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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

  • Hi  , sorry to hear that you’ve had a recurrence, I can’t offer much in the way of experience as I wasn’t offered the oncotype testing and hadn’t heard of the ESR1 mutation. But having read your post and googled it (am careful re googling and only read stuff on ‘reliable’ sites), it sounds like a good idea to push for the test. The more information the better. 
    I’m sure others with more experience will pop in but just wanted to send a virtual hug your way, hope you get the rest of your results soon. HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Hi

    sorry to hear you have recurrence

    ive just had oncotype test (takes 2-3 weeks for results as needs to be sent USA). I understand it’s only for ER+ HER2- where 0 lymph nodes or I think now possibly 1-3. Does assess genomic make up of the individual tumour 

    I was asked beforehand if I’d follow results. Apparently expensive about£3000. If you’d decline chemotherapy even if high recurrence risk score or would want chemotherapy even if low risk of recurrence then no point in doing it.

    mine came back low to medium with benefit of chemotherapy v unlikely to outweigh the risks of chemotherapy eg impact on other organs so have not had chemo. I was happy to go with the results having looked at the evidence and wealth of research on this test

    Wishing all the best with your treatment 

  • Oh bottoms!

    Really sorry about your news.

    I had an Oncotype DX test, they sent the sample away after my surgery, the results took a few weeks.

    Mine came back at a high enough score that chemotherapy was recommended for me and I'm going through that at the moment.

    I'm not sure what the ESR1 test is, but I did request genetic testing due to family history for the sake of my young Niece.

  • Hi so sorry to hear of your recurrence. I was diagnosed grade 3 er positive no lymph nodes and was recommended oncotype test. Came back with high score so I went through chemo and radiotherapy. I wanted to do whatever was needed to reduce risk of recurrence. Score of 29 meant an 18 percent chance of recurrence reducing to 3 percent with chemo.

    Take care xxx

  • Hi WildBreast

    After telling my local hospital I believed I had breast cancer, as like my sister a had dense breasts, with a large number of cysts. They dismissed this and says I don’t fit the remit. Match 2023 found another lump, don’t think it was taken serious as had cysts before. 7 weeks later mammogram/ultrasound got told no it is just cysts and you do not have cancer. I had told my doctor in March I had an enlarged lymph node and this was large. Obviously the doctor hadn’t been concerned about it, the ultrasound was done and samples taken. Then cancer conversation after this told they did not suspect breast cancer but was concerned where the cancer was coming from. Had a CR scan. Went back the following week for the test results and they did another mammogram and ultrasound thought this was odd had already had this done. The ct scan had showed a mass but they didn’t think it was cancer but took a sample. Cutting the story short, after MRI scans a load of appointments and initially told I was having a lumpsectomy I was then told 2 masses in one breast, and a lump behind the nipple I was told I needed a masecotomy and all the lymph nodes removed as cancer found in the sample of one. One of the MRI’s said there was a mass in another breast and prep yourself for a double masectomy. 2 days later, went to a different hospital for a radiographer to make the decision as she was more experienced. 
    she felt the left breast was fine. So single masectomy was going to happen I wanted a double as the decision was made on an ultrasound machine which previously they had missed my cancer I was told no, single only but agreed to move the left breast at a later date due to risk of infection to do both. Had reconstruction on the one breast and going to get the other one done next year. Was told I was going to be on a trial. 

    I was due to meet with the oncologist they had appointed to me but on my arrival she appeared totally unorganised and told me due to the Onca test that had been done, which I was cross about as I was told I was going to do a trial. I told her I didn’t want chemo and felt so cross. I complained and said I wouldn’t work with this lady and saw my original designated oncologist.  I told her I was on the border with the Inca score I didn’t see why I needed chemo, she told me straight that the Onca score has now been signed off hence why I had been given that one instead. She said you need Chemo as your breast cancer went to your lymph nodes and cells could of gone else where. Now going to have forth chemo next Friday, so far, so good but a little apprehensive about the difference Chemo for next 3 rounds, and then radiotherapy. 

    just wanted to let you know Onco has been signed off now so why shouldn’t they give you this option. Go with your gut feeling. If I didn’t have the confidence to go back with new lumps etc. My cancer would of been totally missed and his knows what would of happened. Yes we are in the hands of the experts but they are only human and they can’t get everything right. Always a strong believer if you think something is not right speak out. I asked for my notes after my surgery. My notes said Mrs X is a regular cyst former, so I had been ignored and not taken serious. If you want something, you go and get it. I think we are all here to get the best treatment etc. if we have to push for this then so be it. We are talking about life or death decisions so push for what you want. Good luck with it. xx

  • I had Oncotype DX which said I wouldn't benefit from chemo. My cancer was in one lymph node which they seem to think was ok. I have had rib pain and pain in sternum which I'm not sure if it's to do with radiotherapy or not. Such a lot to deal with. 

    We do have to trust them and keep going back if worried. I'm going to contact them again next week. Making a pest of oneself in a polite way is needed sometime. 

    Love your reply. All oncologists seem to work sl differently. 

  • Sabrina 22 would definitely go back. I look back and think  if I had pushed the fact in 2022 my sister had invasive breast cancer more and not listened to the fib off answer. I had told them but they told me, as my sister was pass age 50 then they were not linked. Although when o had my diagnosis the cancer type was identical. I think if I had been listened to in 2022 then I would not of had my breast removed. Every time I saw a doctor I said are you sure I should be on HRT, and they all told me it’s fine, but the cancer in the lymph node was oestrogen based. 
    lLovr your cartoon. People don’t like to be questioned unfortunately but I need to know these things. I think most people just agree to everything without questioning why etc. Always been a strong believer of my gut feeling and it has never let me down yet. Keep pushing.

  • Waiting for a call back, I'll call them again if I don't get it. They have a hard job granted and what they say is a bit like what Gps say, they haven't got all the answers. Also a bit like a politician, what they say shuts us up. They have the power in this relationship, they haven't got the money to scan everyone just in case. I'm fighting on two fronts because I am a carer. Scared for my son, just ordered a protective peaked hat. He is Epileptic and banged his head hard with the last seizure. 

    The Macmillan centre have been very supportive but they can't do what we need to do. Good luck with your treatment. Christmas tree coming down i think. This is a cheapo from last year. 

  • Keep pushing I am sure you will get there. Must be hard worrying about your son, and having this on top, it really can’t be easy. Loving the cat on the tree. It is awesome. 

  • I didn't get the call back. I've moved on now. Got my 1st Mammogram next month. The hormone blockers are the culprit I think. So hard to function feeling permanently under the weather. I read the someone stopped hers and the cancer came back. I won't stop but just need to have a moan and get some understanding sometime. Exercise is supposed to help, it's just getting going in the first place.