What, when and how to tell friends & family

I was diagnosed today with invasive ductal cancer (having visited the GP about the lump I’d found at 7.30am in the morning the day I moved house!).

I will have a sentinel node biopsy in a few weeks and know I am in good hands. I’ve been on anti-depressants the last three years and they’ve helped in buffering the emotions - except for one bleak-thinking day, I’ve been mostly fine. I’ve decided that I have a temporary condition called cancer!

In the two weeks waiting for the first clinic appointment (ultrasound, mammogram, biopsy), I was very clear in my mind that I wouldn’t tell my friends unless forced to by changed appearance or having to turn down invites. I feel that people can get defined by events - such as when my dad died, I became daughter-whose-father-has-died - and I didn’t want to become friend-who-now-has-cancer, that people will think of it and ask of it each time they see me.

But my husband made an impassioned speech that I should give my friends more credit to deal with it, and also to give them the opportunity to support me, if they want to. I think also it’ll be hard to pretend everything is okay and so feel comfortable about telling friend.

I’ve been writing some notes in a journal since my GP visit, thinking I’d start an anonymous blog, just to have an outlet but am now prepared to post to my existing blog - I know I found it useful when a professional friend blogged about his leukaemia treatment.

I am somewhat dreading mailing my closest friends to tell them first. I don’t yet know what to say when people say they’re sorry. I don’t feel hugely worry or anxious but I worry that some of my friends will be more upset and worried than me, which doesn’t seem right! :slight_smile:

Hmm.

Paola

Hi paola

I found this a very difficult issue too. I didn’t tell anyone in my family (except husband and younger child still at home), until after my second surgery. I had a lumpectomy and sentinel node biopsy. Then full node clearance with 27/33 infected, and a bone secondary found. If the nodes hadn’t been infected my plan was to tell my parents after all the treatment was finished. They were having their own very serious health problems and didn’t want to make them worse with worry about me. Also didn’t want to panic my daughter away at uni. But as it was much more serious had to go ahead and tell them as xmas approaching and wouldn’t have been able to keep it a secret any longer.

I think it is a reasonable plan to keep it to yourself until you know exactly what you are dealing with.

With friends - I asked my husband to tell a few key people, and then they passed the info around. It was hard on him, but I get very emotional and can’t deal with sympathy at all. He made them promise not to fuss over me. That was my main concern - that I would be inundated with phone calls and visitors, and would be exhausted reassuring everyone. It can get very time consuming and emotionally draining - everyone telling you to be positive when you feel anything but. I have a few really excellent friends that have been brilliant at keeping others at bay - they keep people informed for me so I don’t have to.

I have found that 4 or 5 really good friends have been fab - they have just the right tone (interestingly they all have medical experience either as a profession or have been through something similar). They just talk without constantly asking how I am, and email rather than phone - so if it’s a bad day, can just wait until I feel like responding.

One thing I have found is that I have stopped telling anyone when something is happening - like a scan - as the next day can get 10 or more phone calls, and it is just draining. Same with chemo.

I suppose everyone is different - but I have found that I am much better on my own (except immediate family) most of the time, but especially when feeling rough. Need to be able to have a good cry without someone worrying. Also it is much easier to not think about it when you can just hunker down and watch DVD’s or whatever - when I am with someone, it’s always there even if we aren’t speaking about it, I know they are wondering whether they should ask. For me, working out how to be around people now has been the hardest part of the whole thing - and I wonder if life will ever return to normal.

Sorry this turned into a long rant - I don’t know if it is helpful, but I do wish you very well and hope you find a way that works for you.

Hi,I found it awful to tell people. I couldn’t say the word cancer without crying.I got a friend to tell everyone else in the end. Then I was inundated with cards and flowers and I got quite angry. I felt that they were already “putting me in my box.” Of course it wasn’t my friends I was angry with it was the position I found myself in.I also hadn’t told my children boys of 10 and 12 and I had to hide all the cards away.

However… Once I had got things sorted out in my own head the support I got was fantastic and it does make it easier that you can be open and talk to people.

But be prepared to have to support your friends! I found myself reassuring everybody that I was fine and all would be well when inside I was scared witless. Best wishes.

hi

I didn’t tell anyone but boyfriend and sisters while I was at the mammogram, biopsy stage. My parents are getting on a bit and I didn’t want to worry them unduly. But when I had to go in for another biopsy under general anaesthetic, then I told them - in person. Didn’t want to do it over the phone.

I was terrified of hospital, but completely blase about cancer at that stage. I was convinced I was going to get the all clear - I’m a healthy young person! How could I possibly have cancer???

Even when I got results of DCIS I wasn’t worried. It’s not *real* cancer, I thought. When I was out for drinks with a few pals I told them I had a mild dose of breast cancer, but it was all going to be fine.

