Radiation or Chemotherapy. Help!

Hi sorry you have to be here and dealing with different opinions on your team. I would be hopping on over to the nearest, best cancer center your insurance will cover for a second opinion. I wish you the best of luck!

rrgoods, can you get a second opinion, preferably at a different institution? I’m concerned that your oncologist automatically recommends chemo for OncotypeDX scores as low as 12--that is certainly not in line with current practice, and sounds like there might be some conflict of interest going on. The reason Herceptin wasn’t mentioned is that you’re HER2 negative. Herceptin is targeted therapy given to HER2 positive patients.

Something is fishy here. Yes, a score of 21 is intermediate, but at the low end of intermediate. That means the benefits from chemo might or might not outweigh the risk. Your onc’s insistence on chemo for scores in the 12-17 range (almost universally considered low-risk, in which the risks outweigh the benefits) is puzzling--unless she either derives some benefit from prescribing it or needs a certain number of low-scorers for a study in which she might be participating. There might be another explanation--she might be old-school, where to be “conservative” meant to treat as radically as possible, to throw every weapon in the arsenal at a tumor no matter what. I’m reminded of the late 1980s, when surgeons who did lumpectomies or partial mastectomies were considered wild-eyed rebels and mavericks because the prevailing wisdom at the time was modified radical mastectomy, followed by powerful chemo and full, long-protocol radiation regardless of tumor size and characteristics. Heck, yours isn’t even a cm!

You need to look at different predictive scores than the vague “prediction of chemo benefit” ones cited. Ask her where she got these scores. What is more predictive are recurrence scores: the percentage of likelihood of developing local and distant recurrence at various milestones (5. 10, 15 years) as well as predicted overall survival. There are online tools she can use to plug in not just your oncotype score but also your tumor’s cytology and other factors such as your age. If you can’t get a straight answer, or what she tells you is at odds with what you read on BCO, that raises a red flag that she might not be the best “fit” for you.

I’m also worried that she isn’t even mentioning radiation, which is just plain weird--especially if you had lumpectomy (which I’d imagine you might with a tumor considered “tiny”). The only time radiation is off the table with an invasive tumor is with mastectomy. And it’s just plain bizarre that your surgeon contends that tamoxifen and radiation mitigate the effects of chemo--they have NOTHING to do with chemo--some hormone-positive patients get all three, some only radiation and tamoxifen or another anti-estrogen drug. Perhaps what your surgeon meant was that the combination of tamoxifen and radiation would be, for tumors like yours, more effective and less risky than chemo.

By contrast, your friend was almost certainly treated properly for the type of cancer she had: hormone-negative and HER2 positive is a type that is more aggressive than hormone-positive and treated with both chemo and Herceptin (or a similar targeted therapy). Her side effects, while not unheard-of, were not very common but unfortunately unpredictable--most chemo patients don’t get permanent neuropathies or foot drop, nor uncontrollable infections (although infections treatable by IV antibiotics do happen more often). It is unfortunate that she got them, but without chemo her prognosis for long-term survival would have been much poorer.

Don’t make any snap decisions unless you’ve gotten a second or even third opinion from a major medical center, especially one that specializes in breast cancer. I suspect your oncologist is an outlier in this regard.

rrgoods....I urge you to get a second opinion at a university based teaching hospital. My concern is the oncotype score is only one part of the puzzle to look at. I don't like your docs look at one thing rule. Just remember no matter what the docs recommend its ultimately your decision. Just make an informed one and you will do fine. You are right to question any treatment plan that any doc recommends. Yes we need to trust our docs to a certain extent but not blindly. Good luck and keep us posted....

Well, here's another thought. I didn't do rads, chemo OR AIs (hormonals) the "first" time so now that I've recurred -7 years later, the first line of defense is an anti-hormonal!! Easy peasy. If/when that stops working THEN I move on to IV chemo. I am about to finish rads. If I'd done them the first time, I couldn't do them again.

I know some of you are thinking, well heck, if she'd done all that the first time she wouldn't be stage IV now. We don't know that do we? I had a double mast as I needed to get back working the fastest and that was the choice I made. I have other health issues that affected my choice as well. I now have a pacemaker, which would make an IV chemo a bit safer for me now, but we won't go there just yet.

I've been on these boards a long time and seen more ladies pass of heart damage than I care to think of. The problem is their deaths are noted as "heart" rather than "breast cancer" but it was the treatment that killed them.

I am very nervous with the rads to my chest wall right over my heart and lung. I was told there is a 5-10% chance of damage but I have to do it as there would be a 100% chance of death if I don't.....

