Hi all. I was diagnosed exactly a week ago with high grade DCIS & I’m currently awaiting the results of further biopsies on another area of concern before getting my treatment plan.
I decided not to keep my diagnosis a secret, we live in a small village where everyone knows each other & word travels! I’d rather be honest & open than have rumours going around.
So since last week, I’ve told all my closest family and friends and I have been absolutely gobsmacked at the reactions. Most people have been lovely, but one or two have said the most ridiculous things & just wondering what others experiences have been like?
I’ve had things like when I said I’m worried about the second lot of biopsies & that area also being cancer, a friend said “but you don’t know that” well of course I don’t, that’s why they’re testing it & I am entitled to be worried!! I hate when people tell me how I should feel, that I should be grateful & what I should do. My boss said yesterday (first day at work since diagnosis) “are you still a bit overwhelmed?”…yeah something like that! But the best was last night on a call with a friend who said “trust you to trump my story”, “at least you don’t have inoperable bowel cancer like so & so’s husband” (it’s really not a competition & if it was I really wouldn’t want to be in it! And then an absolute classic “but you have a lovely rack” as I’m facing a lumpectomy in the very best case scenario, very possibly a mastectomy.
Honestly, I am astounded by it all, not to mention irritated as hell! Would love to hear other stories of stupid sh*t people have said.
If you search “ the things people say “ on the forum you will find multiple threads on this topic ! I think all of us will at some point have had a friend/ relative/ work colleague say something unintentionally hurtful or totally crass. The fact is most people just do not know what to say and whilst trying to say something helpful they can actually cause upset .
Until I had cancer myself I think I was equally inept at knowing what to say , when my neighbour told me over the garden fence she had incurable lung cancer I think I mumbled something about new developments in medicine and ran for the back door . Now I would be much more comfortable talking about cancer but that’s only with the benefit of having lived it twice .
Best of luck with the latest biopsy results .Hoping your friends and neighbours come through when you need them !
It definitely seems to be a thing! I’ve even had it in the hospital from some staff. Here’s a few of mine:
“you definitely won’t be wearing a bikini for a while” (Oncologist)
“Do you eat soya?” (Nurse)
“Has anyone told you how many months / years you have?” (Night nurse post surgery)
“ahh, i thought you were wearing the hat for coolness”
“atleast it’s a good cancer”
“but you have such great boobs”
“you’re not meant to get cancer at 38”
“did you have the covid jab?”
I actually could go on and on…
In the earlier days, I was repeatedly asked if it was in my family & sent books by those no longer alive, which I found incredibly stressful. I am not sure if I’ve hardened or just become numb to it now.
This is true. I had a nurse at my first appointment when finding all of this out say do you have kids and I said no (I have step kids but I thought she meant for medical/genetic reasons) and she said well that’s good!!
Honestly sent me spiralling that something was really wrong and that I hadn’t been told everything!
I think you do get a bit numb to it but I think you are constantly building up resilience through this journey. Even if at times you don’t feel like it.
I know how incredibly brave you’ve been @sbee and I think you have grown from strength to strength over the past few months we’ve spoken. You nudge me forward so much!! Xx
My favourite was:
“well you didn’t have ‘cancer’ cancer, it’s not like you were ill or anything”……
(I had 6.5cm worth of ILC , had a mastectomy with Diep flap reconstruction and reduction to other side. 3 month recovery, and I’m on letrozole)
I was literally gobsmacked!!
I’m so relieved to read this thread because I have found myself getting increasingly annoyed to the point of violence (not quite) with the thoughtless comments from people, my husband and I had a fall out about it last week when he tried to reassure me they meant well
I find it incredible that anyone would try and reassure you that everything is going to be fine just because their auntie/friend was, when they have zero idea of what my actual diagnosis is! As it happens my journey should be plainer sailing than some of you and for that I’m very thankful, but they don’t know that.
3 separate people have asked if I was joking, now, I do have a dark sense of humour but I think even for me that would have been pushing it .
