Have been reading through the forums for the past couple of weeks which has been really helpful, but have only just registered. I was diagnosed with BC on 4th August. Its a 1cm lump that is hormone receptive (and i believe aggressive) but don’t know any more at the moment. I have my SNB and op booked for 15th August, but the waiting is absolutely awful. Terrified that while its still there its spreading to my lymph nodes. Have been having pains down my arm, back and collar bone - probably due to stress but i’m imagining the worst. Friends and family have been great but they can’t fully understand the emotional roller coaster. I’m 49 and live in the Bournemouth area. Any support will be greatfully received.
oh alibaba, I bet you are terrified, we all were when we first found out. One bit of good news is that if they are doing a SNB that means that at the moment from the tests they have done so far there is no evidance that it has gone to your nodes. So when they looked at them on the scan they looked ok. obviously they cannot know for sure until they have done the SNB but at least that is encouraging.
and yes you are probably right about the pains. I think you hold yourself differently when you first worry about BC and so can get pains from the tension in that area.
I had a WLE and SNB in July. the lump was 1.5cm with invasive cells. I have fully recovered from the op, with a very neat scar and no dent from the WLE. I started radiation therapy this week that is time consuming but in no way unpleasant. And becaue like you it is hormone posative i will be having tomaxifen tablets later. Because it was not inthe nodes and did not have a blood supply I do not need chemo.
It is an aweful time going up to the op and then afterwards waiting for results and as you say an emotional rollercoster.
I will dole out my normal two bits of advice. Download the excercises now and start doing them so that your muscles are in good shape before the op and you will recovr quicker. And secondly buy yourself a good sports bra with seperate cups to help you be less uncomfortable in and out of bed afterwards.
And remember we do fully understand what you are going through, so come on here whenever you need to
oldandlumpy, thank you so much for your advice. Its made me feel better already. I will look into getting a sports bra before Monday and will download the exercises. I just need to keep my fingers crossed that they don’t find anything in the nodes. The initial description of treatment they suggested sounded very similar to yours i.e op, radiotherapy and hormone treatment. I confess i didn’t take an awful lot in at the time, and because my husband has BUPA we decided to go with that hoping to get the surgery done quicker. So far have only had a quick conversation on my mobile with consultant’s secretary (was on my way to tell my elderly mum at the time who can’t hear very well - so thought better to have the face to face conversation). Anyway the upshot was that i was told the consultant could do the op Monday afternoon, but i would need to go to Bournemouth hospital first to have the dye and wire placed and should turn up at 9:15. Trouble is haven’t heard anything since. Will give the consultant’s secretary another call to confirm everything, but thought i might have heard something from the hospital by now re pre-checks. Have also phoned the BCN and left a message but waiting for a response.
Hi Alison, so sorry u have to join us but welcome. OAL is right, everyone is terrified when they get told they have BC. It’s perfectly natural to feel this way. The waiting is always the worst part & ur mind starts working overtime imagining all sorts, i know mine was & still is. Are u having a mastectomy or a lumpectomy? I had the latter with node sampling & the op wasn’t too bad at all. Im the same age as u & the drs all keep telling me im young,lol. They said they’re going to throw everything they can at me to get rid of this. It is very stressful & i think we can all sympathise with thinking that every ache & pain is to do with the bc. But it’s not, our minds just go into overdrive. Keep posting when u need to, we all know how u feel, take care, love Heather x
Hi Alison
Don’t panic and don’t Google too much!
I was in a similar position to you a year ago - age 50, just diagnosed with a 2cm hormone receptive BC. I had the lump removed, had the SNB, nodes clear, did the rads, didn’t have chemo and a year later I’ve only the delightful side effects of the hormone blocking therapy to deal with. And at age 49 you’re probably sliding towards menopause anyway, even if you haven’t noticed it, so the side effects shouldn’t hit as hard.
Ask lots of questions until you feel you really understand what they’re telling you and that you agree with the proposed treatment.
Best wishes
Sarah x
Hi Alison, I was diagonosed on 5th August at Poole hospital. You are lucky my op isn’t until 30th August. What a terrible time it is waiting. I am like you since I had my biopsy I seem to have all sorts of aches and pains and my imagination is running riot. I am struggling to get over the shock. One minute I am fine, the next I am in floods of tears. I am due to have the lump removed but also they are putting the wire in to guide the surgeon to the area as it is very small. I am also having the SNB procedure too, all on the same day which is good, at least everything will be done at the same time. Then there will be the next agonising wait for the results.
