Triple Negative questions

  • 13 replies
  • 262 subscribers
  • 588 views

Hey all,

I was diagnosed with Grade 3 triple negative, Stage 2 (3cm) about a month ago. I know chemo is pushed for this but I won't do chemo. I don't have a choice on surgeons due to my insurance (US). The one I was assigned said she 'eyeballs and feels' for the tumor to remove it, which doesn't give me a lot of confidence. I guess I'm naïve thinking if they need to use microscopes to see if cells are malignant in a biopsy, they'd use them in surgery! So I'm going to opt for mastectomy. But because this is an aggressive cancer, I wonder if I should get a double one? And I worry about even considering reconstruction as wouldn't that mean the cancer might come back underneath and be even harder to treat? 

I can't find anything online about what results are if you don't do chemo. So I'm not expecting a long life. but I just thought maybe if I did a double mastectomy it might give me a bit more time?

Is there anyone anyone in this category has experience with this one?

  • Hi  

    I was diagnosed with stage 1, grade 3 TNBC in April 2022. It was found during my routine 3 yearly mammogram.

    Fortunately the area was very small so I was offered a lumpectomy rather than a mastectomy. Because it was so small I had wire markers inserted on the day of the operation to guide the surgeon to the right area.

    Originally it was thought that I'd just need radiotherapy as an adjuvant treatment but because there were microscopic cancer cells found in one of the sentinel lymph nodes removed, the oncologist was happy to put me forward for chemotherapy if I wanted to. He felt that it would give me an enhanced chance of being rid of the cancer for good.

    I decided to have chemo and count myself lucky that, apart from losing my hair and feeling a bit 'washed out', I didn't really suffer from any side effects. Is there any particular reason you've decided not to have chemo if it's offered?

    I don't know how the survival rates for TNBC compare for having chemotherapy against not having chemotherapy but your consultant should be able to provide that information if they recommend you have chemo.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hey Latchbrook!

    Thanks so much for responding. I’d already asked my assigned surgeon, and she had no data to provide, just pushed me to have chemo first, despite my saying no and giving her ALL my reasons. Just feeling a little alone and lost, bordering on angry, though I’m trying to hold it all together. I know I have to stay positive, so I’m trying, even though I can’t seem to get the answers I need. 

    I don't want to give all the reasons I won't do chemo here as it's a personal choice for each of us. But I have to hold onto my convictions for myself. 

    I just want to make the right decision about surgery. I now even worry about the first mastectomy as the cancer is above my breast and I'm not sure it will be cut out completely. (though with all the pushing and poking and mammograms, it seems to have moved down a bit.)

    I've been trying to find a video of an actual surgery to watch, but with no success. (not just an animation which makes it look like... all they have to do is insert forceps and pull the whole thing out Stuck out tongue winking eye) I think that might put my mind at ease. The more I've thought about this, I'm not sure they would remove both breasts at the same time anyway.  

    I have appreciated reading through all the posts here in this section and the general chat section. It's helped. 

  • There's no problem with not saying why you don't want chemo, I was just asking in case it was something that I might be able to put your mind at rest about.

    I'm not sure about the States, but here if chemo is suggested before surgery it's to shrink the tumour before removing it by surgery. As mine was already small I had surgery first.

    I'm not aware of any video online that shows a mastectomy but someone else here might be aware.

    You say that "I know I have to stay positive" but you wouldn't be human if you didn't worry from time to time. I forgot who said it but someone pointed out that the treatment works the same whether you feel positive or not!

    You'll probably stumble across various threads on here where people have a rant at how annoying it is to be told to "stay positive" or "you're so strong" or be called a "warrior". We're all just ordinary people who have been diagnosed with an illness and are getting on with it as best as we can. Now I've had rant, lol.

    Take care

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • It's also to mop up stray cells elsewhere. I couldn't care less about shrinking mine as it wasn't big and I had a mastectomy first!

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • That's exactly why I agreed to having chemo, as I wanted to make sure there weren't any cells on the rampage elsewhere Slight smile

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Did you have lymphovascular invasion?  It is usually marked as LVI on pathology report.  Glad you are doing well and feeling better.  

    Barbara 

  • No I didn't.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • There’s a UK site that lets you see the percentage of women who die within 5, 10 and 15 years based on their cancer type, size, lymph node involvement etc, and whether or not they have chemo. So it shows the percentage of women for whom chemo made a difference. https://breast.predict.nhs.uk

    Chemo is aimed at mopping up cells that may have transferred to anywhere else in your body. Having a mastectomy versus a lumpectomy isn’t going to make a difference if cells are already in your blood or lymph system. I had an 18mm grade 3 TNBC tumour, no lymph nodes involved. 7 months after my initial diagnosis I learned I had metastasis to my liver. It had already travelled through the blood before surgery. I appreciate your question was more about surgery than chemo, and that your mind may be closed to chemo. From my experience it was nothing like as bad as I had feared. 

    On mastectomy versus lumpectomy, I was told that lumpectomy plus radiotherapy is as effective as mastectomy. Whilst you might get a separate cancer in the other breast, that wouldn’t be a usual route for recurrence. 

  • Predict doesn’t account for radiotherapy . It’s an old model but it’s what they use Cry

  • Hi C JW

    I was diagnosed triple negative and wasn’t offered chemo. I’m glad as I don’t think I’d have coped.

    I posted on a previous thread saying “I’ve looked into this further and it seems it’s not always necessary to have chemo. My cancer type was T1a N0 M0 so very early stage with no node involvement. Various studies have been completed looking at the benefits of chemo on this type of triple negative and there doesn’t appear to be any results to suggest it’s a must have. Indeed one survey (BMC Cancer) says “ Our study found that adjuvant chemotherapy is not beneficial and might even be detrimental to T1aN0M0 BC patients.“

    I had a single mastectomy and radiotherapy last year. It’s worth looking at the BMC Cancer report online. Xx