TO have Chemo or Not

Hi, Indianarose. I read your original post but decided to answer here because you added a question.

First, I believe you and your docs should consider your general state of health and your life expectancy without cancer, rather than simply your chronological age. That may help you think about how well you may handle chemo and whether it is worth it to you to spend some perhaps difficult twelve weeks in exchange for a better chance at seeing those grandkids grow up. ER+ breast cancer can come back many years later. Also, find out what particular chemotherapy agents are being offered, the chances of any permanent problems vs. the chance of the cancer returning, what the side effects are, and how they can prevent or minimize them. For example, there are many good drugs available to prevent nausea. Given your age, the oncologist may be willing to negotiate an easier chemo regimen for you. Second, in the old days, all the docs had to go on were things like tumor size and nodal status. Now that there are tests like Oncotype, treatment decisions can be individualized more. The biology of the tumor is very important.

Getting a second opinion is a good idea, to help you feel better about making a decision.

As far as radiation, did the doctor who recommended it know that you already had intraoperative radiation? I am not a doctor, but the only reason I can think of to do it again is that they think you should have whole breast radiation now, since intraoperative would have been partial. Do ask more about this. Also, keep in mind that radiation is largely a local treatment designed to keep the cancer from returning in or near the breast, whereas chemo is a systemic treatment aimed at keeping the cancer from coming back elsewhere in the body, i.e. metastatic.

Regarding who gets the Oncotype test -- The purpose of the test is to help with the chemo decision in hormone receptor positive bc. So if the person has hormone receptor negative bc, the test is not used. And in other cases, even if the person does have hormone receptor positive bc, a large tumor, several positive nodes, etc. can mean that chemo is already a given, so the test is not needed for decision-making.

I was 53 at dx, 2 small tumors idc and ilc with an oncodx of 34. I didn't do the recommended chemo. I did a mx then DIEP. I also did 4 years of AI therapy. So far so good 5.5 years out.

Not unusual at all to have a difference between size of the anomaly on initial imaging and actual tumor size after surgical removal. When the radiologist did my diagnostic ultrasound, she reported the mass was 7mm at its greatest dimension. When I had my ultrasound-guided biopsy two weeks later, the second radiologist sized it at 9mm and described it as “tiny” (saying “even if it’s malignant, you’ll still be able to keep your breast if you want to”). And the final surgical path report sized it as 1.3cm. Totally freaked me out, thinking OMG, it nearly doubled in size in only 3 wks. But the surgeon explained that was not the case—imaging cannot provide exact dimensions, that it isn’t till the surgeon can see the mass “in the flesh” that the size can be known. And because the final path report found that its mitotic rate was 1, it likely hadn’t grown at all since that first “focal asymmetry” was noted in my routine annual screening mammo report.

The Oncotype DX test is not ordered if a tumor is ER+/HER2-, grade 1 or 2, node-negative or fewer than 3 positive nodes, and under 1cm in size. Those tumors almost certainly are not composed of cells that divide rapidly enough to be vulnerable to cytotoxic (i.e., cell-killing) chemotherapy and the benefits of adding chemo would be either very small or nonexistent compared to anti-hormonal therapy alone.

Conversely, if a tumor is either ER- or HER2+, chemo is a given because those tumors’ cells are predominantly fast-dividing and therefore aggressive, and would be likelier to be mowed down by chemo; same thing if an ER+/HER2- tumor is grade 3, larger than 1.5cm and there are positive nodes—so Oncotype DX would not be ordered because the results would come back high-intermediate to high-risk and thus chemo would be warranted.

It’s only in that “gray area” that your and my tumors occupied that Oncotype DX testing is appropriate and useful. There may be reasons why, even though our stats looked similar (I was 64 at diagnosis), our Oncotype DX scores differed so radically (mine toward the higher end of “low” risk, yours squarely within “high” risk): different percentages of ER positivity and especially PR positivity—PR- tumors are more aggressive than PR+ ones, especially highly PR+; differences in mitotic rate (the most predictive factor in calculating tumor grade); and degree of HER2—the protein that acts like a “growth hormone” for a tumor--expression (0 and 1+ are “negative,” 2+ is “equivocal” and 3+ or higher is “positive” and indicates a tumor that grows more quickly). If the initial test for HER2 (the IHC test) comes back “equivocal,” the more precise and expensive FISH test is ordered. (Though my treatment history lists FISH as the test that determined my HER2- status, I actually had only the IHC test—the wrong one was highlighted on the drop-down menu and I have been unable to correct it).

All things being equal, your tumor would be considered highly likely to respond to chemo and therefore adding it to anti-hormonal (aka “endocrine”) therapy would confer a distinctly greater benefit. But all things are apparently not equal if your age and co-morbidities (other diseases and conditions) would make chemo more risky than beneficial. Women younger than us have opted out of chemo and done okay thus far; many women older than us, whose Oncotype DX scores are high-intermediate or higher risk, have decided chemo would be worth it and have weathered it as well as younger women. If your score were either as low as mine or even in the low-to-mid 20s or so, I’d agree with your misgivings about chemo at our age—as I would if you are at high cardiovascular risks even without breast cancer, or have a condition (like my asthma and allergies to three major classes of antibiotics) that would make it more difficult to deal with infection. But with an Oncotype DX of 34 you are, IMHO, at too high a risk of recurrence not to at least give it a try.

Statistically, absent breast cancer, pulmonary or heart disease we are both likely to live into our 80s. The question is, how far do you want to go to make it likelier you'll reach that age?

Indianarose, a surgeon's specialty is surgery. A medical oncologist's specialty is systemic treatment like chemo and endocrine therapy. Getting all the tumor out and having no involved lymph nodes is a very good thing, but what are the chances there are escaped cancer cells that would behave badly if given the chance? That is where Oncotype comes in. I heard an oncologist say that biology trumps tumor size, etc. The Oncotype score tells you about the biology of the tumor and how that cancer might be expected to behave.

One of the hardest things, in my opinion, about dealing with breast cancer is that with high stakes, we have to make decisions based on limited information. We need a crystal ball, but we don't have one! And we don't get to know what would have happened if we had done something different. All we can do is go on educated medical advice informed by experience, scientific studies, and statistics, and then allow our intuition or gut feeling to have a say also. What will cause you the least regret if problems arise? You have done well to get two opinions from medical oncologists. Make the best decision you can, and then try to stride forward without looking back. If your decision is for chemo, know that you will be watched carefully. Keep in communication with your onc and the chemo nurses. You can do this.

Indianarose - I also was hospitalized with febrile neutropenia after my first round of chemo. I was given Granix in the hospital to help raise my neutrophil count and it worked well. They decreased the amount of chemo drugs by 25% for my subsequent rounds and gave me Neulasta. While that was convenient (OnPro system), I felt much worse with it and ended up doing four shots of Granix or Neupogen for the last two rounds. That has worked well for me.

What a horrible thing for the ER doctor to say to you! Not what you want to hear when you're already dealing with cancer and in pain!

As many people have said on this site - taking Claritin can help with the bone pain that some people have with bone marrow stimulators like Neulasta, Granix, and Neupogen. There are all different stories about when to start it and how long to continue. I just take one regular 10 mg generic (Loratidine) daily. I don't have any SE's from it and then I don't have to figure out when to take it. ;-)