Oncotype came back low-should I stop chemo or keep going??

Regarding age, I am 43, also stage 1, grade 1, my oncotype came back a 5. No one has suggested to me that I have chemo based on my age. I don't know if being grade 2 makes a big difference or not but generally speaking I thought th idea was that with a low score the side effects of chemo outweigh the benefits, regardless of age. The Oncotype test was created because there was a feeling many women were being overtreated with ill effects on their health (other than cancer, of course!)

Are you Er/Pr or Her positive? That might make a difference.



I would not have done chemo if I had done Oncotype and had a low score - I did taxotere/cytoxan, got permanent neuropathy. MO overestimated benefits, underestimated risks. My cancer came back less than 6 months after finishing chemo, so basically I got all the bad and none of the good from it. In retrospect, hormonal therapy may have been sufficient. And so in answer to your question, are there any lasting effects from the chemo you are doing, it is YES and it is NOT fun and has left me unable to work, garden, play music, etc. I have had severe fatigue that has lasted 3 years; my MO said "yes, that sometimes happens." (I have changed MO to one that I trust now)



But a lot depends on how old you are, other genetics of the tumor. There are many new drugs that are beginning to be used that are more targeted therapy for specific tumor types, rather than using the sledgehammer as referenced above, but using a kinder gentler approach.



One other thing that many people don't think about is: if it comes back, what is left to treat it with? In my case, I am not able to use the taxanes or the anthracyclines for my recurrence because I had them to start with and got the bad SEs.



And a final point: statistics are based on large numbers, populations, NOT on the individual. Your chances of having a recurrence is either 0% or 100%, you as an individual. Out of 100 women, 90 will not get recurrence on some treatments, but of the 10 who DO get recurrence, their individual rates are 100%! So just try to understand where the statistics come from - populations - and those numbers just do NOT apply to YOU as an INDIVIDUAL patient. The best approach is for you to get as much information about your tumor as possible, and then think about which treatment is most likely to give YOU benefit, and a good MO can help guide you. You need to make sure your MO agrees with YOUR values (long life, long life despite quality or SEs, quality of life only regardless of how short it might be, etc.) and works with you to get a treatment plan that has a reasonably good chance of giving you the best benefit with the lowest risk.



In any case, we are here to support you, whichever route you choose. This is not an easy choice, but you need to listen to your heart. You are scared now, and making decisions in fear is not the best way to make them. Get as much information as you can, then listen to your gut. Don't let loved ones or any one of us here persuade you one way or the other, or you will resent them. We will share our own experiences with you, but you should not consider that advice - we will support you in your choices, will hold your hand and give you cyber hugs when you need them.



May you be loved, may you be free from fear and pain, may you have peace.

Very similiar stats to you.  I was 43, grade 2 with oncotype 14 (also no lymphovascular invasion).  My MO said tamoxifen was my best weapon since I was highly ER+.  Chemo would do more harm than good he felt, and I agreed.   Taxotere can be tough and could lead to some permanent neuropathy issues..and even more rare..permanent hair loss.  I would really do some research and see what risks you feel most comfortable with.

Not that it should be important to your decision...but I'm just curious...will you still lose your hair if you stop after one treatment?

Also, regarding the opinion from your surgeon....My surgeon thought for sure I'd have chemo too.  However, I take the opinion of my oncologist 10 times over my surgeon for matters of systemic treatment.  My oncologist is the one who has dealt with chemo and BC patients for years and attends the yearly San Antonio Breast Cancer conference and is up on all the latest data and studies.

Yes, I would definitely check on how high ER+ you are...if you were in the lower to mid range, I could see where you might want to add chemo in there for good measure?  

Another question I'm curious about...is one dose of chemo worthless...as in you need to take the full course (like how antibiotics work?)  Or is one dose of chemo "better than nothing"?  I've heard of people stopping chemo after not being able to tolerate it or because of an allergy.  So I've always wondered if it helps at least having a little or not?

I was wondering the same thing Susan - will she get 1/4 the benefit from chemo for having done one treatment or no? Or, on the flip side, is it actually worse to do only 1 treatment - like the way they say your body builds immunity to antibiotics if you don't take the full dose.  The docs may have answers to those questions that would help inform the decision.

I can't exactly remember when I lost my hair (I NEVER thought I would be able to say that!) but I think perhaps it was just after the second dose.  I'm very curious what the answer is on your hair, let us know what you find out!

It's always kind of funny when you keep asking another person, and each tells you something different. I find when that happens, I end up picking out what sounds like what I truly in my heart most want to do.  Often I don't know until I hear it.  Then, that's the person I "listen" to.  So here's my experience, a little bit similar and at the same time different from you. Maybe you recognize  bits of truth in it for you, or not.

