Triple negative, ILC

Janhope

I was diagnosed with ILC,  2.5 cm, triple negative, on March 11, 2016.  I also have a separate ILC. 1.5 cm,  that is not triple negative.  On May 2  I had a skin sparing mastectomy, and partial reconstruction.  My lymph nodes are clear.  I have had 2 different opinions on whether to have chemo.  One oncologist said I would have a 25% chance of relapse with no chemo, and a 16 % chance of relapse with chemo. That would increase my odds 9%.  The second oncologist gave me odds of 40 - 50% chance of relapse with no chemo, and 35% improvement with chemo.  I am really in a quandary on what to do since those percentages differ so much.  I am a pretty healthy 73 year-old, but know chemo can really tear you down and make you feel a lot older.  My friends who've had it say it's really nasty and it kills the good cells too.  But what to do.....need help.

BarredOwl

Hi Janhope:

I am sorry you may have received inconsistent advice regarding your estimated risk with or without chemotherapy.

If you don't receive more replies (or if you'd like to meet others with ILC), please post your question in this ILC forum:

https://community.breastcancer.org/forum/71

You mentioned that you had two tumors and your lymph nodes are clear, which I understand to mean your sentinel node biopsy was totally negative and your pathology report shows "N0" as nodal status:

(1) a 2.5 cm ILC, "triple-negative" (ER- PR- HER2-); and

(2) a smaller 1.5 cm ILC, that is "not triple negative."

Do you know what the ER, PR, and HER2 statuses of the second 1.5 mm ILC are? Be sure to obtain copies of your complete pathology reports and all related ER, PR and HER2 test results from biopsy and surgery to ensure you have full information re ER, PR and HER2 status for both tumors, as these may affect recommended treatments.

An ASCO guideline mentions:

"An overview by the Early Breast Cancer Trialists Collaborative Group suggested that the reduction of risk of recurrence (ROR) with adjuvant chemotherapy is at least 30%. ^"

I have also seen "ROR" estimated as ~ 1/3 or ~ 33%. I think both oncologists may be telling you that the addition of chemotherapy may achieve a reduction of risk of recurrence (ROR) of about 35% (multiplier of 0.35 in the equation below) with the addition of chemotherapy.

For example, the first opinion appears to assume an approximate 35% ROR which translates into the 9% change in risk (please confirm it with your medical oncologist):

25 x 0.35 = 8.75 (around 9 % benefit)

25 - 8.75 = 16.25 (estimated 16% residual risk with chemotherapy)

Unfortunately, the opinions might not agree on the estimated "baseline risk" without treatment (25% versus 40 - 50%). The estimates of "baseline risk" could differ if they were actually different types of estimates, such as if one was a 5-year risk of distant (metastatic) recurrence and the other was a 10-year risk. There is no way to know without asking the oncologists. The estimates could also differ if they used different assumptions (e.g., one mistakenly considered the tumor with the lower risk profile, or different nodal status).

Do not hesitate to contact each oncologist and explain that you would like confirmation and further explanation of the advice they gave you regarding recurrence risk. You can mention you have received some differing advice, and are trying to understand the basis for the difference. Be certain to remind each oncologist that you had two ILC tumors each with differing ER, PR and HER2 statuses, and ask them to please review your pathology findings (including nodal status) and either confirm or revise the risk estimates and risk reduction benefit information they gave you. Be sure to ask what type of baseline recurrence risk is being discussed (e.g., 5-year or 10-year or whatever. (Write it down and show it or read it back to them so they can confirm it.)

While age ("pretty healthy 73") should be taken into consideration in conjunction with other factors, it should not be the sole determinant for withholding or recommending a treatment.

I note that the only way to address the distant recurrence risk of a triple-negative tumor is chemotherapy. This is because an ER-PR- tumor will not respond to endocrine therapy (e.g., with an aromatase inhibitor).

Hope this provides some ideas for how to investigate and hopefully resolve any confusion or discrepancy.

I am a layperson with no medical training, so please confirm all information with your team.

Best,

BarredOwl

Janhope

Hi BarredOwl,

Your post was very informative. I have gone ahead with chemo and am getting TC. Four treatments. All 3 oncologists recommended this type, so I am trusting their recommendation.

I started 6/28 and will have session 2 on 7/19. My white count dropped to 500 so I was given 5 days of Neupogen injections. Also had trouble with low BP during that time. No nausea which was great.

Onc will start me on the Neupogen the day after chemo. I had a choice of the daily Neupogen, or one injection of Neulasta. Decided I didn't want one big dose. Also my friend had Neulasta and had bone pain with it. My bone pain came on day 4 and 5, before I started the Neupogen on day 8, when they discovered my low white count.

Janet

BarredOwl

Hi Janhope:

I am glad you obtained several opinions and have reached a decision. Hopefully, the Neupogen will be helpful in the next round. Sending positive vibes your way!

By the way, triple-negative ILC appears to be quite rare, but there is a thread here where you can meet others:

https://community.breastcancer.org/forum/71/topics/825314?page=1#post_4590412

BarredOwl