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Triple Positive Breast Cancer

Gwendoline66
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My DCiS was just upgraded to invasive triple positive breast cancer. The shock of having the dreaded and deadly HER2 component is awful. My invasive tumour quickly grew to 5mm at the time of single mastectomy without reconstruction. The doctor said if it had been 6mm I would have needed chemo but at 5mm not. I read a report that under 8mm chemo isn't so effective. I had clear margins and lymph nodes. Tamoxyabd Letrozole are recommended but due to have a hysterectomy so they withdrew the offer of Tamoxifen due to blood clot risk and all my mum's family died of blood clots. And I told the doctor that Letrozole increases retinal vitreous pulling and I have already had two retinal tears due to this and so now he is trying to find an eye doctor to ask. In the meantime I am not taking anything. I am very worried about it recurring in my brain as I have read it does. 

What size was your triple positive tumour?

What treatment did you get?

Has it recurred elsewhere?

How can you monitor for recurrence? In America they get checked every three months after the diagnosis but here in the UK it is a yearly mammogram on the other side! This does not feel safe or adequate with the monster HER2.

My head is spinning with this horrible upgrade that I received. Much worse than I had hoped for.

My friends are sending me crying emojis since they heard about the HER2 component.

  • Offline in reply to Jolamine

    Hi Jolamine,

    Thanks for your message .

    No the consultant has been on holiday since giving me the diagnosis.

    A doctor rang from the cancer hospital though as a kind of courtesy to say actually I could have chemo and Herceptin if I really wanted it for my 5mm triple positive HER2 but something about if 50 women received it it would only be worthwhile for one of them. I didn't exactly understand. If I had said yes to it my hysterectomy would have been delayed by a year and then that might have become the bigger risk. I said no to the chemo and Herceptin anyway, as the MDT at the breast hospital said it wasn't indicated at my size of 5mm but I read a lot of conflicting studies that suggest perhaps it is, along with the ones that say perhaps it isn't! Every decision seems wrong. To say no seems crazy to leave myself vulnerable and without systemic treatment for the monster HER2 but then to say yes to something which may not help that much and possibly cause bad heart problems and neutropenic sepsis seems crazy too. Each option seems terrible and I don't know if I have done the right thing by following the MDT's recommendation not to or if I should have chanced it upon the offer, albeit with the 1 in 50 benefit caveat, from the oncologist. The whole thing is just rotten from start to finish. I feel like I am trapped in a horrendous nightmare and the only break I get is when I am asleep although also having nightmares then too. xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    It is always so difficult to make these decisions, when we don't really have enough knowledge to do so. I had this problem when I was considering having radiation 11 months after diagnosis. I saw two researchers who specialised in radiotherapy. One thought that it was worth a shot, but the other was sure that there would be no point in taking it, if more than 3 months had elapsed. I found his argument the more credible of the two, so I decided against it. Really, it's a case of "damned if you do and damned if you don't". I hope that you have made the right decision, but only time will tell.

    Have you got a date for your hysterectomy yet?

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine,

    Yes it's true "damed if you do, damed if you don't"

    No I have only had the pre-op so far and I can't have the operation until a bit of fluid has been investigated around my heart. This was also a courtesy from a respiratory doctor after I wrote to them questioning it on a thorax scan report.

    It seems to be the case that you get results back and in their view no further action is required but then if you question anything they will organise phonecalls from other departments as a courtesy and more tests etc but if you don't say anything then they don't either. xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    Sometimes we have to push to get the answers we need, so I'm glad to hear that you are the 'questioning kind'. What further tests are being done for the fluid around your heart? I hope that they don't delay your surgery for long.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine,

     

    Just an echocardiogram for now as far as I know. I don't know if they will expidite it as once I have a surgery date or not! 

    xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    I hope that this comes through quickly, along with the date for surgery. Surely they'll want to do this before they proceed to surgery?

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine,

    They wouldn't even have known about it if I hadn't told them and it actually nearly slipped my mind! Xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    This is why we have pre-meds - to flag up any other health concerns. It's just as well that you told them. To be fair, I supppose that their main interest is in getting rid of the cancer. Please let me know when your appointments come through.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine,

    Yes it can be easy to forget important stuff when you have loads of ailments - I have to remember to start either at the top of my head or my toes and then either work my way all the way up or all the way down so as not to miss anything out!  Xx

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