Oncotype Dx Score of 19 - What to do? Chemo/No chemo
Since then, my oncologist had two tests done: Adjuvant! Online and Oncotype Dx. I had decided to give Tamoxifen a try, based on the surgeon's rec and the Adjuvant results. My Oncotype Dx came back slightly higher than I expected based on the Adjuvant. The Oncotype Dx at 19 put me in the low end of "Intermediate" risk, which means I have to decide whether or not to do chemo (CMF). (I am not low risk or high risk of recurrence. I am in between.) My oncologist recommends Tamoxifen, but says I am in the "gray area" for chemo and that it is up to me.
I think I am leaning toward doing it, just to know I did what I could to eliminate any stray breast cancer cells. My relapse rate (from Adjuvant) would be 17.9% at 10 years, 11.2% with Tamoxofen, 7.3% with Tamoxofen and chemo.
The chemo is CMF, in 6 4-week cycles.
I am otherwise healthy and active. I have children, 18, 16 & 13. My husband had chemo, rad & 2 surgeries for head and neck cancer last year. He has NED and will have a scan next month.
I am praying for clarity and peace in my decision! Anything you can offer is appreciated!
Christ's peace to all you strong women and men!
Julie
Comments
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Hi Julie! I'm glad you're
Hi Julie! I'm glad you're here, but sorry you have to be. I was dx 2 years ago, at age 43. I also was Stage 1, IDC, margin and sentinel node clear. I had lumpectomy. My BRCA was neg for mutation. My Oncotype score was 12. My onco had me do rads (2x/day for 5 days on Trial Study), and I've been on Tamoxifen since Aug 2010. Onco did not have me do chemo because the score was a 12. He said the chemo would be hard on me, and wouldn't change the recurrance rate by much.
My thought was I would be conservative this time, but if I have to go through any of this again.. it's on. I will be much more agressive, mast, chemo, etc. I'm just hoping to fly below the radar. I also do not have any family history.
I know it's a hard decision. I couldn't think of anything else while I waited for the Onco score to come back. The thought of chemo scared me. I think for me, if I had the same dx, with family history even though BRCA was neg, I would really consider the chemo to be sure I did everything I could. Esp at our age and with kids. I have a 9 yr old.
It's a lot to think about, and to wonder if we are making the right decisions.
Take care! Please keep posting and let us know how you are doing!
Julie0 -
Thank you for the input andJuJuBeez said:Hi Julie! I'm glad you're
Hi Julie! I'm glad you're here, but sorry you have to be. I was dx 2 years ago, at age 43. I also was Stage 1, IDC, margin and sentinel node clear. I had lumpectomy. My BRCA was neg for mutation. My Oncotype score was 12. My onco had me do rads (2x/day for 5 days on Trial Study), and I've been on Tamoxifen since Aug 2010. Onco did not have me do chemo because the score was a 12. He said the chemo would be hard on me, and wouldn't change the recurrance rate by much.
My thought was I would be conservative this time, but if I have to go through any of this again.. it's on. I will be much more agressive, mast, chemo, etc. I'm just hoping to fly below the radar. I also do not have any family history.
I know it's a hard decision. I couldn't think of anything else while I waited for the Onco score to come back. The thought of chemo scared me. I think for me, if I had the same dx, with family history even though BRCA was neg, I would really consider the chemo to be sure I did everything I could. Esp at our age and with kids. I have a 9 yr old.
It's a lot to think about, and to wonder if we are making the right decisions.
Take care! Please keep posting and let us know how you are doing!
Julie
Thank you for the input and encouragement, Julie!
You are right. Many things to consider. And many unknowns.
Has Tamoxifen been hard for you? I understand many people have little problem with it, but some have more extreme hot flashes.
Very cute photo!
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Hi Julie,juliebookoch said:Thank you for the input and
Thank you for the input and encouragement, Julie!
You are right. Many things to consider. And many unknowns.
Has Tamoxifen been hard for you? I understand many people have little problem with it, but some have more extreme hot flashes.
Very cute photo!
