Please help. Overwhelming anxiety since diagnosis

[redglobox]

Hello kind ladies of Mumsnet

I am desperate for advice. I was diagnosed with breast cancer a few days ago and since then have been really struggling with feelings of anxiety, panic and fear. I feel sick, my mouth is dry, I'm losing my voice, I am shaking. I can't focus or even give any thought to anything apart from this. It is worst as the night sets in and I am finding it very hard to get to sleep. I have told my extended family (not my young children) and my husband is being brilliant but there's only so much he can say to talk me down. My mind is just racing all the time. It was already bad but has escalated since I googled something the breast care nurse said yesterday and found something that suggested I have a poorer outlook. I feel in a real crisis about it. I'm not due back at work until the 6th but can't even function in any way right now.

What can I do to control how I am feeling so that I can still function and not be in this constant state of terror? I am worried about how much worse this could get as my prognosis becomes clearer. I'm still waiting for some of the pathology results, don't have a stage yet, haven't started treatment.

My GP surgery is closed until Monday. I am trying to find counseling or therapy but there are so many coming up and I don't know how to find one that can help me with this particular issue. I couldn't get through to the breast care nurses yesterday and have emailed but I don't know if they will respond over the weekend.

I'm 44 with a young family.

I'm really sorry to hear that and understand how stressful it is. Please try to remember a cancer diagnosis is not a death sentence . I was diagnosed with leukemia in May 2022, and have been in remission since Dec 2022. The consultant who gave me my diagnosis waited for the news to sink in and then told me it could just be a black cloud over a period of my lifetime and that's what I tried to see it as. Xx

@redglobox I felt exactly the same as you when I got my diagnosis. Someone very kindly posted a link to a thread filled with enormous support, kindness and understanding, I’ve received so much help here:
https://www.mumsnet.com/talk/general_health/5219604-cancer-support-thread-96-its-nearly-christmas-get-the-sprouts-on?page=8&reply=140788796

It's completely natural to want to Google everything but it absolutely terrified me! Stick to MacMillan and other specialist sites. MacMillan are absolutely fabulous on the phone - they should be open today.

https://www.macmillan.org.uk/about-us/contact-us?gad_source=1&gbraid=0AAAAABsXval0P4O1E4xI88fFcG-GPQLFf&gclid=EAIaIQobChMI2oGFt43KigMVwaJQBh1yYC09EAAYASABEgJhR_D_BwE&gclsrc=aw.ds

If you can, try to stay busy, once you start your treatment you will hopefully feel a bit more in control. The waiting is the absolute worst.

OP this is the worst time as you don't have all your results in yet and don't have a treatment plan.

What about calling Breast Cancer Now? They will be absolutely expert in helping women in your situation.

https://breastcancernow.org/support-for-you/call-our-helpline/

I'd also give serious consideration to calling in sick at work, at the very least until you have your treatment plan.

I had BC earlier in the year and was in such turmoil after the initial diagnosis, it is just such a shock. I also have a history of anxiety which made everything worse. What helped me was oncology hypnotherapy and mindfulness. There are some scripts here for example which you can just download: https://www.hypnosisdownloads.com/search/g/cancer?filter=download&0.5994351535878784

If you are really struggling speak to the BC nurse as they can refer for counselling and other treatments. Remember that BC has a very good survival rate now and you will very probably have a very difficult few months and then things will start to get better.

I'm really sorry to hear that. I'm not surprised you're shocked and worried. My relative had a leukemia diagnosis a few months ago and as i always do i went into overdrive with info gathering, reading medical studies etc. I was convinced he would be lucky to survive a few months, as that is a real possibility

The treatment has been effective, he is in remission and doing amazingly. The doctors are pretty confident he will stay in remission.

You need to speak to your oncology team as soom as you can about your comcerns. In the meantime can you download the Headspace app? It's a month by month payment. There is loads of meditation style content on there to help you calm down. It will help with the physical symptoms of anxiety and slow the racing thoughts.

The one I find really effective is actually kids calm which is aimed at 9 to 12 year olds. I did it with my son and found it so helpful i started using it myself.

