Waiting on Oncotype score and anxious

I don't yet have an Oncotype score and am very curious myself. My dx is similar to yours pepper44, except I chose mastectomy. Just found out today that no lymph node involvement and clear margins, but won't find out more until post op appointment on Monday. My doctor hasn't mentioned oncotype score at all, so that's definitely on my list of questions. I hate all this waiting and worrying too. It's helpful knowing others have the same worries, questions. Good luck!

Hey Pepper,

I had a very similar pathology and my doctors told me they did not expect my oncotype score to be high. They also told me that my treatment plan would be radiation and tamoxifen. It came back low, and they felt that this affirmed the lack of chemo and AI despite my relatively young age.

That said, there is a possibility it will come back high. That possibility is exactly why they do the oncotype test instead of just relying on the stats from pathology. There is a small subset of women whose cancer gets great benefit from chemo despite 'appearing' less aggressive based on pathology. It might also influence a doctor to encourage OS+AI rather than tamoxifen.

The only way to know, right now, is the oncotype. So there is at least a possibility of chemo. The doctors are not expecting it, clearly, but they also want to cover their bases and be prudent, so they are holding off on a final decision until the oncotype comes back.

Hi Pepper44, I was in a similar boat, but my tumour grade was higher. My cancer had some non-aggressive features and a some more aggressive features (like the tumour grade). All conversations with the surgeon and the oncologists were that we thought my score on the oncotype would be low and that the worst was behind me, but of course no promises were made. I definitely prepared for the worst and hoped for the best when I went in to discuss results so that I wasn't surprised if we had to talk about chemotherapy.

So my score was 25, very middle of the pack, and due to my age (just turned 50) we decided that there was a benefit to going through chemotherapy. I want to do all that I can to reduce the chance of recurrence with no regrets. So started on April 16, I will have my second round of TC next Tuesday and will be 50% through the chemo

So, I would prepare yourself that chemotherapy might be part of the conversation.

Here's hoping that you get a low score!

Pepper

the waiting is the worst... Prepare for the worst, hope for the best is great advice. My oncologist told me not to worry about wigs-- all docs thought my oncotype would be low... but I figured that I would prepare anyway--went to the wig place and checked it out-- had some of my friends research chemotherapies---I am a worst case scenario girl--so it was very comforting to work all these details out. I had a very positive prognosis. My onoctype was back before the Tailor X trial--- so my score was a 26 or 27--- the dreaded gray area-- which meant I really had to make the choice. My kids were young, I was young and healthy-so I went for it.... and I have never regretted it once over the past 10 years. Yes it was hard, but I was able to work, still live my life. And I barely remember it now-and more importantly, when the Tailor x trial results came out, turns out I made the right decision!!!

You will handle whatever you have to when it comes. It is hard not to worry about it--so if you need to prepare "as if" I would say go ahead.... get the info about wigs, chemo, whatever else will help you out. Or, in the alternative, ignore all of that and act as if there will be no chemo (and literally about 70% don't need chemo (I think!). So odds are in your favor. Do whatever is going to soothe you during this challenging time.

good luck

There's really no way to predict - that's really the whole thing with Oncotype: it's looking down to gene by gene level analysis, stuff we can't tell from just looking at the cells or how it manifests in the body.
I wanted chemo from the start so that's a different way of looking at it. I wanted to do *everything* possible and the only way I would have skipped it was if my Oncotype came back clearly indicating that chemo would not not have any benefit (& even then, I probably would have tried to argue with the MO lol)

Maybe prepare yourself for having chemo and if it ends up not being necessary, it will be a nice plan to just move straight to rads.

Chemo wasn't pleasant at all & I had complications & side effects & ended up hospitalized etc, but I'd 100% do it again if I had to. Chemo these days is not like it's portrayed on tv in the old movies in the 80s and 90s. It is a lot more manageable.

hang in there - the waiting sucks. Stay busy, exercise if you can. I was just looking at my instagram from the months between surgery and start of my chemo and I was going on long walks and hikes almost daily during that time.

momahanx, there are a few more people here like you and me - so weakly hormone + that we're almost tnbc. We're an odd little subset. IME, MOs scratch their heads about our cases because there isn't much data that they can draw on, so they have to use a lot of extrapolating and clinical judgement to create treatment plans. I hope you keep checking in as you go through treatment!

Pepper, how old are you? I'm assuming 50 or under, since you are saying you are in the grey zone, and 22 is only in the grey zone for those who are younger.

These graphs of Oncotype score and recurrence risk might be helpful. They are from the TAILORx study that was released last year. They should be fairly consistent with what your oncologist will tell you on Friday, although he/she might have data that is a little more specific to you. The top graph is for those aged 50 and under, and the bottom graph is for those over age 50. "Arm B", the solid red line, represents the 9-year metastatic recurrence rate for those in the study who had endocrine therapy only. "Arm C", the solid blue line, represents the recurrence rate for those who had chemo and endocrine therapy.

It appears that the recurrence risk at a 22 score for someone aged 50 or younger is 8%-9% with endocrine therapy alone, and about 5% with chemo + endocrine therapy. So in either case, the risk is below 10%, which is very favorable. The question is whether chemo is worth it for that amount of additional risk reduction, and that's very much an individual decision. That's the discussion to have with your MO, weighing the benefits of chemo versus the risks.

