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Should I have chemo with an Oncotype score 25?

nanda29 profile image
17 Replies

got the intermediate risk score and now oncologists say I need to make a decision about the chemo. I am 30, stage 1, grade 2, 1.3cm IDC - Ki-67 12%, estrogen 6/9 and progesterone 4/8 - anyone in a similar situation?

I was told having chemo would lower my risk of reoccurrence from 13% to 11%

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nanda29
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17 Replies

Really don't know what all those numbers mean in the end, but what does your oncologist recommend? Do you have family history? Do you have BRCA or PALB genes?

BklynCatwoman profile image
BklynCatwoman

That's a very tough, personal decision. I was also stage 1 and my oncatype score was in the very low medium range (18). I decided to have chemo, to err on the side of caution rather than be under-treated. I figured I wanted to have more than I needed rather than less and risk recurrence. Although chemo was no picnic, I'm glad I did it. I asked both my breast surgeon and the oncologist what they thought I should do and both said to have chemo, though they left the final decision up to me.

I hope this helps. Good luck to you.

nanda29 profile image
nanda29 in reply toBklynCatwoman

Thanks for sharing your experience! I think I going to say yes for chemo 😬 how many sessions did you have? Did you cold cap?

BklynCatwoman profile image
BklynCatwoman

I had 3 months of chemo, 4 sessions of CT (taxotere & cytoxin). I didn't bother with the cold cap. I lost all my hair but I was more worried about losing my life, so I dealt with it. I rarely wore my wig (it was summer and felt like wearing a hat) and wore mostly scarves and light hats. My husband was so cool. He said I looked like a punk rocker sci-fi chick bald.

Cu4281 profile image
Cu4281

Hard call. If it is just 2. Percent I almost think don’t do it. On the other hand you are only 30 so you have a long life ahead that you have too live so whatever takes you down the longest road feeling the best is the way to go. Your dr can really help you decide if you should. Good Luck ☘️ Many women live long lives with this so go forth and live the best life you can!

Ytabnm profile image
Ytabnm

Are you Her2 positive or negative? Was it in your lymph nodes?

nanda29 profile image
nanda29 in reply toYtabnm

Her2 negative, nose negative...opted for chemo to lower risk 😑

Collswims profile image
Collswims

Knowing what I know now I would say no to chemo. I am her2+ stage IV and had six cycles of taxotere, herceptin and perjeta. I still get herceptin and perjeta every three weeks, these are "easy" drugs and not considered chemo but targeted therapy. It's the taxotere that permanently crushed me which is a chemo drug. I lost all of my nails and hair. My nails have not returned to what they were and my eyebrows and eyelashes are permanently gone. I also have peripheral neuropathy in my hands and feet that has not healed since we dropped the taxotere almost four years ago. I also fatigue more easily than I did prior to chemo and have had difficulty regaining my endurance. Sorry to be so negative but I wish I never had the taxotere, it's (along with other chemo agents) a very nasty drug.

IGotSunshine profile image
IGotSunshine

This is such a difficult situation. In the dozen years since I was diagnosed, I hear more and more about doctors leaving decisions to patients in matters where a medical judgment based on years of experience and deep education could be truly helpful. I think I would put the question in very personal terms and punt it back to your doctors: "All things considered, if I were your daughter [or wife], what would you want me to do?" Good luck!

nanda29 profile image
nanda29 in reply toIGotSunshine

I kind of did, they said they would recommend chemo 😔

BklynCatwoman profile image
BklynCatwoman

It's a very personal decision but I had one with a score of 18. I figured that I would rather be safe than sorry. Also, my breast surgeon and oncologist recommended it.

nrollman profile image
nrollman

You may have made your decision by now, but I will offer - you are so young and have so many more years to live, I would do the chemo regardless of the statistics. As a young person (I was 39 when I had chemo) your body should be stronger and it could be easier to handle the chemo. Your oncologist should be able to provide some guidance. Good luck!

nanda29 profile image
nanda29 in reply tonrollman

Thanks for the reply! Yes, I opted for chemo in the end...starting this Thursday

Jhordynn profile image
Jhordynn

I was told my score would only help 1-2%, I decided that even that little bit would help, I'm 46. I wanted to hit it with everything I could. Good luck with your decision.

Sending love,

Terissa

boxwood profile image
boxwood

If you only have a 2% improvement I would not do it. I found in my reading that chemo is becoming less the go-to solution than it used to be. My cancer was stage 1and I had an oncotype of 18 and had surgery and radiation and I’m on Arimidex now. But I am 65. Get another opinion. Chemo therapy is grueling and if you don’t need it, don’t do it. Talk to more female doctors as well. Good luck!

nanda29 profile image
nanda29 in reply toboxwood

Thanks for the reply! I am actually done and dusted now.

I opted for chemo when someone reached out to me at the time... Another woman my age messaged me to say she had a very similar score (a little lower even) and she skipped chemo thinking it was all fine and was now dealing with metastatic cancer.

I also found out I have a genetic mutation that makes me much more likely to develop breast cancer, so that was weighing in as well.

Luckily I managed chemo very well. I worked full-time and barely had any side effects. Glad I did it....

Mmnyc profile image
Mmnyc in reply tonanda29

NandaLondon,

I’m so glad your body was able to handle the chemo! What kind of treatment did your oncologist recommend? I’m curious because you are young and I just finished my chemo also and am 40 years old but doctor wants to stop my estrogen completely so that means early menopause for me. Was curious what your doctor recommended for someone young.

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