Intermediate Oncotype Test - Dilemma!

voraciousreader

my bad! Fixed! Thanks!

I have been having issues lately with dry eyes....so my vision is terrible!

Marymc86

Hi Sissy60,

Your story most closely resembles mine than any other post I've read. Same story as yours except my score was 27. Everyone thought it would be low. I was feeling so fortunate and that test, which I also almost did not do, devastated me. I've been depressed about it ever since.

I'm 55. I was diagnosed last February at 54. I chose not to do the chemo. I was scared of it. I also have not taken Tamoxifen and my doctors think I'm nuts. I just can't bring myself to take the drugs. I'm at peace with having skipped the chemo. But, I'm still considering the antihormonals.

Sissy60

I am so confused! Had first meeting with oncologist today. Had I not had an onco score of 30 I was set for hormones and radiotherapy. No lymph node/vascular, stage 1. It was a great disappointment. However, I’m even more confused now and need advice as have to decide by Monday!!! I understood with no chemo I was at 19pc risk of future recurrence. 81pc no risk.

I thought if I had chemo it would lower my personal recurrence risk. But no. It would only benefit 2 out of 10 women with onco score of 30. So, I said ..’8 women will be having chemo with no benefit?’ Yes he said. But in 100 women 15 women will benefit. ‘So, I said ..85 women will be having gruesome chemo with no benefit to them??’ Yes he said. Am I missing something? Surely the 85 not benefiting are destroying their immune system at a vulnerable time when they need full immunity to fight off any nasty cells. Wouldn’t they be better off running and eating broccoli than having useless treatment?? He also admitted the chemo was no guarantee against recurrence but likened it to house insurance. A burglar might come so you pay money each month... and yet the insurance company might not even pay out if he comes!

How can I agree to this treatment?? He told me I was probably cancer free from the surgery but insisted I should have it as did all his colleagues. Yet seeing the true benefit makes no logic to me. If I was one of the two (but knowing me I’d be one of the eight!) then maybe it’s worth it but it sounded a dangerous thing to do. I was so shocked but it’s all risk factors against future recurrence which might or might not happen (19pc chance).

I understand they want to lower recurrence overall but treating so many for so few and putting them at risk by the grueling treatment seems very odd to me. My benefit doesn’t seem good at all yet they say I must have it???

Please please I have to decide by Monday and would appreciate greatly some advice.

ShetlandPony

Had the 2018 TAILORx data been available when I was first diagnosed at stage I in 2011, I would have "qualified" for chemo, being "50 years old or younger with a recurrence score of 16–25". And I would have done it, as several little facts about my case really worried me, including the fact that I was premenopausal. As it was, under Oncotype guidelines, with my "low" score, chemo was not recommended to me. Horrifying, eh?

Sissy60

Mary! I just posted my first meeting with oncologist I’m sooo confused!! The rusk factors etc it just seems so nebulous yet they were so insistent I do it and yet my pathology was great but understand that the onco DX is separate. It’s mind boggling and very depressing cos now I think I’m bound to recur with or without chemo!

Sissy60

so not surprised I’m feeling very dodgy about this testing . It’s causing much anxiety for so many....

Sissy60

But Shetland pony it might not have benefited you anyway from what I understood today. Chemo no guarantee to stop recurrence he said. How are we when at our most vulnerable meant to make sense of it all. We're bloody statistics it seems? Did you have a score

ShetlandPony

You are right, Sissy, there would have been no guarantee. There is no way to know whether I would have recurred anyway. That is one of the most frustrating things about cancer and cancer treatment. We have statistics from scientific studies of groups of people, and this gives us something to go on. I mean, it's better than flipping a coin. But these statistics about groups do not tell us individuals what will or won't happen to us personally. The researchers and doctors don't know how to tell who would and would not recur, only what appears to give the best result to similar patients as a group. ( I followed all recommendations available at the time, but fell in the wrong percentage.) You treat all 100 with chemo because you know that with that particular oncotype score there will be 15 people who really really need it, but you don't know which ones they are. It may be hard on the immune system but overall there is more benefit to doing it than not. So yeah, we and our doctors are making decisions without all the information we would like to have. It's high stakes and there are no guarantees. But we know enough to hedge our bets. So we make the best decision we can with the information we have. I feel that I have less regret than I would have had I not done what was recommended. And I did get three opinions.

