New here- TNBC

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Hi all

New here and I have questions.

7mm tumour removed. Biopsy tested positive for estrogen (number 4) but when tumour was analysed it came back negative. They repeating analysis on my request. 

Surgeon said I should push for the DX test but not quote him- which I did but medical oncologist very dismissive of this (said no) and totally discouraging of having chemo stating the side effects would not outweigh the potential benefits. She gave me some stats and right enough there would be probs be little gain- but out of around 2000 women 20 WOULD have been saved by chemo. That’s 20 women like us with families, commitments, hopes and dreams. Real people not stats. 

My head is spinning. If I agree to no chemo and I get the recurrance would I not be forever regretful? I totally understand that chemo is a big deal but surely long term prognosis outweighs short to medium term side effects?

Any perspectives gratefully received. Thank you for letting me into the club that nobody every wanted to join.

  • Also- I am lucky that hasn’t gone into my lymph nodes. Im struggling to feel lucky though. 

  • Hi CJ Bear,

    I have her2neg er/pr positive. My tumour was grade 3 and my oncologist recommended preventative chemo to kill off any possible sleeping cells.

    Had I not been grade 3 my plan was radiotherapy followed by hormone suppressants.

    The chemo was not pleasant but doable and I have one more cycle to do before moving on to the radiotherapy.

    I hope you get a satisfactory treatment plan soon that reassures you.

    I wish you well in your recovery xx

  • Thanks so much for the reply. Mine also grade 3 tumour which worries me xx

  • Hi CJ Bear,

    It is a difficult situation you've found yourself in. I was given a choice and I opted for having chemotherapy. I do not regret it. It wasn't pleasant, but it was very doable. As far as I know you have the right to have a second opinion and perhaps it would be a good idea to try that. I don't know how exactly it works but you could speak to your GP and ask them for assistance. When I was diagnosed I was determined to do everything possible to reduce the chance of recurrence so your concern is very understandable. Do what you feel is right for you. If I were you, I would ask for a second opinion. I know that sometimes oncologists might think you won't benefit from chemo especially if you have a THBC, but it is worth asking. The very best of luck with your treatment!

    Lana xx

  • I was offered the preventative chemo by my oncologist. To be followed by radiotherapy, Letrozole for 5 years the Tamoxifen for 5 years with bone infusions to start following my chemo.

    I'm not sure how they all work and each doctor has a preference for treatment.

    However my oncologist did not give the figures of benefit of chemo as negative as your doctor.

    If you feel you would benefit from chemotherapy ask for a second opinion. It's your treatment plan. Xx