Tears aren't stopping...I have just been diagnosed.

Hi,

I received my biospy results yesterday and I have been diagnosed with breast cancer. I can’t believe I’m saying that! I have no family history of the disease so this has come as a shock to not only myself but to my family.

God didn’t bless me with a large cleavage either…Not a big fan at the moment!

I’m 38 and have been told I am young to have the type of breast cancer I have. I have a fast growing agressive tumour grade 3 and it’s affected the lymph nodes to what degree we don’t know yet.

I have 2 children, a daughter of 2 who I can deal with and an inquisitive, sensitive son of 8 whom I am dreading telling but am not going to hide this from him.

My treatment plan has yet to be finalised but i will start with chemo in a few weeks.

I would very much appreciate any hints, advice etc on telling children and also about the chemo process and how I can help myself through it.

Thank you so much in advance for your support xx

Hi twinkletwinkle

I am so sorry you find yourself on our forums, but I know that you will recieve lots of support from many users. In the meantime, if you have any questions, or simply would like someone to talk to, our freephone helpline is open 9-5 on 0808 800 6000, Monday-Friday and 9-2 Saturdays. Our trained helpline team and specialist breast cancer nurses are there to listen and support as well as answering any questions you might have.

Take care
Poppy
Moderator

oh no, what a shock, and as you say too young to be expecting it to happen.

I do not have your sort of cancer, but there will be a flood of ladies on soon doing chemo who will give lots of advice. There is a also a good book that everyone recommends–mummys boob I think its called. But you might need you want to talk to your son before it came through. Perhaps the help line can give you some pointers before he gets home from school.

Stop googling, ask any questions you have of the helpline or on here. Then you will get up to date information about what is happening now in the UK rather than 5 year old scare stories from different parts of the world where treatment might be different.

Again so sorry that you find yourself here, the next few weeks are going to be emotional and hectic, getting more results, starting chemo, sorting out a plan, but everybody says that once that plan is in place and treatment starts everything seems a lot more manageable. Chemo is not fun but it is doable and the people on here will be with you every step of the way

Hi twinkletwinkle so sorry you have had to join the forums but welcome,you will find much support here there are many women on the forums with grade 3 and i’m sure they will be along to help and support you through this.I have put a link below to mummy’s lump hope it helps.

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/mummys-lump-bcc164

wishing you all the best lve Melxx

Hi Twinkle

So sorry this has happened. Want to send you a hug as I know the shock. I was 38 when dx in March 2010. My children were 2 and 4 at the time.

The two year old was easy as long as he was fed, cuddled and played with he was fine. My 4 year old needed more explanation but I understand that eight is quite different and will need careful handling. I am sure others with children that age can help. Only advise is to not rush things, I found I discussed and prepared for things a little too early and maybe this built them up too much. I also had access to a child counsellor through the Marie Curie centre near me. She was brilliant and was able to liase with the school and advise the staff on what to expect.

We always think of our children first and want o make sure they are ok. Mine have got through to this point pretty well.

You will find a lot of younger women on here with aggressive cancer and many like myself with lymph nodes involved. Unfortunately that is what can happen when you get bc young. But Chemo is manageable, if unpleasant. You will have good days on it and you may find you do not get anywhere near the side effects they tell you about.

The phone line is v good for talking about your worries, so use them as often as you need. Take care of yourself and please ask any questions, there is always someone who can help.

Big hug.

Debx

Hello,

I was a bit older than you at dx - 44 - and had a grade three cancer that had spread to my nodes. My three children were all at secondary school. That was 4 1/2 years ago, today I am fit and well and getting on with my life. Two of my children are now at uni, the third has just gone into the 6th form. So there is light at the end of the tunnel.

Again like you no family history, and no big cleavage! Not fair is it?

Hello Twinkle Twinkle,
so sorry you have to join our club that no-one wants to join, especially when you are so young.

My situation is different from yours - I was 47 at diagnosis, single, no children - but I too had a fast growing grade 3 cancer with lymph involvement; I’m officially ‘young’ even at my age! Once all the tests are done and you have a treatment plan it will feel far more copable than now when you are in a total state of shock. Because everyone is different, and different hospitals have different approaches I can’t say “this is what will happen” but I have done chemo (before surgery, called neoadjuvant) had a mastectomy & immediate reconstruction with lymph clearnace and radioptherapy. It is all do-able, not nice, but do-able, and there are some lovely folk on here who will travel with you every step of the way.

