Oncotype 24, chemo or no chemo?

Bertbon

I received my results yesterday and my Oncotype was 24. I am scheduled to start 4 treatments of chemo on Dec. 29.

Age: 51

Peri menopausal

Diagnosed with: Infiltrated Ductal Carsinoma, Grade 2 Level 1, 1.6cm, right, 2 sentinals removed and were tested negative. ER/PR Positive, HER2 negative. Anyone else have similar diagnosis?

TheyCallMeCommodorable

My situation was very similar to yours. I opted for chemo based on my MO's recommendation. I felt that I needed to know that I did everything I could possibly do, and then I could move on with my life and not obsess over a possible recurrence. I'm 4 months post final chemo and have no regrets. Although hard at times, chemo was easier for me than I expected it to be. I worked throughout and maintained a good level of activity, walking most days. I am happy to report that the hair is coming back nicely and I stopped wearing a wig at about 10 weeks PFC. Feel free to PM me if you need someone to listen to your fears!

You can do this

Moderators

Welcome, Bertbon!

We're sorry you're faced with this tough decision. If you're so unsure, you may want to consider a second opinion before moving forward. You can find out the best way to go out about this on the main Breastcancer.org site's pages on Getting a Second Opinion.

We hope this helps. Please let us know what you decide -- we're all here for you!

--The Mods

Racy

I agree with getting a second opinion. It's a big decision. While chemo is doable for most of us, we would all prefer that we didn't have to do it.

Ask your doctor about any implications from the research presented at San Antonio last week about the usefulness of chemo for a cancer like yours.

Best of luck.

mdg

I had a similar dx 5 years ago at age 45. I had an oncotype of 17. I know that is in the low group however my MO said at 17 they would tell me no cancer but at a score of 18 or higher they would tell me it's a gray area and it is a personal decision. That did not give me much faith.....I also had LVI present in my tumor which scared me. My son was only 4 when I was diagnosed so that really pushed me to be aggressive in treatment. I did 4 rounds of TC chemo and used cold caps to save my hair. I was done with chemo in 9 weeks and moved on with my hair. I am now out 5 years and have no regrets. It is a hard decision and you have to decide what makes the most sense for YOU. Another thing that made me choose chemo was that I am a type A person and I knew I would always ask "what if"? I knew if I did not do chemo and the cancer came back I could never look my son in the eyes.....that really made my decision easier. Best of luck! Hugs!

sg751

My results are fairly similar to yours.

Age: 45

Diagnosed with: Invasive Ductal Carsinoma, Grade 1, 1.5cm, right, 4 nodes removed and tested negative, ER/PR positive, HR2 neg. Had a lumpectomy and am supposed to start rads on Monday, unless I change my mind.

My oncotype was 19 and I'm pretty sure I'm not going to do chemo. The reduction in risk over 10 years is from 12% to 10%. That means from 1.2% to 1% per year. My doctors were okay with that.

Moderators

Sg751-

Welcome to BCO! We're sorry that you find yourself here, but we're glad that you've joined us, and we hope you find this place to be a source of inspiration and support. Thank you for sharing your perspective!

The Mods

Bertbon

Thank you so much for responding, especially when you have just gone through what I am about to go through. I have an appointment with my surgeon and radiologist before my chemo treatment. I'm hoping to find some guidance from them. I was told years ago a score of 20 would receive treatment. I feel the same way, I don't want to have any regrets. I have always stayed positive since being diagnosed. Everything has gone smoothly until I received my results. Falling into the middle of the intermediate risk is so much more difficult than getting a definite high risk score. I realized I was thinking more about losing my hair than my health. They recommended 4 TC treatments, 3 weeks apart. My family is concerned about all the long term side affects. I think I need to concentrate on long term risk of reoccurrence.

NO REGRETS!

Bertbon

Thank you, I will ask. My radiologist was actually out of the country last week attending a seminar. Maybe this was discussed

Bertbon

sg751, I agree with your decision of no chemo. With a score of 19 you are below the intermediate risk. Good-luck with your rad treatments, you will do GREAT!

I was fortunate to have found my lump. I hope everyone and encourage their loved ones to continue to do self breast exams, that is our best defense against breast cancer!

MsPharoah

Hi Bertbon! We sadly share Oncotype DX scores. Being in the middle of the middle just sucks! I know. I was 62 when diagnosed and decided on chemo. My oncologist recommended 6 rounds of TC which I completed with only the normal manageable side effects so far. For me, I had no concern about losing my hair, except that losing it compromises one's privacy. As it turned out, I was able to find an awesome wig and very few people knew I was undergoing cancer treatment. As far your family being concerned about long term side effects, that is valid, however your oncologist should be able to measure those risks against the benefits you will gain in reduced change of BC distant recurrence. I like the idea that you are including your family in this decision. I did and since we were all unanimous, I felt supported in my decision and I think my adult children and husband felt that their opinion was important.

