Treatment not currently being reviewed, I am now on letrozole which was always the plan to start this after chemo finished. Still having herceptin and perjeta every 3 weeks too. Onc wants me to have a scan before the usual 3 months to see if letrozole has got the rebel cancer under control, I assume if not then he will look at something else. 😔
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Hello, Lommey, I have a problem with my voice which is due to one of my lung tumours pressing on my lyryngeal nerve. I had to force my Consultant to give me a scan on my thorax because she thought it was just anxiety causing my voice to change (as if...). I'm glad although your symptom was different, that you were able to have laser surgery and radiotherapy. You've already come through so much. I mentioned radiotherapy to my Consultant yesterday but she didn't think that would be the treatment. God only knows what is. She seemed to think the Paxlitaxel was working and should be enough... but what happens when I come off it? I sound like Minnie Mouse and can't really project my voice in the lower pitch. Some days I barely have any voice at all. I told her it's a considerable disability and that I wanted treatment (because she wasn't taking me seriously.) She's sendng me to an ENT specialist. They will hopefully give me some effective treatment - or point me in the right direction, despite my incurable diagnosis 😭 . Sometimes it's really hard work with medical professionals, isn't it? They don't give us credit for knowing our own bodies and although I don't like saying it, an incurable diagnosis puts a limit on what Doctors are willing to offer. I think Gillyflower is right. The level of progression is different in everyone and not predictable. Focus on the fact that it is only in your lymph system. There are many effective treatments now. You've come through once and can do it again. Hope all goes well. Angel Eyes
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Thanks for your post about secondary breast cancer, treatment and triple negative. It sounds like the secondary breast cancer in your bones may have been treated with hormone therapy and targeted therapies whilst the ‘multiple nodes’ are triple negative.
Triple negative breast cancer is the name given to breast cancer that is oestrogen receptor negative (ER-), progesterone receptor negative (PR-) and HER2 negative.
Being told you have secondary breast cancer can be completely overwhelming and worrying about the cancer in your nodes spreading, while having no treatment, is understandable especially as you haven’t been since by your team for some time or had a recent scan. When making decisions about how best to treat someone with secondary breast cancer, your specialist team will generally consider any symptoms that you may have at the moment and any treatment that you have had in the past. With the recent situation with COVID 19 we are aware that scans and appointments are being postponed however, you may want to contact your team and ask them what they plan in terms of treatment in the future and how they will decide with you if, and when, this might start.
I’m not sure if you are aware but we provide a number of different services for people living with secondary breast cancer aimed at providing both information and support.
Outside of the current coronavirus situation, our face to face Living with Secondary Breast Cancer monthly sessions also give you the chance to meet and share experiences with other people who understand what you’re going through because they’re going through it too.
However, we’ve had to take the difficult decision to suspend all of our face-to-face services until the end of June 2020, following the latest government guidance regarding coronavirus.
The Helpline, Ask Our Nurses, Living with Secondary Breast Cancer Live Chat and online Forum support services are all still running as usual. If you have any questions please email NRC@breastcancernow.org.
Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000 (Text relay prefix 18001).
Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Breast Cancer Now Nurse
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