Triple negative breast cancer
This discussion was created from comments split from: Confussed and scared.
Forum Discussion
Hi I was first diagnosed with TNBC in dec 2015, I've had a number of recurrences. if I had my time over there is some things I wish I knew when I started out.
BCNA research shows a lot of doctors do not like discussing what they consider to be high cost options because of the difficulty they experience if patients can't afford it. But what they consider high cost and what I consider high cost are very different things. A $450 PET scan is cheap to me if it could save my life. So I learnt to ask - if money was not an issue would there be anything we would change to my treatment plan. Am I getting the absolutely optimal treatment or is there any other options we would consider if I had private funds to pay for extra tests or treatment. Suddenly I was offered PET scans and found out about "foundation one" testing of my tumour. (Foundation one testing cost me about $4k but was worth it for the peace of mind to know that we were making the best informed decisions possible and not wasting time and allowing cancer to spread by using treatment options that were never likely to be successful).
I would also ask to be much clearer about what area was being radiated and why or why not. my radiation oncologist at the time decided on my behalf without discussing with me not to treat the supraclavical area. - I didn't even know it was an option. I would have taken a lot of extra side effects for even a small reduction in risk (I have a daughter with a serious disability), but I wasn't given that option. They didn't treat my supraclavical area and that's where the cancer came back and then spread further from there.
I would ask about mepitel film to reduce radiation burn - not all areas use it - and often they don't even offer it to you and discuss the pros and cons. I've had radiation twice once with mepitel and once without - it really makes a difference.
I would ask about neulasta - it gave me really bad bone pain - but was worth it to reduce my risk from infections especially as I have kids that bring home every possible infection from school.
make sure you tell your treatment team about every side effect - don't just accept it - they have really good new anti nausea meds now - you don't have to be puking up everywhere like you see on any TV or movie portrayal of chemo - it's not like that anymore.
Sending gentle hugs.
BCNA research shows a lot of doctors do not like discussing what they consider to be high cost options because of the difficulty they experience if patients can't afford it. But what they consider high cost and what I consider high cost are very different things. A $450 PET scan is cheap to me if it could save my life. So I learnt to ask - if money was not an issue would there be anything we would change to my treatment plan. Am I getting the absolutely optimal treatment or is there any other options we would consider if I had private funds to pay for extra tests or treatment. Suddenly I was offered PET scans and found out about "foundation one" testing of my tumour. (Foundation one testing cost me about $4k but was worth it for the peace of mind to know that we were making the best informed decisions possible and not wasting time and allowing cancer to spread by using treatment options that were never likely to be successful).
I would also ask to be much clearer about what area was being radiated and why or why not. my radiation oncologist at the time decided on my behalf without discussing with me not to treat the supraclavical area. - I didn't even know it was an option. I would have taken a lot of extra side effects for even a small reduction in risk (I have a daughter with a serious disability), but I wasn't given that option. They didn't treat my supraclavical area and that's where the cancer came back and then spread further from there.
I would ask about mepitel film to reduce radiation burn - not all areas use it - and often they don't even offer it to you and discuss the pros and cons. I've had radiation twice once with mepitel and once without - it really makes a difference.
I would ask about neulasta - it gave me really bad bone pain - but was worth it to reduce my risk from infections especially as I have kids that bring home every possible infection from school.
make sure you tell your treatment team about every side effect - don't just accept it - they have really good new anti nausea meds now - you don't have to be puking up everywhere like you see on any TV or movie portrayal of chemo - it's not like that anymore.
Sending gentle hugs.