Oncotype score <25, 1 lymph node involved, avoid chemo?

fihtermom

Hi All,

My mother had a stage II, 2.5 cm tumor that was removed by lumpectomy. She had one lymph node involved with macromets (8 mm) out of the 4 sentinel lymph nodes that were removed. ER+, PR-, HER2 - tumor. If you had a score<25 on the oncotype test and had one lymph node involved, did anyone opt to skip chemo and how has that been so far? One MO has said that chemo is needed with 1 lymph node involved, the other one said we should think about whether chemo is needed as we don't have a definitive answer to that yet.

We want to avoid chemo but at the same time don't want to risk recurrence because the treatment wasn't aggressive enough. Any experiences here would be invaluable!!!

Thanks so much! I am worried sick about my Mother

intothewoods

Hi fihtermom,

I had a low onco score (16 I think) no lymph node involvement a double mastectomy in 2007. I enrolled in the TailorX trial that was looking to determine if chemo was needed for early stage, sentinal lymph node clear BC or if hormonal therapy alone was sufficient for ER+ BC

I was randomized into the tamoxifen only arm (which was what I wanted) I was on tamoxifen for 5 years. Opted not to continue with hormonal therapy after that.

In 2014 I was diagnosed with local recurrence to chest wall and mets to bone. I don't look back to whether I wished I had done chemo but do think it was unwise not to continue with hormonal therapy.

Wishing you and your mom the best!

kebab

I also had a 2.5 cm tumor removed by lumpectomy and had only 1 node involved. I *did* do chemo, and radiation, and tamoxifen, and 4 years later was diagnosed with a skeleton full of metastatic cancer. Not trying to scare you, just sharing my own story.

Unless there is a good reason Not to do chemo, with even just one involved lymph node, why would you take the chance?

Good luck to both of you.

labelle

With an oncotype score of 11 I was told there was only a 1-2% chance chemo would be beneficial to me-there was a bigger chance it would be harmful. So no chemo was the recommendation even with one node involved. Chemo works best with quickly dividing cancer cells. For someone with a grade one cancer like myself, there are very good reasons not to do chemo. Both my BS and OC at two different cancer centers (Vanderbilt and UT) agreed chemo would be more likely to harm me than to help me.

Getting a second opinion is always a good idea, especially if you are uncertain. As I was told, BC is not an emergency, like a severed artery, so you do have time to explore options and get second and even third opinions.

ElaineTherese

As you can see below, I pretty much have had "the works" -- 5 months of chemo, surgery, all my Levels 1 and 2 lymph nodes removed, 6 weeks of rads, and have started 10 years of an AI. It is/was appropriate for my cancer (big tumor, growing fast, one lymph node compromised). Some things to think about re: your Mom --

What grade is her cancer? How old is she? Does she have any pre-existing conditions (e.g., heart problems) that would make chemo particularly difficult to tolerate? Is she on any meds now, and has she struggled with their side effects? Does she still need to work, for income or insurance purposes? Or, is she retired? What is her support network like?

For me, chemo was OK. But, other than cancer and high blood pressure, I have no other health conditions. I also didn't experience that many side effects from chemo, which is typical of how I react to most meds. I had to work through chemo, and I do think it's easier to manage if you take off from work or are retired. Chemo is also easier if you have a support network -- someone who can drive you to or from infusions, someone who can help out with household tasks, etc.

Best wishes to you and your Mom!

keepthefaith

Your mom may also want to ask her MO about the mammaprint test...it may be available if you are an intermediate onco score. I was 21 and chose to do chemo, but like others have said, she needs to weigh the risk vs. benefit in making her decision. Everyone reacts differently to chemo, but it was pretty tolerable for me. There are many things in the Dr's arsenal now to help combat side effects...and this site has a wealth of information and wonderful support to get you through to the other side! Best wishes to your and your Mom!

4pink101

labelle- were you pre or post menopausal when they ran the oncotype test? I am in a similar situation and having difficulties deciding on my treatment plan.

4pink101

intothewoods- did you have radiation after your BMX? My story is a lot like yours...

labelle

I was premenopausal at 51-actually more like perimenopausal-I was having irregular periods (still am). Estrogen testing showed I was on the "cusp" of menopause, per my BS- which means I'm a hot, sticky mess half the time! No chemo, but I did have RADS.

Warrior_Woman

In addition to the Oncotype providing a recurrence risk it provides the reduction of risk with chemo. I think that information is on the 2nd page. Check it. My tumor was 7 mm with no node involvement and an oncotype score of 24. The reduction of risk was sufficient enough for me to choose chemo and my MO 7 the 2nd opinion MO agreed.

