Just diagnosed, what next?

[LionMummyRoar]

Breast clinic today, two consultants certain it is cancer. Appointment Wednesday for results of biopsy. Terrified for what it might mean for my two infant school aged DC. Just didn't see this one coming. Obviously trying to keep it all as normal as possible for now, but at some point will have to tell them something, but what???
Trying to feel more in control by ordering cancer cookbooks, what else can I or should I be doing to prepare myself and my family for what is coming?

So sorry to hear this. Very good friend has had the same this week. Just waiting for the biopsy appointment.It is really upsetting. One day at a time. Speak to someone if you can.Maybe McMillan. Best wishes.

Sorry to hear you are on this rollercoaster 😩
I had my clinic appointment a week and a half ago and my results appointment isn’t until 12th August which seems ridiculous.. I was told it’s definitely cancer and had several biopsies .

Everyone I’ve spoken to says the waiting is the worst , it throws you into some kind of limbo land .
Im trying to keep busy but I would say do not google at all as you’ll terrify yourself .
If you want accurate and informed advice the Breast Cancer Now site is very good .
Im not telling my dcs until I know my full diagnosis .
Until you know what type you are dealing with , try not to worry about what treatment you may or may not be having as you won’t know until you have that diagnosis .
big hugs .. it’s shit , but we will get through it xx

@Rockschooldropout I'm so sorry you are going through this too, and with such an awfully long wait! Yes, you are right of course, definitely staying away from Google and trying not to catastrophise. Definitely not saying anything to my kids or parents until I know more.

I've booked myself a pedicure. Might as well have nice feet 😂

Hi again. Same with friend. She had a pet scan and Consultant said it is presenting as cancer and needs a biopsy but appointment for 2 weeks time to get that done. Why 2 weeks. It is the waiting for her as well.

I'm so sorry you're in this position. Your head must be spinning. It is really tough with small kids. I'm not sure there is a right way, but in case it helps, what I did with mine was to tell the truth, but I made it as simple and as positive as I could. The BC Nurses gave me a book called, 'Mummy's Lump' - I'm not sure if they still use that, but I didn't like it as there were lots of sad pictures showing upset people all really worried about 'Mummy', etc. I decided to just use basic science and be honest but positive too. I had a mastectomy first so told the kids that the doctors had found some bad cells in my breast, but it was brilliant they had, as now they could take the bad cells out. After the op, I told them that I needed some strong drugs (chemo) to make sure the bad cells didn't grow back. I explained I'd feel tired and might be sick and would lose my hair, but it was just part of keeping the bad cells from growing back and wouldn't last for too long. Radiation was last for me - that's easier as you don't really need to tell them anything as you're just going to hospital each day for the treatment. People are lovely when you have cancer, but there's a lot of sympathetic head tilting and what you don't want is for your kids to be scared or imagining all sorts. A bit of basic science can help them feel in control. Mine were 6 & 4 and it worked for us. My six year old and I used to wink at one another every time someone did the sympathetic head tilt. 14 years on, I'm still here and all's good. Take it a step at a time. You can do this, I promise!

I think it depends on the trust and lab waiting times .

Definitely book a pedicure ! I’m going to dye my hair some mad colours and am booking some nice things for us to do as a family . It’s not quite how I planned to spend my birthday , it’s in three weeks so I may be starting treatment then or having surgery

I think that is some great advice @ArnieCh, my children are the same ages, so I appreciate it. I also can't stand head tilting, great idea to turn it into a joke instead of letting the rage build 😂.
@Rockschooldropout - I love the hair idea! I'm still processing this life changing diagnosis, but since it is life changing, I have already decided I am going to give far fewer f*cks about what everyone else thinks I should be doing.

This is a great attitude to take 👌🏻🙌🏻 I’m about a month ahead of you in terms of my diagnosis & am currently recovering from a single mastectomy & lymph node clearance because the cancer had spread. And do you know what, it wasn’t anywhere near as bad as my c-section 🤣 there is a LOT of waiting with cancer at the beginning (where you are) and I’m currently waiting for pathology results from my mastectomy which I’ll get this Wednesday which will define my treatment plan moving forward. Whatever happens with you on Wednesday I feel like mums just deal with anything life throws at us 💪🏻

They do still use this book & I’m so glad to read this because mine is hidden in the glove box of my car because it just reads really negative & I’m all about the positive vibes at the moment. My BC nurse had asked several times if I’ve read it to my LG yet! We have explained it the same as you but making sure to use the word Cancer as we didn’t want her to hear other ppl using the word & get scared of it

Urgh, I think I'm going to have to practice saying "I have cancer" out loud, because I agree @SparklingPinot , they need to have the word for what it is. This horrible disease that might take their mummy away.
Need to figure out a strategy for telling parents too.
And sleeping, I'm obviously not managing that very well!
I would love a sparkling pinot about now, but I'm pretty sure that won't make its way into the recommended cancer diet book 😫.