Only when the results of the lumpectomy had unclear margins and they advised a mastectomy did it suddenly get real and terrifying.

I had to tell work from the first surgery because of having time off. But after an initial conversation with the admin lady, I emailed all further info to the office, saying, I didn’t mind people knowing, but I didn’t necessarily want to talk about it.

One or two well meaning people did ask me, of course. At first I found it tiresome having to explain it to so many different people. I wished I could issue a press release and get it over with.

The initial telling wasn’t great, but I think it was definitely worth it for so much support later. I can’t imagine trying to keep it all to myself - and I am normally a very private & controlled person. But this was too big to cope with without betraying emotion to those around me.

I kind of ‘came out’ about it on facebook at the stage when I was desperately trying to find out as much as I possibly could about the disease, treatments, dangers, diagnoses (in order to help me decide whether or not I really did need a mastectomy). And that meant talking to as many people as possible with experience of it (and it’s surprising how many people you find once you start asking…!)

Talking about it with various people also helped me come to terms with it as a real serious thing that wasn’t just going to go away if I screwed my eyes tight shut and wished really hard!

I agree with Finty, technology is great for keeping people at bay. Emails and texts are so much easier to handle than phone calls when you’re not feeling up to it.

Incidentally I decided not to have the advised mastectomy, but a second lumpectomy. When I got the fantastic news last week of clear margins and no more surgery required, I shouted it from the rooftops! I had a keeping-my-boob party, drank a load of champagne, and have received a lot of quiet congratulations from people.

best wishes
emma

Hello
I have been very open with family, friends, colleagues and this time round was a lot easier, mainly because of email.
Was first diagnosed in 1997 and spent days telling my family and friends (I’m one of 8 children) - my parents and in-laws were terribly distressed and needed a lot of support. Otherwise people varied widely, some colleagues have become close, lifelong friends, and some lifelong friends disappeared. My kids (then 11 and 9) and OH were wonderful and let me maintain a normal life.
This time, I contacted most people by email, and in the emails to friends asked them to keep contact via email until I got my head together. That has worked really well. I also do ‘round robin’ emails to the family every now and then, to keep them up to date - my eldest sister asked me to do that so that they don’t worry too much (no news being good news) and I maintain that contact with all my sibs and sister in law, and all their adult children - sadly my parents have both died in the intervening years. I also started that with current colleagues.
At first it was tiring - a lot of communication, but it has got easier over time, and it has allowed me to keep in communication with everyone I want/need to, more or less at my pace and on my terms.
well I’ve waffled on enough - I think you need to tell people at your own pace, but I have to say, the support I’ve had from friends has been superb, and, they tell me, for them as much as me. One of them has had bc a few years ago, and I would have been very upset if she hadn’t come to me for support.
hope this is helpful
monica x

Poala i sent a group text to my close friends stating i had breast cancer and that i would contact them when i was feeling more ready to talk. I asked that they didnt cry when they saw me and if they werent dealing with it very well, to wait a bit longer to see me.Harsh but i didnt want them rushin to see me then bursting into tears…not want i needed!

I found i was inundated with cards and flowers which creeped me out! Much more than even when i gave birth!

I then slowly called each friend and saw them all over a few weeks and that worked well. Mum told any family memebers.

Whilst i agree with your husband about friends support i found some of mine could not deal with it at all, said all sorts of stupid things by accident and our relationship now is still a bit wobbly!

good luck

S

Hi, I told close friends when I found the lump and had been for the mamogram, ultrasound and core biopsy as I realised then that it wasn’t going to just go away. When it came to the diagnosis of cancer I texted one friend that it wasn’t good news and left her to tell other friends - thay had constantly been texting her anyway.
I haven’t told my parents yet - they are on holiday in New Zealand and have another 6 weeks. I’m now thinking of waiting until I get the next lot of results and a final plan of action, chicken I know!
I’m of the same opinion that its just “temporary” and it will go away.
I have just had the sentinal node biopsy and so far feel ok, just a bit tender. I now face another week of waiting for results, in some ways the weeks seem to drag but when I look at how quick things have been from finding the lump to now it seems to have sped.
Take care

Michele

Ooh, thanks for the replies.

elwood, I know I could look it up, but what are margins? Congrats on the all-clear!

It’s interesting to read similar reactions to cards. At the my first clinic visit, I was asked to find out whether any relatives had breast cancer. I contacted a cousin who’d had cancer two years ago whether there was any breast cancer on my dad’s side of the family. She asked her dad, telling him why she asked - I found put when I received a Get Well Soon card from my aunt and uncle. I felt angry about it: I certainly don’t feel unwell and don’t want to BE unwell. I put it in the recycling bin. Yeah, so I understand the ‘putting in the box’ statement.

