Diagnosed breast cancer today - can someone hold my hand?

[elportodelgato]

Diagnosed today, after what I thought was a fairly routine check last week. Biopsy and CT scan show cancer in one breast and has spread to nearby lymph nodes, but not anywhere else. Looking at surgery within a few weeks and then chemo etc.

I have literally no experience of this, no one in my family has gone through this. DH and I are both in bits and need to find a way to a) rearrange the holiday of a lifetime which we were due to go on in a fortnight and b) somehow tell the DC who are 3 and 6

I am veering between crying uncontrollably and being strangely calm, just need someone to talk to who has been through this, anyone please?

[mintyneb]

I've just PM'd you. Had more time on my hands than I thought

[elportodelgato]

I am resurrecting this thread so I don't completely swamp the tamoxigang one, it doesn't matter if no one is reading now, I just need to write to make me feel better at this stupid time in the morning.

I have convinced myself that it's spread, that it will be dead soon, that my kids are going to grow up without a mum and I'll never see how they turn out. That all that lies ahead is pain and illness and no hope. It's still 10 days til I get the full diagnosis, I am almost hoping they find something on the liver scan on Monday and call me in sooner with a treatment plan as I can't handle this waiting and testing and worrying

I know I have to stay strong and focus on each day as it comes. I know I have great support. I know I have to put my faith in love and science. But I am fucking terrified and angry and shaking with the enormity if it all.

We are going to tell the kids today and that is very daunting. They are only small - 6 and 3

[winnybella]

Good morning and . It's absolutely miserable waiting for results, isn't it, the fear of unknown. Of course your anxiety is through the roof and tbh I don't think there is any way you should be feeling right now, it's perfectly normal to be scared. Having gloomy thoughts and being sure you'll never recover is what I imagine most newly diagnosed people go through. It doesn't mean there's any truth to it, though. It really, really will get better once the treatment plan is in place.
Re: telling the kids, I wouldn't make a big deal out if it, I wouldn't sit them down with DH and you and make a big reveal, tbh. I almost feel it would be easier to tell them when you know all the facts and can (more) confidently say that you have a bit in your breast that the doctors will take out on Thursday and than this and this will happen, iyswim. They are so young that they don't need to know much at all, so short and breezy and cheerful and almost in passing will be much better, I think. It worked well for my kids, but obv. It's a personal decision.
Having said all that, your ct scan was clear, so that's very encouraging, they have to check everything to make sure as your nodes are affected, but so far, so good.
Have you got good friends to get drunk with sit down with and cry and panic? I haven't told anyone after my diagnosis which in retrospect I should have, just my mum. Hours and hours on the phone to her helped, as did wine in the evenings.

[GertieFinkle]

Bloody buggery MN I'd just written a huge message, used another tab to look something up for you and my post disappeared. Right, trying again!

Firstly, good morning Elportodelgardo. I am so sorry things seem so bleak right now. I haven't been through Breast Cancer myself but I do have three positive stories for you. We have two mums at school who have had BC diagnosis, one 3 Yrs ago, one 5 yrs. They are both fighting fit, healthy and strong. The other one is dh's aunt. She was diagnosed in her 30's and had one breast removed. She died last year, aged 93 years old!

I understand it must be natural to have all the worst case scenarios running through your head. Can you put them on pause for a minute and put in the tape (showing my age) with the best case scenario on? Picture yourself, your dh and dc on the beach, playing and laughing a few years from now. That is the most likely scenario.

Lastly, telling the dc. Please try not to worry about it too much. My friend's dh had cancer, she was very worried about mentioning the cancer word to her dc rather than just saying he needed and operation. When she shared her fears with her dh he said 'oh, I already told them. I said they had found some cancer cells, the operation should get rid of them' and that was that! Her dc were very matter of fact about it (they were 8yr and 11yrs). I am sure telling them will be worse for you than them but it will be good to get it checked off your list (in your beautiful new stationery!)

