Natty
11 years agoMember
Newly Diagnosed
Hi my name is Nat and have had a big day today finding out I have an Invasive Duactal Triple Negative 8cm mass. Wow finally blogged it and got it out there!! I am so scared about starting this jour...
Hi Natty,
I'm so sorry to read about your diagnosis. It's a frightening time and joining this group is a great idea. There's lots of advice and support here. There's also a triple negative breast cancer foundation in the United States that you might want to look at. They post regular updates on current research and they also have an excellent advice service if you have any questions about research. Before I had my bilateral mastectomy I wanted to know if there was any reason not to remove the 'healthy' breast and they were able to reassure me. They have question sheets you can take with you when you see your doctors and great articles like this one:
http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf
I have a blog at https://positive3neg.wordpress.com which I started after I was first diagnosed. It includes all my hard-won lessons about treatment, managing side effects, diet and exercise. You might find that useful too.
Well done on choosing to have neo-adjuvant treatment. I did that too. The research on this is very clear; it will improve your survival odds. Triple negative is not one type of cancer but a complex group of cancers, grouped together by what they are NOT (receptor positive) so chemotherapy after surgery is a 'best guess'. You might like to talk to your oncologist about the possibility of adding in a platinum based drug (cisplatin or carboplatin) to your protocol. While it's not yet standard treatment there's some oncologists recommending it based on research results.
Like all of us you'll find that this is a dynamic area and what was good treatment for any of us might now be superceded. It pays to do your own research (while avoiding the internet whackos!) and to take control of your own treatment. You will often be choosing between the lesser of evils, but choose you must.
I also highly recommend doctor John Boyages book, Breast Cancer, Taking Control. He's got a talent for explaining breast cancer and treatment in ways that are easy to understand. The book is worth the purchase price for his section on statistics alone! The rest of it is great too.
My very best wishes to you. It's not all bad news. You will find out who your friends really are. You will feel greatly loved.
Meg
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