So frightened

[Powdow]

Hi Emma,

I have (well perhaps that should be HAD) lobular invasive. My initial diagnosis was 3rd May, then had to have MRI which showed another area, so changed from lumpectomy to mastectomy. Surgeon did say that there could also be more not showing up.
I did have a long time between initial diagnisis and treatment starting due to the various tests (mri/ultrasounds/biopsies) and the waiting of the results of each. I finally had sentinel node biopsy late July, which was positive.
I was also having immediate recon using the DIEP procedure, so a wait for plastic surgeon.
Finally had the big op on Sept 7th, mastectomy and axilla clearance.
Got results back on Thursday and no cancer found in any of the other nodes they removed. There was a 3rd tumour found, so reinforced the mx was required. They graded it a grade 1 which I was happy about as lobular normally grade 2 I was told. I have an appointment with oncologist to discuss whether chemo/radiotherapy will e of any benefit. I'm hoping I don't need anymore treatment and can just recover from this now and move on with life.

[Stacey]

Hi Emma,

I have lobular cancer too.  I am waiting now for a treatment plan, which I hope is next week and not still more tests.  After initial biopsy I've had an MRI and then more biopies because it showed another area in the same breast.  One of my lymph nodes is enlarged too, although it was 3 years ago when the screening mammo results were all clear ... maybe wrongly now I think.  

The waiting is awful.

[PeggyCat]

Hi Emma,

I was lobular invasive. I think the biggest challenge with this form is that it's sometime harder to diagnose because it doesn't always show up on mammograms quite so easily and it's sometimes found to be larger after surgery than at the initital diagnosis. Basically it sometimes takes a bit longer to get to your treatment plan but you will get there. I don't think there is much of a difference in long-term survival outcomes than with other types.

One year on from my surgery and eight months from my last chemo I'm feeling pretty good and enjoying life. 

It's easy to say don't worry because obviously you will but there is light at the end of the tunnel I promise you.

Ruth xx

[Steph J]

Emma if you scroll through threads there are some girls with lobular diagnosis x

[Steph J]

So sorry Emma I have no idea . Perhaps one of the other groups on the site may have some information , this is newly diagnosed isnt it ... I look at DCIS because thats what I have so I will ask questions on that one for me .  I had no idea there was so many different types of breast cancer and the terminology ....I guess this is the only aspect of this site which maybe you have to be wary of , because we are all at different stages and some girls have better prognosis than others . I bet you have cried and maybe the advice Treeze suggested is the way forward but its difficult to focus on anything when youre upset ... but it sounds like today has been a difficult day for you and thats fine  youre allowed to (  as my friend always says to me , and  she also says " youre having a bad day  or moment not a bad life " . And thats what I say to myself to chivvy myself along . Im hearing you Em and sending you some hugs and squeezes xx

[emmapitts]

Bad day for me today, lots of tears. Forgot to mention my diagnosis is 'invasive lobular', has anyone else been diagnosed with this type? Xx

[Steph J]

I know Im being selfish really ...life in the grand scheme of things is good . I also have other problems which are adding to my anxieties .I am looking forward to Monday when I get my final diagnosis and options  .. Im sure these feelings will pass and then I will take the steps ittle by little . Appreciate your words Treeze . Big hug ... x

[Treeze]

Big hug for everyone having a bad day.there will be good ones..I'm having a pretty good one so I know there are 🙂 I have breast and kidney cancer and awaiting biopsy and two ops.the trick I think really is not to allow yourself to think of all that's to come like it's one big thing...everyone says little bite sized bits that you can handle and it really is true.had a wobble the other day thinking about the ops...haven't had one in 25 years and I live alone so it can seem huge.but you really are stronger than you know and can do this.xx

[Steph J]

