Feeling lost and scared.

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This is so hard to type and share but I’m hoping sharing will provide some comfort. The last 72 hours have been a whirlwind, how life can change in that time is so scary and I am just in shock but I am sad, upset, feel somewhat guilty for my mum and I don’t know what to do.

Here goes… so my mum who is very cautious of checking her breast, found a lump/ felt some unusual last week. She had a mammogram followed by a ultrasound and then biopsy on Tuesday, initially they suspected benign fatty tissue, this sadly gave us incline of hole which sadly was not the case.

Confirmed today over the phone as we just couldn’t be in limbo and wait till the hospital follow up appointment, I felt useless and like it was a bad dream I needed to wake up from. I still feel like this - is this normal? my mum’s GP had revealed this to us this morning so we heard the word invasive and the panic and emotion was all too much. Anyway, a very lovely nurse confirmed, invasive ductal carcinoma - she called us and said it was very small 1.5cm and from what they seen from the ultra sound the lymph nodes hadn’t been affected. She did say they had to wait until the receptors were seen and reviewers by the team at the hospital which takes place weekly, she was very positive and said it was treatable but no indication of treatment and that it was early.

I’m being strong for my mum and dad and family but I feel lost, like this isn’t real, I’m scared and obsessed with googling. The C word has always been our fear and here we are facing it. I need hope as I feel useless. I’m sure everyone has their own personal story I just don’t know what to do, mum is being so strong and positive and keeps saying she found it early so I’m hoping this is true. I cannot fathom the idea of work right now and my job is demanding but my family come first, life is changing and I’m so scared for her of what’s to come.

I’m hoping for some comfort in any similar experiences just so I can use that to be strong for my family through this hard time. Mum is being great I think still in shock, watching tv, shopping as normal but it just keeps hitting me.

Thank you

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Hi Confuseddaughter,

It is always a shock getting a bc diagnosis, so what you’re feeling is quite normal. 

However, it does sound very positive that it is small & there’s no evidence of node involvement. There are many of us here with similar diagnoses who are through treatment & back to life as normal & there’s no reason why this should not be the case with your mum.

Please be reassured that treatment is excellent now, with the best outcomes out there, fortunately, bc does tend to get picked up earlier & most of us go onto make a full recovery. 

The next few weeks will be a stressful, simply because there maybe further investigations to finalise the diagnosis & treatment plan & as ever, it is the uncertainty of waiting for results that’s the worst bit, as inevitably the mind does go into overdrive. 

You sound like you’re a fab daughter & take a deep breath, you will all get through it. 

Do come & chat whenever you need & do use the main bcc site here for information, as general googling only tends to make any anxiety worse for no good reason.  

It is best to Step Away From Google, as it’s too general, not specific to your mum & in the early days of diagnosis, we generally don’t know enough to sift through it productively. 

It will be fine ?

ann x

 

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Hi Confuseddaughter, I’m so sorry to hear about your mum. I think hearing the ‘C’ word immediately instils fear into you, I know it did when I was diagnosed in Feb last year aged 49. I initially fell apart as I was so frightened and thought that this was the beginning of the end! But I hope I can reassure you a little. I also had invasive ductal carcinoma, no lymph node involvement, 2cm, hormone receptive. I had a lumpectomy, radiotherapy and I take Tamoxifen. And 20 months after being diagnosed I feel great. In fact I’ve felt great for the last few months and all that happened last year is just a memory. So please don’t despair. Breast cancer is one of the most treatable cancers with very high success rates and I am sure that your mum will also be one of the success stories. One piece of advice - don’t google as a lot of the information you’ll find will be out of date. Perhaps you could go to the appointments with your mum, she may not remember some of whats said (there’s lots of information going to be given) and her care team may be able to reassure you both. One thing someone said to me was that having cancer can be very lonely and that was so true as nobody really understands how you are feeling unless they are going through the same thing at the same time.  I hope you your mum gets her treatment plan in place soon as once treatment starts you’ll be surprised at how much more in control you will all feel.  I hope all goes well. Michelle xx

 

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Thank you ladies for your replies and your words of wisdom and support.

I am finding it so hard to accept and it just doesn’t feel real, I hide away and cry to myself or to my sister on the phone and she too cannot understand what is going on. We are afraid for my mum, I think it’s like you said being in limbo. My mum and dad are acting normal, but I think they haven’t quite acknowledge it. I sleep and wake up thinking it’s all been a dream and then it’s like it’s hits you again. We have an appointment Tuesday that we got moved forward but the nurse did say she wasn’t sure how much information we’d get ag the meeting as they were still waiting on the receptors information and the main meeting is on a Wednesday but I’m hoping it will provide at least some comfort. I think my fear lies with the worst case scenario, what if it’s spread, growing fast - in trying to be strong for mum, but hard to see life continue as normal knowing this has now affected us, as t rides so many people, it’s just coming to terms and not knowing the facts of how bad it is.