It seems to me as I have a bunch of stuff coming up - surgery. maybe follow-up surgery and then therapies - that I’d just rather turn up at hospital and get it done but otherwise try to carry on as normal. And so the idea of telling people and talking to people about it just lets it invade more of my ‘normal’ life.

But I and most of my friends are very Internet-savvy - updates by blog has its virtues, especially if I explain in the initial mail, that I’d prefer to carry on as normal and probably won’t want to talk much about it in person. *shrug* My blog posts automatically get imported as Facebook notes and so everyone else’ll find out that way! :slight_smile: ‘Coming out’ is a good way of describing it.

I wrote a letter to my mum today, trying my best to explain that I’ll be fine and won’t die soon. After that, I could tell friends. But I realise that the more I put it off, the more I can ‘pretend’ everything is okay. But I’ve never been one of those people who say ‘fine’ when someone, anyone, asks how I am - and so there’ll soon come a time when I’ll have to fib to friends, and that’ll do my head in.

If anything, I feel a bit awkward - guilty even - that I am not feeling emotional or scared about what’s happened. I was already stressed about work and money - I feel that the worry volume has just gone up one notch, not a zillion.

I put it down to my anti-depressants or perhaps it’s because I was in hospital a lot for bladder tests when I was a teenager in the 1970s; they were painful, humiliating and upsetting. The comparison in professionalism and care at the Windsor breast clinic has been startling and I feel now as if I have the best care available.

Anyway, it’s great to have a place to babble. :slight_smile:

Paola

_Paola, as long as you understand that this is the place to come and babble/talk and let someone know how you feel, thats what counts xxxx

Dear Paola

You need to think primarily about yourself, and not worry too much about upsetting others, or about keeping them posted. People get cancer, there is a huge amount of it about, and friends/family have to ‘get real’ about this and consider your well-being.

Although it was difficult sometimes, I did tell most people I know, starting with those closest to me. I figured that if it was them, I would have wanted to know. If they freaked out I explained firmly that it was not helping me at that moment, and if they didn’t calm down I would walk away. Some did react badly, eg my mum said ‘but there’s nothing like that in my family’ as if it was some kind of taint. A girl friend burst into tears in Starbucks! I had to get a bit think-skinned about this, basically they are being a bit selfish as they are thinking of themselves not your best interests.

I came out of cancer determined that so far as I could I would be open, as only by discussing these things can we try to de-mystify this disease. It’s an illness like any other, and most people survive it these days.

However I did make two exceptions. I avoided telling some people that I knew would react badly - they would probably hear it from somebody else and there is not need to put yourself through unecessary stress. Also, I did what somebody above mentioned, I didn’t tell anybody except my partner of scan and appointment dates, as I didn’t want to be bothered by calls. Basically I told them in my own time and on my own terms!

Sorry if this seems to be a bit selfish and would be interested in what others think, but I think we need to take care of ourselves physically and emotionally!

Best wishes with whatever approach you take

Sarah

PS I found my lump the day we put the finishing touches to a re-furbishment of our flat!

Hi

I agree it is tough deciding who to tell but I ended up telling everyone. I came to the conclusion that they would find out sooner or later and I didn’t want them to be scared to talk to me. I work as a community nurse, so I have lots of understanding. I also found loads of others who have had breast cancer, so opened up a whole new support network! I really want people not to be scared to talk to me. I know that, sadly, there will be others with this diagnosis and if I can help in any way, I will. It is a very personal decision.

Julia xx

Hi Paola

telling people is never easy and im afraid i(bottled out)and got my OH to do it all apart from my parents and our children who are 15 and 22.

We kept everything quite until i got the diagnosis and date for surgery,then at least everyone knew what was happening and didnt ask all the time.On the day of dx I got very drunk with some good friends and rather stupidly posted my news on facebook(somethimg i would never have done sober)so everyone knew straight away.

I know what you mean about the cards and flowers they just make you think about the cancer(had a birthday the other day and everybody made much more fuss about it this year, which just made me get very emotional and wonder if it could be the last,bad thought).still find it hard to say the C word to people so to anyone who doesn’t know i just say im fine.

It is only human nature that people who care about you ask how you are and if they ask tell then how you are feeling(tears or not).

take care
Donna x

When I was at the mammogram, biopsy stage only my work, my OH work and his mum knew. His mum had a mastectomy many years ago so OH wanted to speak to her. I have 3 grown up children from my 1st marriage I only told them after the diagnosis. As for friends and other family we told the closest ones and asked them to pass it on to others. It is to difficult and depressing to tell everyone yourselves. It is important to let as many of your friends and family know as you will need help and someone to speak to in the coming months. You will be suprised most friends and family are brilliant. My eldest daughter is married with 2 children under school age but she has been an absolute rock, I don’t know what we would have done without her.

hi paola

when I had the first lumpectomy they weren’t happy that there were still areas of DCIS so close to the margins that there might be more of it still in me. They advised a mastectomy at that point, saying I didn’t have much to go at (!) and could be left very disfigured by a further lumpectomy.