And on the topic of stationery may I recommend this notebook www.amazon.co.uk/Julia-Rothman-Typewriter-Eco-journal/dp/0811879453?tag=mumsnet&ascsubtag=mnforum-21 which is fantastically quirky inside - but buy it from John Lewis, they have it on sale right now. And also, as an utterly pointless distraction www.amazon.co.uk/Zentangle-Basics-Expanded-Workbook-Edition/dp/1574219049/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1405232518&sr=1-1-catcorr&keywords=Zentangle&tag=mumsnet&ascsubtag=mnforum-21 if you can't get your head into a book when you are waiting for appointments etc some good mindless doodling might help. I read an article by a lady once who was in your position and started zentangling and found it a great distraction. Of course you might think what a load of twaddle but it's worth a suggestion.

Enormous hugs to you, take care.

[bucksmum71]

Hi whereabouts do you live are you anywhere near. Maggie's Centre they are fantastic at supporting anyone affected with cancer including family and friends. The web address is www.maggiescentres.org. They also have an online centre for support if you don't live near one

[elportodelgato]

Hello again

After I posted the kids climbed in with us and I managed to get some more sleep, though I still feel like I've been hit by a truck.

Winnie, when were you diagnosed, is it recent? The reason I have to tell the kids now is because we are meant to be getting on a plane in 10 days time, which is now cancelled, and we actually won't have a treatment plan in place until after that date. Also DD1 knows that something is wrong and is starting to worry, so I would rather tell her than have her imagine all sorts of other things. It is bad though that we don't have all the answers to the questions yet, but I think we can be honest about that. Have borrowed The Sound of Music from a friend so we can all cuddle on the sofa this afternoon and eat popcorn.

Gertie, I massively appreciate the distraction ideas! I have been playing solitaire on my phone but it really doesn't cut it. So far my other ideas are audiobooks, sudoku, podcasts, and now Zentangle which I have never heard of but seems like it would be perfect for passing the time. Tomorrow I might start on a nice fat novel, god knows I've been meaning to read more and so this is probably my chance.

Thank you all so much, I can't tell you how lifted I feel to wake up and see more posts on this thread, and know that people are taking the time to write. It hugely calms me down in those dark hours.

[weebarra]

Porto, I'm on the tamoxi thread but not posting there much just now as have just finished treatment. My DCs were 5, 3 and 8 weeks when I was diagnosed. I had the lot. Double mx with node removal, chemo and just finished radiotherapy 3 weeks ago. There is a good book called Mummy's Lump by Breast Cancer Care, it's free from their website, I found it useful for telling the DCs. My older DS is very sensitive and empathic, I had chemo first and he found that tough, but school were very supportive.
Of course, I live in dread that it will come back, but at the moment I am cancer free (as you will be) and I am living my life. Please pm me if you want to ask anything!

[elportodelgato]

Hi all, and thanks for the wise words and the support.

We told the DC this afternoon and I think it went as well as could be expected. DD1 cried a bit, but we tried to reassure them that the doctors and nurses will be doing everything they can to make me better. DD2 quite heartbreakingly started patting my boob to 'make it better' which had us both tearing up, but we held it together. Only mentioned surgery and the delayed holiday, didn't talk about chemo yet as that won't start til September and we can cross that bridge when we get to it.

I am feeling so much better than this morning, but I know it's the night times and early mornings which really knock me. That waking up at 3am thing is just horrible, and then I struggle to motivate myself to get up at 7 to do the school and nursery run. My work have been amazing and I am signed off now for the foreseeable which is such a relief.

Having a roast dinner tonight, then watching the football and hopefully having a decent night's sleep. My mum is coming with me tomorrow for my MRI scan and taking the kids in the afternoon when I have my liver ultrasound. Thank god for family who live locally, we are utterly blessed with the amount of support we have as we go into this. Even in the heart of the panic, I know how incredibly lucky we are in so many ways.

