73.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Not coping too well

45 REPLIES 45
Lane
Member

Re: Not coping too well

Hi lineeze, I'm sorry you feel so down right now , could your gp not try and chase things up for you the waiting is terrible sometimes a nice hot bath eases the pain and maybe try ibuprofen , thinking of you xx
lilneenz
Member

Re: Not coping too well

Thank you I will try Haven xx
lilneenz
Member

Re: Not coping too well

Yeah maybe but they do seem like an afterthought - I've been asking about my back every week and she's dismissed it - even only just on Tuesday - but then I got an unexpected call yesterday.... I only thought they did those scans if nodes were positive, so worried they thonknmy back ache is a sign of spread x
Patriciamay
Member

Re: Not coping too well

P.s. Walk sounded lovely 🌾🌾 🏃🏼‍♀️
Patriciamay
Member

Re: Not coping too well

Hi do you think they are wanting you to have these scans before the 11th?

 

i just re-looked at the haven website, I think they might offer telephone counselling, so if you feel up to it might be another option.  Xxx

lilneenz
Member

Re: Not coping too well

I'm in Kent my lovely so it's a bit far for me to travel but thank you for the advice it's really appreciated - trying to hang on in and be positive - went for a lovely walk today - I just want to start treatment and then I can start fighting this cretin - right now it's just limbo land xxx
Patriciamay
Member

Re: Not coping too well

Hi illneez, oh I do feel for you.  In terms of counselling have you tried "haven". I'm not sure where they are in the country, I know they are in Coventry and London and other places, but I understand they are excellent.  If you can get there.  I friend of mine got immediate free counselling, complementary therapies etc.  Hope they can help. Xxxx

Anniej
Community Champion

Re: Not coping too well

Hi Lilneenz, I've just read your posts. It is obviously a worrying time for you, and your mind does strange things. I've never had so many aches and pains as in the run up to my surgery! I guess that the scan will be a way of clearing up things, and of course , never lose sight that it could very well show absolutely nothing.

This forum is a great place to let off steam, and you can phone the help line as often as you need to. My time was always the middle of the night 😢

Sending best wishes and a big virtual hug. X

lilneenz
Member

Re: Not coping too well

Thank you ann
Yes it is really dragging on / so worrying - I have called helpline last week - thank you x
ann-m
Community Champion

Re: Not coping too well

Hi Lilneenz,
So sorry to hear how you're feeling now, it's certainly seems to be dragging for you& the uncertainty is hellish. Although it piles on the anxiety, at least they are being thorough in ordering the ct & bone scan.
If you haven't already, it might be an idea to ring the helpline above, at least you will be able to talk things through
sending big hugs
ann x
lilneenz
Member

Re: Not coping too well

Hi
I'm really going through the mill and don't know where to turn now, I just feel as if I've been left waiting for this oncology appt April 11th - knowing i have either triple neg or her2 is so frightening and after weeks of being told my backache has nothing to do with anything as it's "early" and the lymph nodes are clear (even though I have Lvi) got a phone call yesterday afternoon from the bcn asking if I would have a ct and bone scan as consultant concerned about my ongoing backache !!! I am so so scared / I've tried to contact my local hospital counsellor and their waiting list doesn't open until July / I've tried calling the oncologists for advice - I just feel there's no one left to turn to and feel so frightened for the future. I'm terrified it's spread / I can't see any positives to grab onto 😞
Lane
Member

Re: Not coping too well

Hi lilneenz, you said it you will be one of the survivors stay positive , easier said than done I know but you can do it we have more strength than we realise , when I got my results I was devestated it once I started treatment I just thought to myself I could either fight like a b...h or worry my self sick 😷 and I choose to fight and I've came though it and you will find your inner strength to , good luck with your plan and I'm sure your backache will just be muscular Like your doctor has said thinking of you all who are still having treatment or waiting to start ❤️❤️
Patriciamay
Member

Re: Not coping too well

Hi illneenz

 

i do so empathise with you.  I said that very comment to my Husband, every time I come here I just pick up bad news.  I feel like this is all being drip fed.  You are nearly there now, the downside of understanding BC so well now is all the testing so that the medical teams can get the treatment package spot on.  Thinking positive thoughts for you. Xxx

 