But about your current dilemma and how do you make sense of it. Take a deep breath. You are not bound to recur. You get to decide what risks you can best live with, what decision will cause you the least regret long-term. You get to choose whether to follow the recommendations. You get to listen to your intuition. You get to ask the docs questions about your risk (I think they will tell you that biology trumps stage/size), about chemo, about how they would help you with side effects. You get to decide what quality of life means to you. You get to decide which of two lousy options will allow you to sleep better at night. I'm sorry you have to do this. This deciding is the most stressful part for many, and most people feel better once their plan is in place.

Sissy60

thanks Shetland pony.. are u from Scotland?!

Oh it's mad. I can't say yes to something that most likely won't benefit me. But I don't understand why it doesnt benefit everyone with a high onco score. I thought that was the point of treating them. If i can't know it's helping me personally then I will have treatment with no hope it's curing me and losing hair, vomiting etc (don't care now I have one large bosom and one teeny!). I honestly don't care about side effects if I thought it was stopping me from recurring.. but the chances are low it's even doing that. My mind is blown away by this. I assumed chemo cured people or why do it?!!! Is it all they've got?

I'm from UK and see we don't have access to all there is in US. Can be frustrating. I don't think I will ever sleep peacefully or feel carefree again. The anxiety will creep into my life ... is it back today?

I guess it's the old adage live for now. Easy to say but not when the sword of Damocles is hanging. I wouldn't feel easier if I had the damn chemo. I'd be worried it was destroying my immunity when I could be fighting the nasties away. Plus it wasn't truly helping me. I just don't understand risk factors🥺 what was your score? I saw someone with a score of 5 who recurred ... ugh it’s awful. And a lady with a 59 who’s doing fine.

oldladyblue

I saw this thread and thought I would add my comment. If you were on this thread before, could you chime in again? And if you are new with a Oncotype 20 to 30 in score, I would like to hear from you too. Or PM me if you don't want to post. My score is 28, I'm 64 years young and I've been excruciatingly wavering between getting chemo or not. At first due to pathology I was told no chemo needed, then it changed to a recommendation for the aggressive AC&T. I have until next Friday to decide. Please if you read this, respond, I'm going crazy with this decision.

My mind just will not settle on one or the other. You know, that usually means that I don't want whatever it is I am trying to decide on. Usually it's something I'm shopping for: do I want to buy it or not? And usually I walk away without buying it.... but of course deciding on chemo treatment is not like shopping, but I just can't seem to make up my mind!!!! I'm driving myself into hopeless insomnia and worry.

thecargirl

Have your doctor do the RSCP and RSClin, they take into account your clinical picture as well as the Oncotype RS. The Magee Equations is also a good comparison to Onco RS. I think you will see your score goes down with your Dx.

oldladyblue

Thecargirl, Thank you so much for recommending the RSCP, RSCline and Magee Equations. I will request them tomorrow.

oldladyblue

I just ran the Magee Equation myself. Anyone can do it by going to Oncotype test simulator from University of Tennessee It said I had a 9% chance of a high Oncotype score and a 91% chance for a low Oncotype score. This was developed to help people who couldn't afford the Oncotype test. What a great tool!

thecargirl

The original Magee Equations can be found if you use Google, somehow Yahoo won't give you the page to put in your numbers . You get an average, mine was much, much lower with all my clinical info added! The Tennessee calculator is not the same as the Magee Equations.

pure0323

Onco score 22, diagnosed in 2011 at age 40. My oncologist explained to me the risk and benefits and I took the chemo. My son was in Jr High and my daughter was in college, it made me feel better knowing I left no stone unturned.

I had 4 cycles of TC. Inever threw up but did experience low blood counts. I had to take a shot that made me a little achy. I was teaching at the time and missed two days of work to go have fun with my family. I took 5 years of Tamoxifen and have done almost 5 of Exemestane.

We are all unique and at different phases in our lives. I have respect for all decisions. In the end, I followed my gut and did what I knew I could live with in my heart.