Your MO recommends you do this treatment.  How confident are you in your MO's recommendation?  For me, my MO's medical opinion is huge.  My MO is highly respected by peers, knows every thing going on in the field, etc., years of experience, etc.

 I strongly favored chemo from the getgo, though, which I think is unlike most people on this board. I think most people on this board go out of their way to avoid it. But I believed in throwing everything I could at it, literally. What would stick? Would anything? Who knows. But I wanted to know that I had thrown everything there was to throw at it. What would I least regret, fast forwarding into the future, should the worst things happen?  I thought, at the time, that I'd regret more NOT doing it, rather than doing it.  Perhaps I should have been more rational. I'm not going to pretend I came at it through a scholarly, impartial, lengthy study.   I held my breath waiting for the Oncotype to come back-held my breath because my MO said very clearly "the only way" you get to chemo is with a high Oncotype number. I said nothing, thinking only: "what if I get a middle range number? Isn't the jury out on that? Shouldn't I treat that number with chemo, possibly?" But I held my tongue (rare for me) and saved the argument, realizing I may never need to make it (and it turns out I didn't  need to make it).  The chemo in question for me was CMF, that was the only one in the offering for my stats at Sloane.  I know other, different chemo regimes are offered to women with E plus tumors. Maybe if they are younger, or their IDC larger.

Turned out my oncotype test failed and I was at the end of the timeline for when I should start chemo, if I was going to do it. Kind of like you.  So, rather then send more samples and wait more 4-6 weeks,  we needed to decide and so as my MO said, we "dialed the clock back" a few years and acted / made a decision based on old fashioned pathology and other considerations (pre meno age 48 part of it). Basically MO told me if I wanted CMF, there would be no objection and that would be a rational course considering my age and grade.  

I recall that the risks of things like secondary cancers were way way less than 1%. That was the only thing that concerned me in terms of SE.  (There is no substantial hair loss involved with CMF which also made my decision easier.) The other possible negative SE didn't concern me. Neuropathy? Never gave it a thought, I admit.  And I was fortunate with SE so far. All is good, and it's been a couple of years.  However, I still worry about secondary stuff, and things like Robin Roberts don't help allay those fears. But I have to remember that Robin Roberts had a completely different treatment (different chemo treatment plus radiation=how much, etc. we have no idea). When you have radiation AND chemo, your risks are compounded. 

I also recall my surgeon at the one year follow up. Someone else at Sloan with a great deal of experience. Someone who has seen as much as anyone, medically, with this disease.  I expressed my concern to my surgeon that I had done chemo (must have been right after Roberts news) and that maybe I didn't "need" to.  The surgeon so reassured me that I made the right decision in being as aggressive as possible, in 'treating the cancer you have' rather than not out of worrying about what likely won't ever happen.  I guess you had to be there, to see and hear the way the surgeon seemed to look at me so intently and say that so heartfeltly.  It really does give me comfort, no matter what happens to know that I DID do the best at the time with what I knew and what medicine could offer.

 See for some people the 3% isn't much. For me, it was.   91% vs 88% was alot better.   Or 88% way preferable to  85%. It wasn't like I was ever given a 95% number.  (Also my Mo never gave me hard stats.  Gave me stat ranges.)    

There are definite big legit. studies that show better results with young women who are treated by chemo plus T for HIGHLY E+ tumors.  Just because chemo isn't AS effective on these tumors as Tamoxifen, or as effective as on triple N cancers, doesn't take away from the fact that it helps to reduce risk.  If you are highly E plus like me, that only means that Tamoxifen gives you the biggest benefit.  But chemo, especially if young, helps.  This is why MOs the world over give young women chemo - in additon to T - for highly E tumors.  

I also considered that the oncotype test is a 10 year risk assessment -  yet E+ cancer can  and do still recur 15 years later.   That's the part I just don't get. Again, I never had to go there with my MO as the test didn't apply in my case.  See, I hoped (pre BC) to live for more than 20 more years.  Greedy I know. Aren't we all. 

Thanks, I hope it was helpful. It was long and all about me really but sometimes knowing others experiences/concerns/factors they weigh etc helps. Sometimes its relevant to you, sometimes not.

I'm glad you are very happy with your bmx decision. I have confidence that whether you continue with the chemo or decide not to, you will make the decision that is best for you.  And what's best for you, what you are most comfortable with re risks, benefits, etc., you are the ultimate judge.  I try to fast forward into the future, to various scenarios--best cases, worst cases-- and decide which scenario/decisions I can best live with. Good luck and best wishes with whatever you decide to do.

Thanks Special K, you are  kind and thoughtful.  Re my treatment, I understand that there are inc. secondary cancer risks associated with cyclophosphamide/cytoxan. But they are much smaller than the risks associated with the kind of cancer treatment standardly given for Ms. Roberts' diagnosis.  It's crazy, I know. If I don't worry about one thing, I worry about another.