ALL RECENTLY DIAGNOSED HORMONE POSITIVE, HER2 NEGATIVE, POST MENOPAUSAL, LYMPH NODE 1-3 POSITIVE WOMEN

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?

  • Ignore me Freddie, I’ve just seen you are better than me and have updated your profile re surgery and radiotherapy- sorry Disappointed- MickeyxxHeart

  • You really don't need to apologise!  As I saw someone else write here - we are all in the same boat using this forum.  lots of love to you x

  • Thank you Freddie and happy Saturday. 
    Are you now back at work full time after your phased return? 
    love Mickey xxHeart

  • Hi Mickey, I started 2 weeks before Xmas. I’m currently doing fewer hours every day increasing each week until I get to normal hours in February. It’s a relief to be working simply because I’m well enough again to do it!  Are you back working when well enough? Happy weekend to you and everyone reading. Freddie x

  • Hi Freddie, That’s good that they’ve kept the phased return til February. Great news that you feel relieved to be well enough to go back.  I will have to go back at some point, I was signed off til 28th March post op and so I guess it all depends on those looming results as to when I am fit enough.  I certainly don’t intend to let work take over my life again that’s one lesson truly learnt. 
    Mickey xxHeart

  • Hi Freddie, Just to confirm a BCN did call me back today. She told me they tested three lymph nodes and all clear and they found another tumour. Case being heard at MDT today to discuss my treatment plan.

    I also did my nhs predict score (unfortunately it doesn’t cover radiotherapy), but it did say I didn’t need hormone therapy or chemo.  Even though I am hormone positive. I will be discussing that as they’ve told me I have to have it, hormone therapy I mean. 

    Ultimately though I know the predict is just a tool and doesn’t take all the complications and other cancers into account, so we’ll see.

    Did you use predict or any other tool before agreeing to hormone therapy? 

    Mickey xxHeart

  • Mickey, can you find out how to message me privately on this system?  I know it can be done.  If you want, how about you message me your phone number?  I am working during the days but can ring you in the evenings to discuss things.....I am not medically qualified so I will be careful what I say to you.  But I can tell you with certainty what has happened to me and how things have been explained to me.  I know what's happening with you.  You can't stand the waiting for results and treatment plan information - the waiting drove me nuts! I also needed to double check everything the NHS were recommending with other sources because I have some (unfortunate) experience with the NHS previously looking after both of my parents!  This healthy interest in my diagnosis and treatments and latest science has saved me from 5 months of unnecessary chemotherapy overtreatment. But some women DO have to have chemo depending on their circumstances.  Whatever your individual treatment plan works out to be I think I might be able to help you as an individual because I've had radiotherapy and I'm on a hormone therapy right now; and I'm only a few months ahead of you.  I didn't have chemo but I did a lot of preparation for it - including reserving a wig.  Do you want to message me so we can talk privately?   Maybe talking to someone about how you feel might be good? freddie x