In your 40's with low Oncotype score, what was your decision?

gracebead

Hi everyone,

 I'm starting a new thread for ladies in their 40's with low (0-17) Oncotype DX scores.  Since 40's is still considered (actually we are) very young to have BC, and the age itself is a risk factor, I thought it would be nice to see how we made chemo decision based on the age and low Oncotype Dx score.

I'm 45 year-old, stage1, grade1, 1cm IDC with ER+/PR+, HER2- with no nodes and no lymphovascular involvement.  My Oncotype DX score came back as 12, and 2 oncologists say "NO" chemo.  Initially after the diagnosis, I was ready to do anything for my kids (15 and 10), but now with the low onco score and the doctors "no" recommendation, I can't make a decision.  I'm seeing another oncologist next Tuesday, and will make up my mind...  Please share your experience and prayers for all of you!!!

momof3boys

Hi Grace- I did TC x 4. My Oncotype score was 16. My MO told me that I wouldn't be wrong to refuse chemo, but she couldn't say I was right either. It's such a hard decision. I'm 43, and hav three young boys (16,10,7). No lymph node, no LVI, either. But, my tumor was larger than 2 cm, and my MO's group thinks that's a factor in the decision process. They also use 11 as a cutoff for 'young' otherwise healthy women. Did you do a lumpectomy? Are they planning radiation? I chose a BMX and again, because of the size of the tumor, having radiation to the incisional scar, only.

gracebead

Hi Momof3boys,



I have 3 boys including my husband!



I chose a BMX too and need rads as I have less than 1mm deep margin against the chest wall. I am not very comfortable with my score of 12 like your doctor says cutoff of 11 for young patients, but two MO's I saw are against chemo. I want to treat my BC as aggressively as I can, and it was my shot going for a BMX, but I"m not sure if it is wise to have the same approach with chemo decision. I feel I need to listen to the doctors, but still there is a nagging "what if.



Will get 3rd opinion next Wednesday and make a decision. Thank you for sharing your perspective!!!!!

Crescent5

Chemo was never an option for me and low oncotype with 95% + ER/PR confirmed that tamoxifen was my drug of choice. I hated the idea of 5 years of a med, but I take it every night after I put my son to bed. His beautiful, sleeping face reminds me why I'm taking this stuff. I take it with a smile on my face.

voraciousreader

AnniceMD started a thread, "Stage 1, grade 1 and pre-menopausal"....There are a bunch of us on that thread!  Check it out!   Great information about our treatment protocols..... Good luck with your decision.

ALittleBitBritish

Onco 9, no chemo, clear margins, no rads, BMX...tamox 5 years...do not really like taking any pills - but SEs have all completely gone now.

Life is good!

DiDel

I had onco RS of 17 and did 4 rounds of TC. I wanted to do everything I could to prevent a recurrence. I had multifocal IDC and after my pathology from mx came back they discovered another tumor 1mm that was poorly differentiated suggesting it was becoming more aggressive as it hopped from duct to duct. Of course, if I had gotten a 12 I would have headed on my merry way. I think I would rather do chemo than rads. Chemo is not an easy road, and you should have a very good support system especially with children. I never got sick but I was soooooo tired. The fatigue was something I had never experienced before. After my last treatment I slept for a solid 25 hours...missed a whole day. I never got sick and maintained a very healthy diet. There are lots of threads here to support you either way you decide to go in your course of treatment,.

Good luck!!

Diane

voraciousreader

momof3boys....I'd love to hear more about what your physician said about the cut off being "11" for younger women.  I know the TailorX study is investigating the OncotypeDX test and the trial is including low scores, beginning at 11.  However, the justification for the 11 score is to hopefully prove that a score BELOW 18 will NOT benefit from chemo.  The only way that they can prove this is by including the lower scores...

I realize that the OncotypeDX score is simply one tool of many in deciding whether or not chemo is right for an individual.  Age is most certainly a factor, as well as menopausal status in determining whether or not chemo is appropriate.  I just find it hard to believe that a physician would arbitrarily choose a score of 11 for a younger women, to decide whether or not chemo is appropriate, since there is no supportive data at this time.  Finally, for women with low risk of recurrence and choose not to do chemotherapy, because the risks might outweigh the benefits, there are many more treatments under investigation that are available such as ovarian suppression and/or Zometa infusions...While the data is more compelling for women closer to menopause to do Zometa infusions, rather than younger women, the data is very promising.  Likewise, in the SOFT trial, ovarian suppression for ER+ tumors is looking promising as well.   

mdg

I was 45 when dx and my son was 4 years old.  I had an oncotype of 17 but had angiolymphatic invasion and clear nodes.  I did BMX and then the chemo was a toss up because of grade 2 and angiolymphatic invasion.  I got two opinions on chemo - one med onc said no to chemo the other said I could benefit. I don't think they really know...this is all a mystery and everyone's body is different.  I opted for chemo and did TCx4.  I used cold caps to keep my hair.  Chemo was over in 9 weeks and it was not as bad as I imagined it would be.  I wanted to look back with NO regret and take every treatment available to me for my young son.  I am on tamoxifen now too. 

gracebead

I wish I don't need rads either, but with my less than 1mm margin (my RO called it "almost positive margin") I don't have a choice.