Please remember that many women survive breast cancer. My mother had a single mastectomy and that was all that was needed. That was ten years ago.

When my dad had bladder cancer ds was coming up to 5, I explained to him that Grandad had a naughty gremlin that was making his wee poorly & the doctors had to operate to catch the gremlin & knock his house down so he couldn't come back. I told him that Grandad may not be very well for a bit, he may be a bit sad & very sore afterwards & may need special medicine that would make him feel poorly for a bit but that it would make him better & that we needed to be very gentle with him & to try to cheer him up by looking after him. Ds drew him a picture every day, which I took to the hospital when I visited & he sent one of his cuddly toys to look after him, once he was home he was a bit shy for the first time he saw him but after the first 5 minutes he was fine chatting about what he had done at nursery & showing him the new kiddie electronic toy he had.

Have the wine OP (not right now obviously 😁). The waiting is horrible enough without denying yourself small treats.

As PP say, keep it factual with your DC. Mine was 4. He accepted it.

The Cancer Support thread on here was great for me 6 years ago.

Thank you @Lovingsummers , you are right of course, it is just too easy to get maudlin in the middle of the night. That certainly isn't how I will be talking about it in front of my children.
My DC are very fact based already @Nat6999 , their uncle is a Dr etc, I don't think this would work for then, but great to post for others with younger kids that this approach may help.
@MinnieMountain - of course there is a support thread, why didn't I think of that?? Looking for it now 🙂. Treat wise- I'm wolfing down the dark chocolate like you wouldn't believe. Currently it's the only thing bar yoghurt drinks I seem to be able to have an appetite for!

@LionMummyRoar I have found the MacMillan online breast cancer community boards much more helpful than the support threads on here. For me, knowledge was / is power & being prepared to understand what they are going to tell you on the day was huge for me. There are so many different types of breast cancer. Be prepared also that you may need more tests & more waiting depending on what type of cancer. Diagnosis + treatment plan is not linear and can take a while. be aware that on Wednesday they will likely give you a grade but not a stage - it’s not the same thing. Took me a while to realise that!

Thank you @SparklingPinot - I didn't realise that at all and I have just done some more research on breastcancernow- so that will help me. I would usually agree with you on the knowledge front, but I think I'm still in shock and a bit in denial so almost scared to know more because so far knowing more hasn't been good news 😬.
There is so much more to breast cancer than I realised!
I will check out the Macmillan site too.

Sorry to hear this but one thing I found really helpful in the limbo stage is that BC is so treatable, with so many people on mumsnet and wider world having been through it and recovered (I really started to notice quite how many when diagnosed).

I'm a little bit further along the process. Biopsy taken 18/06 & given no false hope, diagnosed 27/06. I had my lumpectomy op last Wednesday 31/07, day 4 recovery and doing fine (typing this anyway!), no sentinel node activity so didn't need to remove lymph nodes. I feel so much better than I did at the bit you're currently at - the horrible limbo waiting and waiting. (And I would let yourself have the occasional glass of sparkling Pinot - I had the occasional Merlot/Shiraz pre formal diagnosis, and most definitely since, sanctioned by breast cancer nurse!). It's so hard to wait, but you may well find you feel better on Wednesday than you do today xx

Sending big hugs. I was diagnosed beginning of June, had my first chemo this week, currently feeling like utter shit but a few tips:

DO NOT GOOGLE. Find out the facts then find what you need to know. Everyone’s cancer is different and while there are helpful comparisons, Google is not your friend right now.

It’s not like 15, 20, 25 years ago where the success rates were poor. A friend said if you’re gonna get one, get one that’s well researched and well funded! (Totally ridiculous I know)

MacMillan are amazing.

Scanxiety is a thing.