I have been told once the treatment starts I will feel better as I will have something to aim for.
Take care
Barbara x
Alison, sounds like you could do with a hug and a box of tissues. We know exactly how you feel, having felt just the same. I know that I wanted them to get it out NOW!!!, and was quite distressed that I would have to wait more than a month from the moment I was diagnosed (8th Dec) to WLE (10th Jan) because of holidays and rubbish weather, but my surgeon reassured me that a couple of weeks at that stage wouldn’t make any difference to my survival and it was important that I had the additional tests (I had MRI scan) so she knew exactly what she was dealing with. My tumour was a bit larger than yours at 13mm, and Grade 3 and HER2+ which is often called “aggressive”, so I think you can breathe a bit easier than you are at the moment.
In the meantime, people generally find it helpful to keep busy. I know some people have even done massive spring cleaning jobs and ended up with sparkling clean houses. (I confess I don’t like housework so found other things to keep me occupied…)
Here is a basic three-step exercise to do while you’re waiting:
Step 1: Breathe in.
Step 2: Breathe out.
Step 3: Repeat steps 1 and 2.
Thanks to all of you for your messages and support. Its made me feel a lot more positive today and much appreciated. There seems to be a few of us just diagnosed and in a similar situation at the moment, waiting for the op etc., and the advice of those already on this path is invaluable.
Ali - the waiting for results etc and to find out the true prognosis is the mozt unsettling and frightening time, you’ll imagine every scenario. It really IS horrible.
You’ll find that a lot of women who have the “full whack” treatment, chemo, radiotherapy, endocrine drugs etc, really dont have many side effects and find it “do-able”. Of course there are also those of us who’ve had a really bad time with it, but it’s a short time for a maximum benefit. I’d still do it again for the chances it’ll give me and chemo has been grim for me.
So during this unsettling time, try and focus on the fact that you wlil get through this.
Also, if it’s gone secondary at all, then there are honestly a lot of people with cancer these days who have it managed and live for decades.
One of my friends Mum first had cancer 20 years ago and has been unfortunate enough to have 2 recurrences since, she’s still here. She’s obviously sick of it, but she’s eventually adapted to deal with now living with it, although it wasn’t easy for her, who wouldn’t feel robbed.
WIsh you the best of outcomes and you’ll find a lot of support on here, if you want a rant you can, or a weep, or even a laugh.
Hi Alison sorry you had to join the club, but im sure you will find BCC so helpful as we all do.
This is the WORSE time ever just being diagnosed & waiting surgery it is so frightening so much uncertainty & worry. You right the pains probably are just worry I had convinced myself I was riddled & I was same as you getting so impatient about the surgery thinking the cancer was spreading whilst in there. You just want it OUT ASAP ! I think on average it is usually 2 weeks from diag - surgery & this is the norm not alot will be happening in them two weeks, even the worse are not that fast, but I truly inderstand how you are feeling right now I was the same. Once surgery is out the way & you go back for the follow up appointment you will know excactly what you are dealing with & with a treatment plan in place you will start to feel like your regaining some control again.
Take one day at a time as for ‘google’ dont even go there
wishing you all the best keep us posted
So wish I had found this site weeks ago. Found tiny lump in left breast. Turned out to be two small tumours in left breast and in site precancerous tissue in right breast so have had WLE on both sides and SNB on left, unfortunately positive lymph nodes so have carried on to axillary clearance on left. I have been so very scared, makes me cry just writing it. Trying to be cool and calm about it to friends who have been mostly fantastic. Going through bone scan and CT scan this and next week, with oncology appointment next week to start chemo probably in early Sept. followed by radiotherapy. The never ending wait for the next lot of results is excruciating. Feel I have been forced into membership of a club I never wanted to join. The only consolation is that the rest of the members seem to be pretty fantastic women.
hi lucy, sounds as if you have handled a lot by yourself already. I know you say you have fantastic friends, but unless they have had cancer themselves they cannot realy understand.
it must be terrifying knowing it got as far as your nodes, wondering where else it is. But lots of people do come on here saying the scans on the rest of their bodies are clear, so lets hope you caught it in time. There are also people who have secondaries coming on with good news about the chemo gettting rid of them.
this week and next till you get your results and meet with your oncologist are going to be a nightmare, not knowing what is in store, but once you have that meeting, once you know what your are fighting everybody says, it is easier.
Have you had the results of your WLE? have they said what sort of cancer it is?