Hopeful82014

I was told by one MO that, in my situation, anything over 18 on Onco. meant she'd advise chemo. Another 2 MOs said (again, in my case) anything under 25 the benefit would be minimal compared to the toxicity. I am doing radiation (a LOT) and have also been accepted into a clinical trial that I think offers more benefit than chemo would. However, my positive node was just barely positive and we know from neo-adjuvant treatment that I respond very strongly to Femara, which I will continue taking.

I would have needed to work throughout chemo as well as dealing with serious illness in my family - it would have been very, very difficult to juggle everything. I have no idea how this will play out in the long run but I do know that there are no guarantees with cancer; women who've done everything have recurrences, as well as women whose treatment was less aggressive.

In your mother's case, my concern would be the 8mm in the node.

In general, the automatic recommendation for chemo for any positive node reflects a more traditional, conservative view. There is a growing realization that this may not serve all women equally well and, in fact, there is an on-going trial (the SWOG RX-PONDER trial) that randomizes women in your mother's situation to chemo plus endocrine therapy OR endocrine therapy alone. Your mother may want to discuss that with her MO. Good luck to her and to you.

readytorock

I would do, and did do chemo. I had oncotype of 19 and one lymph node positive. I am very happy with my decision!

My MO would have been comfortable with my decision not to do chemo, and I had initially decided not to do it, but I was so uncomfortable with that decision I was having panic attacks. As soon as I changed my mind and decided to do chemo, I felt so much better.

I'm not trying to talk anyone into chemo, but I'll admit that I didn't understand what "Stage IV" meant when I decided not to do it.

Mary59G

When I had my mastectomy in January 2015, they checked the node and it was positive so he took out more (42 to be exact), they were all negative. My next visit with the onc she offered to try a trial which i said yes so they did the Onco test and mine came back with a 9. She told me that the general next step is chemo because of the node involvement, but when I decided not to she fully agreed with me and sent me to the raidologist...........who also told me she didn't think it was needed either........so I went with no chemo or radiation but I am taking the pills for probably 10 years...........I truthfully think this is all a crap shoot either way. Just remember whatever you decide you must be ok with your decision and don't second guess yourself. It is hard but thats what I am doing. I see the surgeon in a couple of weeks and I think at that time they will do a mamo on my other side so we shall see. I may not be out of the woods but praying that everything will be. Good luck with whatever decision you make.

Mary

Meow13

i had oncodx of 34 and I chose no chemo. So far so good I did not have nodes involved but I had 2 tumors 1 cm each one duct aand the other lobular.

ALittleBitBritish

I had 1.4 cm of cancer in 1 node, more than in my breast, glad I didn't choose chemo, no need for rads and my cancer was very slow growing, chemo isn't a guarantee of anything at the end of the day

Do what you feel comfortable with is my advice.

djatsw47

I have a IIa invasive ductal 1.4cm. Removed by lumpectomy. One of 6 nodes removed had cancer cells. My Oncotype is 27, so my Oncologist plans to start me on chemo this week. I am not looking forward to side effects from it, but am not ready to depart this world yet (68yo) and plan to do whatever it takes to keep going at this point.

SweetHope

djatsw47, Chemo is a state of mind too. You will do great. Please join the July Chemo group and share your journey with others going through this strange experience at the same time.

SueH58

djatwsw47 - My oncotype was 20. Wouldn't you know it--right at the low end of the middle section. So I did the Mammaprint test, which cam back high risk. After more investigation, I feel the oncotype "intermediate" range should be grayed out and marked "not enough known to project." From what I understand, there has not been enough research done to predict the outcome from chemo/no chemo in that range. I heartbreakingly decided to do chemo. I chose CMF, which is easier than the other choices, but for someone with my stats, a good choice. I have 2 chemos left--so in 1 month I will be done. I am glad I chose that option so that I never have to look back.

Meow13 - Curious as to why you chose not to do chemo with such a high oncotype score...

Everyone have a great week.

Meow13

Well every fiber of my being was saying nooooo. I didn't want to risk my overall health. It didn't make sense that my slow growing tumors would benefit. I was also worried about killing all new fast growing cells and comprising my immune system. If it comes back I'll deal with it then. Also had one friend and my neighbor's brother die from the treatment. So far so good it will be 4 years this fall.

SueH58

Meow - So glad you're doing so well. How's the hormone therapy going?

Meow13

yuck can't wait to be done with exemestane.

Carolyn62

I'm grappling with this right now. I met with my oncologist for the first time last Friday. I wanted to have the oncotype done so that I can decide on chemo. Immediately she told me that I mus be sure that if the score is low I truly don't want chemo. She said she had a patient whose score was low that changed her mind and wantedo chemo, and insurance initially denied it. Now, she got it with a letter from the doc, so I'm not sure why that should stop me.