I just finished
Hi Julie,
I just finished chemo in mid December (Taxotere and Cytoxan) and had 33 rounds of rads which I finished on February 29. I also had a bilateral mastectomy. I was Stage 2, grade 1 er, pr+ her2-, BRCA- , with 2 positive nodes. I was 44 at the time of the diagnosis. I had a low onco score (12) and my oncologist whom I have the utmost respect for recommended I do the chemo and radiation. My first husband passed away from cancer in July 2002 and when this diagnosis came for me I wanted to make sure I did everything I possibly could to stay alive for my kids-I wanted no regrets. My kids are 11. 16 and 14. I am also ready to start tamoxifen when I go meet with my oncologist tomorrow. I'm not looking forward to taking it, but I have had such bad hot flashes from the chemo I figure it can't be much worse!0 -
I have been on Tamoxifen
I have been on Tamoxifen since Aug 2010. I do have hot flashes, but I'm also just warmer in general. I have not gained any weight, but it's harder to lose weight. I do get bone pain and fatigue. And some crazy eczema on my right hand and foot. I cry like a lunatic at the drop of a hat. (so embarrassing sometimes). None of the side effects are horrible, but they are annoying sometimes. It's still better than the alternative.0 -
Hi. My oncologist made itJuJuBeez said:I have been on Tamoxifen
I have been on Tamoxifen since Aug 2010. I do have hot flashes, but I'm also just warmer in general. I have not gained any weight, but it's harder to lose weight. I do get bone pain and fatigue. And some crazy eczema on my right hand and foot. I cry like a lunatic at the drop of a hat. (so embarrassing sometimes). None of the side effects are horrible, but they are annoying sometimes. It's still better than the alternative.
Hi. My oncologist made it very clear that if my onco/dx score was over 18, I would take chemo. I came in at 22. I guess I'm the type to be told what to do. It must be a tough decision. Whatever you decide is what is best for you. I had 4 rounds of chemo, once every three weeks. My hair fell out, and it was no picnic, but totally doable. Good luck and best wishes on your treatment.0 -
This is what doc said to me
I have a similar history to yours. My oncdoc gave choices and basically said you need to choose how aggressive you want your treatment to be and here is the prognosis for each of your choices. I went aggressive with both chemo and rads and do not regret it.
Make your decision an informed one, and you won't regret it either.
Best to you on this journey0 -
What grade was your cancer?tufi000 said:This is what doc said to me
I have a similar history to yours. My oncdoc gave choices and basically said you need to choose how aggressive you want your treatment to be and here is the prognosis for each of your choices. I went aggressive with both chemo and rads and do not regret it.
Make your decision an informed one, and you won't regret it either.
Best to you on this journey
My tumor was Grade 2 (in the middle). While waiting for my oncotype test results, I decided I would do chemo unless my score was lower than 13 (or whatever the highest number is in the low risk range). I just knew my score would be in the mid range, just like yours. It was 31. I didn't need to make a decision. I had chemo. Taxotere and Cytoxin, 4 times.
My personal decision was also based on the fact that I was 63 and knew I would only get older and develop other age-related health issues, so I felt now would be best for me while my health was still good (except for the cancer thing). I wanted to be able to give it all I could while I could.
Only you can make that decision for you. It's good to hear what others chose, given similar scores. Chemo is no walk in the park, but it is doable.
Good luck.
Suzanne0 -
My score was 18.Double Whammy said:What grade was your cancer?
My tumor was Grade 2 (in the middle). While waiting for my oncotype test results, I decided I would do chemo unless my score was lower than 13 (or whatever the highest number is in the low risk range). I just knew my score would be in the mid range, just like yours. It was 31. I didn't need to make a decision. I had chemo. Taxotere and Cytoxin, 4 times.
My personal decision was also based on the fact that I was 63 and knew I would only get older and develop other age-related health issues, so I felt now would be best for me while my health was still good (except for the cancer thing). I wanted to be able to give it all I could while I could.
Only you can make that decision for you. It's good to hear what others chose, given similar scores. Chemo is no walk in the park, but it is doable.
Good luck.
Suzanne
I was 58 and very healthy. Chemo would have only made a 3 percent difference. You are much younger so the decision is different. Such a difficult decision. I chose no chemo but whatever we choose comes with risks? Low and high scores are easier decisions! Hugs.
