1/3 involved lymph nodes - chemo ?

Hi Hokster,

I was just thinking back to when I received my initial diagnosis and how I had to make so many decisions with so little knowledge. Luckily I think I made the right ones for me. Just keep reading, ask your MO lots of questions and eventually you'll make the right choices for you too

The Oncotype test has a very good track record so you can have confidence in the recommendation. If you score in the low zone (below 18) then throwing the kitchen sink at your cancer would most likely cause you more harm than good. If you're in the high zone (over 30) then chemo is pretty much a given. It's that darned gray area (18 to 30) that causes problems. No clear answer as to whether chemo would be helpful or not. That's when you rely on the recommendation of your MO or order a Mammaprint test that shows only high or low.

I believe the Oncotype test takes into consideration your age and the positive node so the recurrance risk score is very specific to you and your tumor.

Regarding your positive sentinel node: as part of surgery they inject a dye and see which lymph nodes absorb the dye. In your case it was 3 nodes and they were removed and 1 of those was positive. It is believed that those 3 nodes are your first line of defense and since only one was positive then cancer did not travel further. If more were positive they would have kept removing nodes until they felt they got it all.

I see that you are ER/PR positive. That's excellent. Your dr will most likely prescribe an AI (I take Femara). AIs are even more effective that Chemo in reducing you risk of recurrance.

The DCIS in your other breast makes no difference in your treatment recommendations. Whatever treatment you have for the ILC is more than enough for the DCIS

Hi Hokster, a few thoughts:

Did your oncologist order Oncotype on both tumors? If I understand correctly you have DCIS in one breast and ILC in the other. Or is Oncotype only done on DCIS?

Speaking of positive sentinel nodes, from your description it appears the surgeon removed three sentinel nodes of which one was positive. Are you sure there was no more nodes testing done? Or did they test some axillary nodes too? I would ask the oncologist. I don't think it matters if you decide to do chemo but it you don't it might. In my case, one of two sentinel nodes was positive (3mm of cancer) and several more axillary nodes were found positive too (see my profile below) despite the tumors being of a very small size (9 mm and 3mm.)

Considering your age, grade, family history, the fact the cancer is bilateral it might be useful to get a second and even third opinion before you decide on the treatment course. If I were in your shoes I would seriously consider chemo if it is recommended by oncologists and like you said, throw the kitchen sink at it while you are still young and strong.

Best of luck!

This is a late response...sorry. I did not have an oncotype. My surgeon did the excisional biopsy and then sent me off to my oncologist. Because of the dx, chemo was recommended at her office as well as the second opinion I got at MD Anderson. No oncotype was even offered I think because of size/stage and + nodes.

I didn't know about the oncotype--had I, I might have asked for the test, but I immediately felt the need to throw everything at the c. By that I mean I wanted all the tx available to me. It was more a psychological action than anything. I wanted to look back, if there is a recurrence (wow that was hard to type!) and know that I did everything I could to knock it out the first time. I felt aggressive tx first go-round would relieve me from a lot of guilt and fear if the worst happens.

I knew I was strong and healthy and could handle it all. I was in great health already. But for those that aren't or don't feel as I did, their choice will be different-not wrong, just different.

If there was even the slimmest chance that chemo/rads/bmx would knock out even one cell that was bad, I wanted that chance. That's why I went that route, regardless of ILC response to chemo, etc.

Happy holidays, all. I hope for a day at least we can all put away the bc umbrella we live under, and enjoy the day, whatever that may be.

I would do chemo. I did it. Not easy, not fun.....but doable. I lost my hair, but it came back....have had 4 haircuts. Throw the sink and everything you can to get every last stinking cancer cell gone! My opinion! You will get through it. PM me if you want to know anything about side effects. I had my share.

I am living a great life now, so aware of the beauty of each day and thankful for medicines and doctors. Back to where I was before.....teaching exercise classes at age 68. I have taken the training to be a Reach to Recovery coach for the American Cancer Association because I want women to be proactive and kick cancer in the butt!

I have to chime in on this. I totally understand the gut response to throw everything you can at your cancer to make sure you maximize your odds. But the truth is that chemo doesn't work very well on certain types of breast cancer, so the very real damage it can do doesn't outweigh the benefits in those cases. That's where tests like the Oncotype come in. Not only do they test your risk of recurrence, but they also offer information on how effective chemo is likely to be for your particular type of cancer.

I didn't get the Oncotype, but took a similar test called the Mammaprint. I came back as having a low risk of recurrence even though I had 2 positive nodes (1 macro, 1 micro). For the Mammaprint low risk group, chemo only gives you an estimated 1.5% benefit. Certainly not enough to outweigh the toxicities and side effects.

For my own peace of mind, I consulted with 2 oncologists (one of whom is renowned for her research on chemo for breast cancer) and had my case presented before a tumor board as well. All agreed that based on my Mammaprint results, there would be very little to no benefit of chemo.

So I would urge you to definitely take your Oncotype results into account when planning your treatment. If you do fall into the intermediate area, I would highly recommend getting the Mammaprint. You'll get a definitive answer: either High Risk or Low Risk. While insurance probably won't pay for a 2nd test, the company that does Mammaprint only charges patients $500 and will also waive fees in cases of financial hardship.

Thats a good question Claire. Were these tests not in use or not as routine in 2012/2011 when we were DX'd? I remember asking my MO then and think they said they only needed to do that test if we werent sure about doing chemo and since I had a positive node we were doing chemo. Hmmm now I wonder what those tests would tell me also.

My BS said that they keep the tumors for a very long time - I plan on asking/insisting on the breast cancer index test - which they do at the 5 year mark. Have you discussed that test with your docs? I think that in the future they should just sequence the entire tumor - that way we would have the data necessary for any future tests. Not sure how much it would cost, but having two or more of these tests at $4000 each gets expensive.

Claire, here is basic info from BCO - although the test says it is for node-negative I believe it is being used for node positive - not sure if it is limited to 1-3.

http://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test

Thanks, all. I downloaded the brochure. I am going to ask my doc about it at the next check up.

Hokster, seems about right to me. My Oncotype score was 14, and I had 2 positive nodes. Oncologist said NO chemo, and I'm alive and kicking 5 years later! You will be fine!

I was 53 years old one ILC and one IDC, no nodes but oncodx score of 34. I chose no chemo and I am 5 years NED.

I did 4 years AI, it took a toll in itself.