hello all,
i’ve just posted this on my regular thread but am so flummoxed i thought i’d start a new one…
i attended my regular mum and baby group with my son this morning. whilst mulling about over the coffee i got chatting to a mum i’m not close to but know her face. fair play to her, i’m stood there in my headscarf and she decided to confront the cancer issue. the converstaion went like this…
her- ‘so how ARE you?’
me - ‘not so bad thanks…’
her- ’ hope you don’t mind me asking but what type of cancer did you have?’
me- ‘i’ve got breast cancer…’
her- ‘oh thats ok then, it’s not a serious one is it?’
me - ‘erm, actually yes…’
her- ‘but surely you don’t NEED your boobs, it’s not like a lung or something is it?’
the conversation died at that point…i wasn’t upset at all i might add, but just felt embarrassed for her and me! i really did not know what to say. i’m so shocked by her lack of knowledge about it but even more scary is the thought that before i was diagnosed and learned about breast cancer i too may have said and thought such things…
how does anyone else deal with such questions? i want to give accurate information but also don’t want be the mum that gives frightening lectures about breast cancer !! why is breast cancer seen as an ‘ok’ cancer to have?
advice anyone?
Hi Redcell, I suppose before BC was diagnosed to us we didn’t have much of a clue either. At least you acknowledged that you may have thought the same a few years ago. I have had some dumb comments too. “Oh you are not terminal then, that’s good”…In restrospect it is easy to think of a suitable reply. But at the time I know I it just stuns you. One elderly man ( who should have known better, aged perhaps 65/70) confronted me in the library one day and aked me, “Do you know you are parked in a disabled bay”, “yes” I replied.“I have blue badge would you like to see it. My phjoto is on the back?” (feeling sarcastic!). But you are not disabled" he said, Well I was furious. I told him EXACTLY what was wrong with me and told him that I was trying to lead as normal a life as possible and didn’t need people like him poking his nose in. If he thought I was a fraud, please feel free to phone someone in authority. Then I walked away to a quiet corner and had a weep!..The librian came over to see if I was ok. Told her I was just angry and why. She then went on to tell me that he had already asked her about parking bay. And she had told him that not everyone who used the disabled bay were in wheelchairs but had other forms of disability. Yet he was still intent on pointing out the error of my ways. I am quite a strong person but I hope this taught him a lesson not to judge a book by its cover. It may deter him from accosting an older/frail person in the future. But I must tell you the best one of all that I hope makes you laugh. My OH has been so fed up over the years about people poking there noses in and questioning my disability. We were in France. A man queried me parking. A verbal argument started and my husband told the man to get out of his car. The man opened his door and poor soul had NO LEGS. Gosh did he have a red face…Love Val (Scottishlass) XX
Hi redcell, it’s just not easy is it. I was in same boat as you pre breastcancer I was totally unaware of different types or basically how it all worked. I know soooooooo much more now and have worked through my good friends certainly so they know much more about it too.There is a general perception that once you have had op and treatment thats it ,you are “clear”.You can get back to your life as it was before and normality will be resumed,doesn’t really work like that tho does it…
The worry with any cancer is has it spread and will it re-occur? That is the uncertainty that we all have to live with, whatever our initial diagnosis. There are plenty of women here that have had similar “good” prognosis like mine only to find that this damn disease has returned. I’m not sure if that’s the same as if you have a heart attack,do you always live in fear of having another,I don’t know.
Having to consider my own mortality is something that had never entered my head before,yet we are sat down and given the figures to show whether we may or may not be here in the next 10 years,and no matter how good those stats are I always have the thought in my head that I was told that 9 out of 10 lumps are harmless,so that isn’t really a comfort…
Having to get your head round all these things as well as suffer the side effects of tamoxifen or other drugs we have to take is also an issue,and as for me I have also developed lymphodema which no-one has even heard of never mind understand what its implications are.Yet a third of women with breast cancer develope this. I know some people don’t like to talk about their illness but I like things to be out in the open and I feel the more people that know the reality of living with breast cancer the better, not only will it help them understand what I’m going through ,hopefully they will help them if they go onto develope it too,as stats show that is highly likely.