[elportodelgato]

Weebarra - I am so amazed at how you got through it with 3 DC and one of them so very tiny when you found out. Bloody hell, that must have been so so hard. I do have the 'mummy's lump' book (is it not the most heartbreaking thing you've ever seen? Bloody hell) and I'm just waiting a little til we know the full diagnosis to use it, in case my situation is more complicated than the book suggests. My DD1 is quite sensitive too, it's hard because you have to talk about stuff which you know is going to hurt them and it feels like an end of innocence. YES I know that's dramatic, and I hope it won't be like that, but YKWIM

[StillProcrastinating]

Evening Elporto,

Glad to hear things are moving on. Once you get started on the scans etc, it will start to feel a bit more like a clear path. And that does make it easier. You just have to focus on doing what you are told, and doing it well.

When I got my date for my second op, it was my motivation to get back to running. I had kept meaning to do it. Figured it would aid me in the treatment if I was as fit and strong going into it as I could be. Would that help you?

Completely understand re. The dark thoughts that come at night. I get them still at times. Keep asking people for coping strategies, because it's totally to be expected to get them.

Xxx

[elportodelgato]

Hi Still. Yes, I am a pretty keen runner and want to get back to it this week, maybe on Wednesday when I have a clear day with no tests. I hear you about doing what I am told, if my nurse told me to take up knitting or gymnastics or bloody anything I would DO IT. Just like my dd1, I like to know what I have to do and do it as well as possible, we're rule followers in that respect I am trying to get my 7 fruit and veg per day and tons of protein, plus staying off the caffeine where I can.

Fingers crossed for a good night's sleep, and strength for tomorrow back at the hospital.

[GertieFinkle]

How are you doing Elporto? Hope your time in hospital was as ok as possible.

[smee]

footie! Sorry about my stat typo, yes 1:8 get breast cancer. Still a lot - kind of helps to normalise it. That's not to trivialise the experience of it all, as it's so awful when it's you.

Really hope you're okay Elporto The others are right, once you know it all and have a plan it does seem to feel more manageable. Thinking of you. x

[elportodelgato]

Thanks smee and Gertie

I am now mostly posting on the tamoxigang thread, full of awesome ladies going through much the same crap and with loads of good advice.

Tests, meetings and other stuff every day this week, I am quite worn down, my meeting where I'll get my diagnosis & treatment plan is next Wed 23rd & probably surgery the next day - au revoir left breast :-(

I am very up and down indeed and sometimes just feel blank and empty. Not getting much sleep either and am fearfully scared it has spread. Very tough days.

This morning I have been injected with radioactive fluid and am waiting for my bone scan - what more indignities FFS! thanks for checking up on me, the support I am getting here is really truly a lifeline ATM

[GertieFinkle]

So glad you are getting lots of support Elporto. The only good thing about dreadful situations like this are that you find out there are a lot of good, kind and generous people out there and also the realisation that the daily crap we worry about - carrying those few extra pounds, worrying about what to cook for dinner etc really are not worth wasting your energy on.
Take care.

[smee]

Ooh I remember that bone scan. I was so nervous, but it's good to get it done and I'll keep all crossed for the all clear on that. Great that you've found Tamoxigang. Definitely the place to hang out. It got me through my treatment that's for sure and I made lots of lovely friends who I'm still in touch with four years later.

[elportodelgato]

Hi smee, do you mind me asking what your journey with cancer was? You could PM me if that's easier. And yes, the tamoxigang are awesome! Gertie, I am meeting lots of amazing people this week both on and off mumsnet. I wish I wasn't really but here we are and my faith in human nature is very much restored

[elportodelgato]

Smee - all is clear on the bone scan thanks for your good wishes
Just liver MRI to come so please keep everything crossed for me for that on Friday x

[smee]

Yay, yay for bone scan!! Finally you're getting some cheering news. I'd bet the liver MRI will be clear too, but will most definitely keep my fingers and toes crossed.