Roseann0 -
mine was 25
I was 47 when diagnosed, the surgery was the easiest part, then the onco type results came high, i almost fainted when i was told i had to take the citoxan/taxol combo, it's been rough since last may until now and the pill so far is the worst - something very honest from my onco before the treatments started was that i could've gotten all the benefits from chemo with just two rounds, i took three to make everybody happy at home, then 38 rads and the pill, so far all is good, i just took my mammo and came clear, pain and suffering from femara is no picnic but having my hair back and a clean mammo is way worth it, good luck with your decision0 -
I am on tamoxifen I havecctiz said:mine was 25
I was 47 when diagnosed, the surgery was the easiest part, then the onco type results came high, i almost fainted when i was told i had to take the citoxan/taxol combo, it's been rough since last may until now and the pill so far is the worst - something very honest from my onco before the treatments started was that i could've gotten all the benefits from chemo with just two rounds, i took three to make everybody happy at home, then 38 rads and the pill, so far all is good, i just took my mammo and came clear, pain and suffering from femara is no picnic but having my hair back and a clean mammo is way worth it, good luck with your decision
I am on tamoxifen I have muscle and joint pain. My knees are very tender. I have hot flashes but not extreme. I know I have to take this pill to stave off the disease and I dont like it. I will probably be on an extrogen blocker for the rest of my life. My disease was not great. I find exersize helps alot, I am stiffer without it. it sounds counterintuitive but the pain will improve. I try to decrease salt. I am the type who swells easily with it. I just talked to my onc and he said the 'chemo brain" I experience could be from the tamoxifen. I can be such an airhead and it really frustrates me as I wasnt that way before. More blonde or senior moments than I like. so now I have to compensate for this. I will say the side effects have gotten better or more tolerable. As far as amy depression I take an antidepressant and I think it helps.
I had CMF the first time I had cancer, It was more tolerable than the recent chemo I had. I didnt lose my hair although it thinned significantly. No chemo is great.
As Chen says 'we do what we have to do so we can do what we want to do" tough choice we will support you either way.0 -
No chemo or radiationcarkris said:I am on tamoxifen I have
I am on tamoxifen I have muscle and joint pain. My knees are very tender. I have hot flashes but not extreme. I know I have to take this pill to stave off the disease and I dont like it. I will probably be on an extrogen blocker for the rest of my life. My disease was not great. I find exersize helps alot, I am stiffer without it. it sounds counterintuitive but the pain will improve. I try to decrease salt. I am the type who swells easily with it. I just talked to my onc and he said the 'chemo brain" I experience could be from the tamoxifen. I can be such an airhead and it really frustrates me as I wasnt that way before. More blonde or senior moments than I like. so now I have to compensate for this. I will say the side effects have gotten better or more tolerable. As far as amy depression I take an antidepressant and I think it helps.
I had CMF the first time I had cancer, It was more tolerable than the recent chemo I had. I didnt lose my hair although it thinned significantly. No chemo is great.
As Chen says 'we do what we have to do so we can do what we want to do" tough choice we will support you either way.
Non chemo or radiation but taking tamox.I was Stage 0 DCIS.Lumpectomy.I've noticed with the tamox I'm having some memory lapses, some problems with my knees (seem to crack I hear that), and just a overall tiredness but I have other stress issues.LOUSY NEIGHBORS and a few other health issues.No hot flashes.I had total hysteroctomy at 48 now 65.So hot flashes are not a problem.I will continue to take the tamoxifin. Till Dec of 2014. That will be my 5 years.
I don't know what to tell you.You are right on the borderline. Maybe some chemo???? Might make you feel better about the decision than nothing at all.
Lynn Smith0 -
I didn't have to have chemo
I didn't have to have chemo Julie and even though tamox was suppose to be part of my treatment, I didn't take it. It was just my personal choice.
I wish you the best of luck in what you do.
Hugs, Jan0 -
My story is close to yours as wellJuJuBeez said:Hi Julie! I'm glad you're
Hi Julie! I'm glad you're here, but sorry you have to be. I was dx 2 years ago, at age 43. I also was Stage 1, IDC, margin and sentinel node clear. I had lumpectomy. My BRCA was neg for mutation. My Oncotype score was 12. My onco had me do rads (2x/day for 5 days on Trial Study), and I've been on Tamoxifen since Aug 2010. Onco did not have me do chemo because the score was a 12. He said the chemo would be hard on me, and wouldn't change the recurrance rate by much.
My thought was I would be conservative this time, but if I have to go through any of this again.. it's on. I will be much more agressive, mast, chemo, etc. I'm just hoping to fly below the radar. I also do not have any family history.
