Needing a hug and help to make sense of results

  • 15 replies
  • 266 subscribers

Hello just looking for some advice and a hug

I am 68 and was diagnosed with lobular BC in March 24 
20mm Grade 2  ER5  PRO Her2 neg Lymph nodes clear
(pT1c NO MO)

I had a lumpectomy  followed by a re-excision of inferior margin
My  NPI 3.4 which is borderline - so the breast surgeon pushed for me to be given an  oncotype dx test

I have just been given my oncotype dx score of 31 and the oncologist has recommended chemo...
I am so confused. I thought stage 1 and clear nodes was a good thing...

The suggested chemo is 3xEC every 3 weeks followed by 9xTaxol weekly = 12 treatments over 18 weeks

I'm in shock to be honest
I have 2 friends both had almost identical BC to what I was diagnosed with... size , type , age ER, PR, Her2 yet they went straight on to RT

At the moment I feel like the bottom has dropped out of my world...

I have only told 1 friend about my diagnosis and no one else - not even my family.
(My husband and I are estranged and grown children all facing really important exams at the moment)

I'm in a pickle

  • It’s so confusing isn’t it?  I’m afraid I’m no expert - I’ve just had a lumpectomy and lymph nodes removed and awaiting Radiotherapy.  But I do empathise and send you all the love and hugs I can.  You are not alone.  Please use this Forum if nothing else. I’m new to the Forum so not quite sure if I can follow your journey. With very best wishes xx

  • Hi deebee60 sending hugs and best wishes, sorry you are having to have chemo when you weren't really expecting to it's  confusing how different people with seemingly  similar  diagnosis seem to be offered different treatments. They didn't give me an oncotype dx test although I wanted one. I think if your score is over 26 chemo treatment is recommended. I know what you mean about telling your family it is difficult. I would contact your breast care nurse to discuss everything also Maggies if there is one near you they are lovely. Hope you manage to make sense of it and it does sometimes feel better when you have time to process it and talk to others. Sending hugs again xx

  • Hi Deebee60

    Welcome to the forum and I am sorry to here that you have been diagnosed with breast cancer.  It's perfectly understandable that you are in shock after your oncologist recommended chemo.  If you do decide to go ahead with having chemo know that while it's not easy having chemo it is doable.  They give you meds to cope with any side effects you may have.  

    Wishing you the best of luck whatever you decide to do.

    Best wishes


    Community Champion Badge

  • Hi deebee60,

    your oncologist has been able to offer you a test that research suggests is one of the best  at predicting your risk of recurrence a oncotype dx score. This test looks at several different factors which are specific to your individual cancer. I am not an expert but if you wanted to understand what the test measures I sure a breast care nurse can provide that information. In  my trust I was told that as I was over 60 the trust doesn’t provide this, I was 61 at diagnosis. I am so sorry that your cancer has put you in the group where chemotherapy is recommended but your oncologist aim is for you to be and stay cancer free so he is recommending the treatment plan that his education and experience believes will give you the best results. 
    I had chemotherapy last year, it isn’t pleasant but it is doable. I wish you well with your decision. 

  • Gosh you are going through a lot. Having been through a lot. It’s been said above but look at it as belt and braces that it’s going to be rid for good. I have lobular too and it’s a secretive buggerHeartpulseo I’m sure having got rid they are absolutely wanting to make sure it doesn’t return. Sounds like you have done amazing so far . Hang in there Heartpulse

  • Hello

    I've had a similar experience - I have two types of breast cancer in left boob and a different cancer in the right! Was told initially that I would have double mastectomy and radiotherapy but now it's changed and I'm starting chemo on 24/6 and then will have surgery after chemo is over. I understand the shock you've had. Just when you get your head around it they change things. But my nurse explained why the changes and that it's the best solution for me and they are working to ensure the cancer doesn't come back. My hospital have a helpline for asking questions re your treatment and the staff are wonderful. I hope you can get to talk to someone at your hospital about your confusion. 

    I'm finding that setting goals and wishes for the future when the treatment is over is helping me get through. Top of the wish list is a rescue dog. In the meantime try and do something nice every day and spend time with positive people who support you. 

    Wishing you all the very best. Xx

  • Echo that

    please talk to the nurses and to macmillan they are just amazing 

  • Hi deebee60

    These tests have only been available on NHS in recent years so have your friends had cancer prior to possibly 2020/21?

    I’m 59 & had the Prosigna genomic test which showed I had a high risk of cancer returning in original site in left breast & 26% chance of it returning elsewhere after also thinking that I would too only need lumpectomy & radiotherapy so it is an unpleasant shock to be told you need chemotherapy. 
    I was diagnosed early December with grade II invasive lobular cancer lump 36mm ER 8/8, her2- low, 3 out of 15 lymph nodes removed in auxiliary clearance tested positive for cancer. I too had to have a second op 19/2 (first 2/2) for re-excision due to cancer cells still being present. Since 16/4 I have had 3x EC & started first of 3 Docetaxel yesterday. It not pleasant but it is doable & you would normally feel quite well by third week so try not to worry too much (difficult I know). I’ve been told I’m likely to need two weeks radiotherapy after this followed by another op to correct where I unfortunately had an unexpected infection found in my second op that had broken down the sutures holding everything in place. 

    Sending a hug to you & as you hopefully slowly get your head around this difficult breast cancer journey you will get to realise that these treatments are for the best to ensure you get back to the life you want to be leading again. 

    Sanguine xx

  • Hi Deebee60,

    I'm sorry to hear this. I hope you soon get the answers you need. Sending my best wishes and lots of hugs your way. Stay strong! xx

  • Hi  

    I think the main difference with you and your friends was the lobular part of your cancer and ER5.

    Lobular has more chance of recurrence that ductal breast cancer (ductal accounts for about 75%).  The ER5 is out of ER8, hence this and the lobular diagnosis, is why your doctor did the oncotype DX test at over 60.  (I was diagnosed about 7 years ago now and it wasn't around then). 

    But although you don't want the chemo. (which I 100% understand as I still remember the amount of relief I felt when I was told I didn't need chemo), I would just say that breast cancer is the most prolific cancer going, so your oncologists have seen so, so many cases and wouldn't suggest you having it if they didn't think you needed it to prevent recurrence.

    I guess the thing I would do is write a list of pros and cons of doing chemo. and then on the top of my list of pros would be 'how would I feel if I decided against chemo. and it recurred?'  (In case you don't know, if you declined chemo. and opted for radiotherapy only, then you can only ever have radio in that breast once, so if it reoccurred you would lose your breast).

    I do feel for you and totally understand how you must be feeling.  

    Kindest wishes, Lesley

    Community Champion Badge