Awaiting appointment with oncologist

Janeway10

I was dx in March with invasive ductal carcinoma in the left breast. I had 2 tumors and chose to have them removed through nipple sparring mastectomy with reconstruction. 3 of my lymph nodes tested positive so a second surgery was scheduled to remove remaining lymph nodes. 1 of the 12 tested positive. My oncotype score is 17 and I am taking tamoxifen. My breast surgeon thinks chemo will not be needed but I will definitely have radiation. Of course the oncologist will make that call and Isee him on June 26. My concern is, what if radiation misses something? My BS was not expecting positive lymph nodes because mine are so tiny. She had never seen lymph nodes as small as mine. In addition to the 4 positive lymph nodes 2 others showed some suspicious stuff.

Anonymous

Unfortunately you won't ever truly know if rads kill everything--you can only hope for the best that they do: but you can talk to your docs about what kind of follow up care you'll get. Plenty of women on these boards get scans from time to time after the initial treatment is over. I'm one of the ones that doesn't get scans (my MO thinks it is overtreatment and I'm in agreement with her because scans can often manifest as a false positive and we go down the rabbit hole unnecessarily), but my MO always checks my CBCs during every 6 month check up and she looks for indications in my bloodwork for something suspicious.

I also do monthly self-exams (even though I have a BMX with reconstruction, nipple-sparing, like you). I pay attention to aches and pains, and if something ever feels "wrong" or if pain lasts for 2 weeks,gets worse, or feels "deep", I'd run like heck to my MO and have her check it all out.

The nature of this disease is that we are never really out of the woods; we never get a complete guarantee that our treatments knocked out any micro-cells that might be b.c. That's why so many of us have changed our lifestyles to further fight off any lingering disease, and that's why many of us are on and A.I./tamoxifen for years.

It sucks, but tens of thousands of us on these boards are living with this "new normal" and living well.

Hugs,

Claire

MinusTwo

Janeway - I would definitely ask for a referral to a medical oncologist (MO) in addition to a radiation oncologist (RO). Surgeons are surgeons. They cut. While they may have seen a lot of cancer, I would not be content w/o talking to an MO. That is who should make chemo decisions.

ChiSandy

Janeway, was your case sent to your hospital's “tumor board?" Most hospitals with a decent cancer center (especially breast cancer) have a committee of oncologists & surgeons who meet and consider each patient's pathology, prognosis & treatment. No doubt your surgeon has already touched base behind the scenes with at least one medical and one radiological oncologist. With an OncotypeDX of 17 (still “low-risk" for recurrence), normally it would be highly unlikely that chemo would be recommended unless you are quite young (30s or early 40s). But with 4 positive nodes, you're “on the fence" (and if the OncotypeDX test was delayed until after the ALND, that fourth node would have disqualified you for the test). Perhaps a MammaPrint or Prosigna test, both of which have “high" vs. “low" risk results (no gray areas) would prove helpful. I hope BarredOwl can weigh in here—there are “dueling studies," some concluding that clinical factors (including tumor size, grade, # of positive nodes, hormone receptor/HER2 status) outweigh genomic testing (OncotypeDX, MammaPrint, Prosigna), but others contending vice versa. The primary determinant of whether chemo would be sufficiently effective for its benefits to outweigh its risks is how rapidly your tumor cells divide (mitotic rate), because chemo kills only rapidly-dividing cells (whether tumor or normal ones like hair follicles, mucous membranes, bone marrow, etc.). Slowly-dividing tumor cells would not be affected, but your rapidly-dividing normal cells would.

The fact that you're on tamoxifen and not an aromatase inhibitor tells me you're probably not yet menopausal, so your relative youth might mean that your tumor is more aggressive than it would be in a postmenopausal woman with an identical score. (Had I been diagnosed at 54, not yet in menopause, with the same OncotypeDX of 16 as I was at 64, I might have considered chemo. And had I been 44, I definitely would have considered and probably agreed to it).

If you were to get chemo, your Tamoxifen would likely be suspended, as taking both simultaneously would be very rough on your body. Some MOs advise patients able to skip chemo and go straight to radiation to wait till after radiation is over (and you begin to heal from it) before you start endocrine therapy. Some here do rads & endocrine therapy simultaneously—but not chemo & endocrine, or chemo & rads, simultaneously.

If I were you, I'd get at least two opinions from MOs—not because you wouldn't trust your MO, but because you'd want to see if his/her assessment is an “outlier." If they say the opposite things, maybe (if you can afford it), a third as a tie-breaker? Chemo vs. no chemo decision is the province of an MO, not an RO or surgeon (though the latter two might be able to accurately speculate, especially if they're on your “tumor board"). Difficult situation, and we are “in your pocket" as we say here for whatever results and recommendations you get.