I know it's a hard decision. I couldn't think of anything else while I waited for the Onco score to come back. The thought of chemo scared me. I think for me, if I had the same dx, with family history even though BRCA was neg, I would really consider the chemo to be sure I did everything I could. Esp at our age and with kids. I have a 9 yr old.
It's a lot to think about, and to wonder if we are making the right decisions.
Take care! Please keep posting and let us know how you are doing!
Julie
I was diagnosed with BC Pr+hr+ in December of '10. I had a lumpectomy in March of '11. Clean margins, no lymph nodes. Stage 1 to early 2. My Onco
Score was 7. I was excited. I opted out of radiation because we were moving to another state. I was supposed to take Tamoxifen but couldn't get past the 15 side effects. So, I decided to go on the Budwig Protocol. I just had a CT and X-Rays and all is clear! Almost 18 months out.... Treatment is such a personal decision. I lost my mom at 61 in 1999 and my dad at 72 in 2008. My brother is in a tough battle and has been for 7 years, he is 54. I was diagnosed at 44.... I am determined to try The Budwig Protocol along with Iodine, Vitamin D3 and IP6 indefinitely... We will see how it goes but I am a firm believer in God and Christs finished work on the cross.... I stand in his word which says "by Jesus stripes, you are healed". You are his beloved. He paid for all of your sickness and pain on the cross! I will pray for your healing!..... Thank you Jesus, Thank you!0 -
Kristysurvivorbc09 said:I didn't have to have chemo
I didn't have to have chemo Julie and even though tamox was suppose to be part of my treatment, I didn't take it. It was just my personal choice.
I wish you the best of luck in what you do.
Hugs, Jan
I didn't have any treatment other than a lumpectomy. Supposed to take Tamoxifen but refuse. Blessings to
You!0 -
I had a lumpectomy withroseann4 said:My score was 18.
I was 58 and very healthy. Chemo would have only made a 3 percent difference. You are much younger so the decision is different. Such a difficult decision. I chose no chemo but whatever we choose comes with risks? Low and high scores are easier decisions! Hugs.
Roseann
I had a lumpectomy with rads, no chemo. I was suppose to take tamox, but, refused it.
Good luck to you,
Lex0 -
chemo or not
Personally, I'd do the chemo. You're young. I'm going to assume that other than the cancer you are in fairly good health. Your kids are fairly young. I'd do anything within my power to make my odds better. But that's just me. You have to make the decision that's best for you and your family.0 -
Thank you all for caring!sylvan said:chemo or not
Personally, I'd do the chemo. You're young. I'm going to assume that other than the cancer you are in fairly good health. Your kids are fairly young. I'd do anything within my power to make my odds better. But that's just me. You have to make the decision that's best for you and your family.
Sorry I didn't reply sooner! Thank you for caring!!!
I have decided to do Tamoxifen but not chemo. I just picked up my prescription. If I can't handle Tamoxifen, I will consider the next option.
** Does anyone know a good tracking template or format for side effects? I want to keep a good record to discuss with my doctor.
I decided that the very small percentage the chemo would reduce my risk of recurrence on top of the Tamoxifen was not worth it to me in my current life situation. Many factors are playing in...
Thank you all SO VERY MUCH for your suggestions and encouragement!!!
I wish I could meet you all!
Please pray for my husband as he has a scan 4/17/12 - head & neck cancer diagnosed 2/16/11 w chemo, radiation and surgery last year, age 48. NED last scan!
God is good, all the time!
Love,
Julie0 -
Praying for your husbandjuliebookoch said:Thank you all for caring!
Sorry I didn't reply sooner! Thank you for caring!!!
I have decided to do Tamoxifen but not chemo. I just picked up my prescription. If I can't handle Tamoxifen, I will consider the next option.
** Does anyone know a good tracking template or format for side effects? I want to keep a good record to discuss with my doctor.
I decided that the very small percentage the chemo would reduce my risk of recurrence on top of the Tamoxifen was not worth it to me in my current life situation. Many factors are playing in...
Thank you all SO VERY MUCH for your suggestions and encouragement!!!
I wish I could meet you all!
Please pray for my husband as he has a scan 4/17/12 - head & neck cancer diagnosed 2/16/11 w chemo, radiation and surgery last year, age 48. NED last scan!
God is good, all the time!
Love,
Julie
Praying for your husband Julie and for you!
