Hi, this is my first post. I’ve recently discovered I have a recurrence of TNBC three years after my first diagnosis and am waiting on results of a blood test before starting Capecitabine. I have no visible metastases on the CT scan, but my oncologist rather casually said “ There will be cells elsewhere” and, whilst understandably not being very precise about prognosis, basically seemed to be saying I probably have a year, maybe two at most, to live. I’m pretty devastated by this, and can barely believe it, as I feel absolutely fine, apart from having an uncomfortably hard and swollen breast. I’m 65, and generally fit and well. I’ve been reading about treatment, and it seems that Capecitabine doesn’t have a very high rate of success in prolonging life. Also, I’m wondering if anyone has any experience of other approaches, eg, a low asparagine diet, or a low methionine diet? Or immunotherapy? I will ask my doctor about these next week when I see him, but in my experience doctors are pretty sceptical about non standard treatment approaches. Any suggestions appreciated.
Thanks!
Hi Annabelle1956 and a very warm welcome to the online community
I'm very sorry to read that your TNBC has come back and that your oncologist has intimated that you have a prognosis of between 1 and 2 years.
I hope you don't mind me suggesting a couple of other groups that you might find helpful to join. The first is the main breast cancer group as it's far more active than this one and you will find people with TNBC there too. You could copy and paste your post from here into a new one there to see if anyone there has any experience with the non-standard treatments that you have mentioned.
The second is the living with incurable cancer group which is only for people with an incurable diagnosis. Whether you need to talk about treatment, or about making the most of your life, you can discuss your feelings openly there.
To join either or both of these groups just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
That's very worrying that you got a spam email reply to your post. I can't see anything in this thread so presume it was an email sent directly to you rather than a reply through this site. Have you let the Macmillan administrators know? If not I can send them a message or you can reply directly to them on community@macmillan.org.uk.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
