Oncotype score 30, weighing options and confused

sos, so sorry you are dealing with this! Tough decisions. I was 58 at DX. My onco score was 21. As you can see,(after much thought), I opted for chemo. I am otherwise healthy, but I still worried about long-term SE's. I had 4 rounds of TC. My thought process was, that I wanted to do everything I could, while I could and not have regrets should the beast reappear down the road. If it's any consolation, my SE's were minimal and my MO said I was her poster child! She told me I could go either way. I have a family history, although my BRCA was neg. It is a lot to process. You might want to get a second opinion. I am on Tamoxifen with no SE's, now. I did have my MO reduce my last dose of Taxotere due to a reaction. I have no regrets. There is no guarantee with or without chemo. Good luck with your decisions. PM if you wish.

Sos, good luck do what you think will be best for you. Can also do cold caps for hair, ice for mouth sores and they have pretty good anti nausea. One of my friends had wicked diarrhea from chemo, I hate it because you so little control.

Reading all over this board about Oncotype test. The nurse practitioner of my oncologist called with my result . It was 11 , she said doctor would go over all the info on Thursday with me and his recommendation. I'm hoping the number is low enough for no chemo . I'm already scared enough about taking tamoxifen, can't imagine throwing chemo into the mix .. I guess what scares me the most is there never seems to be a perfect answer. How do I know I don't have some random crazy cancer cell hanging out somewhere . Don't want to have a pity party but feel this roller coaster ride will never stop

SOS, in case you haven't seen this and are interested, here is a link to an article that describes the different parts that factor into the Oncotype recurrence score. There is a lot of science here, but I found the equation in Figure 1 very interesting - it shows how ER lowers the score. PR is part of the group ER score, so we can't determine how the two independently affect the score.

http://www.senology.org/Oncotype_DX.pdf

Sos1125- thanks for the words of encouragement ❤️

I can sympathize. I hope you look closely at the link jo jo provided. I wonder if your MO was using cancer math or adjuvant rather than an Oncotype formula.

Info from traditional pathology results don't always match Oncotype. I was told by Genomic Health directly that 30% of grade 3's have low Oncotypes, for instance. I suggest you call Genomic Health's customer service line to talk to them. In many ways they were more helpful to me than my doctors. They are highly trained.

You are under some time pressure and it is good, if unpleasant, that you know that.

Here is my case if it helps:  I was grade 3, high ki67 (20), with lymphovascular invasion but negative nodes. I had one positive HER 2 test (from biopsy) and one negative HER 2 test. I was 95% ER+ and 80% ER+. My Oncotype score was 8, which was a surprise. I was ready for the worst.

The first two MD's, based on the HER2 +, got me ready for chemo and Herceptin. Then I got a negative HER2 and we waited on the Oncotype. When it was low, I asked my second, main oncologist if he would retest HER2 and reorder Oncotype. Genomic Helath agreed with me and said they would do it with MD request. The second MD refused to do this and the tumor board had said no chemo.

Third MD went along with second MD and was very cheery. But said second MD was one of her best friends (ha ha). So on to fourth MD.

Fourth MD looked at grade 3, LVI, high KI67, one HER2+ and said "this is a tumor that wanted to go somewhere." She also said "I don't blame you for being troubled." She got me an echocardiogram and a wig Rx and went to bat for me in many ways:

She retested the HER 2 with more cells counted, so more thorough- results, negative.

She talked with Genomic Health and got a retest of the Oncotype: came back exactly the same, at 8.  That means 6% risk with hormonal treatment. And overall- and this is the big point from the Oncotype- chemo would hurt more than help. Cancer might benefit slightly, but mortality would be worse. And with my age and other health issues, a big no, finally, to chemo. At this point I was 11 weeks out from surgery- not a good time frame so lucky it worked out this way.

But I had to keep going to be sure.

Aromatase Inhibitors are not as bad as you might think. Exercise is important. I recently was in despair about joint pain and stiffness and took care of a dog this past week, who needed to walk an hour/day. Now I feel great. The winter weather had discouraged me from walking.  I started with 1/4 dose and ramped up, which helped my body adjust. Your body reacts to the change, yes, but in a few months it adjusts.

With an Oncotype score of 30, I would have done chemo. I was thinking that anything over 18 I would consider it.  Do you have a paper copy of your report? The charts on there are very helpful in explaining what the numbers mean.

I do not understand why you have different ER scores.  This is VERY important. The ER is key in the Oncotyping. It is possible that your tumor is heterogeneous and is higher in one area than another. Talk to Genomic Health. Maybe you can get both your ER/PR tested and the Oncotype redone. I am hoping your Oncotype was done post surgery, not post biopsy, because the biopsy isn't always the best pathology to rely on.

Bottom line for your decision is to clarify the ER/PR, especially the ER. Hormonal therapy will be the most important if you are truly 98/95. But your Oncotype score would be lower, much lower, if this was the case. (Unless you are HER2+.)  Your MD is using the higher ER/PR in telling you about the 2% benefit with chemo. If your ER/PR is indeed lower, as Oncotype says, your benefit from chemo would be higher and your risk without it higher.

Make sure you get the true results for ER/PR and also talk to Genomic Health.

Finally, yes my slides and blocks got lost and I had to track them down. Since I dealt with 4 hospitals and with Genomic Health twice, my slides and blocks did a lot of moving around. Sometimes someone in pathology could not locate it but I did, by calling around. Sometimes one part of a hospital knows where they are (lab) but another part doesn't (MD).  I got to know all the assistants in all these pathology labs by name and very well and am deeply grateful for their help moving my slides all around the city. My kids told me that my slides were "promiscuous"!

ps Editing to add that I believe- and others can confirm- that Genomic Health grinds the tumor and gets a score that takes several different areas into account, so off the cuff, I would trust them more than pathology result on ER. Genomic Health can tell you about this on the phone.