Saying all that I’m out the other side and feeling fine at the mo,getting on with things and looking forward to living my life with a bit more vigour than I did before because we never know what is round the corner…
this is very interesting - I have just been reading questions posted by mums on a parenting site which I use a lot (and love dearly) because they are compiling a list of questions to ask breast cancer experts and was struck by how little people did seem to know about bc. I would have been exactly the same earlier this year - I knew a bit,having a sister in law with an aggressive HER2+ tumour but had no clue beyond what had concerned her. Now I feel like a bc encyclopedia and have to resist the urge to lecture !!
Am quite shocked of at the lack of knowledge,though I suppose you treat cancer on a need to know basis, it’s probably not something you’d study for your own interest if you or a loved one wasn’t affected
I could link to the site if anyone wanted to see.
think I’m being a bit on an evangelist on the other website thread - I learned a lot from the thread here on secondary cancers and was trying to convey that to their discussion - I hope I have represented it properly.
hello all, and thanks for your comments. Val, the no legs story DID make me laugh!! thankyou… i wouldn’t have known where to put myself!! thanks for that.
sandra, i totally agree with you about not knowing whats around the corner so you try to live life with more vigour than before diagnosis. i do too, and i stop to take stuff in, just the little things that i probally wouldn’t have before. i guess i only know about breast cancer because i’ve got it… and i’m blissfully ignorant of other diseases… perhaps i say stupid stuff to others with other medical problems!
chipper, i’m interested in the site you mentioned… please post a link! becky.x
Hi all…just read the mumsnet link…thanks chipper…I could tell which were your posts! I’ve been living, well, with mets since 2003. I have all my hair and I look and feel well…I think some, not close family, are now beginning to think ‘I thought she had something ‘serious’?’ as I’m still here.
Picking up on blue badges…I could apply for one and my local council would automatically ok it just 'cos of my diagnosis but I don’t need one at the mo and know SO many friends who have had others moan or question why they have them. A lovely friend who died a couple of years ago had a horrible incident in a supermarket car park. She ended up taking off her wig and calling the chap a ******. Like you Val she was really upset and was with her teenage daughter at the time.
It seems, to me, that there’s lots of ‘awareness’ out there, the whole pink thing but no real substance. I think so many people think it’s a case of have mastectomy and job done…with perhaps 5 years ‘all clear’ thrown in.
Belinda…x
The general public are very ignorant about health issues, including cancer. They have no idea what cancer is exactly and how it can kill by breaking off and spreading. They also think all cancer is the same, so if their Aunty Mabel had cancer of the kidney, then it is just the same as cancer of the lung, breast, brain etc. I suppose to the woman who thought losing a breast was all there was to it about the treatment of breast cancer, it was not so bad - like she said, you can live without breasts. She clearly had no idea about the greater risk of cancer.
I heard Chris Evans the other day say that we should eat more fibre because it cleans our veins!!? So, there will always be the ignorant and whether you chose to enlighten them or not is up to you. Personally, I can’t be bothered and treat their stupid comments with the contempt it deserves.
It’s a hard one - I bet we’ve all had these sorts of comments and I do think that it’s not our role to educate people as it’s a very emotional and personal thing and we need to look after ourselves, if that makes sense? It can be very upsetting talking to someone who is very ignorant about BC about your personal experience and you could end up saying things to someone you don’t really know that is really upsetting to you, and they won’t be able to support you at all.
So maybe give them this website to look up things themselves? the internet is a fabulous thing!
I know wigs aren’t for everyone but I found it really helped when I was at baby groups etc as then I was just a mummy and wasn’t looked at as a mummy with cancer.
My (male) neighbour told me when I was first diagnosed ‘well, that’s ok, it’s got 100% cure rate hasn’t it?’ - I didn’t bother to explain.
Also, at a christening recently my sister-in-law’s mum said to me ‘well you look so well, I thought you’d look all wasted and ill with the disease?’ I think she thinks I’m making it up!!
and don’t get me started on the whole ‘all clear’ thing - i’m very very sick of people saying that to me …
hi all,
thanks for that link chipper, i read through it and it really does highlight misconceptions and general lack of awareness of breast cancer! i think it is good of you to try to educate/ bring awareness to the general public as you are clearly trying to do.
belinda, i echo your sentiments about people thinking you had something ‘serious’. although my diagnosis is currently primary, i’ve just finished chemo and all the way through it i tried to carry on as normally as possible for my babys sake. i’d do my make up, dress well. and carry on. people (work colleagues/ friends/ even family) were shocked at how ‘well’ i was looking, i was even asked if i was on a ‘strong’ chemo…!!! ??? what was i supposed to look like?! what does a cancer patient look like!!! ???
hannah, i think i’m coming around to your suggestion of pointing people towards the internet… no one has asked me yet if i’m ‘all clear’ but WHEN they do i promise to hit them in your honor !! x
I am having to hold back on the mumsnet thread and not try to wade in as it’s obviously not what that particular thread is intended for ! To be fair though- I would have been fairly unaware of what bc is all about before my own small experiences.
