Questions for the oncologist

I love your questions Pragmatic Angel. I had exactly the same as you and was never offered anything to prevent an occurrence. Today it's exactly three years since my op. 

I am really interested what answers you get. 

Hi Monika 

Congratulations on reaching your three year milestone today. 

It would be helpful to a lot of us for our first meeting I think. We all come out of various reviews and meetings thinking ' I wish I'd asked this or that'  In this case I'm in relative ignorance of important issues that other more experienced TNBC colleagues may would have been important to them at this early stage. 

All the best, and I hope you are going to treat yourself today! 

PA

Hi, all. Good to have doubting questions ready before consultation. I never did due to fear coupled with ignorance.I had some treatment and nothing after that. Its been almost seven years today. That was November 2009. I just continue with yearly mammogram. Don't give up hope, guys. Wish you all the best.

Hi, all. Good to have doubting questions ready before consultation. I never did due to fear coupled with ignorance.I had some treatment and nothing after that. Its been almost seven years today. That was November 2009. I just continue with yearly mammogram. Don't give up hope, guys. Wish you all the best.

Hi Makong

I did ask about post treatment screening but the use of markers in the blood tests for some cancers are not used for breast cancer as they are not reliable I was told. My husband had testicular cancer and was screened heavily following treatment so I was also bit concerned at the lack of XRays, MRI etc. I will be taking the bone medication intravenously for three years following chemo and radiotherapy. 

My questions concerning the type of chemo were answered and also those I asked about aspirin, bone strengtheners, PARP inhibitors and so on. 

My consultant couldn't have been more helpful and she has also advised me on some research projects that may be suitable for me.

Great to hear you have your 7th year clear. All the best

I finished chemo, surgery and radio in June.

I am now on two preventative treatments so ask your oncologist about these

1. Capecitabine - a common chemo tablet but off a Japanese trial in 2015, indicates it might take your recurrence risk down by 5pc for TNBC. I’m on this for 6 months.

2. Bisphosphonate - TNBC can go to your bones and lie dormant for a couple of years. This helps prevent bone cancer and osteoporosis. Think you have to be post menopause though for it, which I am now after chemo! I’m doing 4 infusions every 6m.

I’m at a leading private clinic on Harley street and am their first patient to be put on capecitabine for TNBC recurrence. On the NHS I believe your onc has to request it.

I had no idea about Capecitabine for preventative treatment so will follow it up at my next meeting with my consultant and with the chemo team. I will also look at the research (may have to google translate!). I have been told that I will be taking Bisophonate intravenously for three years after the radiotherapy finishes which was welcome news.

Many Thanks for the very useful information and good luck with the treatment

PA

Google the “CREATE-X” trial.

As I say I think this is only just coming in to use for TNBC prevention post treatment.

I was put on it because I didn’t have a ‘pathological complete response” to chemo. In other words my tumour was not entirely eradicated by chemo (which I had before surgery). If you get a complete response to chemo your outlook is better and about 40pc of women get a complete response. TNBC patients get a better impact from chemo in general compared the other BCs.

Capecitabine/xeloda is a widely used tablet and apparently cheap. So push for it if you can. 

Dear PA

Do you mind me asking your age? I had my first meeting with my oncologist yesterday and was very disappointed as I was turned down for bisphonates as I haven’t been menopausal for more than 5 years...  basically I was told at 55 I was too young. I started going through menopause at 51.

I checked NICE guidance and thought it was a bit vague on age but interestingly stated that not approved on NHS for prevention of TNBC.

Hi Wookie

I'm 63 so quite a bit older. It may possibly be research I didn't think to ask actually...quite honestly I would have signed up for anything! I was told it was only offered to post menopausal women and of course I am well past that.

Most TNBC patients are much younger and it wouldn't be offered to anyone pre menopause or going through it as evidently it's not effective. 

Sorry I can't be of any more help

All the best PA