 

lilneenz
Member

Re: Not coping too well

Thank you ladies
I've just been on the phone to my mum for an hour talking things through. it's just one ad a shock as I was really expecting to be hormone receptive due to all my ivf. Just goes to show, you just never know. Now looking at being either her2 or triple neg. Just a month ago I was facing having DCIS. How things can change so quickly. I feel like I've been drip fed information and results and every visit to the hospital has brought more c**p news. But I'm getting through it and I will beat it !!! I'm going to be one of the survivors too xxxx
ladybowler
Community Champion

Re: Not coping too well

lilneez

 

What ann say is so true, this really is the wrorst time, when you get your treatment plan it will help as it wil give youreassurance as to what is going to happen and when, treatment for bc is very much more advanced than it was and with earlier detection the results are much better. 

 

You will get there and we will be beside you all the way xxx

ann-m
Community Champion

Re: Not coping too well

Hi Lilneenz,

From what I've seen, treatment for any type of bc is very effective now. Being hormone -ve is not necessarily any worse than being hormone positive. 

Waiting for results is always the worst, it does feel better when the diagnosis & treatment plan is confirmed. 

ann x

 

lilneenz
Member

Re: Not coping too well

Does this get any worse, someone give me a break. Just got results in both oestrogen and progesterone negative !! Still awaiting her2 status. So scared now please someone give me some reassurance x
lilneenz
Member

Re: Not coping too well

Hi ladies
Feeling a bit better today ! I think the whole day has passed without tears and fears. Still have this pigging backache though. Going to try get to GP tomorrow -,praying it's not connected xxx
DPD
Member

Re: Not coping too well

Totally relate to the early hours and the mind wandering all over the place. I was diagnosed 3weeks ago Grade 3 DCIS and the mind contours up all sorts. Keeping busy and it does sound corny but it is about a day st a time. You will get through this,it may be a crappy time but will come out the other side!
lizred
Member

Re: Not coping too well


@lilneenz wrote:
I think if I didn't have this backache constantly there to remind me, I would be able to pull my positivity pants up high and march into battle, but it's hard, especially when you read other stories.

"Pull my positivity pants up high", that's the best thing I've read in ages and I'm going to adopt it as my motto from now on. I wish I had read it before I went for a colonoscopy yesterday (my genetic condition involves my intestines as well as breast cancer) - you get to wear 'dignity pants' (enormous blue shorts with a flap at the back, no dignity involved really) and I so wish I had called them positivity pants instead 🙂 🙂

thanks Lilneenz for really making me smile this morning and hope you're able to find at least some sort of metaphorically supportive undergarment today xx

lilneenz
Member

Re: Not coping too well

Hi ladybowler and thank you for replying. I did get go to my gp and she thought it was muscular. I've taken some paracetamol and it eases a little. I'm going to try and go for a walk a bit later.
As for the lymphovascular invasion, I've read quite a bit now and there's contrasting info, but quite a lot of the women on here have it and their oncologists do not seem concerned by it as the chemo mops any cells up that may have escaped into the bloodstream. I guess I have to take some positivity that four of my nodes were clear. I think if I didn't have this backache constantly there to remind me, I would be able to pull my positivity pants up high and march into battle, but it's hard, especially when you read other stories.
My consultant stands by her word that it's been caught early but I'm unsure how she knows. I've got a few little tumors rather than one. Everything seems to get more complicated as time goes on.
Im so grateful for this sight as although my husband is here with me, I can't talk to him about any of it. I don't think he knows what to say to me.
Have a good day ladies x
ladybowler
Community Champion

Re: Not coping too well

lilneez

 

At this point in our journey the early hours are the worst, the mind goes into overdrive and every ache and pain we fear means that the cancer has spread.That is a natural reaction to the diagnosis we have had

 

IRubycat's advise is very good, perhaps give the helpline a call because they have experts on there who may be able to provide you will some more reassurance with regard to the lympho vascular and there is always someone there 24/7.

 

I know when I was waiting on days I held my back so tight that it ached.  When you take paracetamol or the like does it go away.  Can you perhaps make an appointment to properly get the doc to check your back out

 

I hope today will be better for you, try and do something nive to take your mind off it.