I was totally ignorant about cancer until I got it. I wasn’t sufficiently breast aware. I never suspected I had BC when my problems started Dec 07, towards the end of my pregnancy and I went a further 10 months before dianosis with stage IV. If I had been more aware, I would have been getting checked out in the December, not the following Sept and maybe my cancer wouldn’t have spread.
I think lack of awareness and thinking BC is not that serious is a BIG problem. I’m interested in raising awareness to younger women in particular as we don’t get regular screening and a lot of material is aimed at the over 50’s. I’m also interested in the trigger being during pregnancy or whilst breast feeding and raising awareness of that. My GP didn’t think I was at risk because I was breast feeding…nor did I.
I thought, I’m young I breast fed my eldest and I’m breast feeding now and I didn’t fit the ‘criteria’. Ha Ha.
Something like 17million people don’t access the internet. Good to see this topic raised. Makes me think I need to try and do a bit more, share my experience sort of.
Hi Georgiebella, I am not sure if I know much about you apart from what you have just written above. I have stage iv too and it is in my bones. Want to tell me more? A Private message if you prefer but I would like to hear your story. Hope you don’t mind me asking. LOve Val (Scottishlass)
Mine was dx primary last Sept and lover mets last October, confirmed in the Nov (extra scans to be sure). 4 x EC, 2 x tax and 2 x Taxol then agreed mast and rads as good scan results. 8/8 nodes affected even after chemo and now on zoladex and tamaxofen.
I was back and forth to docs with breast problems for weeks before I found my lumps and my problems were thought to be beacuse I was breastfeeding. I’m very determined so refused to stop breast feeding despite the problems I was having but my breast decided otherwise which was when I knew I had a serious problem - it took 6 weeks from then to diagnosis.
Is your story similar? Or is this an area you are interested in too?
Hi Georgibella, I just wanted to know about you really. I too breast fed my two children and found a lump about 2/3 years I think after second baby. But kept getting fobbed off. Wasn’t cancer. Got it checked out on many occassions over next few years. But I JUST KNEW things were not right with my body. I was certain it was Cancer. In the end I foolishly thought I must be a hypercondriac and it was all in my mind that the lump was cancerous. The lump was a tiny pea sized to start with but as time went on it got bigger until I couldn’t really feel it. Thanks to female GP who I had gone to for other purpose she said before she did anymore she would like to send me to breast clinic just to check things out. Well by the time I got fully dianosed it was 5.5 cetimetres! Huge. I was in shock. I was 39. Had my last daughter at 32. But that was 20 years ago and although I have secondaries in my bones now, I am still here and my girls are 27 and 34 now. Amazing. Love Val (Scottishlass) x
I think it’s difficult to raise awareness in the general population.
When something affects you personally, you become an expert of sorts. But, as has already been pointed out, if none us had ever developed bc, how much would we ourselves know?
The same must be true with other diseases/conditions. Take dyslexia for example; there are several types, something I didn’t know until I read more about it. But I only read more about it because I have close family members with the condition.
I do agree that it is surprising what GPs don’t know, especially with such a serious condition as bc. I don’t think that giving them financial incentives for tackling other issues (hypertension, high cholesterol, etc) encourages them to take in information in a balanced fashion.
I agree that it would be an impossible task to educate the general public about medical issues and as Bahons points out, until we are directly affected by something, we remain ignorant. I am not surprised about GP’s lack of knowledge either. They can’t possibly keep up to date with every single condition they may encounter. However, a good GP will listen to their patient and take a detailed history which is very revealing and then refer to a specialist. I do feel sorry for GP’s - on the one hand, they can’t possibly refer everyone with a problem with their breasts to a specialist, but on the other hand, this means that those who have symptoms and signs which are not the “norm” are missed. This is why NICE have published guidelines to help decide who should be referred.
I’ve been living, well, with mets since 2003. I have all my hair and I look and feel well…I think some, not close family, are now beginning to think ‘I thought she had something ‘serious’?’ as I’m still here.