New Triple-Negative Diagnosis

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oddboood
oddboood Member Posts: 32
edited August 2021 in Triple-Negative Breast Cancer

I'm 56 so I was not expecting this. I live in Germany, and they don't do the same sort of type/staging here, so all I know right now is that the tumor is 1.9cm and is triple negative. I'm going to go to the U.S for treatment - probably at Johns Hopkins. It's all happening so fast - I found the lump just ten days ago. I'm just really scared and overwhelmed.

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  • mamacure
    mamacure Member Posts: 236
    edited August 2021

    I’m sorry you have to be here. I’m TN too. It’s very scary at the beginning, but you will feel better once you have your treatment plan. Lots of good info here that you can read up on. Do your research on where, which country to get the very best care for you. Health cost in the US is crazy expensive, but good. Hang in there!

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  • oddboood
    oddboood Member Posts: 32
    edited August 2021

    Thanks, mamacure. The good news is that I have U.S. insurance and am currently stationed abroad for the government, so at least I have that going in my favour. They will send me to any treatment centre, which is wonderful. I'm looking at Johns Hopkins because it is close to family and friends. Still, TN at my age is such a surprise. Was hoping to avoid chemo, but I guess that's not in the cards!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2021

    Hi, there's an active thread "Calling all TNs" with many of us who have ben successfully treated for TNBC. Silver Lining: you CAN get rid of it permanently (rare for many BCs).

    You will likely have chemo first. This is to make sure tumor is shrinking/responding. JHU is great; in the area, UMD also.


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  • oddboood
    oddboood Member Posts: 32
    edited August 2021

    Thank you, Santabarbarian! I will definitely take a look over at the calling all TNs thread. I'm discovering that managing one's cancer treatment is a full time job. I met with the surgeon at JH, but have not met with a MO. They told me I'd have surgery first and would not meet with the MO until afterwards. A survivor friend told me this is weird. Perhaps I'll post about it over on the TNs thread. I liked the surgeon, but so far working with JH has been a logistical nightmare.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited August 2021

    oddboood, I think for smaller tumors, having surgery first is very typical. santabarbarian's was larger; hence chemo first.

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  • LIgma
    LIgma Member Posts: 14
    edited August 2021

    Hi Oddboood,

    MountainMia is correct. I am Tnbc diagnosed 1/20. Like you I had a small tumor. My surgery was first then chemo and then rads. How it was explained to me: Neoadjuvant chemo( chemo before surgery ) is used to shrink the tumor in order to get clear margins. The "bonus" is finding out how well the chemo is working but that is not why it is given first. Removing all cancer is always the goal. Neoadjuvant chemo is usually given when the tumor is about 2CM or larger. So having surgery first is not weird at all in your case! Message me any time if you have any questions. Wishing you a speedy recovery from surgery and an easy time through treatment. As everyone on this board says, once a plan is in place it helps you feel better!

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  • oddboood
    oddboood Member Posts: 32
    edited August 2021

    Thank you, Mountain Mia and Llama! You responses are very reassuring. My tumor is 1.9 cm, so I guess I'm on the cusp. I was diagnosed in Germany where they wanted to start chemo right away. Because of the Ki-67, I'm worried about how fast it is growing - they were really concerned about that in Germany. Also, they were also concerned that it is 2mm from the skin surface. I know JH has good outcomes, so I think I just need to chill - they are basing their decisions on research. It's all just a lot to take in, you know?

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2021

    My mistake, I thought it was 1 cm+


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  • oddboood
    oddboood Member Posts: 32
    edited August 2021

    Yeah, I couldn't figure out how to put the decimal in my signature. But the surgeon did say that even if it was 2.2 or 2.2, she would still do surgery first, so I guess it's not that big a deal?

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