Good luck to you. If you decide on chemo, there is a lot of support on these threads to help you with the day to day issues. I was able to maintain a fairly normal schedule during chemo as there are many days in each cycle when the chemo side effects are not present.

MsP

Bertbon

mdg: I too am a type A. I wish I could afford the cold caps.I have a 12 year old and i saw how worried he was the day of my surgery (he ended up not going to school that day), I need to try to do everything I can to ensure I am here for him. Plus I have 26 year old daughter that plans on getting married in 2 years, that gives me enough time to grow my hair back. I also have a 21 year old son!

It sounds like you are doing great 5 years later!

windingshores

It is really hard to fall in that area of Oncotype score and researchers are working to help. Are there any results on intermediate Oncotypes yet from the TailorX trial? Someone mentioned research presented in Texas: is there a link we can look at?

You can call Genomic Health to talk, by the way. Their customer service reps are great, fully trained.

I had a different problem: Grade 3, high Ki67, LVI but low Oncotype of 8. I would do chemo but the Oncotype doesn't just say what risk is for us, I believe. it also indicates how useful chemo would be. Lucklly I my cancer was tested as highly hormone sensitive.

You don't say how hormone sensitive you are. You will probably feel better long term after doing chemo, unless you have other health issues that could be affected. Good luck!

sg751

Thanks for your support, Bertbon. I am having second (and third....) doubts. My instinct is that the 2% reduction in risk (from 12% over 10 years to 10%) is small and not enough to justify chemo. But my friend's husband, who is an MO, said that if I was his patient or his wife, he'd recommend chemo. Confused! (My chemo would be exactly the same as yours if I did it). My doctor, who is ok with my decision, did say that she's comfortable w/ no chemo at 20 and below, so your decision seems to be the right one. Personally, I'm just freaked out about the 10-12% risk whether I do chemo or not. That's not what I expected for a stage 1 grade 1 cancer!

Oliger45

Hi all,

I am 45, have a similar diagnosis, and am awaiting oncotype results and sweating at the thought of chemotherapy. I lay awake at night wondering what my score will be, and part of the anxiety comes from the fact that there seems to be two definitions of low-risk: <18 (according to the Oncotype folks), and <10 (according to the results of the 10-year TAILORx study). If I have that right (please correct me if I'm wrong).

My oncologist squinted at me and guessed I'd be a 13, saying that a number above 10 indicates chemo may be of benefit, given my age.

Q: Has anyone else, around my age, been advised similarly regarding scores above 10?

Q: If my score indicates a risk of, say 10% recurrence over ten years, won't that go up if I live 20+ years? (Which I'm planning on doing!)

Q: If you are around my age, and/or are very active--are you or were you able to continue an exercise program during chemotherapy? Losing my pretty muscles is my biggest fear!

Thank you

Moderators

Hi Oliger45 and sg751, and welcome to BCO. It is a very difficult decision, we understand. Here is some information on Oncotype, in case it could help you.

We're here for you!

Gentle hugs,

The Mods

Oliger45

Hi windingshore (and others),

I just reviewed the TAILORx study results and verified the low score group as being defined as 10 or less. It says if you have a 10 or less, chemo is shown to be no benefit. These results are brand-new--as of September 28, 2015.

the results for the TAILORx intermediate group (11-25) is not yet available. It says "nearly 70% of enrollees have a midrange score of 11-25, and the results to date do not provide information about whether this subset of women can be spared chemotherapy."

So the TAILORx study is providing newer standards regarding whether to chemo or not to chemo, and oncologists are listening.

MsPharoah

Oliger45, you should be able to continue exercising during chemotherapy, however each cycle, there may be a few days after chemo when you will not feel like exercising and as the cycles progress, you will notice increasing fatigue. Everyone is different and it also depends on what type of exercise you do. I am a walker and I was able to maintain pretty well through chemo. If I was a mountain biker or into extreme sports, I would have had to give that up.

I hope you get a low, low score! But if your score indicates a benefit for chemo and you decide you go that direction, we are all here to support you.

I dream of a day when the therapy (chemo, radiation, surgery, whatever) we receive for cancers of all kinds is always beneficial. So much work to do!

MsP

Moderators

Here is another link that you may find to be a helpful summary:

What My Patients Are Asking: What Do the TAILORx Trial Results Mean For Me?

