Oncotype DX score of 26 - chemo or no chemo?

Sunset860

My Oncotype DX test score came back as a 26 and I am having the hardest decision on what to do about chemo- My MO said it my decision as score fell in the intermediate range. When I asked for her opinion, she said she has gotten more conservative with her recommendations as she has gotten older and if I was 39 she would say yes do chemo, but at my age 59, she didn't think the chemo side effects out weighed the reoccurrence risk. Just don't know what to do, am afraid of chemo as I have many issues with allergic reactions to chemicals and even had anreaction to thedye used for the sentinel node procedure. Any thoughts would be appreciated

Luckynumber47

If ou want it in black and white, ask to have them do a Mammaprint test. There is only high or low - no in between.

Before Oncotype the oncologists looked at tumor characteristics to determine if chemo was necessary. Things like tumor make-up (mine is IDC), Mitotic rate (how fast your tumor divides, lower is better) stage (basically how big your tumor is and whether nodes are involved) grade (is this an aggressive tumor or slow growing) ki67 - another indicator of how fast the tumor grows, and whether you are ER/PR positive. Since your oncologist felt comfortable letting you skip chemo I'm guessing all of those indicators are in your favor.

My understanding of AIs (if you are ER/PR positive) is that they offer a much higher percentage of protection than chemo with limited side effects. Now if we just had the crystal ball.........

KBeee

Getting a second and third opinion and possibly the mammoprint will help you decide. It's hard when there are no easy answers

Sunset860

Thank you. Decided to go for a second opinion. Appt. is tomorrow

smiletxstyle

Interested to know your decision and how you’re doing now. Almost identical situation with a score of 26, just slightly younger, almost 54. Oncologist & surgeon both agree, professionally, either choice will be right. With a 87% chance of no reoccurrence (which my gut says i’m already there!) not sure the side effects of all the chemo toxins makes sense for 4% pts - tatistically, that’s a rounding error. Leaning towards SAVI radiation and incorporating a healthy diet, holistic benefits daily and removing toxin with an amazingly positive attitude to live life to the fullest every day.

Meow13

I was 53 at dx, I had two 1cm tumors one ilc and one idc, my oncodx came back 34. I had no nodes involved I was 95% er+ and pr negative. I did a mastectomy and diep reconstruction. I chose no chemo and did 4 years AI drugs. On my 7th year no cancer.

Marymc86

I'm also interested in her reply. I had oncotype test, scored 27. I don't want chemo or hormone therapy. Side effects scare me. 36% chance of recurrence if I do neither. No node involvement, clear borders at lumpectomy, breast reduction tissue also clear. I want to take my chances. Having second thoughts. Diagnosed February 12, 2018. IDC, 1.3cm 0/3 nodes. New member of this site.

Marymc86

I'm also interested in her reply. I had oncotype test, scored 27. I don't want chemo or hormone therapy. Side effects scare me. 36% chance of recurrence if I do neither. No node involvement, clear borders at lumpectomy, breast reduction tissue also clear. I want to take my chances. Having second thoughts. Diagnosed February 12, 2018. IDC, 1.3cm 0/3 nodes. New member of this site.

Meow13

Marymc86, you could just leave it at that. I think getting follow up scans, mri and mammograms on a regular basis is a good way to go. I didn't pursue additional hormone therapy after the 4 years I took it. Still have residual side effects but nothing earth shattering. If I could go back I am not sure what I would do. There is no way to tell if AI drugs were effective.

Marymc86

I appreciate the response, Meow13. Scans? No one has recommended anything except the usual follow up mammograms.

I think I will take my chances and hope I don't regret it later.

Meow13

I have one mammogram a year and one breast mri each year. I have extremely dense tissue. My oncologist is very quick to schedule mris for pain. I hurt my back and got an mri to check for cancer. Also tinnitus doctor said get a sinus mri. My doctor believes in mris.

