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So scared

26 REPLIES 26
Community Champion

Re: So scared

Hi ladies, it's very natural to be scared, but there are loads of stories on here from ladies who have passed the finishing line. It's the fear of the unknown that is so bad. Honestly, once you have your pathway you will be more in control and can get on fighting. I never thought I would be saying this, but it really is all doable. Love to all. X

Member

Re: So scared

 

 

LOVE & BIG BIG HUGS NIKKI.....thinking of you and all those going through a difficult timexxxxxxxx

 

 

Member

Re: So scared

Thank you Nellie.

I'm getting through the days with a mix of pure panic and some times where I can almost forget/pretend this isn't all happening. I flit between trying to be positive to convincing myself of the worst!!

It is such a tough time and I wouldn't wish this on anyone.

Xxx
Highlighted
Member

Re: So scared

Hi Nikki
Just want to send you hugs. It's horrible when you first find out and the feeling of wanting to get out of your own head for a while is much needed. I continued with yoga. The one I go to is very relaxing and really helped for at least an hour. Also I love meditating and a site called fragrant heart which is free meditation was brilliant to keep me positive. Hope all is clearer and easier to face for you soon. Lots of love xx
Member

Re: So scared

Thank you. I appreciate you replying.

I have a friend who has recently come through breast cancer and she is my inspiration but hers was a different type and wasn't as advanced/fast growing as mine seems to be.

I hope you can get back to eating properly soon. I managed some soup earlier (although it wasn't the healthiest as it was a can of creamy tomato - all I had in)!!

Keeping everything crossed for us all xxx
Member

Re: So scared

Nikki

Just wanted to add my tupence worth. When I was telling my friends yesterday about my newly diagnosed BC I was amazed at how many if them knew of other friends of friends who had all come through this awful awful disease. 

 

Like you every ache or pain I feel I'm convinced it's spread. I too really enjoy my food but just can't face much at the moment. I managed to have some nice fruit and yoghurt after I'd gotten back from the gym earlier. It was hard but I really did feel better after eating it. 

 

Xx

Community Champion

Re: So scared

Nikki

 

I have a feeling that you are definitely going to be inspirational in the future Smiley Happy Smiley Happy xx

Member

Re: So scared

Helena - a fab story with a fantastic outcome. I really hope I can be so inspirational in the future.

My cancer is hormone negative which I believe is a bad thing (or at least not as good an outcome as if it had been hormone positive?).

It wasn't my actual breast care nurse I spoke to today as my allocated one only works on Wednesday and Thursday but there is a team of nurses that work together so I was able to speak to one of those (I didn't even get her name!).

I have also heard that it is a good thing when the cancer is caught early but no one seems to be able to tell me how long mine has been there - they said there is no way to know that?! I went to the dr as soon as I found the lump and have been seen pretty quickly since then but I still don't know if it's been festering away under the surface for ages and I just didn't realise (this fuels my fear that it's had plenty of time to spread).

Enjoy your meal out, it is definitely a time to celebrate xxx
Community Champion

Re: So scared

Nikki

 

Well done you, I know that was a very big step for you to take today xxx Oh that is great to hear and so positive response from your breast care nurse, she sounds a good one.

 

I too am posting my positive story.  ER+ is hormone receptor positive which means that you will at some point be on a hormone blocking therapy (estrogen which is what the cancer was "feeding" of), mine was ER+ and I take Tamoxifen on a daily basis for the next 5 years.  I was extremely lucky as mine was found as a result of a routine mammogram, I am 59 and have three since I was 50 and this was the first time I was recalled.  I had grade 1, tubular cancer that was hormone receptor positive.  That was in September last year, op was in October and I then had 20 sessions of radiotherapy which completed in January 2017.  I am now back doing everything I used to do before and really appreciating life.

 

It is almost 12 months since I was diagnosed and on that day I could not imagine being here 12 months later despite them telling me that it was very treatable and caught early.  My boss who was with me throughout it has suggested a meal out to celebrate and mark the occasion, grabbing that one with both hands.