Being able to talk in this group and read the other stories is really giving me hope but I’m just overcome with so much fear, waiting around, thinking why I didn’t we take out private healthcare
For my Parents, kicking ourselves. i just need to know specifics, thinking negatively is so hard not especially at this time of year. I can bear to see people talk about xmas, etc because Iof this.

Again I’m sorry ladies I just need to purge to someone. Strength to you all and thank you xxx

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Hi confuseddaughgter,

I was diagnosed in 2013 with the same as your mum, only my idc was a bit bigger at 2.8cm the sentinel node was involved but no other node involvement, I also had over 10cm dcis.

I had mx, chemo, no rads followed by recon surgery.

I have no evidence of disease since mx, my hair has grown back, I’m back at work and fitter than before I was diagnosed as I figured id been given a second chance so I’m a bit of a gym bunny these days ?

I agree with the other replies here.

The diagnosis stage & waiting for a treatment plan is awful, things start to improve once you know what’s what.

From what you’ve told us, it’s been caught early so try not to worry! Easier said than done, I know.

Absolutely STAY AWAY FROM DR. GOOGLE the info at best is out of date and all you’ll achieve is scaring the ?Of yourself.
Best of luck x

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Thank you all, you are inspirational and I am using your words and experience to stay positive.

We are there for my mum and will attend every appointment.

It’s just the moments we continue as normal and we are positive and then the reality keeps hitting - in sure you are right in saying this is the hardest stage, the not knowing. You hear so much of it in the media who have not been so lucky and then I hear your stories and commend your bravery and strength and thank you for sharing with me as it helps.

I really don’t want to imagine the thought of spreading, I’m terrible of thinking of the worst case scenario but this is my mum, it will be ok and has to be ok. I just am trying to not get upset and be strong for my mum. I have to stop asking why and accept it will be ok, and hope and pray it’s confined, still small and can be treated.

You are all inspirations and amazing people so thank you for being their and your input. I want to drive this positivity to my amazing mum, stop getting upset and get this journey underway and try and see the light.

Xxxxxx

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Thank you ladies. Talking to other people is helping and I’m using that to put on a strong face for my mum and dad and it’s helping, we have our moments here and then, but I think of all of you. Like anything you just want it started, every day is a day passing that scares me.

I’m not being selfish anymore as I have to put mum first, though me trying to ram fruit/veg smoothies down her isn’t going down too well. You are all testament to how we will get through this and your stories are lovely to hear. I just want these fears of to go and know. The nurse we spoke to yesterday was lovely, she will be their Tuesday too, but then mind goes into overdrive thinking was she just saying what we wanted to hear but she couldn’t have and may have been reading the information from the US and biopsy?! Sorry… I’m a known worrier and mind in overdrive. Anyway, the only way is to carry on and deal with this and keep telling myself that sadly as life goes on, and these things happen.

It has to be ok

Xxxx

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Hi everyone. Hope you all had a nice weekend.

My sister and nieces came down at the weekend so we all spent time together, was hard but we are trying out best to be strong.

Mum and dad went out for dinner yesterday, and they went to the local pub as normal every Sunday (mum doesn’t drink or smoke but loves a dance). I suppose this is what needs to be done, enjoy life as normally as we can. Just one day feels so long not knowing.

Me and my sister have broken down several times, still in shock and can’t believe it. We have an appointment with the hospital tomorrow that we got brought forward but not sure if we are going to know much more yet, nurse said receptors information may be back but they usually have their meetings on Wednesday but will at the most provide some comfort. Like you’ve all said, not knowing the facts is hard, thinking the worst. My mum has had a cough for a while too, had x rays etc, and all was clear but mind goes into overdrive thinking of everything, the fear of whether this nastiness is attacking anywhere else. That’s when we break down and it’s seems so unreal.

mums out getting her nails done as normal, keeping busy, ladies does the fear and tears ever stop? I’m back at work trying to keep busy and act as normal for her and call her normally and ask the same questions I do everyday to her! Just scared and feeling down and guilty if I laugh at something a colleague says. Have to get the train instead of drive as focus isn’t great and the m25 isn’t the place for breakdowns, any form! Women at work I’m with today had a meeting and coffee with her this morning, she is 2 years since being diagnosed. .Fighting fit and ok, and she had a 8cm quote size of a pear lump. I just hope tomorrow goes ok, need scans to ensure it hasn’t affect anywhere else, not sure how we will handle that. Have to be positive right, please. My mum done great to find it and get it checked out

Sorry to purge again, their is something comforting about this forum and being able to read all the different stories and find comfort in your strength and words of advice.