My Oncotype score would likely have been far lower had my ER been higher than 72%--but my PR was 97%, so that definitely landed me on the “low" side of the "low vs. intermediate" divide. Genomic Health measures chemo benefit by how rapidly your tumor cells appeared to have been dividing--the slower they divide, the less likely cytotoxic chemo would be to kill them and the more likely it would kill mostly your faster-dividing “normal” cells such as epithelial (mucosa) and hair follicles instead. With a lower % of ER & PR and a higher mitotic rate score and tumor grade than, respectively, 1 and 2--as well as a positive HER2 result--my Oncotype score would have been higher and the benefits of chemo might have outweighed the risks. There’s at least one person here who, despite being at the high end of “low” (17) opted for chemo. (She cold-capped and kept half her hair, but because it was unusually thick to begin with nobody could tell she’d had any loss). I still don’t know why the calculator tool available to patients assumes Tamoxifen rather than an AI as hormone therapy, since the average age of onset is 61--very few women are still perimenopausal at that age.

My MO chose letrozole as the AI for me because it’s the third-generation AI and showed greater efficacy and lesser incidence of onerous SEs in women with higher BMIs. Most of my ER+ friends who were slender to begin with were given anastrozole or exemestane, at least initially.

I had a grade 3 with high Ki67 but the Oncotype was so low that chemo would, according to them, be harmful and of little benefit.  It is really hard when tests conflict, or when the treatment that pathology would seem to suggest doesn't match up with Oncotype. That can work both ways, meaning, high or low Oncotype being unexpected. MD's expected me to be happy but  I am still troubled some by the mismatch and my fate was in many ways decided on based on the Oncotype rather than traditional pathology.

SOS I think you have a different picture but a similar challenge in terms of conflicting tests. I really hope that the three appointments give you clarity or at least a feeling that you can move ahead more sure than not. If you relied on the Oncotype alone, you would most likely have chemo. Check the paperwork if you have it (or get it) and yes Genomic Health can be helpful. Most important I think is an MD you can trust.

I think that some docs don't rely on the Oncotype as much as others, frankly. I don't know if this means they are sensible or old-fashioned!  I don't really understand where your first MO was coming from with the 2% but if you can find out whether that is valid,  and based on a Genomic Health physician site, that would indeed be an argument against chemo.

Good luck. I remember the inertia I felt after surgery.  I didn't have my usual go getter personality and delayed some of the opinions too long (also my daughter had surgery, other stuff). You are getting your opinions at a good time, but it is tiring to contemplate. I promise once you've seen the other docs you will feel so much better and surer!

A Mamma-print test may be an option for you also, since you have an intermediate score...but, more waiting. I didn't do one, but was offered it. Did not want to muddy my brain any more or wait any longer to start TX. If you are going to get one, I would have your MO order it sooner than later.

Dear SOS:

I wish you the best of luck.  You are going for many 2nd opinions which, I think, is very wise.  You have done a great deal of research and I hope that these doctors can answer your questions in a satisfactory manner.  It is very stressful to have to make such a difficult decision.  Good luck with your choice and with your tx.  I will pray for you and send you hugs.

Dear Live4Them:

Good luck.

Dear WindingShores, BarredOwl, Jojo, and KeepTheFaith:

Thanks for all of the informative posts and links.

Dear Rose:

I am so sorry that you are in so much pain and that you continue to have such serious side effects from chemo.  Hugs, prayers, and positivity to you.  I wish you well.

FYI:

I am taking Arimidex/Anastrazole and I have no side effects.  Maybe you won't either if you will be taking an AI or Tamoxifen.  Good luck.

SOS did you get the address that DF used in mailing the slides? Were they sent "attention to" a particular person or MD? Were they sent to pathology or to the doctor's office or to the cancer center?

I thought my slides were lost when DF sent them to a certain hospital. The oncology office did not know where they were.  I had someone looking for them. But when I called pathology directly, and was given a supervisor to talk with, she managed to find them. There are other situations I won't go into but basically sometimes the right hand doesn't know what the left hand is doing in these hospitals. If you can get a person in pathology to try to track them down, that might help. Or maybe you already have. It is also possible they have been returned and are lost at DF or in the process of being reentered in the system.

Those slides MUST be somewhere. It is very unlikely they were lost in the mail.

Those original slides were presumably chosen as most representative for your cancer.

Where is the block that Genomic Health had for the Oncotype?  Was it returned to DF?The Mammaprint is a good idea. Maybe another MD will order it, and the block sent to Genomic Health could be used. 

You are at 7 weeks post surgery? I was told 12 weeks was the outside limit for chemo after surgery but 8 is no doubt better. The time pressure is so hard.

Has anyone offered to start you on hormonal therapy while you wait? How does your current MO view the discrepancy in results on hormonal receptors? I felt a little better taking Femara while I made decisions, though  don't know if that meant the more extended time with new testing (I was at 11 weeks post surgery) was addressed by the Femara.

Man, I know just how you feel. I remember this period very well. You will find a more peaceful time within a few  weeks. Whatever we decide, we make peace with I think. The bottom line  is that we hope for the best no matter what we do, and during all of this we learn there is no certainty and, for me at least, that the science is far from where I thought it was in terms of understanding cancer, period.