 

Sending you lots of smiley faces Smiley Happy Smiley Happy Smiley Happy

 

Helena xxx

 

Member

Re: So scared

Thank you Ruth. I am completely astounded at the lovely responses I have had here - you have all given me such strength at a time when I felt all hope was rapidly diminishing.

I now have a date for my CT scan and it is only 9 days away so I will stay in the NHS system and let them work their magic for me too.

I am so appreciative to you all for taking the time to read and reply xxx
Member

Re: So scared

Thank you for the clarification. Yes I think it was ER-ve (1+1) and PR-ve (0+0)

It also mentioned 'multiple involved U5 nodes'... although as far as I was aware they only took a core biopsy from one node so how do they know it's multiple? I guess they saw it on the US screen?!

Xxx
Community Champion

Re: So scared

Hi Nik Nic,

 

Excellent advice so far from the folks here. It's pretty much universal I think that we all imagine we have the dreaded spread but the truth is only a very tiny percentage of people are found to have that at initial diagnosis. 

 

I too am one of the very many good news stories. 18 months out of treatment (MX with reconstruction and chemo) and I feel physically better than I did before I was diagnosed. 

 

Unfortunately an awful lot of women get this disease but there is an advantage to that: Because there are so many of us there has been and continues to be extensive research and new treatments are coming through all the time. The outcome for the vast majority of people is really positive. I agree with the others who say stick with the NHS. I remember reading someone here when I was going through my treatment say that she thought there were fewer support resources in the private sector, BCNs for example, and she felt her's was a very lonely journey.

 

When the time comes, join one of the chemo monthly groups where you will get great support. Believe it or not we do all have a bit of a laugh here on this site as well. In a few months time I'm sure you will be here supporting other women and giving them the benefit of your experience.

 

And eat lots of nutritious soup. Smiley Happy

 

Ruth xx

Member

Re: So scared

ER+ means my cancer was hormone driven, so I was given tamoxifen to stop the action of the hormones (post menopausal women get a different drug, often letrozole).  You have said yours isn't hormone driven, so that would be ER- (the E is for estrogen, being the American spelling of oestrogen).  You may also see references to PR - relating to progesterone.

Member

Re: So scared

Roadrunner - thank you, thank you, thank you (x 1,000,000).

I have just phoned the breast cancer nurse and asked a few questions - she informed me that my CT scan is on Sunday 13th August and the oncology appointment on Wednesday 16th August will be to discuss (not start) the chemotherapy they will give me. She said they have their weekly meeting on a Wednesday morning and hopefully the CT results will be in by then for them to discuss and tell me at my appointment later that day.

She explained that the her2 results take longer to come back and that the result will just determine whether I will benefit from the drug herceptin but that is not needed for the moment.

I don't know what the ER+ bit means but I vaguely remember seeing something like that on my pathology report (I'm too scared to go back and look at it though to check).

The nurse also said that even if there are cancer cells elsewhere, the chemo does a really good job of killing the cells all over the body, not just the breast, so I'm holding on to that at the moment (can't shake the worst case scenario picture from my head).

Thank you again, you all have no idea how much you have helped me. I hadn't wanted to post as it was admitting the diagnosis but I'm so pleased I did.

Hugs to everyone xxx
Member

Re: So scared

Hi Nikki

Well, you asked for positive stories:

I was 44 when diagnosed, grade 3, 2.7cm lump, in three of my lymph nodes.  My kids were 12, 14 and 17.  I had surgery, chemo, rads, herceptin and tamoxifen (as I was ER+ve).  

Today I am 54, fit and well.  I've seen all three children reach adulthood, I've been to two graduations (youngest still at uni), and now have a wedding to look forward to.  Life is good.  In ten years time you'll be in my position.  

 

I see you lost your mum to cancer a few months ago.  That sucks as I know only too well.  My mum died of cancer three weeks before I was diagnosed.  It was a surreal time, and just when you need your mum most she's not there.  Sending you big hugs xx

Member

Re: So scared

Lilneenz- thank you so much! That is what I needed to hear!