Have a nice day all xxxxx

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Hi CD,
Yes, the tears do stop & the anxiety does melt away once you all know what you’re dealing with.
It’s the time between being diagnosed & the treatment plan being finalised which is the hardest, but you will all get there.
You’re doing the right thing by carrying on as normal & as Rosie says, just take it a stage at a time & try not to think beyond the next appointment, as when anxious the mind goes into overdrive with 2+2 making 5 in trying to fill in the gaps.
This will move on.
ann x

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Hi - mine was invasive ductal 1.7cm and they also said on scan my lymph nodes looked fine (and they were) - i’m a year on now and back living life as before - keep positive xx

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Hello everyone. Hope you ladies are all having a lovely weeeknd.

Not much update since my last post sadly, mum my sister and I went to the hospital Tuesday (few days after getting it out the doctor the result but not the specifics) anyway we went the hospital Tuesday but the consultant said results of the biopsy weren’t back yet and he couldn’t tell us much more than we knew. My sister and I still kept him chatting for 20 mins and he could see we were emotional but again he couldn’t say much other than it will be ok (hard for doctors to do so really) and that initial ultrasound showed 1.5cm lump and didnt see any abnormality with lymph nodes but I’m still scared about all these other technical terms, margins, sentinmental nodes, he was nice.

Anyway we have just got back from a lovely weekend in the Cotswolds with my sister, bro in law and three nieces - lovely walks, fresh air, mum still eating lots and loves a cake or two! We all laughed so much and it hits me and I get sad - anxious, my sister and I cried so much over the last week, that we feel out of tears and want to remain normal, and this weekend we did - I just get scared of what’s to come Tuesday with the results, long way left, and is it wrong for us to laugh with one another, plan ahead win xmas And act normal? It’s almost surreal ladies? I don’t think my dad understands what has happened as he seems to think it will be straightforward - mum the same and we haven’t said otherwise but I feel sad for him and mum as I don’t want this to come as a shock. I think they have a very deal with it as it comes attitude, we’ve had such an amazing weekend and I feel is it wrong for us to be happy and get excited and plan to go back to the country side soon for another break? Knowing this horrible poison is lurking within my amazing mum. Londoners you see (well mum and dad are Irish). Just hope and pray all ok Tuesday - positive thinking

Take care ladies hope you are ok and getting through your journeys with strength, support and positivity just wanted to come and release xxxxxxx

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Please don’t feel bad for laughing and getting on with life. I have tried to surround myself with people who do just that and treat me as normally as possible. We have quite black humour in our family and I suspect that my eldest daughter feels much the same way about our attitude to all this as you do. It keeps me sane to just get on with life when I can. Having now had 2 rounds of chemo there are bad days but they pass and each day is a day closer to the other side of treatment which is a good thing. Wishing you and your family the best over the coming months, I too am looking forward to Christmas when my three grown up children will be here. My 4th chemo was due on 27th December but it will now be a week later, when I raised delaying it, the oncologist said that she thought it would make sense because the NHS comes under immense pressure over the festive period and so it means that hopefully I will get a couple of normalish weeks ?

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Thanks ladies for your lovely words and encouragement and also incite into your own journeys and family.

It’s just scary planning esp not knowing what’s to face us, it seems not real, all sitting around tonight watching the X factor like normal, which is great but inside me I feel sad and scared - wary of results and the scans and further tests my mum will have to undergo. She’s such a trooper, just scared about how life will change for mum and dad and their routine and be impacted obviously we are here always to support through just coming to terms j think and fear being the main one. But life is full of challenges, it’s those moments you forget and then it’s hits again. Hopefully Tuesday we can get the biopsy results and get on the road to sort it xxxx

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Thank you so much for this post feisty flora. It’s so encouraging to people like me who are only 2 cycles into chemotherapy and the whole thing seems so horrible. I’ve really worried about my long term quality of life which sounds mad I feel like I should just be glad that I will have one! I’m used to having loads of energy and being busy so it’s good to know that I will hopefully get that back ?

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So reality sunk in even more today and I feel like I’ve lost a part of me and I’m trying to be remain positive ladies but it’s so hard. My mum is a trooper and being so strong but my sister and I are lost - I think I feel it too because I live at home still and I’m scared of change my mum will undergo to routine. I know a small price to pay in the long run.

Anyway so big breath, so biopsy results today, though we new it was bad news, we prayed and prayed for the best outcome - if their is one, not sure their is ever is, but I’d had hoped and prayed to the gods above. So mum’s lump was small 1.5cm, they said HER2-positive so treatment either lumpectomy and chemo and rads or chemo first, but their is a psychological need to want to take it out so we are opting for that on the 15th November - pre op meeting on the 10th - day operation then they’ll test the nodes as per process, ultrasound showed axillae clear but obviously you never know and cells are micro :(… the fear and bad news is never at an end is it. Hospital were lovely, the consultant (doing the op) specialist nurse very warmibg and then the oncology lady came in at the end just for an overview. On the chemo. They said they don’t do stages anymore?? But is grade 3. That hit me like a nail in the heart - three grades in the book and it’s that one. Why oh why.