In the meantime, the golden rule is “do not Google”, try to be kind to yourself, allow yourself to repsond in whatever way is natural for you - anything from numb to screaming, crying to questioning or anything else, it’s fine.

It may be worth contacting you little boy’s school so that they can help you - but obviously only if you or you O/H (assumption, sorry) want to and think it would help.

Quite a few folk on here will be able to tell you how they’ve told their children.

In the meantime, I am sending you a cyber-hug - we send lots of them on here cos they’re essential.

Take care.

Hello Twinkle, so sorry that find yourself here.

38 is young but you will find that you are not the youngest on here with a similar diagnosis to yourself. I am 55 and have invasive lobular with node involvement. I am halfway through chemo prior to having a mastectomy and then radiation treatment.

My daughter asked me to explain what was happening to me to my grandson who is 8 and very sensitive. I used the book “mummy’s lump” which you can download of this site (somewhere!)

Let the tears flow, they will stop eventually - and start again from time to time. There is lots of information and lovely lovely people on this site and in this forum. Lots of them will be along shortly to say hello and offer advice. If you have any questions, just ask.

Best bit of advice I was given was to get a white board and write down all the appointment dates on it. I was diagnosed at the end of May 2011 and June was just full of scans, tests, biopsies and other appointments. I started chemo at the end of June and am now half way through. It’s do-able.

Chin up x

Hi,

Phew - a bit of a whirlwind isn’t it?

I’m 42 and was diagnosed nov 10 with lobular cancer. I’ve completed chemo, had my mastectomy and reconstruction and about to start radiotherapy.

I’ve 2 children: a 6yr old lad and 15yr old girl.
I remember the awfulness of telling them but did it straight away. I said that I had a lump in my boob and that the medicine I would take would make my hair fall out. I was quite candid about the op too. My lad was generally fine: I’d told him what was going to happen and so it would and that’s that. My girl was a bit different, being older, she could fill in the gaps that I hadn’t. However, when she asked a question I answered it.

They saw me cry - but not lose it. I felt that if they saw me being honest about it then they’d feel that they could be honest about it. No stiff upper lip in our house but equally no swooning either! I wanted them to know it was tough but we’d get through it.

On a practical sense let teachers/nursery nurses etc know as soon as you feel you can tell them. They’ll be able to keep an eye on them too.

It’s nearly a year on for me and like you I cried and cried. But I promise that once you begin your treatment you’ll feel happier and more able to deal with it. Take ALL offers of help and if you can’t sleep it might be an idea to pop to the docs for a few sleeping pills - things are easier to cope with after a sleep.

I hope theses words help a little, this forum has been a godsend both to keep up spirits and find info. Keep posting.

Good luck xxxx

Hi Twinkletwinkle,

So sorry you have had to join us - but hopefully you will find this forum a great support as we all have.

I’m 33 and was diagnosed at the end of May with a very large lump and positive lymph nodes and started chemo straightaway. I have my last session next week and then will have a bilateral mastectomy with delayed recon and radiotherapy.

I also had the word “aggressive” said to me on numerous occassions which sounds terrifying. But unfortunately most cancers in younger women are more aggressive than the norm as our bodies are more active and the tumours tend to be found later as we’re not having regular scans and mammograms and most are grade 3. Every time I heard that word I thought they were basically handing me a death sentence. But it’s not the case.

I don’t have children (that’s another story - desperately want children, but will most likely be left infertile by treatment) so can’t really help on that front - although I know there’s a BCC publication called “mummy’s lump” that you can send off for for free. But my mum had cancer when I was young so I can give you my perspective from my experience as a child. My mother tried to protect me and my sister and covered it up. But we KNEW something was up and I think it was actually scarier knowing something was wrong - but as the adults weren’t talking to us about it, it didn’t feel as though we could ask questions. So I suffered in silence and remember crying alot at school. I honestly believe that if my mum had been more open it would have been easier as it would have been less scary as I would have been able to go for her for hugs and to ask questions. But that’s just my opinion! I can’t even begin to imagine how scary and difficult it is for you.