I have no idea about Her2, it hasn't been mentioned at all? They told me that the cancer I have isn't responsive to hormones (I was led to believe it would be better if it was?!). That chemo should work well on it (but only if it hasn't spread elsewhere). I asked for a copy of my pathology report but it scares me to read it and I don't understand a lot of it but am scared to google!!

It is so fantastic to read how well you are doing. I really, really hope that I can be in a similar position to you soon and offering comforting advice to others as scared as I currently am.

I'm going to grab a shower now (whilst my littlest one naps) and will then try to eat some soup.

What a rollercoaster this all is - and I've never liked rollercoaster 😉🙄😁
Member

Re: So scared

Hello Nikki
Just wanted to message to say hi and offer some reassurance. This is a very stressful and uncertain time and hope I can help you feel a little calmer.
I'm 44 and my cancer wasn't discovered until after mastectomy, but was similar size at 2cm and although my nodes were negative, I had evidence of lymphovascular invasion which means the cancer has invaded my blood/lymph vessels. My cancer is hormone negative and also her2 positive. I remember I was terrified my CT scan would show spread, every ache and pain filled me with fear. I had lower back ache and rib pain, but it was clear and theres a high chance yours will be too.
Hormone negative cancers respond extremely well to chemotherapy and there are many many women doing extremely well. You may be waiting for your Her2 results as they take a bit longer and if like me you are her2 positive, you will then have Herceptin to add to treatment which is a wonder drug.
It's good you're having neo adjuvant chemo before surgery as you will be able to see that the chemo is working in reducing the size of tumour. Lots of women have a complete pathological response, which means the lump disappears altogether.
I know it's an awful terrifying time, I was where you are now, but I've just finished chemo and about to start radiotherapy and although it's not a walk in the park, it's doable and you will come out the other side. Keep strong and hold on to the positives. Good luck with the scan. Take care xxxx
Member

Re: So scared

Once again, thank you. It is amazing to find people to talk to that know what I'm going through. I am just so overwhelmed with it all. I really want to stay positive but I just don't know how to do that when everything is so uncertain and I am jumping straight to the worst case scenario. I just feel I have been so unlucky up to this point that it would be foolish to think I would have any mthing other than more bad luck!!

Soup is a good idea and I will see if I can manage some in a little while. I am managing to drink tea and water but anything else turns my stomach (and I am a BIG eater so this is very out of character for me).

Helena - I'll take the virtual hug, thank you.

Mai7 - what fantastic news for you. I really hope to be here posting such fab news for myself in a few months time.

Xxx
Community Champion

Re: So scared

Hi Nikki, sorry to hear of your diagnosis and glad you found our lovely forum where you can be supported by people who are in the same club which no one wanted to join.  Your anxiety and irrational thoughts are completely normal straight after diagnosis but will settle once your treatment plan is in place. I had chest pains and heart racing due to anxiety and was convinced the cancer was spreading. These thoughts and reactions are all normal. With regard to the nhs I'd personally stick with it if I were you. I didn't feel things were moving fast enough at times but the nhs do have strict targets for the number of days from diagnosis to treatment. Once you enter the private system it can be hard to go back.  There was a women on here a couple of months ago having difficulty with private health care keeping her waiting much longer than the nhs. Just make sure you stay in touch with your breast unit nurse and she will keep you posted on what's happening. If you feel you need support in navigating your way through the system you can contact McMillan who will support you if need be and there is also a PAL service within hospitals which you may want to look up.  I'm 48 with stage 2 advanced BC including local nodes and on my 5th out if 8 chemos before surgery.  I had a scan yesterday which confirmed my chemo is working at shrinking the lump and the nodes. Whew!  I have found this forum really helpful. Once your treatment plan is in place you can join the relevant treatment threads on here to network with others going through the same treatments at the same time and get support for side effects and generally not feel so isolated. I wish you well as you start your journey. Xx

Community Champion

Re: So scared

Nikki

 

Oh my dear I wish I could give you a proper hug but a virtual one will have to do I am afraid. Perhaps the writing down is something for later on when you are ready to.