Hi everyone 

Having a bad moment Im afraid .... sadness and tears and I dont even know why ...for all I know my final diagnosis could be positive . Its so crazy where the emotions come from ! Theres no point even trying to make sense of why ..its just the way it is I guess . My ex partner from 20+ years ago has been diagnosed with lung cancer ...hes the same . Its a process but one of a hell of a **bleep**ty one .... couldnt ever of imagined Id be ranting on a web site ...let alone to you girls who have more than enough to cope with as it is ....Bloody lol . Im sitting here at kitchin table typing ferociously and the suns cracking the flags in the garden ....normal rule of thumb nothing would keep me from getting those last rays of the summer .... Iv def lost it today . Iv sat on that sun lounger about forty times this afternoon ..only to get up 20 seconds later .... this moment needs to pass asap !!!!!!! 

Emma hope you ok today xxx hugs for you , Lesley and Mary too x

[marydan]

This is totally normal and, yes you will be as you say all over the place. Believe me although I am typing quite the thing to you guys I still have those moments when I am a mess. They seem to have got less as the treatment plan is now in place and the same will  be for you. I break down when my husband comes in from work everyday, promise myself that I will not today but then it just happens. Trying to be good for everyone else. I really thought when this started on July 21st with the diagnosis that this is it life will never be the same, but now I am feeling more confident and yes it will get back to some kinda norm. Right now we have to face the next stage which we will I am sure. The oncologists,nurses etc know there stuff and this is an area where great strides are being made and improving all the time. I truly hope things settle a bit for you and your plan in place soon. I thought at 46 I was too young, got that wrong .xxxx Mary

[Lesley23]

Hi I have recently been diagnosed with best cancer and it has gone to one lymph node . Like you I am all over the place. Still waiting for mri and bone scan appointment it feels like for ever but only been a week. Some times I feel so shaky and keep dropping things can't concentrate on anything . Crying sometimes . I am hoping it will improve when I have a treatment plan in place. I find talking to my husband and great help .watching my favourite programs on TV a distraction and I stop myself and make myself take deep breaths every now and then to try and calm down .can safely say this is the worst thing that I have had to deal with . I still have to tell my parents yet but don't know how

[emmapitts]

It's the waiting which is increasing my anxiety, mornings seem to be the worst time for me, I've no idea why, I just feel worse at this time of day than any other. You sound like you had the same scenario process as I'm having. My husband wishes I had abit more go in me and abit more upeat, he's incredibly supportive, he just doesn't like seeing me so unhappy, I really do try but until this op is done I'm finding being my normal happy self very difficult xx

[marydan]

That totally sounds like me a few weeks ago, I had bc in right breast and had lumpectomy. Starting Radiotherapy Monday. When I was diagnosed on 21st July I was numb and went through every scenario imagineable, its totally normal. Things have settled quite a bit but the waiting for all to start and know just what is to happen is by far the hardest part. I,like you find home a comfort right now. I am off work for quite some time as I also have multiple sclerosis and through all this had my first ever big relapse. I am taking all advice on board and for once doing what I am told. Hard when I am always a on top of it kinda gal. Please be kind to yourself, things will settle and this site has been a Godsed for me. xxxx Mary

[emmapitts]

Hi steph, mine is in the right breast too. I have very little motivation and it's not like me at all, I find everyday tasks hard at the moment and I don't like being out of the house, home at the mo is my comfort zone, I want to be me again but I guess it all takes time. I seem to be crying alot, sometimes the tears will come out of nowhere, I could be anywhere and suddenly the tears will come. Thank you for wishing me luck. I really do appreciate all the support xxx

[Steph J]

In response to the feeling frightened . I have been diagnosed with cancer in my right breast and will find out my definate diagnosis on Monday . My emotions have been all over the place and last week I cried on and off . I cant seem to settle and im in and out of the house all day long but not really having anywhere to go . I must be using pounds worth of petrol going nowhere . I dont feel stressed but I must be because my behaviour and lack of motivation says otherwise . So reading what you other ladies have said it is normal repsonse but nonetheless its awful . Good luck Emma with your surgery big hugs x

[emmapitts]