Nebraska917

I am 29. I was diagnosed with stage 1, er/pr positive, grade 2, her 2 negative. I had a bilateral mastectomy. My score came back at a 23. I just finished my first round of TC on monday. Since I was intermediate, we went ahead with the chemo. Trying to do everything possible to make sure it's gone and stays away.

mdg

Hop on the cold cap thread....there is a company girls are getting some financial assistance from so they can use the caps. I don't remember the company, but post a message there. There is also a Cold Cap FAQ thread that should have the information. It may be worth checking out.

mustlovepoodles

My Oncotype was 23. I also have 2 gene mutations and my tumor was ER+ PR- HER2-. My MO considers it Luminal B, which is more aggressive. She said, "You need chemo" and I said, "okay". I had already researched well enough that I *thought* chemo might be on the table.

I have not had a bad time of it on chemo. Some diarrhea, some taste changes. Fatigue is the worst from Day 3-8 following chemo. I did get an infection and had to be hospitalized for a few days, but I recovered pretty quickly. I have only lost 3 days work since beginning chemo in Oct.

I did lose most of my hair on Day 17, so I wear hats and I have a really nice wig to wear when I go to work or church or other gathering. Most people would never guess I'm wearing a wig. I have had strangers compliment my hair and ask if I colored it myself or had it done in a salon--"salon", I said, LOL.

Nebraska917

I'm on day 3 right now. I have had a horrible sore throat for 2 days. No fever yet. So I'm hoping for no infection. What type of infection did you get with yours?

mustlovepoodles

Nebraska, I got a pretty serious infection 3 days after my first chemo. They did all kinds of blood cultures, urine culture, chest xrays and never could find the source. I had a high fever and severe weakness for about 3 days and my blood counts were all over the place. I was hospitalized for 4 days and went home on a powerful oral antibiotic.

I also ran a high fever 3 days after my 3rd chemo. Went to the ER again. They did all the same tests, but nothing turned up. This time my blood counts were good, so they gave me some IV antibiotics and sent me home rather than admitting me to the hospital. No oral antibiotics this time. I ran a low grade fever for another 24 hours, but after that I was good to go.

Sjacobs146

I was 48 at time of diagnosis, my Oncotype score was 23. My doc told me that the positive node was the tipping point that caused her to recommend chemo. If it weren't for that, she would not have recommended chemo. I did 4 rounds of TC. It was no picnic, but I survived.

jedimom

My Oncotype was 25 & I did 4 chemos. With the 4 chemos & Tamoxifen my recurrence risk was cut in 1/2.

The 4 chemos are totally do-able. Be good to yourself, try to eat right & drink LOTS of water.

Good luck & God bless

cajunqueen15

Exercise depends on your counts too. I had one good week and one bad week on the AC cycle but on the third round, developed severe neutropenia and could not exert myself. Now my counts are up, but I get days and days of horrible bone pain on Taxol/Neulasta. TC might be easier to tolerate for some (not all). My energy is lower, but def not bedridden. I am 35

jedimom

My MO told me to take Claritin to help w/ the bone pain from my Neulasta injections. In the end I couldn't tolerate the pain from Neulasta & was switched to Neupogen. I did better w/ the Neupogen.

God bless

mustlovepoodles

I haven't had much bone pain with Neulasta. After the first chemo it was pretty bad for a couple days, but then I was hospitalized for an infection so maybe that had something to do with it. After chemo #2 I just had aching in my facial bones, kinda like a toothache that moved all around. After chemo #3 it hasn't been bad at all, just some knee joint pain. Hopefully, my 4th (and last!) chemo will be even better than this.

Oliger45

Thanks, Ms. Pharoah, it looks like I should be prepared to scale back on the exercise during chemo. After I posted I realized my reason sounded a bit vain--more truthfully, I am worried about my state of mind. Even in perfect health I depended on daily exercise to keep my mood elevated.

Thank you, Moderators, I have read "What patients are asking...what the TAILORx study means for me." What I take from it is that folks who previously considered themselves off the chemo hook may no longer be. That's because, before the September results, low score meant less than 18. And that was translated as "chemo will be of no benefit." Now that is said only for those who score10 or below. Meaning it's an open question for anyone above that. I am wondering what others think about that. Am I off base?

Does anyone know where to find a...chart, say--that correlates the scores and the percentage of risk?

MsPharoah

Oliger. I didn't think your reason sounded vain at all. I exercise every day, for both physical and mental health and when I can't, I suffer the consequences. When I was at the end of chemo, I recall several days when I had to rest between the most basic steps of a normal process. I love to iron (OK I'm a nut!). I remember ironing the collar of the shirt and taking a rest, then one arm and cuff, rest...other arm cuff, rest. You get the picture. My husband heard me in the laundry room bawling, tears streaming because I felt like I would never be able to iron again. The good news is that only happened one time and yes.....it was no time before I was back to ironing. We moved back to be near my daughter after treatment and I do her ironing and love every minute of it.

Hugs!! MsP