Hello ladies, want to tell you about my experience. I am 52 (post menopausal) diagnosed with grade 2 invasive ductal breast cancer this July. My cancer is hormone receptive ER and PR positive, and I am HER2 negative. My cancer had spread from my boob to one lymph node under the arm. My NHS hospital was recommending over 4 months of EC-T chemotherapy. If you are in a similar situation to me - ASK YOUR ONCOLOGIST about the Oncotype Dx genomic test and push to get one. My hospital was refusing to pay for the test so I paid privately - it cost me around £3,000. It is lucky for me that I had the money and my Oncotype Dx test came back as a LOW recurrence score. This meant my oncologist then said I didn't need to have chemotherapy. The latest clinical trials (RxPONDER) indicate if you are in my position you can withdraw from chemo safely. At the MOMENT not all trusts in the UK are funding this genomic test for lumph node positive ladies. I have heard Wales and Newcastle are funding. I have heard that Birmingham and ***hot off the press*** Coventry is now funding for lymph node positive ladies (1 to 3 positives). I am on a mission to sort out this NHS inequality in approach for ladies. It isn't fair. I am writing this post to tell people about this and also to hear whether as a lymph node positive lady where you live and did you get funding for Oncotype Dx?
Hi,
Just to say I got my FSH level results and I am post menopausal. Had my surgery as planned including sentinel lymph node removals on 14/12, results still not in, but I hope to get them by phone on 24/1.
I was also wondering what hormone therapy you were on and how you are getting on with that?
Many thanks Mickey xx
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Thanks Freddie for your informed reply, really helps and very much appreciated. I know we’re all different how we really t to things, but I’m the sort of person that would rather be as prepared as I can be.
We’re the calcium tablets recommended ? Do you think they are of benefit and where did you get them from?
I know I need to take it, with so much cancer on that breast so soon after a clear mammogram, I’m not taking any risks.
Have a lovely day and thanks again. Will let you know how I get on. Mickey xx️
Hi Freddie,
Yes, I’m exactly the same, I try to deal with things one step at a time or I find it all gets too much. Having said that when I see something like your original post, but I’m not there yet, I clock it to see what I could do now and for future reference. In the case of your post, it hit home to me that I had to ensure my FSH levels were checked. Without that, they were assuming because I’d had a random bleed that I needed to go on tamoxifen for the first two years. I thought it was just stress personally. So, at my pre-op checks, I nicely asked them to check my FSH levels too because the BCN and I weren’t sure where I was and needed to know to get the right hormone therapy post op. Exactly, it gives us a little control back and heaven knows we need it.
Definitely wasn’t too much detail, it is what it is and that’s the finer detail people don’t get warned of as potential side effects. Thank you, I’ll keep all that info.
I know at my pre-op they took bloods to check for bone density, but obviously I haven’t been told about those results or what they mean and so I’ll ask at my results apt, even if it remains by phone.
I can’t remember if I asked what surgery you had and if you had radiotherapy? (Sorry if I missed that). I had a masectomy and diep reconstruction and so I’m still not sure about radiotherapy.
Will do and you too - Mickey xx️
