Onco Score 27- Chemo or no Chemo

Maddie322

Hi,

I'm newly diagnosed, and had a lumpectomy and sentinel node biopsy on 10/4/21. I'm 65, Stage 1a - tumor size 1.1.cm, grade 3, N/0. I just received my Oncotype score (27) which is just over the threshold for my age. I'm wondering what others with similar scores have done. My distance recurrence rate at 9 years with hormone therapy only, is 16%. Benefits from CT are greater than 15%.

I can deal with losing hair (or using a cold cap) and other short term side effects. The long term CT side effects are what frighten me (heart, lung, osteoporosis, another type of cancer) and i haven't been able to find any stats on what the rates of the side effects are or the time frame.

Since I'm so close to the Onco cutoff (25) I'm leaning toward not having CT and just doing radiation and hormone therapy. I'm wondering if any others have had intermediate Onco scores and if you opted out of CT or not, and any outcomes. I see the Oncologist on 11/1/21.

Thanks!

moth

Hi Maddie, sorry that you find yourself here & dealing with breast cancer.

I think an important factor you need to consider is this: do you have other health issues & how many more years were you expecting to live? If you come from a family where everyone lives into their 90s or beyond then that changes things.

Just to be clear, the recurrence they're talking about is metastatic recurrence, which isn't curable. Median survival for metastatic breast cancer is still 2-3 years (maybe inching closer to 3 years in recent years).

And recurrence for the patient is essentially binary. The cancer recurs or it doesn't. So the quetion is how much clinical intervention to put in to lowering the risk of recurrence...

Osteoporosis, heart & lung problems are largely functions of ageing. Osteo will be an issue on hormone blockers which you will need to manage either way.. Chemo doesn't affect bone strength much. Our risk of cancer goes up, yes, for all of us, both for a new primary breast cancer & a totally different cancer. But you're being given an opportunity to lower your risk of *this* cancer returning to kill you. Also think about how hormone therapy will affect you - some women find it very difficult to cope with the side effects. If you choose to stop hormone therapy & have had chemo, then there's a lower risk of recurrence. without either the risk would be greater.

I wish we could see into the future - all this decision making is very hard.

I hope you can get all your questions answered and have a really good discussion with your oncologist about how to proceed.

2019whatayear

Moth really gives the best comprehensive advice. Overall you have to decide what you can live with.

Maddie322

Thank you moth. I'm relatively healthy, some arthritis but take no prescription drugs. So having this flung at me with so much toxicity about to enter my body has thrown me for a loop.

You've given me a different lens at which to look through. My mom died at 57. She had breast cancer diagnosed first in 1962, recurrence in 1967 and had a full mastectomy each time. I tested negative for BRAC gene. Honestly, I never thought I'd make it to 65, but here I am.

Am I reading your profile that you are a multiple cancer survivor and did do CT? I guess we would all be rich if we had a crystal ball. Your note has given me much to think about and more questions to ask at my oncologist meeting. From the bottom of my heart, I thank you.

moth

Maddie, I was diagnosed stage 1a & treated aggressively, surgery, chemo, rads. It came back metastatic so now I'm incurable. Which sucks. I've been on chemo for stage 4 for 19 months straight now. But for me it has been good to know I threw everything I could at it when I had the chance. No regrets.

I think this is very important- to make the best decision which makes sense to you and them move on & don't second guess yourself. There's an awful lot of luck & randomness in cancer outcomes.

Wishing you all the best!

momand2kids

Hi Maddie,

I was just dropping in to post my annual "this is my anniversary of dx" note when I saw your post. I think I was a 27 on the oncotype back in 2009. I was 48 with young kids-so I did the chemo-- I have to say, I don't feel like it has had long term negative effects. I had two other types of early early state cancer (thyroid and melanoma) since then- but overall am in almost perfect health!!! It looks like from your email that 25 is the early cutoff -does that mean the "gray area" starts at 26? When I was dx, 0-18 was no chemo- 18-30 was "gray" and beyond that was chemo recommended.

Since I was dx, I know the tailorx trial finished and great data is there-- also can you talk to your onc about what exactly the chemo would be-lots of options, some "lighter" than others. Also, there can sometimes be a difference between ductal and lobular. There are some who feel that lobular is best treated with endocrine therapy- the only thing that really jumps out at me is the grade 3 which can suggest that the cells are reproducing more quickly and chemo seems to always be a good defense to that. I have a lazy slow growing tumor (according to my onc).

I have never regretted doing the chemo and have not lost a single night's sleep since worrying if I had done all I could. I know that there are others who are more capable of taking that risk but I did not fall into that category. For what it is worth, I had 4 treatments over 8 weeks and then it was over. Barely remember it now. Best of luck in the decision-making- it is not easy.

AMG2

Hi Maddie,

I'm 3/4 of the way through my chemo, so in the thick of it and toward the end where it starts feeling bad. I am 9 years younger than you are, and I'm not sure how I'd feel about chemo if I were 65 and starting in with a diagnosis, or if I make it to 65 and have a recurrence. I am doing the chemo to try to prevent just that from happening, and will be throwing everything my MO recommends at it (radiation next, then hormone blockers for as long as recommended or as long as I can stand them). My situation is also a bit different because I know for sure, mine tends to be very aggressive, and chemo + targeted therapies will take this cancer from a >50% chance of recurring within 5 years to a >95% chance of NOT recurring within 5 years. I have a great job that I love (and have been able to work through chemo so far); my youngest kid is only 20, and I want to be here when he's 30 - I'll have the poisons, please.

I do want to say, in spite of doing all I can to prevent it (glutamine and icing) I've been having neuropathy with my chemo, and my team has been responding to this potentially permanent side effect by dropping my dose - they dropped it 10% for infusions 7 and 8, and dropped it another 5% for infusion 9, and as of today, just the tips of my fingers are numb, and there's a chance the nerves will recover once I've finished this protocol. I'm only mentioning this so you will be aware, a good MO will look at what the treatment is doing to the patient and adjust it so that the risks don't outweigh the benefits.

Risks of other cancers: yes, that worries me some, too. On the other hand, for me at least, I have to deal with the cancer I know I have right now, and I know it's happy to end my life in a few short years. If another one comes along, well, I'll have to make decisions about that one if and when it comes.

Stats on side effects: my MO is at a research institution and has been great about sharing papers on therapies and side effects. See if your MO has info and stats on the side effects that are of greatest concern to you before you make any decisions.

My very best to you, whatever decision you end up making.

Cowgirl13

Maddie, my mother was first diagnosed with breast cancer when she was 46 and then again at 51. She died at 56 years of age and as you can imagine, I was terrified of being diagnosed with breast cancer. Twelve years ago I was diagnosed when I was 63 and went through all the treatments--surgery, chemo, rads and hormonal therapies. I wanted to know that I did everything I could to prevent a recurrence as I knew if I had a recurrence I would regret, every day, that I hadn't done everything I could. I'm 12 years out now, I'm 75, and I am in excellent health with no side effects from my treatments. I can truly say I have lived through my greatest fear.

Maddie322

Thank you to everyone who responded to my post last month! My surgeon, MO and radiologist all advise to do chemo.

So, port placement on 11/12 and I will begin chemo on 11/17/21 with TC (Docetaxel + Cytoxan), 4 infusions once every three weeks. All of your responses gave me pause and helped me realize I should go through with chemo to have the best chance at survival.

Thanks again to everyone!

moonstruck19

Good luck maddie! Prayers sent