Aprilbud

So glad that I found this discussion board. Just got back from the onc today. My score was 37. With a 10 year recurrence of 25%. I had made up my mind from the beginning that I would not do chemo. Only hormone Therapy. My bc surgeon said from the get go that I would not need rads or chemo and I am leaning that way. I am 62. If I live another 7-10 years with no recurrence I am ok with that. Someone tell me that I am not crazy?

Diag 4/17/2018. IDC stage 1a. Mastectomy 5/30/2018. Nodes negative ER+ PR+ HER2

Meow13

Aprilbud you are not crazy at all. I had a score of 34 and in retrospect I am soo happy I didn't do chemo. If I had it to do over not sure if I would have done AI drugs.

Moderators

Aprilbud, welcome to our community. Every decision is so personal, so no, you are not crazy. You need to decide what makes sense to you, your life.

Aprilbud

Thanks Meow. I am still leaning towards no chemo. Just doing AI for the next 5 years. I can’t worry about what may or may not happen in 10 years. I am living for today. Happy that my bc surgery is over. Looking forward to getting fitted for my prosthetic next week. I will worry about the future when it gets here.

Marymc86

Apribud, I do not think you are crazy. I skipped chemo and my oncologists were clear they wanted me to do it. I'm also considering skipping out on Tamoxifen, too. I'm doing radiation now and, so far, it's going well. Halfway through it. I'll have to tackle the drug therapy issue next. I suppose I'll cave and try it, but I really don't want to.

I hope I don't regret skipping chemo later. I've had moments when I thought I was crazy, but I think I can live with my decision even if it does recur. So many stories of people who did opt for chemo and still had a recurrence. I think I would have done it if I had been HER2+ .

Jeepgirl1957

Hi! I am feeling the same way as all of you. Just got my oncotype test today with a 26. Onocolgist texted me Good news. Not high risk. No chemo. Just radiation. I am 61. Almost 62 in a month. 1.1 cm tumor found on 3D mammogram. I had a lumpectomy on November 19th. Clear margins. No lymph node involvement. ER+PR+Hers- I am just worried. I actually can't stop worrying. About what I eat. Am I doing everything I can? What did I do to cause this cancer? Etc. Now should I have got chemo? No sugar? Will it come back soon? I am driving myself crazy. But I just don't know what to do...

Meow13

Hi Jeep, I was 53 at dx, I was scared to do chemo and I was also scared not to do chemo. But I looked at the data and said "No chemo". But it always bothered me, why is my score so high. I think my high er receptor percentage and virtually no pr receptors drove the score up. I felt so much better having read studies that show AI drugs, like anastrozole, were so much more effective than tamoxifen in my case, er+ pr-.

I thought, you know, alot changes in 10 years, well yes and no. At 61, I wouldn't do chemo either. Keep up with scans and any potential health concerns, you want to jump on it IF it returns. But also enjoy your good health.

Marymc86

My Oncotype was 27. I am 55 and my MO highly recommended chemo for me. I said no and did not do it. I also am not taking Tamoxifen, which was also highly recommended. My MO resigned right at the critical decision point for me. Just my luck. Since then, August, I've seen the "substitute " MO and this week, I see ANOTHER substitute MO. They said the decision to do chemo in the intermediate oncotype range, 19-30, is based on age. I was told 50 and under chemo is recommended. My MO put me in the younger range even though I was past 50 because I was not completely through menopause, which was news to me, and because I'm otherwise active and healthy. I'd usually be thrilled to be put in the young group, but I didn't want chemo. It scares me. What if it makes other body systems worse? I've worked hard at being healthy, I don't want to kill the good to maybe prevent more bad. And the maybe is the key word there. I'm at peace with choosing no chemo. Sometimes I feel like I should be taking tamoxifen, but again, it's all a maybe. You have to choose what you think is right, be at peace with it and live your life. I am having a diagnostic mammogram this week. Scared to get the results. I don't think we will ever feel like it's just routine anymore.

etnasgrl

I was 41 when diagnosed and my Oncotype score was 27. Based on my age. my MO wanted me to do chemo, however he also honestly told me that it was unknown if the benefits of chemo would outweigh the risks.
Chemo can be SO hard on your body, leaving life long side effects for some people. I did not want to put myself through that if I didn't know that I would receive some benefit. So I declined chemo. Did radiation and have been on Tamoxifen for 3 years now. 

