3: 9 year distant recurrence free goes from 86.9 to 93.4 with the addition of chemo to endocrine therapy.

I'm not sure where your doctor got their numbers from because they do not seem to match TailorX?

One other thing you might want to look at is just forgetting about Oncotype....when it wasn't available, just a few years ago, we used large data sets to estimate benefits of various therapies. You can enter your stats into predict and see how it plays out (you'd likely be getting 3rd gen chemo so click that box btw) https://breast.predict.nhs.uk/tool

Difficult decision for sure. One last thing: how will "future you" feel? Are you more likely to regret negative side effects from chemo which might not be necessary or are you more likely to be really regretful of not having done chemo if worse comes to worst and you recur? I threw everything I could at it & still recurred but for me that was important - I have no regrets, I did *everything* I could. ... I hope you come to a decision you feel comfortable with. It sucks when it feels like we're stuck making decisions which really we're not trained for and yet, they fall to us...

Blue_Heron

Thanks for your replies!

ARmom4, you're right that there's many future years to consider for the cancer returning, and that definitely seems like a factor to consider in the decision.

Moth, those are helpful links, thanks! I think it's very possible I misunderstood what he told me about recurrence rates, so I think I'll ask him exactly what he meant. I didn't know about the RSClin score, but that sounds like a good idea too.

It seems clear that there could be some benefit to chemotherapy in my situation, which feels a little more solid than the hypothesis that the benefit is just because of ovarian suppression- even if that hypothesis is correct, it doesn't sound like it's proven right now.

ToutVaBien

Hi Blue_Heron,

I was in the same boat as you just a few weeks ago. I am 36 with Oncotype 21, ER+, PR+, HER2-, node-negative, multifocal IDC grade 1 (largest mass 2.9 cm, multiple foci of IDC intermixed within DCIS spanning 8 cm). I was in tears for two weeks up until I did the actual TCx4 chemo because I wasn't expecting chemo at al (let alone losing my hair). My diagnosis and chemo recommendation came from a well-known top-ranked institution as well. I'm about 2 weeks into chemo. So far, not too bad. No hair loss yet, but I'm cold capping. Hopefully it'll work. Anyway, few things to consider:

How would you feel if you didn't do chemo and there was a recurrence? How would you feel if you still did chemo and there was a recurrence? It's important to take into account your emotional/mental health moving forward. I know this was especially important for me when deciding with my treatment. Do you have family history? Can you get a second opinion? (I was able to get several second opinions due to my case being very confusing. It was presented among several MDs in a tumor board, where they all unanimously agreed with the TCx4 regimen).

In my personal experience as a health care worker in radiology, I've seen so many younger patients with breast cancer and so many recurrences among postmenopausal women who've had DCIS/IDC at a younger age despite surgery and medication. This background experience kind of prompted me to do chemo. However, everyone's case is a little different.

I hope you decide what's right for you. Wishing you the best of luck with your decision!

kathabus

Chemo was "on the fence" for me, too....but for different reasons. I was premenopausal with a positive lymph node. It's very hard, because the decision does ultimately fall on us. My MO leaned toward my "chemo" being ovarian suppression with an Aromatase Inhibitor. I did decide to forego chemo and take this route. (I had an ooph/hyster instead of doing ovarian suppression.) Between going into menopause, taking an AI and having aggressive radiation, I felt good with my decision. BUT.....I had a very low Oncotype score of 10.

In YOUR situation, I think a second opinion would be very helpful. The part of your diagnosis that causes me pause is the weak PR and Grade 3. I would want to really talk that part out with an experienced MO before ditching chemo. Not saying that absolutely warrants chemo.....but that needs to be talked through.

Good luck with this decision. We're here for you if you need to talk this through some more. It's hard! Hugs to you.....

Blue_Heron

I talked more with my oncologist, who talked more with his colleagues, and he now recommends chemotherapy, then ovarian suppression with the Tamoxifen after radiation. This recommendation feels in line with everything else I was reading and hearing, so that's my plan now. I'm glad he continued to talk to other colleagues. I'm surprised how much it upset me to feel like I was the one making the decision.

ToutVaBien, thank you for sharing your experience. I'm sorry that you're going through this difficult time too. I've spent a lot of today crying as the talking about scheduling the chemo made it feel much more real. This is definitely an emotionally exhausting experience!

kathabus, thanks for your reply too! I hope you're doing well with your treatments.