Source: https://www.nejm.org/doi/full/10.1056/NEJMoa1804710

Pepper,

We are at the same age too, hang in there you'll know the plan soon enough. Wishing you the best and sending hugs your way.

Toyamjj

Pepper, these are brutal decisions, aren't they?

It sounds as though your MO is using the same numbers that are in the chart I provided in my earlier post. The good news is that your risk is low (less than 10%), even without chemo. As I see it, the questions to consider are:

- Is your risk low enough that you will be able to live comfortably (relatively comfortably, anyway) without doing chemo?

- How will you feel if you don't do chemo and you develop mets? Based on the Oncotype chart, there's a 91%-92% chance that you will never develop mets even if you pass on chemo and just take endocrine therapy. If you decide to go ahead with chemo and then go on endocrine therapy, there is a 95% chance that you will never develop mets. So even doing chemo, you will still have about a 5% risk. If you don't do chemo and do develop mets, would you kick yourself for not having done the chemo, or would you figure that you probably would have landed in that 5% anyway, even if you'd done chemo?

- How will you feel if you do chemo and develop long term side effects? The risk is relatively low for someone your age (the risk of serious/permanent side effects is higher for those who are older) but it's still possible. Would you see that as a price that had to be paid to get your risk as low as possible, or would you be angry about that, and question whether you should have had chemo, given that it was considered optional and your risk was already quite low?

Of course until you are in a situation, you can't know exactly what you will think, but you know how your mind works, how you feel about risk and what level of risk you can live with, so that's what you need to consider. The way I make decisions of this sort is not based on which option I like best - frankly all of the options are crappy and I don't like any of them - but which choice I would regret the least, should things not go according to plan.

Let us know how your second opinion goes next week.

Beesie, incredible post. This information and how you have explained it is such a great explanation of risk vs benefit. May I suggest that you create a separate post so that it is a stand alone post. This would be extremely valuable to those who are considering/struggling with these decisions.

Pepper

so sorry that it is so gray-like you I like a yes/no answer. That said, I was in the gray area too..for me there were some factors that I considered--my kids were 12 & 7, I was young and healthy and (and this is only for me) I knew I would probably sleep better at night if I had the chemo-- the question I posed to my surgeon and MO was this "if I was your sister, what would you recommend?" both said they would recommend the standard of care chemo. Now, this was before tailor x results so they were basing that on their own experience (which I completely trusted). But now there is data that can really help everyone. I think your MO's comments are helpful-- but in the end, it is really about what you can live with--- if you are thinking about chemo, ask what kind they would offer- how long (mine was short-- 4 treatments over 8 weeks)....

This is a hard decision--I can only tell you that I have never regretted it but I know others who had my same dx and did not have chemo and have also never regretted it. Best of luck

Pepper,

not sure if this will be helpful-but here goes. I was in the gray area (pre tailor x) around 26-- had 4 chemo (A/C ) treatments over 8 weeks then radiation. Because of a blood clot during one of my pregnancies, I was unable to take tamoxifen-which meant they had to put me in menopause (lupron) in order for me to take an AI (letrozole). I did the lupron injections every month at the gyn. There was vaginal dryness and atrophy (but I worked hard to counter that- saw a pelvic floor therapist and when I am good about the exercises, it is ok--dryness was probably going to happen anyway-lots of Replens etc). I did find that something (not sure if it was the letrozole or lupron) made me a little cranky for a while-- it took about 6 months to develop a rythym on the drugs. I stayed on lupron for 3 years then went off because I figured I must be in menopause- I was right-and took letrozole for 5 years.

As for working - I work full time and at the time of dx I was working in a fast paced executive position-- I had my chemo on Fridays and found that I usually "worked at home" on Mondays and Tuesdays. I was not sick but queasy and tired. Then I was back in the game on Wednesdays. I think it was right for me. I work with hundreds of people-I did not speak widely about my dx at the time-- so each day I could focus on my work and did not have to talk about cancer all day--it was really a relief and made me feel "normal". I was just really careful about not picking up any germs (I work in a university--so many opportunities to get sick!!)

We did not change our kids's schedules at all -they still had play dates, school, music lessons,--my h had to do more (cooking dinner) but overall I think we kept them on track and did not make a huge deal out of this. I suspect that they barely remember it-- I have had 2 other low level cancers since then and again, we keep the trains running and just keep moving forward.

You have to do what works for you-some people find working through chemo to be too much-- and that is ok-- my onc really encouraged it so I just did what she said. There are probably people in your workplace who are going through chemo right now and no one knows. I did buy 2 human hair wigs. My treatment started in January and I shaved my head pre-chemo- then by July 4 I was no longer wearing the wig and had a super short haircut for the summer. None of this is ideal. The best advice I got when I started chemo was "do everything they say to do, take all the drugs when the say to" because they really do have this down to a science.

All of that said, you may choose not to do chemo- and that is also up to you. I think it is hard when you have 2 same opinions and there is no clear path. But in the end, you have to live with the decision. Someone once told me - when you have a hard decision to make- wake up one day and decide yes I will do that- and live with that all day. On the next day, wake up and decide- no I will not do that- and live with that. On the third day, the decision might be clearer.

I had my chemo every other week. When I asked why it was so close together (many of my friends had it every 3 weeks) my onc said "you are young, healthy and we want you to get through this and get on with your life" . I really appreciated that.

happy to answer any questions that you have-- be confident that you will ulitmately make the best decision for you and your family.