Hello, I am new here. I was diagnosed with a Grade 2 Invasive Lobular ER+ PR+ in November 2021, there is no node involvement. I have had a lumpectomy and will be having further surgery tomorrow as they didn't get a clear margin. I will have radio & long term hormone therapy but chemo is unlikely. I feel lucky to be in the position I am at the moment, I know that right now, it could be far worse. I am however struggling mentally with the fear of recurrence already, even though I have not even started treatment It is because of my family history, my Mum died at 53 of a very rare oestrogen related lung disease. I am 49 now and at the same age as she was when she was diagnosed. I am struggling with my thoughts - oestrogen killed her, and I fear it will kill me at a similar age. My oestrogen score is 8. I also lost my Dad young to heart disease. I feel like the odds are stacked against me, on the outside I am so positive and upbeat, everyone thinks I am fine, and am going to sail through this, but this week I feel like I have crashed. Hubby likes to pretend it isn't really happening, that's his coping mechanism which is of no help to me. We have a loving and close relationship but he will just say I am being silly and I 'can't think like that' so I feel unable to talk to him. So here I am.
Hi Sassy,
Sorry to hear of your anxiety over your family history, it’s totally understandable you’re having those thoughts.
Have you been assigned a breast care nurse? I found talking to mine really useful, as I’m not only going through my own cancer but my brother is terminally ill with lung cancer.
She referred me to the in house psychology team . It’s really helped to talk to someone who’s not emotionally involved and be able to voice all my fears and have those emotions validated. She’s also helped me with coping strategies and not think too far ahead and get in an anxious spiral.
Could you look into whether there is support available where you are?
All the best to you.
Yes I have a BCN, I could ask her, I am sure there will be support available, I just haven't plucked up the courage to ask yet as I've been so focused on showing everyone how good I am at coping with it ha ha. I will be seeing her soon so I'll mention it. Thank you, and I am very sorry to hear of your situation too, how unfair. Sending healing wishes and strength to you.
Thank you.Sending them right back at you : )
Yes I was doing the "I'm coping with this" routine at first too. I was also comparing with my brother and thinking what I was going through wasn't nearly as bad. I've since found out how unhelpful this approach is, as we all have to face what were going through and none of it is easy in any way. Denying our own feelings just adds more feelings to the pot in the end.
Please dont worry about needing to pluck up courage, if your BCN is anything like mine ( they all seem to be marvellous) then she knows all too well the physical and mental effects of going through cancer treatment and that is what she's there for, to help you in any way that you need. I had to be reminded of this when I went really down the other week, that they really do mean it when they say to get in touch if you need anything!
Yes, you’re right. I feel I can’t talk to anyone who isn’t either going through it or has been through it, or who isn’t a professional, as they just don’t understand. Everyone just says that I’m kicking butt and that I must be positive. Of course I’m positive (what choice do we have?) but I feel like I need to be allowed to feel fear and express it without someone thinking I’m weak, or even worse, that I’m being silly. I’m finding that everyone means well, but a lot of people end up saying the wrong thing to me without realising. Thanks for your help, I will definitely speak to my BCN. Good luck to you in your treatment and beyond x
I totally understand your situation, the mind is a very powerful thing and our emotions are all over the place. Don't think yourself silly it makes sense to you and sometimes you just need people to listen rather than offer advice. Do you have a trusted friend or relative, I sometimes feel the bc nurses are too removed from me to understand so havnt really spoken to them.
It's very difficult sharing experiences with people who havnt gone through it. It's our right to feel however we like happy sad angry. Accepting the emotions are a big thing rather than trying to fight them off.
I was 11 when my mum died aged 48 and that's always been in my mind, I was diagnosed last year aged 47. People think I'm irrational for mentioning that but her death was cancer related and has always stayed with me. Focus on the fight ahead and of getting well again and don't be afraid of your emotions. Much love xxx
I totally get it, had similar from well meaning friends. Of course we’re trying to be positive but we’re also quite rightly, anxious and all the other feelings that go with dealing with cancer treatment!! We definitely aren’t weak, everyone needs support going through this that’s why the cancer centres are so amazing at providing support because they recognise how this affects people.
I ended up saying to my therapist I wish I could say to people ‘ I don’t need you to tell me it’s all going to be over before I know it etc, I just need you to listen so I can tell you what it feels like for me’ She said it might actually be helpful to say that to people, as then they would know what was expected of them, a lot of people rush to try and fix things. I did become a bit more assertive , however I actually found it more useful to speak to my therapist and one close friend in the end. This is a journey where I’m learning to be kinder to myself.
I hope your BC helps you to do the same : )
Yes I do have one close friend who has been through it and she is definitely my ‘go to’! I guess many of us are in a similar position who have lost parents or siblings. I don’t believe our fears are in any way irrational, fortunately we have hope that our outcomes will be better but it’s tough at times. Thank you ladies and much love back to you xx
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