Do you have employee assistance programme with work? Ours has trained counsellors on the phones you can speak to immediately

I am 40 with young children and was diagnosed with lymphoma 6 months ago. Try not to read too much online, stick to the factual websites macmillan etc. Take it one day at a time, one treatment at a time. I'm now having radiotherapy after chemotherapy failed but I try not to think too far into the future. How old are your children? My children know I have cancer but not the ins and outs of everything. Focus on trying to create a network for you, your partner and children for support as this is invaluable.
Good luck with everything, feel free to message me to chat

I am so glad that my mum didn't know how to google things during her illness, it must be terrifying reading things and worst case scenarios etc. I will not tell you to stop googling but please take things with a pinch of salt op, a lot of statistics around cancer online are outdated and show poor prognosis etc.

My mum had stage 4 breast cancer so not curable but lived for 15 years after her diagnosis and lived very very well, with a life packed full of holidays, raising us, working her whole life till past couple of months etc.

Obviously you haven't been staged yet but I'm trying to give a bit of hope for if it is bad news and it's stage 4.

So sorry you're going through this op. Having young children I know you must be terrified but you're in that horrible stage of not knowing which is sometimes worse than when you know what you're dealing with. If your anxiety gets too much please do ask for medication from your gp to help get you through this period.

Thank you so, so much. I'm in tears. I don't have much support in real life and appreciate this so much. I will explore all of these suggestions and any more that arrive - I will keep reading and can reply. I'm trying to get out of the house today for a walk

Tiberius: They are 6, 9 and 11. I know I can't tell them at the moment because I can't put a brave face on it for them and don't want to traumatise them! They think I am sick at the moment, which I am I guess but not in a way they understand.

This is the worst bit. The uncertainty is terrifying. In many ways treatment can be easier mentally. Your GP can prescribe a short course of sleeping pills to get you through the worst. The knowledge that you only have to get to say 10pm before you get a peaceful sleep can be helpful. Good luck! Breast cancer is extremely survivable these days.

OP, I was diagnosed in Sept21 and felt the same. I'm a single mum and the thought of leaving my ds unprotected and alone was my nightmare.

But the breast care team were absolutely brilliant. The first thing they all said was don't Google - ever.

Then I met with my consultant surgeon who explained exactly what would happen, the plan. She was so professional, so knowledgable, so matter of fact, that she reassured me.

I had three tumours and needed a mastectomy. Then after testing, I was offered the option of chemo. They helped me make the decision. Then radio therapy. Again the consultant was great, a determined middle aged lady who had been through it herself and reassured me. It was all fast, efficient and unbelievably supportive.

They will get you through, they will hand hold you, and you can ask anything, call them whenever you need extra support.

I'm 3 years 4 months on, back to normal. My hair, my energy levels my libido have all returned to normal. I'm working full time. I run ParkRun most weeks. My confidence has come back. .

Take a deep breath and let them support you. Good luck x

Mine are 6 and 9. At first they knew I was poorly but didn't know it was cancer but then when we had a treatment plan we told them. I'd also suggest making sure to tell their school, ours have been great at offering them extra support and keeping an eye on them. Also on a practical level make a list of people who can pick up from school and make sure school are aware. We've had more than one appointment run late which meant we couldn't get back to school in time for pick up.

Hiya. I am 7 years clear from my unwelcome little visitor in 2017. BC has many different 'flavours' as well as gradings. I have invasive ductal which is commonest and easiest to deal with because it was hormone dependent. I had a lumpectomy and then radiotherapy. I didn't need chemo. Margin clearance was problematic so had three further ops after the first one because I had a very conscientious surgeon who didn't want to lop the whole boob off.