I don't know if you should do chemo or not (a second opinion would be very valuable). But I have to say that I can not begin to count the times I've heard that a surgeon tells the patient one thing, and the oncologist says another (which is what happened to me, "You can have a mastectomy or a lumpectomy with radiation") and so I was blindsided with a chemo recommendation from the oncologist (which I did with few problems then and no permanent effects after). So my thought is that surgeons should NOT say anything about treatment options (other than to say that with a lumpectomy you will need radiation, and even if you get a mastectomy you may still need radiation). Radiation and chemo recommendations are two totally separate recommendations. Radiation is to kill any cancer cells that may be left in the breast (or area around the breast), chemo is to kill cells that may have already escaped into the rest of the body.

rrgoods,

While it is better to start chemo between 30-60 days after surgery (you need time to heal), 90 days is still within the acceptable window. I started chemojust under 90 days from excisional surgery which fully removed the tumor. I wasn't thrilled with the delay due to lab or doctor error because my tumor came back as 30.

Earlier is better with aggressive cancer but at a 21, you have time to make the best decision for yourself.

I know how confusing this is for you, rrgoods. There is just no "right" answer for someone in the intermediate range of oncotype, nor is there one for those in the low range (my score was 15). My onc pointed out that chemo would give me a 3% benefit. He indicated that while he did not recommend chemo, he would be comfortable offering it to me if I felt the 3% benefit was more important to me than the associated risks and various types of unpleasantness. Based on his recommendation, I opted out, but with initial misgivings. I put my trust instead in rads and arimidex (recently switched to tamoxifen), leaving me with a recurrence probability/possibility of about 7%. This number is higher than I'd like, but, as it turns out, is one I can deal with.

Unless there is some risk factor that you are not aware of (Do ask!), I'm guessing your Monday onc, like mine, will not strongly recommend chemo, but will want to help you work through whether you are more comfortable with both the short term and distant outcomes of chemo vs. no chemo.

Also, do not hesitate to call or email onc #1 to ask for his specific reasons (other than oncotype score) for recommending chemo.

Most likely, you are a rads candidate, either now, or after chemo. Have you met with an RO yet? If not, maybe you could schedule that now too. If specific side effects are your concern, do, of course, discuss those possibilities with your onc/s, and maybe your pcp, and neurologist.

And if you are still undecided after Monday's meeting, perhaps you could ask that onc to prescribe an antihormonal.

Also, could you please fill in your diagnosis info on your dashboard? We always find it helpful.

Hi rrgoods:

I read your question last night.

What I meant was that personally I do not think it is inappropriate to consider or discuss the option of chemotherapy for those with RS = 18 to 30 ("intermediate risk" by standard ranges) or even for some with RS = 11 (or 12) to 17 ("low risk" by standard ranges), based on what is known about recurrence risk in people with scores 11 or above. However, those with lower recurrence scores appear to have lower estimated risks of distant recurrence, and therefore lower estimated risk reduction benefit from the addition of chemotherapy. Meanwhile, the risk of adverse events is the same whether the estimated risk reduction benefit chemotherapy is say ~ 3% or ~ 15%. Potential benefit should be weighed against potential risks, in a case-specific manner.*

On the other hand, if you understood the MO correctly, and she always recommends (vs. considers the option of) chemotherapy to those with RS as low as 12 to 17 (who under standard ranges are "low risk"), that would suggest that this MO takes a very conservative approach. Such a practice would not account for weighing potential benefit against risk or for personal risk tolerance.

You mentioned you reviewed information about the intermediate scores on the Genomic Health website. This page indicates that consideration of other factors is appropriate:

http://intermediate.oncotypedx.com/en-US/Using-The-Intermediate-Recurrence-Score/Integrating-The-Intermediate-Recurrence-Score.aspx

"The information provided by the intermediate Recurrence Score result can also be helpful in making treatment decisions when viewed in the context of other patient-specific factors, including:

Patient age

Patient concern and preference

Comorbidities

Conditions that may increase the risk of chemotherapy-associated toxicity

Tumor size and grade

Degree of ER expression"

Thus, you may wish to follow-up with your MO as suggested by BrooksideVT to clarify whether her recommendation of chemotherapy to you is based solely on your RS of 21, or whether she is also relying upon some other clinical and/or pathological features in your case to support her recommendation (and if so, to please list those features for you).

I hope your appointment tomorrow is productive and provides some added clarity.

BarredOwl

[EDIT: *Under NCCN guidelines for breast cancer (Version 1.2016), for IDC that is node-negative (N0), hormone receptor-positive, HER2-negative with tumor size >0.5 cm, the OncotypeDX test is provided as an option. If the RS result is intermediate (18 to 30), then the guidelines provide for considering the option of chemotherapy:

Adjuvant endocrine therapy ± adjuvant chemotherapy

In this group, with an RS < 18, the guidelines provide for:

Adjuvant endocrine therapy

However, the guidelines describe the general case, and in the appropriate case, it may be reasonable to depart from what they provide.

It is my layperson's understanding that radiation is a separate question.]

Hi rrgoods, I think you should ask your oncologist why she is recommending chemo, and whether or not she thinks radiation is on the table, and why or why not. If your onc score is intermediate and your tumor grade is 2 that might be the answer. It's too bad you've gotten conflicting info--they should work as a team. I consider the MO the team leader! I doubt very much the MO is trying to make $ off of your misfortune--if you think that, run the other way to a second opinion.