 

It really is stress that is causing you to feel like this, honestly it will get easier., unfortunately the anxiety monster takes over our rational thinking at times like this.  Perhaps try some soup or the like that might be easier to swallow, I know it sounds mumsy but you really need to keep your strength up xxx

 

Whenever I get too stressed I lose my voice which apparently is as a result of my brain sending an incorrect signal to my larynx to close slightly.  I do breathing exercises which helps it to settle down.

 

Have you thought about speaking with your GP and see if there is anything they can give you in the short term to help you?

 

Helena xxx

 

 

Community Champion

Re: So scared

Hi Nikki, sorry you have had to join us but a very warm welcome to you 😊 The shock of a diagnosis is horrendous and your feelings right now are completely normal! Every twinge and ache will send your mind in to over drive when in reality they are highly likely to be nothing to worry about .

The anxiety monster is just that a complete monster who can make you feel like you are drawing your last breath at times!! 

Things do get easier, once you know exactly what is going to happen the anxiety starts to settle and you can think more rationally , at the minute it's all guess work and your poor brain is struggling to process it!!

 

In my experience I was treated quicker on the NHS than I would have been using my private health insurance, they really do excel in this area and I couldn't have been better looked after , waiting is the hardest part but it's also necessary to get the full picture , dig deep and things will soon start to get easier Xx Jo 

 

Member

Re: So scared

Thank you Helena.

The problem is that the things in my head are all the big things - the big worries that I don't want to face. Writing them down will make them more real.

I actually feel unwell today for the first time since all this started - I feel shaky, keep going hot and cold, feel sick and can't eat at all (I've tried but I can't swallow the food). I'm trying to rationalise that this is down to the stress of the situation but worrying that it is because the cancer has spread.

I'm not coping with this at all well.
Community Champion

Re: So scared

Nikki

 

I dont know for sure about going privately and how it would affect your NHS journey so far, but what I would say is the NHS breast cancer care is second to none, the quality of treatment is amazing.  I have absolutely nothing but praise for the treatment, care and attention I have received since my diagnosis in September last year.

 

Forget about the appointment with the oncologist for now it is in the future. Perhaps next week, when you are feeling up to it, you could call your breast care nurse and ask her about it, she will be able to let you know.

 

Also I found that a way of dealing with my diagnosis in the early days, was to write down all the stuff that was in my head, no matter how small, questions, thoughts whatever.  The good thing about this is it is out of your head so its not running round in there but also it means that you will not forget something that you want to ask/get answers to.

 

 

Helena xxx

 

Member

Re: So scared

Thank you so much for the replies and kind words. I'm torn between wanting 'to live each days as if it's my last' and not being able to find the strength to get up, get dressed and get through the day.

I've just had an oncology appointment through for wed 16th August but I don't really know what that is for...

I wish I could get out of my own head for a while!

I'm ready to fight but would love someone with a crystal ball to tell me it's all going to be ok (I'm sure we'd all like that!).

It's all just so overwhelming and scary and I can't focus on anything else (but don't *want* to focus on this).

What an awful situation for us all to find ourselves in.

Does anyone know if I went for a private CT scan (to speed that part up), would that help speed up the other parts (I.e, figuring out a treatment plan and starting treatment)? Or would it just mess with the system I'm already in? I'm extremely grateful to the NHS for their involvement and care and I don't want to mess that up.

Thank you again for the warm welcome xxx
Member

Re: So scared

Oh love. deep breaths. your head is racing head. I get that too because it's almost like we're trying to plan, manage everyone's expectations and fears and catastrophize at the same time. bloody horrible situation to find yourself in.

I'm sorry I can't offer much help. taking each day/ result at a time is keeping me sane. We haven't even told our boys yet (13 & 8) until a plan I is clearer which I find out more about today.