BarredOwl

Hi Janeway10:

You are correct that the question of added chemotherapy and the use and interpretation of prognostic tests such as the Oncotype test is within the area of expertise of Medical Oncologists (not breast surgeons).

Had your surgeon not ordered the Oncotype test prior to learning of the additional node involvement, it seems likely that your Medical Oncologist might not have ordered it all (due to having 4 positive nodes). In general, for node-positive invasive breast cancer, when there are "one or more metastases >2 mm to one or more ipsilateral axillary lymph nodes", the NCCN guidelines for breast cancer (Version 2.2017 dated April 2017) only include the use of the Oncotype test in select patients with no more than 1-3 involved nodes:

>> "The 21-gene RT-PCR assay recurrence score can be considered in select patients with 1–3 involved ipsilateral axillary lymph nodes to guide the addition of combination chemotherapy to standard hormone therapy."

As of this date, in general, with 4 or more positive nodes, decisions regarding chemotherapy are based on standard clinical (e.g., age, co-morbidities) and pathologic (e.g., histology, tumor size, nodal status, ER, PR and HER2 status) criteria. In the typical case, under current guidelines from ASCO and NCCN, prognostic tests like Oncotype (or other tests) are not usually used (or relied upon) in those with 4 or more positive nodes. There may be appropriate exceptions.

The rationale for systemic chemotherapy is the risk of undetectable micrometastases at distant sites. This risk is increased in lymph node-positive disease, and a greater lymph node burden can present higher risk.

Radiation therapy is a loco-regional treatment (breast, axilla). Radiation therapy cannot reach rogue cells that have already escaped to distant sites prior to surgery, and the risk of this having occurred (which increases with nodal involvement) is the basis for recommending systemic treatments such as chemotherapy and/or endocrine therapy. (For additional explanation, see this post: https://community.breastcancer.org/forum/145/topics/829335?page=5#post_4988495)

The website of Genomic Health (the commercial test provider) indicates there are three different Oncotype reports for invasive disease:

http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

(a) node-negative (N0);

(b) Node-positive (1-3 N+); or

(c) Node-positive (≥ 4 N+).

Be sure to obtain a complete copy of your Oncotype report (not some summary in a portal) and confirm that the report says it is a Node-positive (≥ 4 N+) report. If not, your MO can request the proper report for from the test provider for your records.

As you can see, although its use is not currently supported by clinical guidelines from NCCN or ASCO, the company will run the Oncotype test on samples from patients with 4 or more positive nodes, and can provide a Node-positive (≥ 4 N+) report with prognostic information based on a clinical validation study by Albain (2010) that included some patients with ≥ 4 positive lymph nodes (pdf version available here ResearchGate version).

However, whether your medical oncologist would rely on the test results is a separate question and will depend on things like his views about the quality and scope of clinical validation available for the Oncotype test in patients like you; the position of clinical consensus guidelines in light of same (which do not currently support its use); his assessment of your distant recurrence risk profile; and the potential benefit of added chemotherapy in your particular case (be sure to ask about potential benefit).

If you think you may want a second opinion, I recommend that you start lining that up now to avoid possible treatment delays. Many look for an NCI-designated Cancer Center if feasible and in-network: https://www.cancer.gov/research/nci-role/cancer-centers/find. One may still seek treatment locally.

I am a layperson with no medical training. Please confirm all information above with your Medical Oncologist to ensure receipt of current, accurate, case-specific, expert professional medical advice.

Best,

BarredOwl

ChiSandy

Thanks, BarredOwl—spot-on and clearly explained, as usual. (BTW, Kathy Albain was an Internal Med. resident at UIC at the same time as my husband Bob. She’s at Loyola Medical Center in the near western ‘burbs of Chicago, and her opinion might be highly valuable to Janeway).

Janeway10

Thanks all for your very thorough responses. I see the oncologist on Monday so this all very helpful in getting ready for that visit.

I do find it humorous that 47 is considered young. I don't necessarily feel old as I have a totally immature personality. That could be because I have taught middle school for the past 24 years. But I am still pre menapausal.

I also started lymphodema therapy this week. Love those appointments.

Anonymous

I was 44 and also got a kick out of the constant "young" reference during all this!

I am curious as to why you are already on Tamoxifen if chemo has not officially been ruled out? My oncologist explained that they don't start you on it before you decide about chemo.. as I understood it, it was because IF you do need/choose to go the chemo route, you need possible existing cancer cells to be as active as possible for the chemo to do be most effective?

Edited to add... also I thought only an oncologist could prescribe tamoxifen/AI's? Maybe things have changed in the past 6 years?