I went away and thought about this for a while, then came back and said, I didn’t care how weird and lumpy my breast ended up, at least it would still be mine, and it would still have feeling, and I’ll have another lumpectomy please!

Once she knew that I was determined and understood the problems, my surgeon was brilliant. I don’t really know the details, but she said she ‘shuffled some stuff round a bit’ to fill in the gap left by the lumpectomy. The result is excellent. Once the scar has healed properly, I don’t think you’ll even be able to tell.

Going back for the results of the second lumpectomy was awful. Boyfriend and I had become convinced that I would again have unclear margins, and then would certainly be looking at a mastectomy. I thought I was going to throw up before the appointment.

But it was good news, the margins were clear of DCIS, and I am *SO* glad I didn’t listen to everyone who told me the safest thing was to have a mastectomy.

Dunno if you’ll be facing the same choices, but I keep trying to tell people, cuz no one suggested it to me as an option, and if I hadn’t been (as my mum said last week), ‘so stubborn’ my story would have gone a very different and unhappy route.

all the best
emma

Thanks again for sharing your experiences.

Yesterday, my mum received the letter I wrote to her. I had decided to write rather than call because I thought it was better she have the information in front of her that she could re-read. The evening before, I was thinking “in nine hours, mum’ll read the letter” and then, the next morning, “in two hours…”.

I had told her I was out all day at a conference (“because life goes on”) and she called just as I was coming through my front door in the evening. She sounded worried but wasn’t hysterical or emotional, and so it was a relief not to have to support her.

Reading posts here about lumps returning and my own lump feeling sore the last three days, I am feeling less positive, wondering what my future holds. I think I will mail my close friends today.

I agree that it’s okay to be ‘selfish’, if that’s putting one’s own well-being first - I deferred to people for decades and so avoiding things that’d make me uncomfortable is something I’ve tried to adopt anyway in my 40s.

I still don’t think it’s hit me that I have cancer - I am happy not to be overwhelmed by it but it reminds me of when my dad died. Nothing outwardly had changed - I hadn’t seen him for a few weeks - and so the event only became real by a constant internal mantra of “dad’s dead”. I first cried for him at his funeral.

I could probably convince myself I have cancer with a similar internal mantra but, really, what would it achieve? I don’t think I’m in denial - I see the surgery as a positive thing, getting it out - more bothered about losing my hair from chemo. But I know that, with each person I tell, it will become more real. :frowning:

Paola

Paola

Your attitude towards surgery and chemo is most definately positive and the best way to be, I’n my humble opinion. You sound very much like me in your outlook. I’ve always viewed chemo as my best friend. Do you know yet about grade or stage?

Julia xx

@rancidtart, grade 2 and stage 2a (27mm).

I mailed about 30 people this evening - I decided to base the message on the letter I’d written for my mother.

At the end, I asked people not to phone me this evening - that I’d prefer mail - and not to send me a Get Well Soon card.

I was dreading receiving 30 replies but have only received four so far and none where I felt I had to support THEM. Phew!

Re: chemo - my GP cousin had cancer in her colon in 2008. She said she was offered chemo but wasn’t told she should have it. She decided to try it so she wouldn’t regret later not having tried everything on offer. I agree - to decline optional treatment seems like a gamble!

My hair is a big part of my identity (short and spikey on top) but I’m already thinking about (temp) tattoos and a heavily-embroidered pill-box hat (embroidered flowers, yum-o-rama!).

Paola

I agree with you about chemo; If its offered, take it! I had no choice as was told I WILL be having it! I was grade 3, stage 2, in one lymph node).

Julia xx

Paola

Forgot to add; if your hair is short and spikey, It’ll be quicker to return to that. In my pic I’m waering a wig, but it was like that before i shaved it off!

Julia xx

Hi Paola

Sounds like we have some things in common - I was diagnosed a 2a at 45 (now 51) and had short hair. I wore wig initially but it was a bit ‘bouffant’ not me, and ended up in hats, which I much preferred - love the idea of the embroidered pillbox.

Don’t feel strange about being ‘in denial’. I was surprised how fairly normal I felt most of the time, kept working throughout etc as it helped me. My doctors were very matter of fact about everything, neither tragic nor too chirpy, just dealt with everything in a practical and good humoured way, and I decided to take my cue from them.

There were odd days when I felt totally overwhelmed (and I would never criticise anybody who feels really down) but its not abnormal to carry on, its just one way of coping. If friends etc wish to make it a melodrama out of it that’s their choice!