I hug my boys tighter.that helps in the short term. keep on here to share your fears and questions and we'll all pull together as much as we can to offer reassurance and giggles. from what I've been reading - yes we can all live with this and survive. The medicine and clinical teams are amazing. get to know your breast care nurse too. They are fantastic.
hugs and love, Jacqui x
Community Champion

Re: So scared

Nikki

 

Hello and welcome to this lovely forum full of wonderful ladies who will help and support you through this I promise xx

 

This is the worst time having had your initial diagnosis but still waiting for further investigations, but this is all so that they know exactly what they are dealing with and can tailor your treatment plan to you as they are all individual.

 

The way your are feeling at the moment, sicky with aches and pains, is usual borne out of fear and anxiety but once you know what is happening this will help, we have all been at that point so totally get you my dear   You are having to take in a lot of scary information at the moment, I would suggest try to do some relaxing exercises when you feel overwhelmed and breaking everything done into small managable milestones not thinking too far ahead, so for example the next one is to deal with your CT scan itself and not think further than that at the moment.  Try to go out with the kids and do nice things together that will take your mind off it.

 

There are lots of ladies on here who have had the same grade 3 diagnosis as you, have gone through the chemo and then had the lump removed so you are not alone and they will be able to support you and I am sure they will be along soon.

 

There is a wonderful helpline on here with lovely ladies who you will be able to talk when you need to, the number is 0808 800 6000.

 

Sending you a lovely hug and just remember we are all here for you whenever you need us.  We have a pair of "virtual" tough pants which are winging their way to you and we will all be beside you.

 

Helena  xxx

 

 

Member

So scared

Hi All,

I never thought I'd be here... but here I am!

My name is Nikki and I am 41 years old. About a month ago I found a lump in my right breast after having an achy/bruised feeling in my armpit for a few days. Went straight to the dr who didn't think it was anything to worry about and as I was mid-cycle said it was probably hormonal. She told me to come back in 2 weeks and it would probably be gone. I went back 2 weeks later and the lump was still there. She said she still wasn't concerned as it was small, round and moveable and because I had associated pain (it hurt when it was touched) it was unlikely to be breast cancer but she referred me to the breast clinic (saying it is most likely a cyst and they'd drain it and that would be that).

That appointment was last Thursday and after a mammogram that showed 'thickening' and an ultrasound that showed a suspicious lump, I had 3 biopsies taken and was told to expect a diagnosis of breast cancer. We went back yesterday for the results and it is indeed breast cancer, grade 3 and also showing in my lymph nodes. I've been told it doesn't respond to hormones and that I will need chemo followed by lump removal. They have put a clip into the centre of the tumour (which is 24mm) so that if the chemo works really well they won't lose track of the area. They said they don't know what stage I am (although the dr did say that his best guess at the moment would be stage 2) and I now need to wait for a CT scan to see if it's spread elsewhere so it can be staged. I've been told if it's spread then it will no longer be curable but that any treatment I receive will just be to prolong my life 😢. If it hasn't spread though and is a lower stage then the chemo should work.

Prior to diagnosis, I felt absolutely fine (apart from the small pain in my breast) but now I feel constantly sick, am unable to eat at all and just don't know how I'm going to get through to the CT scan (1-2 week wait for scan and 1 week wait for results).

Every ache I feel I convince myself it's spread and every sick feeling (so ALL the time) I convince myself it's spread.

I want to get to the CT results (but only if they're good - if they're bad then I don't want them!) so I can start chemo (they said in approx 4 weeks). I hate walking around with this hideous cancer in me. I want to rip it off my chest. The fear that I am just wandering around getting on with daily stuff and it is there silently growing and spreading is freaking me out.

We sat our 3 kids down last night and told them. They are 13, 8 and 16 months (obviously the 16 month old is oblivious). My biggest fear is that I won't get to see my kids grow up and that they will be left without a mum at such young ages. I am also fearful that they will witness me getting more and more ill which is something I don't think anyone should have to see - I was with my mum at the end of her cancer battle only a few months ago and it was heartbreaking).

I know there is nothing anyone can say to stop my fears but if there are any ideas how to eleviate this constant sick feeling and how to get through until treatment, they would be most appreciated. And any positive stories of people who have been in my position would also be welcomed with open arms.

Thank you for reading (if you got this far!)
Nikki xxx