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?

  • Hi CotswoldFreddie. I can confirm Coventry as I had 2/3 positive lymph nodes. I didn’t know the Oncotype Dx was being done. I saw my oncologist last Friday and agreed to chemo, but this afternoon had a call to say my Oncotype results are back and are very low. I’m now seeing the consultant again later this week. I don’t know how I feel - is it accurate enough to say no chemo?  I had 3 nodes removed of which 2 were positive but they couldn’t remove any more because of vascular involvement. 

  • Hello Angua, thank you for your reply. Can I ask when your tumour sample was received  by the company in the USA (it’ll be in the report your oncologist gets)? Can you find out for me?

    Also just checking ….Are you post menopausal?


    I think this might indicate a new approach from Coventry. When you see your oncologist you could ask for a copy of your Oncotype report, it will probably be sent to him/her with a summary of the previous clinical trial (RXPonder) that involved 5015 women. This may give you confidence in the test. 

    For menopausal women the Oncotype company clinical trial (results published Dec 2020) suggests chemo doesn’t really have any benefit in stopping cancer recurring if you have only 1-3 nodes positive (providing you are ER+, HER2-, post menopausal, and have what they define as a low recurrence score). I researched and so did my oncologist - neither of us spotted any global trial to date that seemed to contradict this finding.

     The science is changing- becoming more tailored based on individuals’ genetic/genomic factors.  In fact many Leading global Scientists are suggesting some women have been over treated in the past with chemo they haven’t needed.  

    I had a whole layer of lymph nodes removed - 14 in total. Only 1 had cancer in it. So I had more confidence it hadn’t gone to other lymph nodes. However, You aren’t in the same situation with respect to this - I’d ask about that - …..

    Your oncologist has called you back in. Your oncologist may be the same man as mine! , but if not, the Coventry/Warks oncologists are all talking together about this test at the moment and how they are funding & using it. For me living on my own I was so frightened about having EC-T chemo I was looking for a safe way to NOT have it! I was thinking about the PIC line, giving myself injections in the stomach, losing my hair and having increased risk from covid.  No one wants to have chemo -  If you have a low score you might be able to consider not having chemo. If you’ve got a choice now chat to your oncologist face to face and ask for a day to think about it all if you need time. It’s a big decision. Don’t feel under pressure during your appointment. 

    good luck.

    p.s.  Leamington and Stratford bounce back group can be a source of face to face support for you later on xxxx

  • Hi my surgery was at the end of September, but I’ll ask (and there was no mention on Friday of it) I’ll ask about the report. My oncologist is a lady so not the same as yours :) TBH no one has asked if was post menopausal (yes) I had heard of the test but wasn’t aware that I was being tested. 

  • Hi there. My operation was in the Royal Liverpool University Hospital, the Linda McCartney Centre in January and I was offered this treatment as a matter of routine. My score was 3 and therefore chemo was of no benefit. I was delighted to learn this and  - so far - radiotherapy and medication seem to be doing the trick. First annual mammogram in 2 weeks so fingers crossed

  • Hello prob52, thank you for your reply. I appreciate it.  My best wishes for your 1st scan - fingers crossed.

    A few questions: were you like me - post menopausal and lymph node positive? Your surgery was December 2020? 

    xx

  • Sorry I can see your surgery was January!!! You’ve already answered that question!!! 

  • No probs. My lymph nodes were all clear so presumably that means negative but definitely postmenopausal - 68 at the time. ER & PR positive and HER2 negative as well.

    Hope that helps.

  • It does help. Thank you. The test works if you also have 3 or less positive lymph nodes. The funding in this situation is what I think is a post code lottery as I had one lymph node positive so my hospital said they wouldn’t fund. Some hospitals are funding ladies with positive lymph nodes. Good luck with your annual scan. Thanks again for the reply x

  • Thank you for posting this. I had lumpectomies and node biopsies 3 weeks ago. 4 of 5 nodes had cancer cells so all will be removed from that side in December. I’m going for a MRI andCT scan next week. It may be that chemo will be discussed at a later but, like everyone, it isn’t something I would want if there is little or no benefit I am 68 er+ and trying hard not to be too scared. The info you have posted is really useful 

  • Hello there. My heart goes out to you. I recognise how you are feeling having been waiting like you for my treatment plan only a few months ago. My understanding is that the Oncotype genomic test has only be verified clinically with up to 3 positive lymph nodes.  So I’m not sure it could be used in your situation as a factor in deciding the need for chemo in itself. There might be other factors your oncologist will consider depending on your test results etc. my best wishes to you- good luck with your scans xxxx