Hi Ladies, esp Alison and Lucy,
Sorry you have to be here and wishing you the easiest time possible throughout your treatments and surgeries. I have recently started reading and posting and can only say how much it has helped me. I had a WLE and it went as well as it possibly could (morphine made it all ok…!!) and chemo so far has been very manageable, whilst not being without it’s challenges. This forum is a real source of strength and support.
I have got a few friends who have had BC without the positive nodes who have been and still are really supportive but now a bit lost for what to say. Haven’t met anyone as yet who has had or is to have chemo, no doubt you meet up with them during treatment. Live near Leeds so am going to try contacting The Haven. Has anyone else been there? Thank you for the support back it is much appreciated and all the good wishes available to everyone else out there waiting and going through it. Lucy xxx
Hi Lucy
seems you have coped through alot on your own, please don’t be disheartened that the friends of yours who have had BC have not needed chemo, as your probably aware there are loads of women here who have been through it or going through it & doing well. There are some really positive stories from women several years down the line.
Hi Lucy and Alison, I am so sorry that you have found yourself here. Its a horrible club to join BUT a club with some of the nicest kindest members you could hope to meet. As its been said above the waiting really is the pants side of things. We on here will do all we can to support you during this really difficult time.
Just picking up on the recent posts, and you’re quite right that its not a club any of us want to join, but it certainly has the best membership anyone could wish for. The support on here is truly amazing.
OH is very supportive but getting stressed out by my obsession with BC as it is with me 24/7 and i can’t get my head focussed on anything else. This forum is a godsend to be able to talk openly about things.
Had a very depressed and tearful day today which one of my best friends helped me through, but i feel that i’m just upsetting everyone. Should be greatful that its nearly operation day (Monday) and at least the primary evil lump will be out. So scared of what else they might find though, and with my arms hurting, starting to worry about it being IBC which I believe is very aggressive, and if my arms are hurting now does that mean its spread already? Ultrasound showed my nodes are clear but i know only the op will confirm this.
Alsion,
It is all hard enough for us at the beginning of this, and especially in the waiting period, without feeling responsible for everyone else’s feelings as well. This time it IS all about you!
You have to do what you have to do to cope in your own way, and need to explain it to them, that learning as much as you can makes you feel stronger to deal with it in the end, even if it is upsetting in the meantime.
Again, being depressed and tearful is part of it for most of us at some stage, and a friend or relative allowing us to expres that instead of bottling it all up is one of the most helpful things they can do. I had to have times at the bottom of the garden digging looking at the worst possibilities head on, in between times of going out looking as if everything was normal. Someone else might go for a walk, or go shopping or even pick a fight.
It is getting nearer to you being rid of the evil lump. I think the anaesthetic nurses thought I had flipped when I woke up and smiled when I knew my evil lump had gone.
My ultrasound said nodes were clear and I didn’t believe it but they were. I was petrified that it would all have spread to my chest wall in the waiting time and had pains etc but it hadn’t. And I hope the same will prove true for you.
Best of luck on Monday
Lavender
xx
hi alison, hope you have something nice planned to do today to make it pass quicker.
does your hospital test your SNB during the operation or do you have to wait for the result. My surgeon told me that unless i had squelshy breasts then if i woke up with a drain it meant the SNB was posative and they had taken some auxillary nodes, but if i woke up with no drain it was clear. At least that was one result I did not have to wait for. I hope your hospital can do it that way.
And again I am sure that your aching arms are you just holding yourself differently as you worry about what is happing in your breast. and then as soon as you feel an ache you focus on that and hold that part of your body differently. I dont think anyone with posative nodes says that their nodes were painfull.
good luck tomorrow, do let us all know how you get on.
Thanks OAL and LL. Feel a little bit better today which I hope will last. More worried about the diagnosis result rather than op itself, although I guess that’s going to be bad enough. Friends, family and work colleagues are rallying round and wishing me all the best. Will probably go out for a nice walk this afternoon. I’m on diazepam to help keep me calm (only low 2mg dose) but it does help, especially with sleep. It’s just the panic that sets in when I wake up.
Can’t believe that only a month ago life was trundling along normally. Had joined the local sports centre with the aim of geting fitter and slimmer, enjoying zumba, swimming and games of tennis. Also have a year of celebrations planned with my sisters 60th next month, neice is 30 in March, my OH and myself both 50 next year, and nephews wedding in August. Now everything seems to be on hold and have lost my enjoyment in everything. I do hope I get this back whatever my diagnosis is, but really could do with some good luck at the mo.
Alison xx