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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.

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    Hi 

    I have triple positive breast cancer when found been already at stage 4(lungs and liver) Her2 positive breast cancer has got very good response to treatment and as of now all my secondaries has cleared out after chemo and now I'm on maintenence treatment and so far so good. Yes Her2 is quite aggressive but is very treatable with the treatment. 

     

  • Offline in reply to Kazzzz

    Thank you for your message. I am really glad that you are doing well.They haven't offered me Herceptin just Letrozole which I haven't even started yet. Like I say, 5mm is too small for chemo to work on. I don't even know how to monitor this for recurrence or secondaries.

  • Offline in reply to Kazzzz

    Hi Kazzz,

    I am delighted to hear that chemo has cleared out all of your secondaries and that you are now on a maintenance treatment - long may this continue to be the case!

    Please keep in touch and let us know how you get on. We are always here for you.


    Kind regards,

    Jolamine xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    I am sorry to hear that you are starting out on your cancer journey. You seem to have a lot going on. When are you due to have your hysterectomy? I hope that your oncologist can sort out the problem with hormone treatment.

    Your care team will bring you back in 6-12 months, for the next five years and monitor you for recurrence. If you notice anything in between, just contact your specialist nurse, who will arrange for you to be seen sooner.

    I found a second lump a year after my first operation. My breast care nurse was very helpful, as she made an appointment for me to see the consultant within 2 days. Sadly, it was a second bout, but that was all 13 years ago and I still live a busy and fulfilling life.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine

    Thank you for your lovely message. I definitely will be keeping in touch. I'm having my routinely CT scan next Friday so hopefully it's best outcome that it can be. 

    Best wishes 

    Kaz

     

  • Offline in reply to Kazzzz

    Hi Kazzz,

    This is good to hear. I shall be thinking of you on Friday and hope that it brings good news.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Thanks for your good wishes. Did they do something different for your treatment during your second bout so that it didn't recur again? xx

  • Offline in reply to Gwendoline66

    Hi Gwendoline,

    I took Tamoxifen for 1 year, then changed to Letrozole for 6 and a half years. They wanted me to have radiothherapy from the outset, but there was some confusion about my margins and then I found a lump in my other breast, 6 months after the first surgery. My surgeon refused to scan this, so I refused to treat one breast whilst ignoring the othher.

    I eventually had to change to another consultant. By the time I was eventually scanned, it was 11 months after I had discovered the lump and it was too late to have radiotherapy.

    My pathology results post-surgery showed that I didn't have clear margins in the original breast. My first surgeon stated that he was aware that he hadn't got clear margins at the time of my surgery and had taken extra tissue away, so he saw no need to carry out any further surgery. When I had another lump in the same place within a year, I'm not sure that he was right.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Dear Jolamine, Thanks very much for your reply and great to hear that you're doing well too. xx

  • Offline in reply to Gwendoline66

     

    Hi Gwendoline,

    I forgot to mention that they did a lumpectomy first time around and a double mastectomy for the second bout. Has your consultant got any further with the opthamologist re eye problems and Letrozole?

    Kind regards,

    Jolamine xx

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