I have been diagnosed with DCIS and am due to have a mastectomy and reconstruction. For some unknown reason, i have been telling family and friends that it’s pre cancerous! Its suddenly hit me that I do have breast cancer, although, thankfully, low grade. I think I’ve been down playing it to protect others, or maybe myself. I appreciate that I’m lucky its low grade but it ia still cancer and there’s a lot to go through. Has anyone else faced it like this?
I’ve also struggled with this. I’ve told my family I have covid and that’s why I haven’t been in touch or been over to see them. If I told them, it made it all real so I completely get where you’re coming from. I’ve had surgery and got radiotherapy starting soon and only told my sister tonight. Feeling a mixture of relief and guilt. I wish I had the right answers to tell you how to deal with it but my advice would be to just do it at your pace. There is no right or wrong way to deal with this. However you manage it is the right way. If it’s any small comfort, all your choices are understood in this safe space and we can look after each other xx
Thank you. I appreciate that. Ive just been ready a thread about imposter syndrome which sums up how I feel!
Good luck with your radiotherapy and Im glad you’ve been able to tell your sister. All so difficult isnt it?
I know exactly how you feel! I was diagnosed with DCIS in May and had a mastectomy/reconstruction in August and everyone I know has been so kind. I still can’t believe I actually had cancer - like “real” cancer!I guess we all have different ways of dealing with things - and whatever works for you is the best way for you to handle it. x
Just wishing all of you all the best . It’s hard enough getting your head round it all without having to battle with terminology what is / isn’t cancer / does that mean I don’t really have it ? So why do I need an operation / radiotherapy then ? At this point it doesn’t help when the Doctors seem to make light of it by telling you that it’s pre - cancer or in my case what felt like only just cancer . It is what they have to do but it makes no sense at the time .
I had a very early low grade type that rarely spreads - I joined a research trial and was selected to have it removed under radiological guidance with local anaesthetic. Because I was able to have it done this way there was a part of my brain that kept saying I didn’t have cancer … not really . … how could it be ‘real’ cancer if I didn’t need a proper operation ( it didn’t work so I had the operation anyway ) .
With the treatment pathway that you are on @jcb - having mastectomy I think anybody knowing that would probably think of it in terms of cancer anyway - hopefully they are allowing you the mental space to work it out in your head .
Wishing all you a speedy recovery
I didn’t tell anyone either. I was diagnosed, biopsy, and lumpectomy on my own, didn’t tell my family or friends. I’m not sure why, but looking back it seems I have always been the caregiver in my family and I feared having to ‘take care of their feelings’ about my cancer.
Now that I have been diagnosed with secondary breast cancer, I’ve told everyone. Glad to have read your post, I thought I was the only person who didn’t share the information with family!
Totally understand you.
I had DCIS last August and mastectomy and reconstruction last October (DIEP flap surgery)
I still tell everyone I had ‘early breast cancer’.
Not really sure why I say that, like you, maybe to protect others or more me!!
Thank you for sharing this as made me really think about what has happened to me
All the very best xx
I was diagnosed with DCIS in August 2020 and had a mastectomy. Most people at work didn’t know why I was off. When I did tell people I usually said it was either pre-cancer or very early cancer. I think it is a way of protecting both you and the person you are telling. Saying you have cancer brings so many emotions that it is natural to shy away from it. Occasionally I do worry that it actually means I haven’t dealt with it mentally/emotionally.
Hi, I can relate with a lot of these posts - I have just finished active treatment for my second invasive ductal carcinoma. First time round was two years ago - again invasive but found early, quite small and grade 1. I completely downplayed it with everyone - family, friends and at work. But in truth I found the treatment very very hard, because of where the tumour was I opted for bilateral mammoplasty for symmetry so the surgery was quite extensive and it took me a long time to heal. Also whilst operating on the ‘healthy’ breast they found a DCIS. They also found traces in one of the removed lymph nodes. I had to have the test for the BRCA gene (negative thankfully) and then radiotherapy followed by hormone therapy.
