To chemo or not to chemo
I am premenopausal (43) diagnosed 12/30/2024. IDC 2.5 cm, HR+ (both highly ER+ and PR+), HER2-, Grade 3, oncotype 26, LN 1+. I had lumpectomy in Feb where they found a 3.5 cm DCIS tumor as well. I had to have a re-excision 2 weeks later because the margins weren't clear. I am looking for any testimonials of women who are in similar positions that did not do chemo and just did the endocrine therapy and radiation. I do not want to do chemo but my children are still young (my youngest is 10) so I also want to live as long as possible.
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April,
So sorry that you find yourself in this position. We all know how rough this can be. Let me start by saying that few WANT to do chemo. It is not something that most look forward to (yes, a few go for it with gusto because they want to throw everything at it).
I am not familiar with the latest assessments that can predict the value of chemo for an individual. I do know that there is an Oncotype test that specifically looks at DCIS to determine if chemo would be beneficial. Has your oncologist suggested this or anything similar? If something like this was made available to you, that might help in your decision making process. Lastly, your children are quite young, and while none of us has a crystal ball and having dcis is more favorable than invasive cancer, recurrence can and does happen with DCIS (again, favorable but not without risk) . As a matter of fact, one of breast cancers uglier sides (rarely mentioned) is that recurrences can occur decades after initial treatment. Please speak with your doctor about any predictive assessments that might help you find a path you are comfortable with, but bc is not all pretty, pink and easily gotten rid of as too many have been led to believe*.Take care
*For some, it actually can be fairly easy and then they’re done. The problem is there isn’t much in the way of predicting who those folks will be.
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@aprilaprn - I’m sorry you find yourself here. are your doctors recommending chemo for the IDC? Is your oncotype 26 for the IDC?
Typically IDC treatment covers the DCIS. Have your doctors given you a risk of recurrence with and without chemo so that you can make an informed decision? Chemo is not fun but it is doable.
Wish you the best with your decision.
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Hi @aprilaprn -
Welcome to the forum. We're sorry for the reasons you are here, but glad you have found us.
I'm not in the group that you are looking for as I did do chemo. I just wanted to say that I do know how you are feeling. I was VERY resistant to the idea of doing chemo and grasping at everything I could to find a reason I did not need to do it. I finally decided to let the ONCOTYPE test make the decision for me. It came back high and I realized I couldn't deal with the risk of it coming back.
You are much younger than I am which means that many more years for the opportunity of a recurrence. Your ONCOTYPE test should have provided you with a Distant Risk of Recurrence in 9 Years and a Group Average Chemotherapy Benefit. If you didn't get this, ask your M.O. as that is important for you as you make your decision. Being Grade 3 stinks (me too) as it shows a more aggressive tumor. The good news is that if you do decide on chemo, there have been studies that show it more likely to attack any rogue cells.
The decision to do chemo or not ( or any other treatment) is always YOUR decision. However, it is very important to understand the risks involved. You also need to be sure that if you make a decision not to to do chemo, you will be comfortable with the decision you made if it does return. It would be nice if it was an easier decision to know who is going to get a recurrence and who is not, but this beast is sneaky and has so many variables that science still hasn't been able to figure it out.
If you decide to do chemo, you WILL get through it. It is not fun and I wouldn't want to do it again, but I would if I had to. (That being said, some people breeze through it.) If you decide not to do it, be at peace with your decision once you make it.
Best of luck to you.
Take Care.
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All treatment decisions are based on the IDC tumor. My oncotype RS is 26 and my risk of distant recurrence at 5 years is greater than 12% so doc is highly recommended TC chemo followed by an Aromatase inhibitor and kisquali and radiation. But she has said since the cut off for no chemo is 25 or less, I am on the border so this is my decision of course. I don't take medications at all normally and I am thin and very active with the gym, working, kids and my chickens and garden. My labs are all completely normal. I'm very healthy and follow a pretty healthy lifestyle so this out of left field for me. Genetic testing was all negative. I did have a very stressful year last year (my special needs son had some worsening of his chronic conditions and my job is very stressful). I know the stress had a lot to do with it. I also know at times I wasn't making the best decisions for my health but that has all changed. I'm focusing on my healing physically, mentally and emotionally. I feel physically the best I have in a long time even after 2 surgeries back to back (I've been out of work for almost 6 weeks) and I hate the idea of being pushed back down with this chemo.