Sue 0 -
Invasive Lobular Carc/ER&PR+/HER2-neg/BRCA1&2neg/lymph 0juliebookoch said:Thank you all for caring!
Sorry I didn't reply sooner! Thank you for caring!!!
I have decided to do Tamoxifen but not chemo. I just picked up my prescription. If I can't handle Tamoxifen, I will consider the next option.
** Does anyone know a good tracking template or format for side effects? I want to keep a good record to discuss with my doctor.
I decided that the very small percentage the chemo would reduce my risk of recurrence on top of the Tamoxifen was not worth it to me in my current life situation. Many factors are playing in...
Thank you all SO VERY MUCH for your suggestions and encouragement!!!
I wish I could meet you all!
Please pray for my husband as he has a scan 4/17/12 - head & neck cancer diagnosed 2/16/11 w chemo, radiation and surgery last year, age 48. NED last scan!
God is good, all the time!
Love,
Julie
Dear Julie ~
I hope at this point all is going well for you in your post operative treatment. I have worries about the Tamoxifen myself - I am the queen of side effects so I will be 'eager' to hear of your experiences. My onco score was just received, only a 13 but given the kind of cancer I had (?) I think I am going to opt for chemo. My challenge -- biggest concern -- is that they only thought I had one point of focus. When they did the surgery to remove the tissues (lumpectomy) and my lymph nodes; the biopsy on the removed breast tissue showed another lesion .55cm, completely independent and malignant in the same general area as the other.....never saw it on ANYTHING: mamo, ultrasound, MRI...didn't "light up" like the other did. They did find another area that they wire biopsied and it was deemed benign...only to find this second lesion post operative. I am 47 - have a husband of 27 years (this 05/25) and two daughters, 1 19, the other just turned 13; 4 cats and two baby kittens we are nursing. I have a GREAT deal to live for and I still haven't grown up so...
I really really appreciate all the feedback to your question/concern - all the gals have done their homework and then some - especially those brave enough to explore the alternatives offered. I feel GOOD about my decision to tell the oncologist to proceed with chemo though I am sure the side effects will be a bear..this will just be a summer of change and further metamorphsis. I am hopful that your spouses' results were clean...if not, my sorrow and a long distance warm hug and prayers for a good prognosis.
God is INDEED good...all the time,
L'chaim
Stephanie0 -
Julie -Mamma Llama said:Invasive Lobular Carc/ER&PR+/HER2-neg/BRCA1&2neg/lymph 0
Dear Julie ~
I hope at this point all is going well for you in your post operative treatment. I have worries about the Tamoxifen myself - I am the queen of side effects so I will be 'eager' to hear of your experiences. My onco score was just received, only a 13 but given the kind of cancer I had (?) I think I am going to opt for chemo. My challenge -- biggest concern -- is that they only thought I had one point of focus. When they did the surgery to remove the tissues (lumpectomy) and my lymph nodes; the biopsy on the removed breast tissue showed another lesion .55cm, completely independent and malignant in the same general area as the other.....never saw it on ANYTHING: mamo, ultrasound, MRI...didn't "light up" like the other did. They did find another area that they wire biopsied and it was deemed benign...only to find this second lesion post operative. I am 47 - have a husband of 27 years (this 05/25) and two daughters, 1 19, the other just turned 13; 4 cats and two baby kittens we are nursing. I have a GREAT deal to live for and I still haven't grown up so...
I really really appreciate all the feedback to your question/concern - all the gals have done their homework and then some - especially those brave enough to explore the alternatives offered. I feel GOOD about my decision to tell the oncologist to proceed with chemo though I am sure the side effects will be a bear..this will just be a summer of change and further metamorphsis. I am hopful that your spouses' results were clean...if not, my sorrow and a long distance warm hug and prayers for a good prognosis.
God is INDEED good...all the time,
L'chaim
Stephanie
You didn't seem to
Julie -
You didn't seem to get any answers to the question about side effect tracking. Check with ACS. I had called the 800-number when I was diagnosed, and they send all kinds of booklets with my specific needs, plus I got a planner to keep my info. I recall a sheet to track meds and dr appts, perhaps there was something for side effects. I'm sorry, that was two years ago, and I just don't remember. Another site that has planners for treatment is the 'Livestrong' site. You might find what you need there, too.
Take care! Keep us informed! Still praying for you and your hub!!
xoxo
Julie0
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