Mentally I was still in a bad place months after the active treatment ended, and at that point I was wishing I hadn’t downplayed it - everyone I knew expected me to be back to the ‘old’ me and only my partner, who had been through it with me, really understood how much I was struggling.
Then this year at my annual screening they found another in the right breast. This time I was completely honest with family, friends and work. I made the decision right from diagnosis that I didn’t have the energy or really the will to play it down to protect others, they would have to deal with it as would I. Honestly - this way has been better for me and my partner. We’ve had so much more support and being able to talk about it honestly and without filter has meant I’m in a much better place now mentally.
Of course everyone is different and for some maybe minimising it helps - but if you are doing it to protect others I would say sometimes you have to put your own needs first - and surely when you have cancer is one of those times.
I can absolutely relate to your story @jelly12
I’m a nurse so professionally and personally my role in my family and friendships is always being the person that looks after people, not the person that needs looking after. I’m finding it so hard to admit that I’m struggling. I’m still down playing everything so other people won’t worry. If I’m being brutally honest though all I want to do is scream about how scared I am and how much I need looking after
It’s very different dealing with trauma in your professional life compared to in your personal life .
My lovely GP ( now unfortunately retired ) said to me when I was in bits and in a state of high anxiety a week or so after diagnosis and apologising for being that way - “ it’s not every day you are faced with your own mortality “ and it shakes you up ,whatever stage your cancer is it’s makes you feel vulnerable and scared . Don’t be afraid to admit you are struggling it’s a normal reaction to this
Absolutely. In my professional life I deal with life and death situations all the time and after years of practice, I leave it at work to some extent but I’m still affected. In a way, I want to be affected as I hope that makes me a good nurse. It’s just so uncomfortable being on the receiving end of needing looking after. As much as I love how strong people think I am, Im really sick of appearing strong! I just want to scream and shout and be able to fall to pieces sometimes and not scare people but I know I will scare them if I let out how I really feel. I even feel guilty for putting this stuff on this forum as I know other people have it so much worse than I do and I know I’m lucky in so many ways I just feel so scared at the moment and want to be able to get this stuff out with people who don’t know me so they won’t worry about me in the same way my friends and family will worry about me
That’s why this forum is so important , it’s a place to share how scared you feel and not worry about how it impacts on people around you . We all understand how scary it feels , it’s irrelevant really how much experience you have dealing with trauma in your work life , it doesn’t feel the same if it’s your own life !!! It’s normal to feel the way you do x
Thank you all for your replies. Its reassuring to know others feel the same.
I have decided that as i speak to people face to face, I will say that I have breast cancer. I can see that I dont need to protect others with this. If they know, they can support me.
We all deal with this differently, clearly no right or wrong but its so good to have supprt from each other through this group.
Good luck to us all and thanks for your messages xxx
Im a nurse too and it does make a difference. We often see the people for who things didnt go well and not the many, many people who are fine after treatment.
I do think its part of why ive played it down. Always trying to look after other.
It seems its reasonable to be scared and need to be the one looked after for a change xx
After the last few days, I don’t think the playing it down stuff is just about protecting other people. For me, there’s a massive sense of still wanting to be in denial! After being in a bubble for the last few weeks and not having to talk about it I e seen people recently who asked me questions about my ongoing treatment and what I’ve been through and because I’ve had to say things out loud I’ve had a complete meltdown tonight as it’s brought everything to the surface again. I just want it all to go away and not have to deal with it. Feeling very fed up tonight that I have to deal with this and just want it to go away
I think it comes in waves , you have times when you can somehow put it away in a box and deal with day to day life ,other times when it bubbles up and totally overwhelms you . It’s very scary being faced with this illness and to be honest even years on I still find the whole thing rather surreal , being transported to “ cancer land “ is not an experience anyone wants to have ! It really does get better over time but there will still be times when it hits you when you are least expecting it and you have a wobble . No way round it , got to go through it unfortunately !