I told the DCs once we knew what the treatment would be. Telling primary aged children mummy has cancer but offering no solutions/treatment didn’t seem right. maybe tell a close friend or two/familiy right now but you need to be able to tell young children with a plan.

Sending all the love x

So true @PaperbackWrighter , it is treatable. I've been writing my feelings down, and as @Littlecaf suggests I had a good chat with my beasties yesterday, and I feel more calm. As one of my favourite books says, " can't go over it, can't go under it, can't go around it, got to go through it!". I paraphrase, but I am feeling closer to the stage of accepting I can't control the cancer, but it can be treated and I'm just going to have to get on with making decisions about what I can control to get through it best I can for my family. So roll on Wednesday and hopefully a treatment plan.

@LionMummyRoar My results day is a week today , I’m a mix of terrified and just wanting to know what the plan is .. and I don’t think it will be “head to the Winchester , have a nice cold pint and wait for all this to blow over ! “
Im keeping everything crossed for you for weds x
The thing I’ve learnt and been told is the waiting is worst

Love that @LionMummyRoar

“can't go over it, can't go under it, can't go around it, got to go through it!"

I’m remembering that one! (I know it’s from Bear Hunt!)

Nothing about this experience is good but there’s so much out there now to help you. You’ll get through this.

I can't believe they're still using that book! Yes, I think it's good to tell DC it's 'cancer'. I should have said, but we did that too. Good luck to all of you going through it. It's undeniably scary and treatment can be a real slog, but honestly it is doable xx

Hiya @LionMummyRoar. I was diagnosed in March 2017. All over and done with by November 2017 and would have been sooner but I kept having to have operations for margin clearance.

Things to tell you:
The waiting around is the worst bit.
People's reactions are the next worst as some hear 'cancer' and immediately think = death. This is NOT the case. To be honest, I far rather have had my cancer than some awful heart condition. At least it is in a bit that can be lopped off. People automatically think that you will lose your hair, you will be poorly, etc. yes, this does happen but not everyone will need chemo - I didn't. Radiotherapy was ok but does knacker you out. Lumpectomy was fine and the lymph node bit hurts more.
You will get a lot of 'my mother's best friend's daughter's sister had cancer and did xyz voodoo woo stuff and it went away'. Just ignore.
You don't need to tell the world. I drip fed who I told. Mainly to reduce the horror from people which then really makes you more scared than you need to be.
You will find out who your friends are. I had one work colleague, whom I considered a friend, treat me really badly. She was quite unpleasant towards me and I think she just couldn't cope with me having cancer and my 'it's an unwelcome little visitor that is being ejected' attitude. Some think you should be weeping and wail8ng ot being 'really brave'
The whole 'beating cancer' 'fighting a battle' being brave narrative will really get on your nerves. The person who 'beat my cancer' was the pathologist in a lab whom I never met and my surgeon.
If you have to have a mastectomy then there is a charity called knitted norks who do soft knitted prothesis. My sister got my one but I didn't need it, but it lurks as a reminder in the bottom of the wardrobe.

You will think that every ache, pain, funny feeling is the cancer spreading. It isn't.

Can really recommend Weleda stress relief spray, Bach rescue remedies in various forms just to bet you through the super wobbly moments which you will have and are allowed to have.
Don't google and be wary of comments on chat forums on bc sites. Often helpful but generally they can be scary.

They draw on your nork with arrows before the operation
You may need to have a scan with radioactive dye. It turns your pee into the most beautiful colour. Something to enjoy!!!
It will be ok. Really, it will. You can do this and will do so brilliantly.

Excellent advice from @Pippatpip

I was diagnosed about 5 weeks ago and have just had a second lumpectomy to get clearer margins. As much as I was anxious about the op, the process was well managed and when I went for the second one I knew I would be well looked after and shouldn’t be scared of the procedure. Im waiting on the latest pathology results and some genomic testing on the tissue to establish if I need chemo.

I am really hoping that in 6 months time at the most I’ll be through this.

I’m so sorry you’re dealing with this with young children @LionMummyRoar

Absolutely what @Pippatpip says about choosing who you tell. I’ve kept it close but still wanted to lump some people but I don’t have much patience right now. I’m managing my own feelings and don’t have time to manage anyone else’s.

This 👆🏻👆🏻👆🏻
constantly being told I’m “in denial” because I’m not weeping & wailing!! I really want to twat people who give me the whole “being brave” talk. Nothing about being brave it’s about fucking getting through it!!!