This is the worst bit because you are in limbo. But, worrying about it isn't going to change anything. You will be seen soon and once treatment gets underway then the whole thing is quite rapid. You just want the bloody thing gone at the moment but it is just sitting there and not going to grow or only infinitesimally between now and treatment. I've seen my ultrasound of mine - I thought it would be round but it was rectangular and quite small. The microscopes are dealing with decimals of mm as they are so good now. Your main clinician is the person you don't see - the pathologist. They are fab and thank you to all the unsung hero pathologists out there.
Do not google.
I can recommend Bach rescue remedy and stress relief sprays.
Once you know what you are dealing with then it will be better. Do distract yourself with activities. Work is a good distraction. Im a teacher so you can't think about much when in the throes of classwork.
You will feel every ache and pain and automatically think it has spread - it is unlikely.
The tv will be full of ghastly macmillan ads with losing hair, sad people, really ill people. That may well not be your reality - it wasn't mine. A friend of mine had some life changing heart condition stuff going on at the same time - my cancer was way, way easier to deal with than that.
We are conditioned to thinking that cancer is a death sentence, that it needs to be 'battled, fought, and survived'. That it doesn'tcare'. There is a constant personification of cancer. This is deeply pissoffing. It is a bundle of random cells doing things they shouldn't. The trouble it that other people's reactions go by what is presented in the media/charity sector. That is really difficult. I had a colleague who used to keep announcing every time she saw me that 'you look terribly well!' In complete surprise and mild disbelief because cancer = no hair, very poorly and unable to work. A truism for those going through chemo but it doesn't define one.
BC is extremely well funded. You stand a very high percentage of coming out in six months time fine and dandy.

Good luck.

Thanks so much for your replies Anita, Meadow and Tiberius. I am so glad that I posted. I'm feeling a bit better before I have even acted on any of the suggestions made by the lovely mumsnetters here. I only slept a few hours last night and woke up feeling so sick and shaky. I feel a bit calmer now.

Anita - I think sleeping tablets would help me so much. I was diagnosed on Christmas Eve and have started to feel such dread about each night as it approaches. If I knew I wasn't going to be lying there alone with my darkest thoughts for hours it would be such a relief.

Meadow, Gail, Stuck, Shining, Tiberius, Pippa - I feel so comforted to hear about your experiences. I am so scared that I won't be here for my family as my children grow up. I feel as though I've let my husband down. Our lives are already so stressful. I am sorry that you lost your Mum, Shining, but how wonderful that you had so many good years with her. It especially helps to hear this as at this point, without knowing more, my worst fears are around it being found to be stage 4.

Lemon - I will join the support thread and try to google less! I'm a person that researches everything to the nth degree so have spent the last few days on a rollercoaster of google induced emotions. I am going to put down my laptop in a minute and try to spend the day doing some of the nice things I had planned to do with my family over Christmas.

Anna - I will call Breast Cancer Now. I had only visited the forum so far and ended up scaring myself reading about fears of long term recurrence with lobular cancer. I found a really useful thread about MRIs and claustrophobia though which is something that had been worrying me.

Stuck, Flippity - Thanks so much for your hypnosis/mindfullness/meditation suggestions. I hadn't thought of this yet and I think that will help me so much. Before this, I could often use an audiobook to get myself to sleep but was trying to find something the other night and having lost all my hope for the future nothing felt right. I ended up listening to a children's podcast of stories about greek mythology.

Tiberius - I am thinking similarly to tell them something before I go in for surgery. I'm still not sure if I'll tell them it's cancer. I want to spare them the distress of thinking I might die soon. Although they are still all very matter of fact about death at the moment. Thanks too for the practical advice. We're already running into practical issues around not having much of a support network.

Pippa - I am hoping to share your stoic and practical outlook when I am through these particularly dark and scary days. I've been trying not to drift into thinking about this as a battle to the death with something! I am usually a very straight thinking logically person but as I'm looking at the stats on this I can't stop the thoughts telling me that I'll be one of the unlucky ones - and I can't find the stats that I want to see which would tell me that I can still have the long life I expected to have until 11:30 on Christmas Eve.