My 12 year old son has asked more appropriate questions and said more helpful things than some adults😆
Oh for sure - I have cross words with my mum too when she mentions the “meaning well” thing. People just seem not to be able to read a room… i used to have very long hair that was my “thing”. Last night a friend kept moaning about the chore of washing hers at the gym. Another wanted to stop in a bra shop one evening…
Got my diagnosis back in April and have had two lumpectomies and just finished radiotherapy. At first I only told the people I really wanted to know and I knew would support me. After recovering from surgery I started telling a few more well chosen friends. I am now going “ public” with a piece in the church news letter - just waiting for the reactions. Initially I didn’t want a fuss - “can I help with cooking, shopping” , etc. but now I feel I can share and encourage people of my age (74) to continue to ask for mammograms. Everyone’s cancer journey and life is unique to them.
At my biopsy results the breast cancer nurse said to my husband, if you’re going to get cancer this is the best cancer to get - wtf?
That one comment down played my diagnosis for me and I have spent the last 6 weeks feeling a bit of a fraud.
Also lucky - lucky annoys me, right now smack in the middle of it all I don’t feel lucky - maybe one day but not right now
I understand though that people (apart from the breast cancer nurse) don’t know what to say and I’m sure I’ve been guilty of this too. We can all be a bit pants sometimes in our reactions.
At least it’s made me realise when someone is going through something so shit just asking how they are & listening is enough - advice isn’t always needed and listing off someone else’s story or my own is not helpful.
I’m going to say my top bug-bear is people who say how ‘brave’ you are. Sorry, I know its a popular thing to say, but it makes me cringe as the bottom line is that we are no braver than the next person, and we didn’t choose to have a fight on our hands. This just happened to us as bad luck and we muddle through the same as anyone without choice would.
Yes - we have all been on the receiving end of this unfortunately . In some cases genuinely people don’t know what to say . For instance I think your Boss was genuinely trying to be helpful and unfortunately we are struggling to deal with how we feel and get triggered easily. However the trumps my story thing ( not a story for one thing !) well I would have properly lost it with that person - hopefully on reflection they will be feeling mortified . The " you have a lovely rack " thing reflects society’s obsession with boobs in general I think - I haven’t had this kind of comment but others have.
One of my friends told me to think positive - good advice in itself but my diagnosis came a few months after my Mum had died and only about 18 months after my recovery from a retinal vein occlusion which had left me with permanently damaged vision . She knew all this - and I couldn’t believe that knowing it that she could then think after all of that my first thoughts on being diagnosed with cancer should be " gosh well I must think positive !" I bit her head off - we are still friends now and she did show empathy later.
I also got really sick ( and still do) of people banging on about HRT .
If your friend is a real friend you will be able to tell them how you feel - if you haven’t already and they will still be a friend. Some people have also had odd reactions from family members ( family dynamics kicking in ) or people doing disappearing acts from our lives then getting back in touch after treatment is finished .
I developed a sense for when a comment was going to come out and would say " oh I’m fine / I’m lucky ( which I am but it didn’t feel that way at the time ) . It was like someone else saying it but there was also a certain pleasure in shutting them down and not having to listen to the story of someone’s friend’s husband’s brother / sister / cousin who was so brave and positive and didn’t even take even a day off work and was either absolutely fine or died. Or if I saw THAT look on someone’s face I just said " oh it’s not going to kill me it’s just going to be a bloody nuisance " - and shut them down. I think we all learn how to navigate this kind of thing and you will too. Keep sharing if it helps - there are some idiots out there. Xx
Hi I’ve read your post (and all the replies) with real interest, and I just want to say how much I agree with you amazing ladies.
Honestly, sometimes I think there should be a loophole in the law that allows us to unleash a stream of expletives (and maybe a specially designed fly swat or two!) every time someone comes out with one of those comments. Because let’s face it, we’ve all heard them far too many times:
“At least you didn’t need chemo.”
“You’re lucky it’s only low grade.”
“Stay positive—sending good vibes!”
“Once you’ve had the surgery, you’ll be back to normal.”
And the classic: “You’re all clear now, so you must be thrilled!”