Now. Chemo. I was HORRIFIED at the thought. It affects people in different ways and some do struggle with some of the side effects BUT many (including me and other young women I’ve met) sail through it. I had visions of months with my head down the loo, and when my breast care nurse promised me that I wouldn’t be sick I didn’t believe her, but I wasn’t. And there are amazing drugs to combat the side effects. On my first day of chemo I met a 39 year old lady who has 2 children (3 and 6) and she worked all the way through chemo - and then obviously had her kids to look after in the evenings and weekend. She really put my mind at ease and was a real inspiration. My worst side effects with the first lot of chemo drugs I had were feeling queasy and hungry for a few days (kind of like a hangover) and tired but not being able to sleep for the few days I was on steroids for the chemo and with the second drugs the side effects have been tiny - dry feet and sore nails, but no queasiness and lots more energy. I had also kept my hair for most of the treatment as I was using the cold cap - but it has got quite thin now, but I have my last one next week and if I lose it then I wont be too upset as it’ll start growing back soon.

You WILL feel better once you know your treatment plan and start the treatment and get a bit more control back. Everyone said that to me in the beginning and I didn’t believe them, but it was true. I was in floods of tears before and after diagnosis, but as soon as I started chemo I did start feeling better. Don’t get me wrong - I still have major wobbles and it’s a serious disease, but the majority of breast cancers are curable and that’s what you’ll be treated for. Being young also means they can throw aggressive (it’s that word again!) treatments at you and you’ll be able to cope with it.

Please message me if you have any questions. Also the helpline is brilliant. I didn’t use them at the beginning, but have done a couple of times recently and wish I had called them at the beginning. They’ll be able to explain and answer any questions you have - and you’re allowed a good old cry on the phone to them!!

Keep in touch with us.

x

Twinkletwinkle, here, catch, have a big hug from me.

Re telling your 8-yr-old, there’s no mad panic for you to say anything today. Give yourself the chance to get your head round the shock, talk to your partner (apologies for the assumption) so you can both work out for yourselves what you tell him and how. The book is very good, and will give you something to use in the conversation.

When I found out my kids were a lot older than yours (12 and 14 for the youngest two), but still kids. I encouraged them to ask anything they wanted to ask, and tried to preempt questions they might have, but I was surprised by some of their questions. Expect the questions they ask to be very child-centric. I know your son loves his mummy very much, but he will be worried about what this means FOR HIM, and who’s going to do things FOR HIM if you’re not well enough to. So have a think about who will take him to and from school if you’re not feeling up to it on some days, who will take him to football practice or any other out-of-school activities he does, who will get dinner ready, that kind of thing. He’ll also need to know about the hair thing at some stage, but kids are very resilient and you may find he’s completely unphased by it and that also depends on how you deal with it (cold cap, wig, hats, scarves etc).

A couple of practical things you might want to get sorted.

Get your presecription exemption form sorted out. Your GP’s surgery can do this very simply, they fill it in and stamp it, you sign it and they can even send it off for you.

Give the Helpline a ring. They’re fab. Doesn’t matter if you just end up blubbing at them, they’ve heard it all before and won’t be bothered by it.

Have you seen the oncologist yet? The onc will be able to tell you precisely what your regime is. There are different treatments and schedules, so yours will be planned specifically for you and may involve surgery (different types, and can be before or after chemo), radiotherapy (but might not involve rads), chemo (lots of different types and schedules), hormone therapy if appropriate (not everybody has hormone-receptive tumours), etc etc etc.

Take a browse round the Publications part of the site, there are some very good leaflets that explain what might happen.

Get a notebook and write down any questions you come up with.

THERE IS NO SUCH THING AS A SILLY QUESTION. Ask anything you like - none of us knew any more than you did when we started and the only way to find the answers is to ask the questions.

BE KIND TO YOURSELF. An atom bomb has just gone off in your life, you can expect to feel like it!

And come back and use the forums as much as you find helpful. You may find it sensible to restrict yourself to certain parts of the forum. With the deepest respect for those who have posted in the sections, when I was first diagnosed I just found it far too upsetting to read threads in the End of Life section, for example.

Macmillan is another good source of information, but don’t google indiscriminately.

And here, catch, have another big hug from me.