 

Sending you a hug

 

Helena xx

 

lilneenz
Member

Re: Not coping too well

Up early and worrying again / had a good day yesterday but still have this nagging lower back ache which is plunging me into paranoia. Doctotr took a quick look Friday and prodded here and there and said the muscles are tight and it's prob muscular but didnt do a proper examination. Consutant still didn't think it was connected. I'm thinking the worst ..... eap with the lymphovascular invasion - just want this all to go away. Not feeling supported at home either 😞
rubycat
Member

Re: Not coping too well

Hello Lilneez, LadyB is always right!!  This is an awful time for you, as we all understand, and it makes your mind go into meltdown.  Sometimes I wonder whether the BCNs actually take on board just how panicky we are. I know they are dealing with it all the time, and mostly do their best to calm us down - but sometimes it doesn't work!  I am now nearly 2 years on from you, and can say that somehow you will get through it.  I can just say about the lympho-vascular and hope it can help.  I had this too, and didn't go on to have chemo as the SLN was clear.  My surgeon explained that many people do have this, but it is really insignificant as it can just mean one cancer cell is just outside the tumour  and is in the blood stream, but has gone nowhere else, and it has all been cut out. She even said a cell could have got onto the knife! The main thing is to have the sentinel lymph node clear.  I know it completely freaked me out when I first heard those words, then when she explained I felt better.  Then after a few months I saw the details again, and had another freak out.  Don't worry too much about the length of time things take, as the MDT will be looking at your pathology and bearing all this in mind to get everything done as soon as possible.  Always phone your BCN or the Helpline here for more precise info than I have given, but we are all here to help as much as we can. Cat Happyxxx

ladybowler
Community Champion

Re: Not coping too well

lilneez

 

Firstly let me, I hope, reassure you about the wait for results, I actually waited 5 weeks for mine post surgery.  My bcn said that they would not call me back until that had all the results in so that they had the complete picture of what we were dealing with rather than having to get a bit of info at a time.

 

With regard to teh multi focal part and lympho vascular invasion, I honestly do not know anything about that, but I am sure one of the other ladies on here will know and be able to.

 

Perhaps when they ring you today, presumably it will be the bcn who will call, why dont you ask if you can come in and have her go through what they know so far and what those results mean.  They will not make any decisions about your treatment plan until all the results are in so that they can tailor it to your exact needs.

 

I know this is a really difficult time, I remember getting my Onc apt through before I had even had my results and I went into freefall dreading the worst.  I phoned my bcn and told her I had had my Onc apt but had not had my results, she told me not to worry as they had just been ultra efficient in getting their apt out before I had been given my result apt.  The trouble is that our anxiety levels at this time are so high, what might seem "run of the mill" timings to them is an eternity to the person going through it.

 

From the date I had my op to the date I started radiotherapy was 10 weeks.

 

We all get you on here and totally understand exacly what you are going through, sending you a hug

 

Helena xx

 

lilneenz
Member

Re: Not coping too well

After all that stressing, no results were there ! Apparently they will phone with the er one today but the her2 won't be yet.

Also found out that my 2cm invasive tumour within the 5cm DCIS, is multi focal !!!! So apparently lots of little tumours within the DCIS - why didnt they tell me this last week - also saw on the bit of paper she was holding, lympho vascular invasion !!! I asked if I had this and she said "oh yes, but only in the breast"???!?! Needless to say I am now cr****g myself about multi focal and the likelihood that it is her2 !!! Scared, worried - I just wanted to have something positive to hold on to today. Also it's now 3 1/2 weeks after surgery and my oncology appt is not until mid April !!! Then it could be a further 31 days till chemo - so it could be over 11 weeks before I'm in treatment - even scarier !!! Any advice, help or reassurance greatly accepted xxxx
ann-m
Community Champion

Re: Not coping too well

Hi Melia,

The hormone status refers to whether the tumour has hormone (i.e. oestrogen/progesterone) receptors or not. If the tumour is hormone positive, it is referred to as 'er+' as it's growth is largely fuelled by oestrogen, therefore hormone treatment will also be offfered to suppress this. Most of us have er+ bc.

ann x

Melia
Member

Re: Not coping too well

Hi sorry to jump in on but I was just diagnosed yesterday and waiting on further results next week after a vaccum.biopsy today. As I'm need to all this what does the hormone status relate too? Does that determine what treatment is given? Hope Friday comes quick for you I understand exactly how your feeling as I've got until next Thursday to wait and it's pure he'll waiting and wondering xx
lilneenz
Member