Meow13

Marymc, I was 53 in better shape than most 30 year olds, my score was 34. I said no chemo, your score of 27 is not conclusive for your age of 55. I went into menopause at age 44. When I was first dx at 53 I looked maybe 40 years old. Now after 4 years of AI drugs I look my age. I am trying to recover it is hard now at age 60. I was unwilling to sacrifice my good health and do chemo, I wish I had known the real side effects of AI drugs. Getting better and no sign of cancer.

Marymc86

meow 13, I have followed your posts since my diagnosis. You were the first one I saw on these boards that had a higher oncotype and refused chemo. Your posts have played a part in influencing my decisions. I appreciate your input. I've also read where you have said if you could go back you might not do the AI either. In the post on this thread, you said you wish you had known "the real side effects of AIs ". Can you tell us what you mean by the real side effects? The reason I don't want to take AI s is joint pain and bone loss. I don't want to take Tamoxifen because of increased risk of stroke. I had terrible joint pain in my 30s for some unknown reason. I'm not suffering with that now, but I certainly don't want to take a drug to cause me to feel like that again. And, I don't wish to become disabled from bone loss and pain from arthritis. I made that point clear to my MO. Then, she explored the idea of tamoxifen. She tested me to see if I was post menopausal. 2 tests. Estradiol was finished. FSH still in play. So, tamoxifen was a possibility since I had not finished menopause. My family has a high incidence of strokes. I told her no to the tamoxifen if it could possibly cause a stroke. I don't wish to have a stroke. Once that happens, I'm pretty much in a nursing home. No thank you. So, my fear of being permanently disabled and unable to care for myself FAR outweighs my fear of dying from cancer. So, my MO and other doctors heard me and I did the surgery and radiation and that's all. If it comes back, I might decide otherwise, not sure.

Meow13

Well, I have aged so much since taking the drugs. I have pain especially at night. My extreme dry eye, thank God, has gone away. My joint pain is better but not gone and I have been off AI drugs almost 3 years. My skin is still dry and uncomfortable. My bones are as expected for a woman my age. I was told no permanent side effects and that just isn't true. It may very well be the reason I didn't have a recurrence but I will never know.

This idea of regular exercise and being active will prevent joint pain is NOT true. I still get on the treadmill and swim but I will never feel like I did before my dx.

Marymc86

Thanks for the reply. No bone loss? That's good. I thought that was a given.

Marymc86

Thanks for the reply.

Meow13

Yes, I have bone loss, but the loss isn't significant and considered normal loss with age. Well that is what I am being told. This last 7 years have been an aging experience for me. Whether treatment has shortened my life expectancy statistics quote 1 to 2 year life expectancy reduction. It doesn't seem to mean much.

I just want to get rid of lingering pain. I don't take any medications, rarely take advil or tylenol. Those salon pas pads seem to help, I use them at night. They have a strong odor but I like them.

Marymc86

I've heard of salon pas pads, but not sure what that is.

I hope your pain does subside. Do you take Vitamin D? I have had bad joint pain in the past. I'm not having any right now, thankfully. I think vitamin D 3 helps.

Meow13

yes vitamin d and krill oil, doesn't help.

everetta

I have my oncotype done twice. The first time it came back as 31 and the second time as 27. Has anyone had there test done twice. I can't decide if I should do chemo or not. I am 68, 1cm ILC, node negative, grade 2., estrogen +, PR -, Her2- I have had two consults one said do chemo the other not. Any advice.

Meow13

everetta, was your tumor close to the chest wall?

everetta

No my tumor was not close to the chest wall. Would that make a difference