Hi, yes we do sound similar in alot of things brenda. Bless your heart, we all need friends to help pick us up when we feel abit anxious at times. I'll definitely keep in touch and let you know how I'm doing after surgery. Will think of you next week. I'm sure I'll be on here again before Monday, just that re assurance to keep me abit calm. Xx

[Brenda77]

Hi Emma,  You and I seem to be in a similar situation.   I have been diagnosed with breast cancer in both breasts and have a double mastectomy next Thursday.  I too am suffering from anxiety and keep getting panic attacks about the 'what ifs'.  I found this website and it is really helping me.  When I get into a state I visit the site and there is always someone there to help me.  I live alone and am mainly relying on friends and neighbours to help me through but I too have received some negative comments which really set me back. I will be thinking of you on Monday and when we have both had our surgery I hope we can chat again.

Lots of love, Brenda xxx

[emmapitts]

Yes I do over think everything and going through the "what ifs", which I know is wrong, but my mind went into overdrive when I was first told.
It really has helped me already being able to talk on here, I know you understand how I feel emotionally, each time I feel I'm having abit of a moment I'll remind myself of what you've all said. I'm so grateful xx

[Sarah04]

Emma

If you have any questions at all etc pls do post or feel free to private message me. Pls do use your Breast Care Nurses too. They are there to help and can provide invaluable advice. Ask them if they can refer you to the clinic Psychologist if you think that may help with the anxiety? I haven't used one but many of the ladies who I have met over the last few months have and all said it was well worth it xx

[PeggyCat]

Hi Emma,

I totally agree with Sarah. The surgery was nowhere near as bad as I imagined. I had mastectomy and implant reconstruction. Having never had any kind of surgery before or even had much more than a nasty virus, I was terrified that I'd be in agony for weeks and laid up in bed for ages. That was so totally not the case.

You are at the worst stage right now waiting for the treatment to kick off. Once you get started you'll find it all starts to go pretty quickly and things feel more manageable. Try not to think too far ahead and allow yourself to deal with one thing at a time. You can't second guess what's going to happen next so no use in torturing yourself with "what ifs". 

I'm just over a year from first surgery and had my first annual review today. I can honestly say that I feel fine now. All of the people I came across, especially the people who looked after me when I had surgery, were all fantastic and so kind and I was so well cared for. I am sure you will be to.

Let us know how you get on.

Ruth xxxx

[emmapitts]

I am mad one minute then calm the next, that's exactly how I am. I find it hard to go out of the house, I get very anxious and abit shakey at times, I suffer with anxiety and at the moment I can't seem to break this wall around me (if you know what i mean). People who have been through this tell me the surgery isn't that bad, like you've told me, I just have to start believing. I do have people I can talk to, volunteers who have been through this journey, their details were given to me by the hospital, they are amazing. I've had negative comments too, which really haven't helped me. Thank you so much xx

[Sarah04]

Hi Emmapitts.
Sorry you find yourself here but please be assured what you are feeling is perfectly normal. The waiting from diagnosis is the worst bit.
I was like a mad woman one minute then seemed fairly normal the rest.
It's positive news it hasn't gone to your lymph nodes. Mine had gone to one but that hasn't really affected my long term prognosis.
Do you have people who can support you? This forum is amazing for people affected whether you have masses of support or not so much.
I know it's hard to believe but once you know more of what you are facing in terms of treatment etc, it does become easier.
I've already had my surgery and have just started on the chemo journey. I can honestly say the surgery wasn't as bad as I had made it in my mind. Yes, it's something none of us ever want to go through but you will get through it. Feel free to chat, rant, ask advice etc on here. Some of the ladies know far more than me and will come along and offer you support soon
Big hug
Sarah xx

[emmapitts]

I've recently been diagnosed with breast cancer and have a an op to remove my breast next monday. At the moment it hasn't gone to my lymph nodes but I'm so scared, anxious and frightened. My appetite is all over the place, I've lost my sparkle. I keep crying, I'm in a real mess, can anyone help me please?