Re: Not coping too well

Good luck Millie and thank you for your message xxx
Jill1998
Community Champion

Re: Not coping too well

Good luck with your results Millie.They can usually give you your Oestrogen status from the biopsy but the HER 2 status usually comes after your op when they have anslyised what they have removed That's what happened to me anyway .
Millie67
Member

Re: Not coping too well

 

 

Hi

I was diagnosed last thursday invasive lobular, small.....had mri yesterday ...results are later today.....I was a mess waiting results altho warned pretty sure it was...it was found by accident on ultrasound when looking at surgery for large cysts, so big shock

..Im taking one thing at a time now and focussing on that.........very confused with the hormone side of things !!  i was told only find that out after surgery.....today i will know if any more showed up........try and do one thing at a time, hard i know as our minds go out of control....here if you need to chatx

lilneenz
Member

Re: Not coping too well

Thank you ann and Jill.
I'm trying to keep busy today and going to get out on the sunshine. I'm going to try not to think about my back - I've had it since before my diagnosis, about 2 months. I have to keep reminding myself there are thousands of other women going through this right now and I will get through it !! Your replies have really helped me x
ann-m
Community Champion

Re: Not coping too well

As Jill says, yes it does.
x
Jill1998
Community Champion

Re: Not coping too well

Yes it does ,somehow you reach a place were you can deal with the fears and not let it dominate your life.You will feel better after Friday when you know what happens next .
lilneenz
Member

Re: Not coping too well

Oh it's just horrible - does this really get easier ? Xxx
ann-m
Community Champion

Re: Not coping too well

I've heard it referred to 'the hour of the wolf,' which seems apt!
ann x
Jill1998
Community Champion

Re: Not coping too well

the middle of the night is the worst time .
lilneenz
Member

Re: Not coping too well

Thank you for the replies - I managed to sleep a bit so feeling a little better this morning. I think the nightimes are the worst. X
Jill1998
Community Champion

Re: Not coping too well

The be positive thing is not helpful really is it when you are c****g yourself ?It is very uncommon for secondaries to be diagnosed at same time as primary breast cancer ,anxiety and stress cause all sorts of scary symptoms .
ann-m
Community Champion

Re: Not coping too well

hi lilneenz
Its most likely the anxiety & tension you are under waiting for Friday which is behind the back ache. With clear nodes there is not evidence of spread, even if nodes were affected, it still doesn't mean its spread further.
The results on Friday will clarify your treatment plan so that you can move forward.
do take care
ann x
lilneenz
Member

Re: Not coping too well

Have had two terrible days/nights with feeling terrified and like im in a bad dream. Have left it too late to phone the helpline. I'm so worried about my backache - even though my nodes are clear could it still have spread ?? No one to talk to as everyone is telling me to be positive
Maria12
Member

Re: Not coping too well

Hi lilneez , the whole waiting is the worst time , once you get some kind of plan and idea of whats going to happen fears do get easier .I was so worried about my 12 yr old son when i got my diagnose , but he has very much dealt with things so far .i have a very large tumour with lymphs involved and due my 3rd chemo next week , its not been easy but it is doable . Good luck with all your other scans maria xx
ann-m
Community Champion

Re: Not coping too well

Sorry to hear how you're feeling at the mo, lilneenz, but the uncertainty at this stage is always so difficult to manage. It will move on.
It's good the nodes are clear & that the hormone
status results will help complete your treatment plan to get the little sod dealt with.
With all this going on, its not surprising you dont feel enthused about your new home, you have enough going on to deal with, but that will move on.
I think we've all experienced various aches & pains when going through this stage, its normally the anxiety niggling the body.
If you haven't already, is it worth looking at counselling support? Your team can advise on this.
take care
ann x

lilneenz
Member

Re: Not coping too well

Thank you xx
Debbie61
Member

Re: Not coping too well

Morning Lilneenz! Waiting for results is horrible! Nothing much else to say! Friday will come (I know it feels years away) then you'll know what's what, and you'll manage it. Sending hugs. Debbie xx

lilneenz
Member

Not coping too well

Hi ladies
I've had a really rough few days trying to get to grips with my diagnosis - 2cm invasive grade 3, clear nodes - now worrying about further results Friday on hormone status - feeling so scared for the future, for my son. Still having backache. We have just moved and I can't get enthused about new home. Just don't know what to do x