I have triple negative grade 3 1a breast cancer with no lymph node involvement and not been offered chemo-just lumpectomy and radiation?

[jackandbox]

I was told my tumor was very small. So small it couldn't even be genetically tested. I had my lumpectomy with clean margins and 20 rounds of radiation. It left my breast very misshapen but I felt luck it was caught early and I didn't need chemo. Now that I'm reading more on TNBC and find it is very rare to not have chemo for this very aggressive form of breast cancer. Should I count my blessings and not worry or be concerned? Has this happened to anyone else?

[VicReg Partner]

Hello,

I’m sorry. Where are you located? Standard of care in the US for TNBC is chemo regardless of stage or node involvement. I would recommend getting a second opinion if you can.

[jackandbox in reply to VicReg]

I'm in Minnesota USA

[jackandbox in reply to jackandbox]

Ok. Now I'm scared again! Thank you for your advice!

[Nmartinez15 in reply to jackandbox]

I am stage 4 and i didnt get chemo either... only radiation.

[VicReg Partner]

You definitely need to get a second opinion.

[anrean]

Strongly recommend a second opinion with a breast cancer specialist, especially if you can go to a cancer center. I had cancer in each breast, and yes, each is now misshapen. It has changed the choice of tops that I wear, but otherwise I feel very blessed and do not focus on the shape. Better to be misshapen than the alternative.

[jackandbox in reply to anrean]

Thank you

[Broodge45]

I can relate exactly to your situation. I had a first recurrence diagnosed on October 31st of this year. The tumor was also extremely small, only 1.2mm (Thank God for early interventions after the first cancer!) and it was within the duct (DCIS).

Like the first cancer diagnosed in July 2016, this cancer was Triple negative, Stage 1 (related to my having BrCa1 mutation which is often triple negative).

This is the thing: While my first cancer was also small, it was not as small as 1.2mm, and it was NOT DCIS. Both times, I had a lumpectomy with lymph nodes that were clean. I had chemo for the first cancer but it was not recommended for this DCIS cancer. However radiation is advised for BOTH cancers. I start 4 rounds of this M-F a week from today.

The difference as I see it is that when a cancer is ductal, it can be treated by focusing on it (ie, lumpectomy and radiation). My previous cancer needed chemo because it had gone beyond the duct and thus needed SYSTEMIC treatment.

My oncologist is from Massachusetts General Hospital, one of the top hospitals in the US and I trust her judgemt. In fact, she was talking chemo but said that the treatment is determined after the excision (surgery biopsy).

BTW, do you have the BrCa gene? If so, it would be nice to communicate further. My name is Marilyn.

[jackandbox in reply to Broodge45]

Hi Marilyn. Thanks for replying to me. I dont know if I have the BrCa gene because my tumor was so small I was told there wasn't enough of it to do the testing. Was your recurrence in the same breast?

[jackandbox in reply to jackandbox]

Also, Marilyn at first they told me it was DCIS but after surgery told me it was 1a TNBC and since the tumor was so small 1mm, I didn't need chemo. Does that sound ok to you?

[felicitea in reply to jackandbox]

Hi there- ask your doctor for a referral to see a genetic counselor, as they will be able to do a blood test to determine if you have any genetic mutations such a BRCA1 or 2. They should also test for other mutations as well, since there are others that are also linked to breast cancer. You don’t need any tumor tissue to undergo genetic testing, just a blood sample.

[jackandbox in reply to felicitea]

Thanks for the information. I will ask my doctor to do just that on my next appointment!

[jackandbox in reply to jackandbox]

Hi Broodge45. I did get a referral to a genetic counselor now but I'm afraid to go now. I'm scared that if they find I'm positive for the brca 1 or 2 gene and then have to have my ovaries and both breasts removed as a preventative. I'm just so scared! I guess I have to work up my courage somehow.

[jackandbox in reply to Broodge45]

Thank you so much for your reply. It is very reassuring to me. I was never tested for the BrCa gene but when I see my oncologist again next month I'll ask her if I could be tested. I'll let you know.

[Dogdoo]

I had a stage 1 invasive ductal cell carcinoma with small spread to lymph nodes.

Was er/pr +, HER2-.

Lumpectomy, 6 weeks of rads and arimidex.

I'm just about 3 years in remission.

My oncologist said the benefit from chemo would be small compared to risks/side effects.

Was given option of mastectomy but chose lumpectomy due to recovery time.