BREAST CANCER RECURRENCE AND ONCOTYPE TEST

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Dear veterans of BC and in general BC congregation.

Yes, it is official, I am a veteran, What tones and tones of bad luck I have had! As most of you, this is not what I was hoping for.

Well my new diagnosis, although I haven’t got all the results and need more tests is:
Cancer on the scar tissue of the previous cancer site
Grade 2 IDC ER8 PR5 HER 2-0
mammogram 12 mm/ultrasound 7mm, axilla clear
CT bone scan clear
CT whole body no results to report
Right axilla lymph node awaiting test

I was thinking of requesting a DX Oncotype test and, I have searched online Apparently, they are available and offered nationwide by the NHS, I have also requested an ESR1 mutation test, is this available on the NHS, Has anyone have any experience with those tests?

I will have to undergo a mastectomy as after receiving radiation therapy the surgery cannot be conservatory and the surgeon is not recommending it after a recurrence.
I am thinking of having a double mastectomy, to avoid the risk of recurrence but I am afraid of the surgery’s side effects. I was very keen at the beginning with reconstruction, but now, I have doubts, it is a big surgery and tissue will be taken from my belly, The problem is that I am scared that could impact my muscle strength as I have back problems and for me is important to be able to continue with the pilates practice that helps me a lot with this.

Any advice

A very very very WILDBREAST

Thank you to all of you in advance

  • It’s such a stressful situation and I wonder sometimes if they realise how it affects us mentally as well as physically. I had the same cancer as my Aunty in Wales who had chemo. I asked the oncologist if oncotype test required, he told me not available on the NHS! Post lumpectomy I have found a tiny lump same breast different area below lymph node biopsy scar. I assume it’s scar tissue but following 8 messages left to BCN no response. As you also say I feel like forgetting now and start radiotherapy in 3 weeks, am I being over the top? My oncologist made a note and wanted ultrasound before radiotherapy for my piece of mind, however, at CT scan yesterday nothing of this on my notes! It’s strange as one day I’m on a mission to fight my corner, and today feel like keeping quiet and just get on with what they say. 
    I spoke with MacMillan nurse on this site who was lovely and said to email consultant secretary, who has also ignore me. Don’t know wether to call GP and ask for fast track back to them but don’t want to be wasting their time. I’m only 55 and feel like I’ve aged over the last 6 months! 

  • I think theGreen heart GP is the best and only option it seems. Hopefully if you speak or see a medical professional it might carry more clout. If I get a bee in my bonnet I get stressed until it's resolved or I hit a closed door.  Xx

  • Thank you Sabrina x sometimes you feel like you’re fighting a losing battle! We have to stick together Heart️xxx

  • Sometimes I fight harder in adversity. They are paid to help and answer our concerns. Being a pest in a nice way means that they can't ignore us. Experience has taught me to keep going when it's important. Shame we we have to fight but the NHS is really struggling. Xxx

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  • I had OncotypeDX test after a single mastectomy and the result just came back as high, which was such a shock, so now I join the chemo camp, just waiting for date - provisionally beginning of December to start. How are you finding the treatment?

  • Hello  

    My chemo finished at the end of October,  I took a week to make sure all was OK and I am just back from a lovely relaxing 2 weeks away.

    Obviously the chemo had it's ups and downs but all-in-all I didn't find it too bad. 

    I had some tiredness and a few bowel issues but anything that I reported the team had a solution for.

    As my treatments were fortnightly I was lucky to be able to make the odd gym class which kept me upbeat.

    I start radiotherapy next week and am starting to see some hair returning.

  • I think if you do Pilates, you can regain strength after any surgery… but whether you want reconstructive surgery and whether it is worth it is a very personal decision.  I have only had a lumpectomy so I didn’t need it.