TNBC BRCA Negative _ Doctors opinion required

I am on NACT ( AC/ T 130 mg ) 6 cycles before surgery. Finally 2 more remaining and im trying to keep myself fit by walking an hour everyday and doing some light yoga ..since i have a bard port fitted for chemo need to be careful :).I had dreaded chemotherapy but docs said it was mandatory as its a case of TNBC (ER 5%) LABC ( unfortunately misdiagnosed as a fibroidenoma 6 months ago considering my age 29 at that time).Thankfully there has been no side effect except after chemotherapy except for taste change first 4-5 days. But blood works show a slight decrease in HB level and platelets before 4th cycle.

Pet CT after 3 cycles showed significant improvement and residual mlidly metabolic tissue thickening was seen and no abnormalities. Docs have planned surgery after 6th cycle most likely BCS. Also got the genetic counselling after which i went for BRCA 1 & 2 tests which came out negative without mutation.

I need advice on the following :

1) Should i go for the hereditary cancer panel test at this point. I have no family history of breast cancer but of esophageal cancer from dads side.

2)Will BCS have any impact on my survival / relapse and overall prognosis. Or is mastectomy recommended. I am unsure of how much difference it will make as my oncologist said there will be no difference and suggested a BCS.

3)Any recent clinical trials for TNBC in India.

4)I am single and have not gone for fertility preservation as i did not have much time & resources available and starting treatment asap was a priority. No doctors could tell me with certainty on the effect on my reproductive system however they mentioned it will impact but to what extent even the gynaecologists could not say as they did not check my reserves before starting treatment. Can i get some light on the same too.

Tnx

Sango

8 Replies

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  • 1. You have already undergone the most important hereditary panel test BRCA 1 and 2.

    2. No difference in distant metastases whether BCS or MRM. Slighlty higher incidence of local relapse after BCS, but thats fine and acceptable.

    3. Don't know any recent trials in India. There will be many, I am not aware as trials are limited to Institutes and small doctors like me won't know much.

    4. No one can predict how chemo will affect ovaries; preferable to meet some infertility specialist and let your Oncologist personally discuss with the Infertility Specialist about the same. Infertility specialist, not for reason of infertility, but for their knowledge of ovum preservation.

  • Thanks Dr Sumeet for point wise clarification. For point 2 regarding distant metastases and local relapse does it always occur? If yes contributing factors need to be known.Can I have some link for studies on young TNBC cases for reference.

    Or should I not go very deep into statistics considering the population size of the studies.

  • Your Oncologist would be the right person to answer this. I would prefer you talk to him / her in detail.

  • Local relapse means that the cancer occurs in the breast where you had the initial cancer - and a BCS (lumpectomy) with radio therapy is today considered as good as removing the whole breast, provided the tumor is less than 4 cm in diameter when removed, and it is properly removed with clear margins (no cancer in the margin tissue, thus also in the non-removed tissue). So BCS will feel better, you don't lose the breast. And the risk is low for a local relapse (less than 2%).

    Distant relapse means the cancer spreads somehow to other parts of the body. To prevent that the chemo therapy is advised. In some areas (like Denmark, but probably not India), with ER+ at 5% you also benefit from tamoxifen - a pill that you take for 5 - 10 years.

    A genomic test can show if the 5% is really a sign that it responds strongly to Tamoxifen.

    If you are interested, let them do a genomic testing involving the genes ESR1 and PGR against the genes in the so-called proliferation group.

    I assume it is not HER2 positive (only 18% are). You don't mention it.

    It is important to know if the lymph nodes are positive. You probably know after surgery.

    It's distant relapse that is a concern - local relapse can be removed by repeated surgery.

    There exists medication that can shut down and preserve the ovaries, but I am no expert on this.

    As for clinical trials, try this link:

    tnbcfoundation.org/clinical...

    The key thing to know is if it is stable (homogeneous), because if it is, then it can be determined, which drugs will work. Genetic analysis of the tumor is required.

    If you want, you can in an anonymous way key in your data and use our free service on this link (or contact me to help out):

    CureGPS.org

    Best wishes

    Kaare (from Denmark)

  • Hi Kaare,

    Thank you for the detailed reply.

    Reports had ER 5% , PR Negative, HER 2 Negative.I'm on neo adjuvant chemotherapy and surgery is planned post 6th followed by radiation.

    I guess after surgery il will be in a better position to understand the tumor stats and discuss the same with my oncologists. Regarding tamoxifen I remember them mentioning it will be a part of my regime n after treatment to gain the benefits since ER is 5%.However these discussions will be in detail once chemo sessions are over.Will check with them on the genomic tests too. As of now have only done the BRCA which was tested negative.

    Thanks.Will go through the links provided.

    Just wanted to know what is the cut off % of ER/PR to determine whether its TNBC in Denmark? In the medical center where I'm undergoing treatment ( igs one of the top cancer centres in India) 5% is a cut off.. So it's considered TNBC.

    Sango

  • The genomic test is on the tumor, not on you (which the BRCA is). It can help telling what the tumor responds to.

    As for ER+ cutoff, it is 1% in Denmark, but if ER is less than 10% they still advise chemo therapy, because it is close to a ER-.

    (Of course it is HER2 negative, when it is TNBC, I was stupid when asking, but wanted to be sure).

    In the international community there is a lot of discussion whether to set the cut off at 1% or 10%.

    If you already have your chemo therapy before surgery, the genomic test might be of less value. But it still provides a lot of information, especially on how effective Tamoxifen will be.

    If you want, you can type your data in as mentioned on our site. Or let me do it, then my questions would be:

    1. hat was the size of the tumor, and its type (ductal, lobular) etc.

    2. I assume it was unifocal?

    3. Do you know anything about lymph nodes, from MRI or biopsy of the axilla? (Otherwise this will be known after surgery).

    4. Any further details from the pathology report (Ki67, S curve etc.)

    The thing to ask about pending surgery is the pathological response - whether they can see that all visible cancer cells have been killed especially in the lymph nodes by the chemotherapy.

  • Sorry, about PR - it is not routinely measured in Denmark, so there is no cut off. You say it is negative, but do you know its value en %?

  • @ Dil2310 I received your reply notification regarding CTC on mail. However unable to check the same in the forum in detail . Could you please repost it or PM me .

    Tnx

    Sango

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