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Topic: Oncotype DX score of 26 - chemo or no chemo?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Aug 28, 2016 07:11PM

Sunset860 wrote:

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

Dx 6/28/2016, DCIS/IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Aug 28, 2016 08:00PM - edited Aug 28, 2016 08:01PM by 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.........

My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Aug 29, 2016 07:43PM KBeee wrote:

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

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Sep 1, 2016 01:28PM Sunset860 wrote:

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

Dx 6/28/2016, DCIS/IDC, Left, 2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Mar 10, 2018 11:19AM smiletxstyle wrote:

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.

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Mar 10, 2018 11:53AM - edited Mar 10, 2018 11:54AM by 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.

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May 20, 2018 06:05PM - edited May 20, 2018 06:22PM by 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.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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May 20, 2018 06:06PM - edited May 20, 2018 06:07PM by Marymc86

This Post was deleted by Marymc86.
Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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May 20, 2018 06:23PM Meow13 wrote:

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.

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May 22, 2018 01:18AM Marymc86 wrote:

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.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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May 22, 2018 01:25AM Meow13 wrote:

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.

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Jul 6, 2018 04:57PM Aprilbud wrote:

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

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Jul 6, 2018 05:19PM - edited Jul 6, 2018 05:19PM by 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.

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Jul 6, 2018 05:44PM Moderators wrote:

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. Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 8, 2018 12:28PM Aprilbud wrote:

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.

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Jul 9, 2018 11:04PM - edited Jul 9, 2018 11:08PM by 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+ .


Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 14, 2018 08:57PM Jeepgirl1957 wrote:

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...

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Dec 14, 2018 09:22PM Meow13 wrote:

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.

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Dec 15, 2018 08:38PM - edited Dec 15, 2018 08:39PM by 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.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 15, 2018 09:38PM etnasgrl wrote:

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. 

Diagnosed at 41. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 15, 2018 10:38PM - edited Dec 15, 2018 11:10PM by 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.

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Dec 15, 2018 11:53PM - edited Dec 15, 2018 11:54PM by 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.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 16, 2018 12:00AM Meow13 wrote:

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.

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Dec 16, 2018 11:12AM Marymc86 wrote:

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

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 16, 2018 11:14AM Marymc86 wrote:

Thanks for the reply.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 16, 2018 05:23PM Meow13 wrote:

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.

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Dec 17, 2018 09:23PM Marymc86 wrote:

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.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Dec 17, 2018 09:30PM Meow13 wrote:

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

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Feb 11, 2019 10:55PM everetta wrote:

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.

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Feb 11, 2019 11:44PM Meow13 wrote:

everetta, was your tumor close to the chest wall?

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Feb 12, 2019 04:24AM everetta wrote:

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

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