Thank you everyone for sharing your thoughts and I have upmost respect for all of you beautiful and incredibly courageous ladies... 

changes

I was diagnosed at 47, with stage 1, grade 1 IDC. The oncologist was on the fence about chemo, due to tumor size (1.1 cm) and my relatively young age, and we decided to let the oncotype be the deciding factor. My score came back 9, so no chemo. The score pretty clear indicated that the risk of chemo far outweighed the benefits. I'm taking Tamoxifen.

DeeLew84

I was diagnosed at age 44, with stage 1, grade 2 ILC. I had a bilateral mastectomy. My score came back 17. My oncologist had said that he would recommend chemo if the score was 18 or above. He felt that there would be no real benefit to chemo so I am taking Tamoxifen. 

bevin

I was dx at age 45.  I had a 2.1cm invasive tumor and multi focal spot next to the primary tumor. My Onco score was 11.  I had 5 nodes removed all negative and er+ pre+, her2, neu was 1+. I did need a reexcision to get clear margins.

I had 3 Onco consults.  Two said they'd be comfortable with me not having chemo, but offered it, one said  "I should just do the chemo" to have the chemo as I was so young.

I elected not to have chemo, had 38 rounds radiation.  Honestly, for those deciding, if god forbid this ever happened to me again, I don't think I'd make the same decision.  I look back to much and didn't realize how much this stupid cancer would affect my psyche.

Bevin

bcisnofun

Hi gracebead - I totally feel your pain in deciding this.  Deciding on a bilat mastectomy was EASY - but deciding on chemo was so hard.  I was 45, no nodes, 1.5 cm IDC in one breast and dcis in the other.  I kept saying to myself if oncotype came back under 12, no chemo, over 12 yes chemo.  So when it came back straight on 12, I was painfully stumped on best course of action.  Obviously I didn't want to do chemo.  My doc said saying either way was a perfectly reasonable decision, but based on my age and otherwise good health, he leaned toward chemo.  His way of getting me to decide was to say, okay, 12 correlates with an 8% chance of recurrence.  How does 8% feel to you.  I think some people say wow, 92% chance of no mets - good - no thanks to chemo.  People like me say, can we do anything to reduce that?  He said it would only reduce my risk 1-2%.  My final decision came when I stopped thinking about it as 1-2% and instead as 100 people sitting in a field and telling Mrs. Jones and Mrs. Smith - sorry, you are the % that would have otherwise lived had you done chemo.  I sure didn't want to be Mrs. Jones or Mrs. Smith.  So off to chemo I went.  It stunk, but it was do-able.  I look back now with gratitude that I did it because for me, I never have to think if the cancer comes back...what if. Certainly this is just my experience and I completely respect other people who made the opposite decision. Wishing you peace with your decision.

LtotheK

I wanted to lend my support, as this was a tough one for me.  39 at diagnosis, 12 Oncotype, node negative IDC ER/PR+, IDC edited to add the important stuff:  grade 3.  However, understand the medical community now understands there are shades of grey within the grades, which is why my grade 3 can be a low Onco, and my friend's grade 1 was through the roof.  Some lymphovascular on biopsy, none at final biopsy.  Which I'm learning doesn't mean much.

I got not two, but three opinions.  They were "yes", "no", and "maybe".  Two of my opinions were from NCI top ranked hospitals.  The bottom line is, no one can tell you exactly what the right choice is for the under 40 set.  They have an idea that "hitting it hard" with everything available ups the chances of disease-free survival.

Another thing to add:  8% for a 12 is with hormonals, it's 16% without.  I found that alarming. That's also assuming you can stay on them five years, not everyone can.

I'm a 41 year old in menopause thanks to chemo.  I can tell you this, I don't regret my decision one bit.  Not for a second.  I feel that all of it, including the menopause, was the right thing for my body.  I believe estrogen was wreaking havoc on my breasts. They have become about 1/2 as dense, and even smaller now that I don't have raging hormones.  And I do think they were raging before chemo.

I'm so grateful to have had my choices, and based on all opinions, I feel that with my profile, chemo is the best choice.  Had two of my opinions said no, I wouldn't have done it. 

It is two years out!  Tomorrow is my second anniversary of the day I was diagnosed.  Besides some thinned eyebrows and what will probably be issues related to early menopause, I'm grateful to have found my cancer when I did, and done the treatment I chose.  