I was 42 when I was diagnosed in 2018 and I agree with other posters this is the worst bit as you don't have a plan of action.
I'm not sure whereabouts you are both Breast Cancer Haven in Leeds is immense they offer all sorts of therapies to help you through alongside your NHS treatments.
I also had acupuncture which always left me feeling much calmer.
My kids were 4 and 7 and we did tell them I had cancer, but only after we knew what my treatment plan was. I had chemo and then a mastectomy without reconstruction.
Also look up Liz O'Riordan she's a surgeon and also had breast cancer herself. Very informative.

The waiting to know what's next is absolutely the worst part; it's brutal. Once you have a treatment plan you'll feel far more in control, but do contact the resources you've been given - your reaction is pretty normal. It's one foot in front of the other for now, and stay away from Google!
I wish you all the best x

Loads of good advice here, especially “don’t google”! I was diagnosed in the summer, and agree the limbo period is the worst as your brain fills in all the gaps with the worst possible outcomes. I’d highly recommend Penny Brohn (pennybrohn.org.uk/about-us/) as an organisation as well, they run loads of workshops and courses online for managing anxiety and worries about treatment. All their staff have worked in oncology and/or been through cancer treatment themselves so their advice is very complementary to NHS treatment pathways.

I didn’t tell my DD, who was 10 at the time, until after my treatment had started and having cancer was in the past tense. I didn’t want her to worry. I needed her to see that I was OK.

Sleeping pills helped me loads in the horrible limbo period. Everything seems worse in the evenings and nights and knowing I could escape that was such a relief. I didn’t need them once I started treatment. There is lots of support around breast cancer. MacMillan, Future Dreams, Penny Brohn, Maggie’s Centres are all great. Definitely lean on your breast cancer nurse. They are used to talking down panicking women!

Firstly, what lousy timing! I’m so sorry you’ve had to deal with crappy timing along with crappy news.

there is some really excellent advice on this thread.

However, some people need a little more help to get through the worse bits so don’t be afraid to ask your GP for help when they open, particularly with sleeping. These drugs exist for a reason and can be extremely useful if managed correctly. Don’t beat yourself up if mindfulness doesn’t do the trick for you.

In the mean time, I’d recommend The Goldfinch. I find I can’t listen to chick lit when I’m in a bad way. It just seems too bright and ridiculously frivolous and that irritates me more than it distracts me. So the goldfinch is a good 32 hours of serious audiobook and I find the readers voice soothing. Plus if you don’t drift off, it’s a good read/listen.

I also find putting on movies with the audio description running a good move, particularly if I’ve seen the movie before. I lie there with my eyes closed using the description to jog my memory of what the film looked like.

Hang in there.

Hi op I would call the Samaritans

Agree with all that's been said on this thread.
I was diagnosed in August and nothing, and I mean NOTHING, is worse than it being confirmed as cancer.

You may not believe this at the moment, but you will get into a rhythm and you will cope far far better than you ever imagined possible.

It becomes part of your life.
You spend twenty minutes at the hospital finding a car parking space.
You'll get into your consultants office and immediately start taking your clothes off to be gently told you can keep them on, you'll be told loads of stuff that you finally understand, and you'll finally feel in control.

It's the worst rollercoaster you can imagine but you will find humour and humility. You'll also meet people on your journey that will inspire and amaze you.

Before long you will be that person who is that inspiration to others.

Most of all you'll learn that you're a hell of a lot stronger than you could ever have imagined 🌷

You’re definitely in the worst stage right now. It becomes easier once you know your treatment plan and you’re in the system. Then funnily it can be hard once your treatment is over, and you’re left to your own devices. I think if you can get into good habits now with managing your (completely normal) fears, it will help long term.

I’m ten years out. Didn’t tell my kids at the time, but they were smaller than yours. I’d say wait and see what your treatment is before you decide how much they need to know. I ended up with double mastectomy and implant reconstruction. When they were little, I just said my nipples has to be removed because they were sore. Gradually told them more as they got older.

I found the support on here very beneficial at the time. I didn’t post much, but reading threads by the Tamoxigang was very reassuring and calming. Honestly the bravery of some women is inspiring . Think it’s now a general cancer support thread.

hoping you get some clarity asap and that it’s good news.