Oncotype score

What you have to remember is, everyone is different. No one is going to react the same way to the drugs that are given. That big list of all the things that CAN happen does not mean that it WILL happen. I have done a regime of 4 A/C and I am now doing the 4 Taxol. It is true that both of them will cause you to loose your hair, which has happened, but I still feel stubble on my head.

TAKE A BIG BREATH !! LOOK at your options and make a choice. You can only decide with the information that you have on hand and no one else can make the choice for you.

Hi all, trying to keep this oncotype dx thread alive. Advice/ personal experiences appreciated!!

Just got my results today. Score of 16. So at the very upper edge of "low risk." Distant recurrance rate is 10% with rads and tamoxifen.

What complicates things a bit is that I'm only 32. If I was older I think it would be easier to say no chemo, but I'm young and I don't know what to do. Theoretically I have a long life ahead of me... it seems like a long time for the cancer to come back. However, my onc said that I could go either way, but she thinks the side effects of chemo are worse than the potential benefit. She estimated 2% benefit. I honestly don't even know how accurate any of these statistics are. Sometimes it seems like one giant "guess"

Please help! I am getting a second opinion, but I also don't want to put off my rads too much longer while I wait.

Sarah

Nem126--I had a an Oncotype of 28, in my mid 40s. I did 4 rounds of chemo and had the last one 4 weeks ago. My opinion, don't do it for your score. The risks suck. I've endured, nausea, constipation, heartburn, extreme fatigue, bone pain, headaches, neuropathy, watery eyes, hair loss (I cold capped and only lost 30%), taste loss and now lymphadema. They would have you do the same regimen--4 rounds of TC. I had a second opinion. This was to get my 18% chance down to 12%. A 30% drop for me. I am still suffering from anemia, low immune system, lymphadema, watery eyes, fatigue, and hair loss. I wouldn't wish this on ANYONE!! I looked at the research. If it's such a low drop, change some lifestyle choices and environmental sources. Cut out parabens, phyla's, eat a ton of fruit/veg daily, cut out red meat and all the other things they suggest. Again, my opinion. Look at the threads of the women who started chemo in Nov & Dec. I'm in those chat groups and they are in the midst of the side effects that are not only physical but emotionally draining. Get a second or 3rd opinion but you should be ok being below 18.

Thank you all SO much for your advice. My tumor was 9 mm. So just a smidge under 1 cm, reasonably small, but right up against my chest wall. I am still going to get a second opinion at another hospital (Penn in Philadelphia), but I am leaning toward no chemo.

I figure if they agree with no chemo at Penn, I can still also talk to them about hormone therapy. My onc gave me 4 possible options:

1. Tamoxifen for 5 years

2. Tamoxifen for 10 years

3. Start on tamoxifen for a few years then switch to a menapause inducing shot and take arimidex.

4. Do the menapause shots and arimidex right off the bat.

I did have a uterine polyp in my 20s. It was benign and no big deal at the time, but it puts that teensy bit of doubt in the back of my head with tamoxifen. I know the risk of uterine cancer is very low... but still.

meow13- I'm doing the 6 1/2 weeks external rads. I've considered the surgical menapause, but I'd probably wait until I'm a little older if I went that route. No kids yet, and we are clinging onto some faint hope that pregnancy might still be possible someday.

Pamela23- thank you for the advice. You're right, my onc said if i do chemo it would be 4 rounds of TC. Hope you recover and feel like yourself again very soon!!!

beebs- I tend to agree with you there

Amapola- definitely great advice- thank you so much. Looks like the node is probably what pushed them to do the chemo for you even though we both had 16s. What is luminal A? Is that on the oncotype dx results? Forgive me if that's a dumb question. I've heard other people talk about it before but I was never quite sure what it meant.

Again, thank you ALL! So good to have support here. I feel like I get more definitive answers here than from my doctors sometimes

Sarah

DX 12/2016 at 31 yo, IDC, stage 1A, grade 2, clear margins, 1.5cm, ER/PR+, HER2-, 0/8 nodes, Oncotype 15 (9%), KI-67 40%

I met with my MO this week and she is recommending 4 rounds of TC, which surprised me. I'm engaged but have not had children and the risk of permanent infertility as a result of chemo seems high - not to mention the other side effects. MO admitted that chemo is likely to only reduce my recurrence risk by 2-3% but given my age she still thinks it's a good idea. I asked if I could delay a few weeks to do IVF but she said the delay would make it not worth it to do chemo. So if I delay she'd recommend Tamoxifen with Lupron for five years.

I have an appointment for a second opinion in a couple weeks.

Is there anyone in a similar position?

Lizzie, another option is starting lupron before chemo to reduce the chance that chemo will affect your ovaries and push you into menopause. I did lupron shots for that reason, then offered to keep going with it if it would offer any survival advantage. In my particular case the benefit was not worth bothering, according to my MO.

I believe chemo is recommended when the tumour is more than 1cm, or it is HER2+, especially for younger women. Being diagnosed at a young age tends to be associated with more aggressive breast cancer. Chemo is not as bad as you might think! Especially for younger people.

As my ex-father-in-common-law told me:

"For people like us, who are strong, chemo is no problem."

Good luck gathering the information you need to make choices. I'm all for deciding for oneself.

P.S. A couple of weeks seems long to wait for a second opinion. Pleasant persistence can often score a cancellation spot, if you call in every couple of days asking nicely. (It helps to mention that you are very worried and hoping to get more information soon. People like to be helpful.)

I think some oncologists just go through the motions and have the tunnel vision of killing cancer at any cost. They believe the younger you are the more the need for chemo. I would run away from these doctors. If chemo was the answer we would have the cure.

Lizzie B- my oncotype was 16, and they recommended no chemo, saying there was only a 2% benefit. I'm 32.

I have mixed feelings about it. No chemo, so yay! I guess that's good. Chemo has some nasty, potentially long term side effects. But I also wonder if they are doing enough to treat it since I could live another 50+ yrs with that 10% risk of recurrance (with tamoxifen) hanging out.

I'm getting a pretty intense course of rads too, 6 1/2 weeks.

In the end I decided to just start on rads because I felt pushing that off any longer was risky. Other hospitals couldn't get me in for a second opinion on chemo for another month.... I didn't have that time.

So, I don't know. To some degree you feel like you are flipping a coin and hoping for the best. It sucks, but I'm trying to just find a way to live my life without too much fear going forward.

BosumBlues- I am still going to Penn, but since they couldn't get me in in a reasonable amount of time (for the chemo decision), I plan on just discussing their recommendations for hormone therapy instead.

Sarah

Nem - I agree, it's very frustrating. A 2% chance seems like so little; but, we had a less than 1% chance of getting BC, so...

Amapola - I have a second opinion with Cigler next week as well as practically every other major MO in NYC!

Do either of you know what the typical follow-up is to check for mets? Do we get regular bone scans, blood work, etc? I just feel like if I'm not going to go the chemo route, I want to make sure I'm getting regular check-ups for mets.

Oh man... I really worry that I am being undertreated now. I couldn't wait the extra month to get a second opinion...

I'm assuming once you are too far out from your surgery chemo is no longer as effective.

Nem, for what it's worth, I was 34 when diagnosed and my MO told me when ordering the oncotype that she would not recommend chemo for me if my score came back low (ended up I got a high score plus found out my tumor was Her2 +).