CM
x

Twinkletwinkle

I am so sorry to hear your news. Like you I was shocked as no family history and had a cyst removed the prev year after Mamagram and Ultra sound. So when I found the lump just though oh another cyst!! To be honest I did all the tests first, MRI CT, bone scan, X rays before telling my girls (both 14) so I could get my head around it first before telling them so I had the whole picture but yours are a bit younger but i think you need a couple of days to digest the info. YOu’ll prob wake up and think it’s all a bad dream and then realise its not. we’ve all been there. We are all there for you whatever you want to know just ask. I found a good howl worked wonders. Let us know how your coping and any support you need.
Ginge xx

Hi TwinkleTwinkle - just wanted to second all the fantastic advice you’ve been given here. My children are 8 and 5, and whilst I have now told them about the cancer, I told them about the operation and all the practical changes that were going to happen *first*, before using the c-word. Gave me time to find the right words. It’s the practical things they will notice affecting their world. Once you have a treatment plan things will settle a bit for you and you’ll start to see a way forward. I was very glad that I was completely up-front with my children. I lived in dread of them finding out somehow, and now we can talk about it any place any time if we need to. Also agree with not googling, and stay on proper sites like this one for information and support. Although I’ve mostly been lurking since my diagnosis in May I am here every day and find it a very calming place to be.

Take care, Helen

Twinkletwinkle - Hi!
I too, stage 3. Grade 3, agressive, invasive and all the other stuff. I was 39. Now 40, muddling through treatment. Done chemo, was OK. Lost part of my boob and all my nodes, loosing more boob next week. Rads after. Won’t go into any details, will leave that to the others, (Got to get tea on!) lol.
We’ve got ears, we listen :o)

take care,

You are going through the worse part now, the ops, the chemo, the rads, the hormones are all doable, and I hate that word. you will survive this.you will
xx

Hi TT

Just wanted to send a cyber hug to you. It’s a massive shock for any woman of any age. I was 34 first time around. I’m just going through my second lot and I’m 38.

You absolutely will get through this. That initial horror is a feeling we can all relate to. But in your own time, you will learn about your cancer and you will have a feeling of more control and understanding of your treatment.

It may feel like now it is the end of the world, but a new you will emerge. You will surprise yourself with how strong you can be. You will surprise yourself - although it is hard to believe right now - how soon you will laugh again and look to the future. And you absolutely will!!!

xxx

Wow some fab advice here and this site has been a bit like a best friend thru my journey so far…
I’m 35 2 kids 8 and 4 (started school today - stupid half days!) Had grade 3 (aggressive) invasive BC had mastectomy, start chemo next week then rads, herceptin then 2nd mx and then recon. Feels like a long road but on here you’ll get msg’s from people at different stages and it’s a fab support - i even meet up with one of the ladies i met on here as she local to me and her kids same age as mine.
I talked to the kids 2 days after dx and said i had a special book (mummys lump is fab) coming and we had small cry then they asked to go for a bike ride. In the book i was tempted to leave bits out as my original plan was lumpectomy then rads but i’m glad i read it all thru as things changed for me and then there were no shocks for them when we looked at the book again and i explained latest plans. I used the word cancer from the off and they are very confident to talk to me and others about whats happening. Teachers knowing has been vital and so on important hospital days they are keeping a special eye on them for me, and they spend a lot of time at school the teaching staff see more of them than us…

BIG BIG hugs to you welcome and I’m sorry you here - later on in new year i’m hoping to attend young womens forum (hotel/conference funded thru BCC) I think it’s gonna be important for me to go.

You will find strength you didn’t know you had and you’ll find amazing strength in your family/friends and will make some special friends along the way too!

Be strong take your time xxx Michelle xxx

I went on one of the Young Women’s Forums and it was truly excellent - really informative on everything from treatment to recon to coping strategies - but arguably the most helpful thing I got out of it was meeting similar aged women going through the same thing. I’ve kept in touch with a few of them and meet up regularly.

Wow! Thank you so so much for all the advice that has been posted. I’m overwhelmed by the response.

I’m crying again but not tears of sadness, obviously not tears of joy either, but tears because of your kindness.

I’m not going to google! I have already realised that if I have a problem or even a small niggle I’ll post on this forum.

How corny does this sound but I feel like I have a whole new group of friends so thank you!

I am waiting for my oncologist appointment which should be next week or the week after. Tomorrow I’m having my coil fitted into the tumour as a marker. It’s going to be a long journey but bring it on!

xx

Hi TT
There isn’t very much I can add to all the wonderful advice you have already been given but I am coming up to the first anniversary of my diagnosis and I can’t believe it is here already… it has been both the fastest and slowest year of my life… if that makes any sense!
So much has happened to me in that time but I got through it.
The important thing I want to say is that lots of good things have happened to me in the last year too… life doesn’t have to stop
Sending you lots of love x