She leans strongly towards me having chemo because my tumor is 3.5 cm. my nodes and margins are clear, lymphatic system indeterminate. She wants my risk for recurrence to be lowered as much as possible (as do I!), and feels chemo is worth it. I may want chemo even with a low onco score, but now I feel hesitant because of the insurance issue. I talked it over with my ex and current husbands, and my daughter (ex is an MD), and they all agree I should have the oncotype. My ex remembers colleagues and patients who suffered more from the chemo than the disease. Of course, he's not an oncologist and things have changed with the drugs offered.

Any input from anyone deciding whether or not to have the oncotype because of the insurance factor? Thanks in advance. I may make the call for them to go ahead today.

SueH58

Carolyn62 - I had the oncotype test, hoping that it would come back low and that I wouldn't need chemo. It came back a 20, which is stated to be intermediate. But in future discussions/readings, I think that intermediate zone should be grayed out as "not enough evidence to determine benefit from chemo." So I also got the Mammaprint test, which came back high risk. I tried to argue with the MO, and said "what would you have done before these genomic tests were available and he said "chemotherapy for anything over 1 cm). So, I shed some tears, sucked it up, and am now in chemotherapy. HOWEVER, the oncotype test WAS put in place to eliminate folks with early stage cancers from having to take chemo if their cancer is low risk, and encourage chemo if their tiny cancers were very high risk. So, perhaps if yours come back a 4, for example, you will decide against chemo. But to your Dr's point, if you feel you want it anyway due to the size of the tumor, why bother with the test? And it is nerve racking - what if yours comes back intermediate? In retrospect, now, I'm glad I decided to take chemo. There's no going back, and I know, now, that I did everything possible to prevent recurrence.

Carolyn62

Thanks, Sue. I went ahead and asked for the oncotype to be done. Most likely I'll get chemo, but I want to know what range I fall into. I was most upset that my MO told me that if I thought I would still want chemo even if the test is low I shouldn't do it. I want to know either way. I'll know in two weeks where I fall.

SueH58

Rose - what was your score?

Carolyn62

Thank you, Rose. I think it's a very rare occurrence, and frankly, I got angry as time went on that she presented that to me right out of the gate. I switched MO's today after debating with the BS who is a friend of the MO who told me I needed to only have it if I was sure I didn't want chemo with a low score.

My ex is an MD and he pointed out a good rationale to support my decision. If my onco is low but I still want chemo, at least I will be comfortable discontinuing if the side effects are far more than I can manage. Conversely, if it's high, I'll domwhatever it takes to get through chemo, even if I'm puking every 5 minutes.

I was physically ill,after the little insurance debate with the BS today. Her emphasis was on the fees they have to eat when insurance doesn't pay. I asked how often that's happened and she had no idea. I'm just very happy I switched MOs.

FemaleAthlete

I am in the waiting game for my oncotype score. My MO says she is not certain if she will order chemo for me if my score is in the intermediate range 18-31. Is this another decision like have a MX vs a lumpectomy or a BMX? I am not sure which way to go if I do fall in the middle. Any input??

SueH58

It was my understanding that anyone falling in the middle range would be recommended to have chemo. In my readings, it appears this range is more described as "results unknown" than intermediate. So if you're in the intermediate range, you could fall in the low category, or the high category, but enough findings have not come back for intermediate to determine if the score is gradiant or not. Because I was a 20, I also had the mammaprint test that comes back either high or low--no intermediate. I fell in the high category and am having chemo. If I had a 2cm tumor and stage IIB, I would definitely take chemo unless the oncotype came back very low, i.e. under 10. After much anguish, I decided on chemo and am so glad I did--you can never go back and if/once a cell has metastized, there is no cure. So catching any possible cell early is essential.

I hope this helps, even if it's not the answer you were hoping for. This part of my diagnosis/treatment was the absolute worst. Once the deccision was made, I forged ahead.

readytorock

EXACTLY WHAT SUEH58 said. I had oncotype of 19 and did chemo even with LOW mammaprint. And I'm glad I did.

Hopeful82014

A number of MOs feel that for any score under a 25 the benefit of chemo is debatable. You would want to look at all your factors; grade, node status, HR status, etc. before making a decision in that case. (There is a large trial underway in which women under a score of 25 are randomized to chemo or none. Clearly, that wouldn't be in progress if there were major safety issues associated with it.) I think a lot of it depends on whether your MO is old school or more nuanced in their views.

If you're really on the fence there's always the Mammaprint.

keepthefaith

I had intermediate of 21 and my MO said it was really up to me...(as all of our decisions are), but that she would recommend it. She didn't really push it. Over, done and no regrets. No mammaprint done.