Of course, I’m deeply grateful to the NHS and its staff. I found my lumps, had surgery on both boobs (or “gnat bites” as I affectionately call them—they’re mine, after all!). But what I can’t accept is people who haven’t been through this telling me how I should feel. Unless you’ve walked this road yourself, you really don’t get it—so maybe just… don’t.
If I hadn’t been in pain on both sides, I might well have rearranged a few “well-meaning” faces by now—and I’m not even a violent person!
That’s why I’m so thankful for this forum. You’ve kept me sane, grounded, and most importantly, out of jail. You are all incredible—warriors through and through.
Sending love, strength, and solidarity to everyone in this “club none of us ever asked to join, but where we’ve found each other.”
Oh yeah. And how “strong” we are. Someone called me “a warrior” recently too.
The other thing that gets me (haha - this thread has really revealed some clangers!)
Is the perception that I need to overhaul my life and health. Do yoga. Pilates. Eat well. . I feel like everyone is trying to figure out how I ended up here and how they can avoid it…
All the battle talk , warrior, fighting ect pisses me off. What about those that didn’t make it? Were they somehow not fighting hard enough? No of course not. Also makes you feel like you have to be actively doing something / fighting. I’m knackered, I need to rest.
Same with keep positive. I know it’s better for mental health not to sit too long in negativity and I do feel better if I’m of a more positive mindset or even just a neutral mindset. But we need to feel these massive scary feelings to process them. Also I don’t think my cancer cares if I’m positive or not. I was such a positive person before and I still got cancer.
Someone said to my Mum Oh Rachel’s diagnosis must be slightly worrying? She was like ‘slightly’? That is the understatement of the century!
I’ve had…
can I stroke your bald head? (No, F off!)
At least you’ve only got small boobs (wtf?)
And people telling me all their problems (I don’t give a F!)
You’re such a positive person! If anyone can smash this you can! (Do me a favour!)
I know I’ve probably been guilty of saying stupid stuff when you don’t know what to say but urghh some people make it hardwork ! Thank goodness we have this forum to rant on.
I’m meeting two family friends later who I’ve not seen since I was diagnosed. I may have some more fun comments to add later on
Oh, how I love this thread, it allows me to vent my anger (and I am SO very angry these days!).
One of my female friends asked: „Haven’t you had regular screening?” OMG, I have! I have not neglected anything - it is thanks to ultrasound that my cancer has been found. But mammograms and ultrasounds do not have healing power! They do not prevent illness either…
A number of people after I said I have breast cancer and will have mastectomy responded: „but maybe it is not cancer?” Yes, it is!
And my mother-in-law when informed by my husband said… nothing. They talk every day (he checks upon her by phone), it’s been over a week now and she has not returned to the topic.
Ps. Please excuse my English…
Yes I had the " but it might not be… " when I had been told it was even though awaiting results of the biopsies . I felt they must be sure to have told me already. There was a tiny slightly hysterical gremlin in my brain which I managed to restrain because what it wanted to say was " Oh were you there then when I had all my tests - cos I didn’t see you . I didn’t realize you had a medical degree or looked at mammogram films every day ". Not helpful . Xx
The breast nurse we saw when getting biopsys results said to myself and my partner that one in 2/3 people get some sort of cancer in there lifetime an you (me) have took the hit for us 2 meaning her an my partner . Good job i was still in shock from results of needing an op. Or she might have just been hit .
I think I’ve had a lot of the above but my ultimate was when a neighbour knocked at my house and declared “I hear that you have breast cancer. How long have they given you?”
I’ll just leave that one there as I’m still as speechless as I was that day.
Gosh, I wish it wasn’t but it’s somewhat reassuring that I’m not alone in this - it feels like the appropriation memo hasn’t reached the cancer world. Ironic, given that’s it seems so common.
One mate said to me “there’s no guidebook for this Sophie” to which I responded “i know, but it’s not my job to write one”.
But the best was last night on a call with a friend who said “trust you to trump my story”, “at least you don’t have inoperable bowel cancer like so & so’s husband” (it’s really not a competition & if it was I really wouldn’t want to be in it! And then an absolute classic “but you have a lovely rack” as I’m facing a lumpectomy in the very best case scenario, very possibly a mastectomy.
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