They tell you it be fine and mum will be fine, and said this time next year be fine, and that they see women everyday with this walking out of here and could start chemo in December after the op depending on results and checks to heart etc and that will last 4 1/2 - 6 months and then something about injections? In the leg for a year? All was hard to take in. That moment it becomes the reality that this is happening to your mum.

What do we do? I didn’t think I could cry any more but here we are again,l, I’m breaking down and I can tell mum who hasn’t got upset yet, is fine but I want to be strong for her how when I’m scared for her and scared ? I read up this is aggressive, protein based, what if it’s spread? What if this poison is attacking my poor mum.

This feels like a nightmare and one I haven’t woken up from. My mum is the person going through this so we need to be strong for her, but shock and fear are overcoming me. My job is quite extensive luckily I travel around but also work from home so I can be at the hosp whenever, just not sure how I go on when this is happening to my mum at home. But everyone has a story I know.

All at home now, just told dad, he still doesn’t quite get it, my heart stops for him too, they are a team and I’m scared. They are both matter of fact and still always focusing on us and the grandkids, why is this happening.

I don’t know what to do anymore. I can’t make it right and just what to curl up.

It’s not the treatment or the op, as again small price to pay, it’s what if it’s worst growing, why the HER2-positive - how common is this one? Does it worsen things? Am I jinxing it? I just don’t know. I don’t want 'to speak to friends as they are planing socials etc, and I can’t do that under these circumstances. Mum and dad were due to go to Ireland on 30th dec but they said she might have to cancel - gutted for them, but not the end of the world, hosp said let’s wait and see but then everything is going through my mind, is that because during chemo they say not to go away? Do they know something we don’t?

We still have the remainder tests after the op and poison removed.

This is the only platform I can share and vent and speak to women who are going through this and use that to be strong for my mum.

Hope you are all ok

Xxxxxx

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Hi CD,
Well, you can certainly vent here.
Honestly, there are many women here who have been through this & there’s no reason why your mum won’t recover well, so do focus on what the oncologist said. They are dealing with this day in & out.
Just breathe…& take it a stage at a time & try not to overthink the ‘what ifs,’ or try to read things or second guess into what’s been said. the team will be straight with your mum. Your mum now has a treatment plan to get it dealt with.
There are many women here who’ve been through similar & I’m sure the ladies will be along soon to help you with this.
ann x

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Just to add, being her+ means there is a very effective targeted treatment for your mum, so that’s good. x

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Thanks Ann

I just had hoped and prayed with it being small for my mum it may have been easier but this type of thing is never easy even more so for those going through it.

Been readin up on her+2, it’s the terminology that goes with it, aggressive etc just alarms me,- so I think in between now mums op on the 15th is his lump growing and attacking her body, I just don’t know. Have other women had the same?

The doc gave two options - lumpsectory and then chemo or chemo and then lumpsectory - we chose removal then chemo as idea of just getting it out in 15 days and then dealing with the next hurdle, now my sister and I are lost deciding if this was the best decision should we start chemo first, doc said as Lump small 1.5cm start with removal but I read different things - mum doesn’t understand really the terms and processes so that’s why we try to get the knowdlege. Any one got any ideas? Just scared to make the wrot decision? If on the 15th? Not sure chemo would even be started by then with the pre tests etc.

Away with work today and everything is just so hard, I keep thinking of mum out and about and shopping and feel sad for her if anything her meeting other women and seein then yday at the hospital helped and helped me and my sister, it’s just all new and we are thinking the worst.

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Hi CD,
Her 2 + is fairly common & there is a highly effective treatment plan for it. So there’s no reason why your mum should not do very well. It still has been caught at an early stage.
Try not to worry about the treatment options, whatever is decided will be fine. If there was one approach that the oncologist felt was better, they would have recommended it. I think for most of us, we all feel better having the little sod removed first if both options are available, so that’s quite usual.
Nothing drastic is going to change between now & surgery, your mum is in good hands & will soon be on the way to getting it dealt with.
Honestly, there is no reason to think the worst.
do take care
ann x

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Hi CD…i am 50 and0my cancer is grade 2, her2+ and ER+. I am having chemotherapy (2 out of 7 done!). From treatment 4 i am also having herceptin and permuzetab - the targetted therspy for her 2. A month after treatment is finished i will have a masectomy ( cant have lumpectomy or rads as i have had them previously). I will continue with herceptin injections every 3 weeks for a year. I will then take letrozole for however many years they want to.

The reason i am having neo adjuvant (before op) treatment is because my consuktant said that 3 lots of research was done and the best results were with treatment given this way. It is all scary though but i trust them wholeheartedly.

Stay strong xx