PLJ

41 years old, misdiagnosed for 1 year so I *wanted* to do the chemo. However, mitosis was 1, mixed mucinous carcinoma (so size was actually smaller than 1 cm because of some mucin), no LVI, clear node (only 1...gulp) and all positive prognostics. Oncotype came back at 16 and all 4 MOs with whom I spoke (1 was family), said very strongly that the se's of chemo outweighed the benefits for me, with there being a 1% risk of death from the chemo upon infusion not to mention the other potential serious side effects. I finally settled for Tamox, ovarian suppression along with 6x Zometa as per ABCSG-12 protocol. Was this the correct decision? I'll let you know in about 22-24 years, when my risk for recurrence drops to 0. The flip side is how would I feel if I had ignored their opinions and insisted on chemo then had severe se's, heart failure, leukemia...but no recurrence? It is all so very confusing and I wish it was an easy decision. Like someone else said, decision to do BMX was *so* much easier...just take'em off! I wish you well and peace of mind as you make your decision. Once you have accepted a treatment plan, never look back!

gracebead

I'm SOOO grateful to all of you for sharing your stories!!!

I can still feel the pain and anguish all of you had in making decisions as I'm reading the posts and it makes me tear up...  I do agree that BMX was way easier, and my stress level is at par with the initial days of my diagnosis.  Feels like I'm dealt with a card and I don't even know any of the rules of the game...

Thanks again!!! 

momof3boys

@voraciousreader: I'm not sure what my MO based that on. She just stated that as a matter of practice for her group, they use "11" as a cutoff point for young, otherwise healthy BC patients. I took that to mean anything under 11, would not recommend chemo. Above 11, would look at the Oncotype score plus other mitigating factors in recommending whether to do or not do chemo. My score was 16. She didn't push me either way until I made the decision to do chemo, then she did tell me that if it were her, she would do the same thing. I had a low score, no nodal involvement, no LVI, but a larger tumor. I'm 43, and premenupausal, very good shape, fit, active, etc...young children.

voraciousreader

Thanks momof3boys for clarification!

Dianarose

I had a lx on 3/15 and had 4 positive nodes. My MO ordered the Oncotype. On 4/11 I had a bmx and she took 14 more nodes and all positive. Two days ago I got my score from the surgeon and it was a 6. Now I don't know what to do. I have 17 positive nodes, but a score of 6 and the cancer that is in the nodes is the same cancer they did the oncotype on. Stressed out!!!!

voraciousreader

Dianarose...please try not to upset yourself. From diagnosis until choosing a treatment is probably the most stressful time. Had your doctor not done the OncotypeDX test, you would be a chemo candidate. In fact, the OncotypeDX test has NOT been validated for patients with as many nodes as you have. So the question is how much weight does the OncotypeDX test have in your situation? Probably not much. Perhaps a tumor board should review your case AND a second pathology review is in order. Please be patient with your team while they help you sort out a treatment plan that works for you. Good luck!

gracebead

 Dianarose...((((((squeeze hugs)))))) to you!

Dianarose

I understand that they haven't valadated the test with a lot of positive nodes, but my worry is that being how it is the same cancer as in the breast what difference is chemo going to do now if it wasn't going to work when they thought it was only 4 nodes. I am hoping he can get me in the vaccine trial that is now in phase III. I would have to go to Mass. but it is only a few hours away. Boobs are a dam curse even once you get rid of them.

voraciousreader

I know it seems logical to assume that..but unless it is statistically validated, that may not be true. Perhaps for many positive nodes chemo IS effective irrespective of the Oncotype DX score.

Dianarose

I want a crystal ball. I will see what the MO has to say tomorrow. He is very big on research and if there is something they can't do here he doesn't have a problem sending me somewhere else.

voraciousreader

I wish you well!!! Hopefully the MO will be able to sort things out for you. Good luck!

gracebead

Dianarose...

I am very new to BC and not well versed enough, but want to share what my RO told me. He said when deciding on a chemo decision, everything needs to be looked at, not just the Oncotype score.  Your BC size is small and medium grade with a very low Oncotype score, but unlike its favorable profile it acted really aggressively.  This discrepancy should weigh in heavily when you make a decision.  I'll keep praying for you...

Dianarose

gracebead- they don't think it acted aggressively, they actually think it has been there as long if not longer than when I had bc the first time in the other breast, which was almost 8 yrs ago. It was not detectable even with an MRI so it went left unnoticed. Lobular is good at hiding  and they couldn't really compare it to the other breast each time they did mammograms because the other side was so damaged from radiation.

DeeLew84

I just want to give all of you big giant hugs! I am also tearing up just reading this thread. Thank you for making me feel less alone (although in a better world none of us would be in this club!)

LtotheK

For me, BMX was not an easier decision.  I work with my hands for a living, and the risk of lymphedema and movement complications made that a choice I didn't want to make.  So interesting how individual this is for each of us!

Regarding the 11 cutoff for Oncotype--this often stirs a hornet's nest on these boards.  My very famous oncologist at U of C told me until Tailor X is complete, they consider 12 -17 a "maybe". At a score of 12, she couldn't say definitively if I was or wasn't a good candidate for chemo with my other prognostic factors.

gracebead

Happy Second Anniversary LtotheK!!!  So happy for you!!