High Oncotype need chemo

mudd · December 2017

I am devastated. Just found out I have a high Oncotype and will need chemo. My mind can't process this. I heard a bunch of yadayada on the phone and that the Oncologist wants me to come in to discuss. He mentioned different time frames, One has a higher chance of hair loss and side effects but is shorter or a longer course = what does all this mean?? Can't stop crying right now.

Moderators · December 2017

Hi mudd,

We're so sorry you are facing these decisions and we know it can all be so overwhelming. It's very, very common to "phase out" when you're getting information you weren't prepared for or find hard to understand. Your discussion in person with your oncologist will definitely help -- and you may also want to bring a friend with you who can help recall information received, or bring a notebook to jot notes, or a recorder so you can capture all of the information you're being given.

In the meantime, you may find some helpful information on the main Breastcancer.org site's page on When Do You Get Chemotherapy?, which helps explain dose-dense chemotherapy, which it sounds like what your doctor has suggested.Also, the page on Choosing a Chemotherapy Combination, helps explain why doctors usually recommend certain medications or regimens. Another helpful page is the Talking to Your Doctor About Chemotherapy page, which offers suggestions on how to get information about your doctor's recommendations and questions to ask.

We hope this helps! Please keep us posted with what you decide. We're all here for you!

--The Mods

OCDAmy · December 2017

Mudd, I was told at first I wouldn't need chemo but then was told I did. I just wanted to let you know how scared I was at first but it honestly was not that bad. I was able to work though the treatments and I never felt sick. After the first infusion you know what to expect and the chemo nurses are some of the best professionals I know. I had four rounds of TC. The "T" is taxotere which is known for causing hair loss. It is the shortest chemo treatment protocol that I have seen on these boards. Hang in there, you can do this.

mudd · December 2017

Thanks for responding. How long did the four rounds of TC take? He mentioned something about a faster treatment plan vs. slightly longer, but like I said I tuned it all out. I am going to see him in person later today.

OCDAmy · December 2017

You get the TC infusions every three weeks so a total of 9 weeks. Not bad at all, I promise.

Meow13 · December 2017

Well, you can check out using cold caps. CMF is a treatment longer course a only a 25% chance of hair loss. I also was told ACT and that will produce hair loss but shorter treatment. My oncodx was 34 and I decided to not do chemo. My mo tried to convince me with the statistics but I decided not to.

My advice is to listen to your options. This is a game of balancing your risks, no one can force you into a decision do what you feel is best for you.

The oncologist is there to advise you on treatment to prevent recurrence.

mudd · December 2017

I still don't understand what the oncotype test shows. My score was 47 or 48 I don't remember. I'm taking letrozole and I can't imagine the odds of all the long term effects of chemo are worth whatever the percentage of benefit. UNless the benefit is 100% which of course it isn't. WHat do the oncologists feel is the risk benefit ratio cutoff

Spookiesmom · December 2017

Take somebody with you for a second set of ears, or ask if you can record on your phone. Write your questions don’t leave till they’re answered.

Chemo isn’t fun, but it is doable. Hair will grow back. Your life is more than hair, and most insurance will pay for a wig.

vampeyes · December 2017

Hi Mudd,

What type of BC do you have? Stage? Grade? Lymph nodes? ER? PR? HER2? I have IDC, no nodes positive, grade 2 I think and no idea what stage, 1 likely. I was told because it the cancer was caught early I likely wouldn't need chemo but they were going to do this oncotype test to see if my cancer was a fast grower. I don't understand why it would make a difference if it wasn't found in my lymph nodes, so like you I am confused as to why chemo would be needed. Wouldn't radiation do the job? Will it make much of a difference? The oncologist told me a 10% chance of recurrence with no treatment and a 5% with treatment....so is it really worth the risk of the side effects? I am only 41 too, so I need to take that into consideration as well, someone who is 80 wouldn't risk the side effects, but someone my age they say should. I, like you am lost on what to do.

Cheryl

OCDAmy · December 2017

Here is more information about the Oncotype test. I had a score of 18 but had a larger tumor and two positive nodes so for me, there was no question I was going to need chemo.

http://www.breastcancer.org/symptoms/testing/types...

