Breast Cancer Haven
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I have TNBC and BRCA 1 positive, new on this site

Hello everyone,

I am new here and 42 years old. I have TNBC and BRCA1 positive. I was diagnosed last year and completed my initial treatment. I am still on this process as I am planning for preventative treatment. It's been rollar coaster journey . When I was taking chemo, I came to know about my genetic status. It was devastating situation for me. Nobody in my immediate family has had breast cancer. I live in fear for future life. Is there anybody TNBC and BRCA1 positive ? Can you share your journey?

14 Replies
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Hi Arumana I am not tnbc nor brca but I wish you well and send hugs and support 🤗🤗. There are posts on this forum about tnbc and brca gene so use the search engine to find them, I hope this helps.

Best wishes x

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Thank you for your wish and support. Trying to be positive but most of the time not working as I expect.

Take care.

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Hello again Arumana

Do you have access to a support group at your hospital?

Or access to MacMillans phone line? It is 0808 808 0000 in the uk. If you are not in the uk perhaps you can access their website:

Www.macmillan.org.uk.

Wishing you well x

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Thank you debstar. I am not from UK. I do visit Macmillan and other sites too. Thanks again for your support. We don't know anybody here but we feel closer. At least this disease took us to a new world without any border. :-)

May I know about your diagnosis?

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I am just getting started on my journey. I am 74 years old, had treatment in 2003 for triple negative bc and was diagnosed in January 2018 with triple negative inflammatory breast cancer in the same breast and tested positive for BRCA1 gene mutation. Monday I will have my third infusion of taxotere/carboplatin which I seem to tolerate well and my breast has improved noticeably. I’m off the oxycodone I was taking and have reduced the dosage of the Fentanyl patch, hoping to be off that soon also. In view of the new info about being BRCA1 positive, I’m not sure what surgery lies ahead...if it will be more than the single mastectomy. I will discuss that with my doctors. How are you doing now?

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Hi marina mama,

I am so sorry to know about your new diagnosis. You are close to my moms age. A big hug for you. Wishing you all the best. It seems you are a very strong woman, you can bit this disease this time too. May I know about your 1st and this new diagnosis? What kind of chemo, radiation, tumor size , any lymph node involvement? I am asking it because I have a curiosity to know for brca carrier, how frequent people get recurrence or I should say the time span between 2 diagnosis. Genetic counselor has data but I am more interested to know about real person. Did you maintain any special diet after finishing 2003 treatment?

I am doing ok. Just lot of stress to handle so many things. After finishing initial treatment, I couldn't find any breathing space. Lumpectomy, chemo, bilateral mastectomy. I am going to do salpingo oophrectomy in May. i have small children, juggling with lot of things make me puzzled, overwhelmed.

Thanks for your response. Take care.

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It’s so much more challenging for you, a young woman with children at home. So much to handle! I hope you have a good support system as that makes all the difference.

In 2003, I participated in a clinical trial at the University of Colorado breast center in Aurora, 60 miles from where I lived at the time. It was a large lump and a high grade tumor, maybe 2 to 3 cm as I recall. No lymph node involvement. And triple negative. My neoadjuvant chemo was Taxotere infusion and oral Xeloda. After the lumpectomy I had infusions of epirubicin and doxorubicin as I recall. I think it was three infusions before, and three after. I finished up with daily radiation treatments, and I don’t know the details, but I think it was six weeks, daily. That was the end of treatment. I have been a vegetarian since before the diagnosis. But I did drink at bedtime, back then it was cream sherry and more recently I switched to tawny port. There is a link between alcohol consumption and breast cancer. I wonder if it matters since I have the BRCA1 gene mutation.

New diagnosis, no lump, just calcifications, which don’t show up on ultrasound so I had to have a mammogram-guided core biopsy (a nightmare!) I had been having pain in my breast even before the “bug bites” showed up. I knew what I had as soon as the “bug bites” turned into ugly sores, but the punch biopsy and core biopsy confirmed it. I am being treated at UCLA, so I have to trust that I am getting state of the art, cutting edge treatment. Since I just found out about my BRCA1 status, I don’t know what surgery is in store for me. I don’t know if they do as much for someone my age compared to your age, but I will find out. My youngest sister recently completed treatment for ovarian cancer in the UK (Bath, England). She was diagnosed last August and I went to help her and her family. I returned to California November 2, and was diagnosed in January. She and my other sister will be tested for the BRCA gene mutation also.

Hang in there! And think good thoughts. That can be the most challenging part.

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Correction: after lumpectomy in 2003 my chemo was epirubicin and cytoxan.

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Thank you so much for your reply. I have been trying hard to concentrate towards normal life, but back in mind fear of recurrence pokes a lot. Still I am dealing with the stress of all surgeries. I was looking for persons who are triple negative and BRCA positive. How they are dealing, lifestyle, disease free time span.... I found a person from breastcancer.org and you and one lady from this site. All of yours experiences giving me hope to survive long. I always think about my small children; how long I can go with them in their life.

Because of your age, I think Dr won't suggest any invasive surgeries for you. But Dr always knows the best. I am wishing you good luck and a big hug.

Love.

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You are in a very difficult situation, being a young mother with small children. I was 59 when I was first diagnosed, and that’s a big difference. But you have to believe that you have received the best treatment possible and slowly you will get on with your life as you continue to heal from your surgeries. The fear of recurrence will fade with time. Have you tried a support group? I don’t recall. But it might be beneficial.

This Friday we will see a genetics counselor and I suspect that you are correct, that she won’t recommend extensive risk-reducing surgery for someone my age.

Hang in there and live each day fully. Think good thoughts!

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Thanks. Let me know what Dr recommends. Take care.

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Hi ,

How are you now? Any updates from the Dr ?

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Hi Arumana

How are you doing now? I am 58 and was diagnosed with a 13mm Grade 3 TNBC lump at Christmas no lymph node involvement. My mother and 4 of her 5 sisters have all died from breast or ovarian cancer. I was tested but have none of the genes associated with this disease but was told we may Have a unique unidentified genealogy that predisposes us to it.

I opted for a double mastectomy with immediate DIEP reconstruction and am now undergoing chemo. Have just completed 3 FEC and am due to start 3 Docetaxol in the next few weeks.

I will also be having an oophrectomy at some point in the future.

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Hi violetta25,

Thanks for your response. How was your reconstruction went? How long was the recovery time? I didn't do reconstruction out of fear. Wishing you good luck for future treatment.

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