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Oh, my reading comprehension is off today! Sorry that I totally missed the IDC part. That changes things.
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Let me say that all of your concerns about chemo and lifestyle probably run through the heads of anyone dealing with this decision. As to your prior health practices, you must understand that this has helped keep you in good shape as you have done so many of the right things but it is a guarantee of nothing. Can stress be a contributor? It certainly doesn’t help but stress is a very common factor in many lives and is likely not the “cause” of breast cancer. Be gentle with yourself and don’t spend too much time on finding the reason you have bc as the reality is that in most cases , it’s unknown but never think that this was a failing in your health habits or lifestyle.
Not too many like the idea of strong treatments or recovery times but as Mandy pointed out it is very important to understand the risks and be completely comfortable with the outcomes regardless while knowing there are no guarantees nor predictions about the future. Lastly, I also missed the grade 3 part, so I hope you factor that into your decision making. I apologize for my loopy brain!0 -
Hi @aprilaprn, I was at the other side of the chemo cutoff point with an oncotype of 24, 3.2 cm IDC ER+ with DCIS adjacent, one positive node. My MO also said that since I was borderline he would support chemo or not. I didn't do the chemo but was more than twenty years older than you and my children were grown. I also live a pretty healthy lifestyle. While that is helpful for preventing disease recurrence it will not kill any rogue cancer cells that may have escaped like chemo is meant to.
Four years out I have not had a recurrence but have had a few scares, some of which are not resolved. Dysplasia was removed from my esophagus and I am scheduled to have a benign tumor removed from my thyroid at the end of the month. I'm currently under observation for slowly growing lung nodules, an indeterminate bone tumor in my hip socket which can't be biopsied but currently looks stable, and most recently extremely high liver enzymes the cause of which is still under investigation. I have had more ultrasounds, CTs, MRIs, PETs and biopsies than I can count. Given my age I am OK with my situation and the decision I made but that would not be the case if my children were still at home. I'm retired now so I no longer have job stress to deal with; sometimes you have no control over what comes with your job.
Since I didn't do chemo you will have to evaluate the experiences of other people who did. Nobody can predict the future. As Mandy said you have to decide whether you would regret the decision to skip chemo if you had a recurrence in five years time when your youngest was 15. All the best with making the tough decision.
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i am 7 years remission with stage 1b lobular and .99mm lymphnode. Oncotype score of 25, dr said no chemo it won’t work, then changed mind because i agreed to rad. i also took anestrozole for 4 years. i told her i want to continue the AI, she said no i might have resistance. i’ve had anxiety ever since but they recalibrated the scored after that massive study, and 25 was low.
So now it’s medium risk?????
now the score on bc.com says this:Recurrence Score of 21-25: The cancer has a medium risk of recurrence. The benefits of chemotherapy are likely to be greater than the risks of side effects.
it said i was in low group before . At 5 years they said ned so i said - that’s good, do you think i will be ok dr said i would never say that bc im superstitious and don’t want to jinx anything.
What happened? and is that for lobular and includes dmx?
Any thoughts on this?
thank you
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sorry i forgot to say i did not have chemo cause the dr said dont and the score was supposedly in the low group, now its not? If she told me i was in other group i would have gotten chemo, i regret that. So now with 25, i should have had it.
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An Oncotype of 21 to 25 indicates an intermediate risk of recurrence. For those over the age of 50 the benefits of chemo probably don’t outweigh the side effects. For those aged 50 and younger the benefits of chemo probably do outweigh the side effects. The company that provides the test advises that women in that intermediate area make their decision with the advice of their oncologists.
Age and the tumor genomic profile are taken into consideration by the Oncotype recommendation but the type of cancer (IDC or ILC), the type of surgery, and whether radiation is done are not. Also, there is no guarantee that following the recommendation will prevent a recurrence.
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You have young children, I would do it. I had a different cancer - I was triple positive. About the only reason I did chemo was because if I had a recurrence I would forever feel bad that I didn do chemo. Chemo is not guaranteed but I wanted to throw everything at it.
I'm 16 years out and have been on BCO the entire time. It's hard for me to see mothers of young children try to find their way through the decision. Good luck.
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