Meow13 · December 2017

mudd, I would inquire about cold caps. You don't have to lose your hair. Talk to your mo. My mo told me I could try one session see how it goes. He was pretty certain that even just doing some chemo would help. But I thought about looked at my pathology and the statistics and said no, not for me. I did AI drugs since I was post menopausal. Only 4 years though quit due to severe dry eye.

What bothered me was my mitotic rate was 1 on both tumors. The tumors were ilc and idc with lobular features, my pr % was less than 1% which I believe is why my score was 34.

I am ok over 6 years out. I may have tried chemo if I had known about icing fingers and toes and cold caps. But I struggled for years in my 20s with IBS-D and it went away after having my first child. I won't want to live with IBS-D again for a 10% risk reduction.

Chemo kills a bunch of fast growing cells but will it get all cancer cells probably not.

Talk to the mo, if you feel like you are being overly pressured than take heed.

pupmom · December 2017

Mudd, the Oncotype score describes your risk of recurrence, assuming you take Tamoxifen or an Al.

pupmom · December 2017

Vampeyes, breast cancer can spread even without nodal involvement. The Oncotype test gives us a clue about how likely that risk is. I had 2 positive nodes and did not get chemo, due to my low Oncotype score of 14. One size definitely does not fit all. That's why this test is so valuable.

vampeyes · December 2017

Thank you pupmom, I figured no nodes means it didn't spread, didn't realize that it still could.

YoungTurkNYC · December 2017

Vampeyes - BC cells may break off of the tumor and go directly into the bloodstream at the cellular level and completely bypass the lymphatic system. Having no lymph node involvement does not mean that these cancer cells are not already circulating in the bloodstream. This is why adjuvant systemic treatment (whether hormonal, chemo or otherwise) is so important.

mudd · December 2017

Finally going to start T/C next week. Scared out of my mind. I finally understand why they are suggesting chemo but still don't quite understand if there is no cancer in my body now, (bmx, clear margins and 0/2 nodes clean) how do they measure if the chemo actually accomplished anything when its all over. It seems I'm going to be left with no boobs, no hair and still no definitive answer if the cancer is gone!

pupmom · December 2017

Mudd, sadly the only way they will know is if you don't recur. Individual circulating cancer cells can't be accurately detected by any scan used today. The hope of chemo is that those cells will be killed off before they can take up residence in distant body parts and grow into dangerous tumors.

MargoChanning · December 2017

Hi Mudd,

You will be grateful in the future that you had an Oncotype test to let you know your tumor had genetic characteristics indicating it would spread. Early stage people who have chemo do better in the long run and have lower recurrence rates. I had a similar situation, Stage 1, no nodes involved, clear margins; I was all set mentally to just do radiation after the lumpectomy. Then I got the results of the Oncotype with a high score. It was very unsettling. But I decided I'd rather go through the chemo then and not have second thoughts later. I had TC 4 times spaced out every 3 weeks, although recent research is showing that it's even more effective if they reduce the interval to 10 days. They can give you a medication that recovers your immune system that lets you speed up the process, and you get it over quicker. Your hair starts to grow back within 4-6 weeks and mine came back very shiny and curly, like when I was a little kid except much darker color (and I was 61 at the time, so I was expecting gray hair to grow in). I had mild neuropathy in hands and feet which eventually resolved, and a metallic taste which made food taste crappy, but all of those effects went away in the months afterward and none of them prevented me from continuing to work full time, although I usually took 2 days off work for the infusion (Thursday and Friday). I don't want to minimize anything but on the other hand, the chemo can literally be a life saver if you have an aggressive cancer, even one that looks harmless at first with no nodes and a small size. It's the biology of the tumor that is important. Good luck with whatever you decide to do and if you have side effects check out the community boards here - I've gotten great suggestions for supplements and other remedies to help with this process. I also recommend a book, "Just Get Me Through This!" by Deborah A. Cohen; you can find it on Amazon. She has loads of helpful coping suggestions covering everything you deal with.

All the best to you!

High Oncotype need chemo

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