I was diagnosed in 2010 small v.aggressive lump, plus lots of DCIS so they said my breast was 'unstable' (!). It had reached a couple of nodes under my arm, so it was a no brainer and I had mastectomy, chemo, rads. In the Consultant's words 'we're going to chuck everything we have at it'.

2011 decided to have preventative mastectomy on the other breast. I was told I didn't need to, but talked them into it. Apart from anything else I wanted both sides to match! I've now got matching rather ridiculously pert silicon breasts with frankenstein scars and no nipples - though I might get those later this year (weird thought!). I'm over 4 years on and feeling totally fine. Paranoia's always around, so every ache or niggle worries me, but it's getting easier to handle as time passes.

Ask me anything and feel free to PM me, I was in bits at diagnosis, but de-mystifying it all by talking to others who'd been there really helps with the fear. You're not alone and you can do this. If I can, then so can you.

[elportodelgato]

Hi smee, thanks for your message and for sharing your story, it is so incredibly helpful to hear from people who have been through this process.

OK so the reason I am worried about liver is that 'something' very small showed up on the CT scan, which led them to do a liver ultrasound. Nothing could be found on the ultrasound, but I now know that's because whatever they saw on the CT is quite high up in my thorax and they couldn't get to it. So, hence the liver MRI tomorrow to check it out in detail. Now, I know (sensibly) that it could quite possibly be nothing much. On the other hand my brain is convinced it's spread, that they know it's spread, and that the MRI is just to confirm exactly how far it's spread. I am entirely convinced about this now in a 'worst case scenario' kind of way, so I suppose I can only be pleasantly surprised next Wednesday when they tell me for definite what's going on and what they're going to do about it.

DH thinks I have lost my mind, I think I'll be saying 'told you so' next week when they tell us it's spread. This fucking cancer does nothing for your mental health either does it?

Smee, if it's not too personal, how are you finding it without any nipples? This part is bothering me quite a lot and I want to try and get my head around it more if I can.

[smee]

elporto, lots of things show up on the liver. My friend had a scan with a similarly worrying area and it turned out to be a normal collection of blood vessels. No point in me saying don't worry, but honestly the odds are still v.much on your side. My DH was v.like yours - he spent the whole time telling me I'd be fine. It'd be v.v.weird if you weren't worried. That's sane I reckon.

nipples, hmmm…am sure how I feel to be honest. Which might sound odd as I have been nipple-less for years now. I didn't care about the first mastectomy as obviously I actively wanted it to get rid of the cancer. Then it was all about treatment and getting through so the no nipple thing wasn't a big concern once it was done. I had expander implants straight away - various reasons can tell you what/ why if you want - they feel weird and my breasts (now silicon) look weird to me still. They look like breasts but they're not mine - think teenage very perky breasts on a 40+ woman. So the nipples are kind of secondary to that iyswim. None of it feels right, so the nipples are just part of that.

That's not at all to put you off implants. I like mine now and how amazing to be in my 40's and never have to wear a bra. It just takes a while to adjust and I think my only issue with them is they'll just never be my breasts. Nipples might help, so I probably will do it. All trivial really and just another thing to get your head round. Bloody cancer. G'ah to it!

[StillProcrastinating]

Best wishes for tomorrow Elporto, will be thinking of you.

And like Smee I also have a very fine pair of silicon boobs minus nipples. So far I just find them quite entertaining. I don't give a hoot about my lack of nipples. I connect the nipples with the (pre)cancer in my head. I am much better off without them.

Nipples or lack of them is a very small thing in the wider context :-)

[elportodelgato]

Thanks you Still, for the very welcome perspective on nipples Frankly if I have secondary in my liver (which I have now convinced myself of ) then nipples will be the least of my worries.

[HaveYouTriedARewardChart]

Fingers crossed for you today OP.