I’m new to the forum and not quite sure if I’m posting under the correct category. I was diagnosed in July with grade 2 invasive lobular cancer with clear nodes. I have had a WLE in August and a further re-excision in October. I am 51. I am still waiting for the results of the further excision, which if aren’t clear will mean a mastectomy. I am really struggling with anxiety, I have been told this is normal given the circumstances, I also have regular panic attacks. As you can imagine I have so many worries all starting with he words ‘what if’. I am having trouble sleeping and this is causing me worry too. The lump was quite big and this worries me, although the consultant says it is now removed and doesn’t seem too concerned about the size. I have been told the nodes are clear and it is confined to the breast. People say I should be jumping for joy at this, but somehow I have trouble believing what I am told. I know it sounds like I don’t trust the medical team but, I do. I just can’t allow myself to believe it could be okay. I’m not sure if this is natural reaction or if my anxiety is playing tricks on me. I am not sure yet if I will need chemotherapy, both the nurse and consultant say it is unlikely, but I have convinced myself I will am petrified. I have also concluded, and I hope this is my negative part of my brain talking, that it always comes back and I won’t live to grow old with my husband. I know people say that no one knows when they are going to go, and to make the most of everyday. Of course this is good advice, but currently all I can see is negativity. I am having hypnotherapy, CBT and I’m on antidepressants. I am worried how I am going to move forward after all the treatment is finished. I don’t find the nurses particularly helpful, but then I probably want what I can’t have… reassurance. I do understand they can’t promise anything, so not blaming them and I’m sure there are people in greater need of their services than me. Are there women (and men) who have had bc who go on to live a normal lifespan? My husband says there must be plenty, but most won’t spend their time posting on forums they will be off enjoying their life and the bc a distant memory. I wish I could believe him. I’m finding myself withdrawing from friends and family as I keep going over the same worries day in day out and I feel guilty for doing this. Has anyone else experienced the same sort of anxiety and managed to move on? Any tips, words of wisdom or positivity would be very welcome. Sorry for the long post. Hugs to everyone who is going through this at the moment. xx
Hi
I can’t help with positivity for the future as I’m also going through treatment
It is so hard not to think about the worse case scenario , but what I decided was I wasn’t going to let it beat me or let my husband and children think it’s going to beat me
I take one day at a time
It’s still an anxious wait for you waiting to see if you get clear margins this time round as this could be the cause of the anxiety
I was lucky I got clear margins the first time round
This forum you will be surprised there is people around on here many years after treatment xx
Hi Rosie, welcome to the forum ?
Everything you are feeling and thinking right now is normal, I have cancer how can I get through/ live with /survive beyond this? Questions that no one can give us definate answers too and it does drive you quite mad!
I was convinced i wouldnt survive the month, this was going to be the end of me and my future was gone, the anxiety around these thoughts were horrendous and I could barely function but those around me kept me going, my husband dragged me to each appointment where I would fight him every step, my family and friends would make sure I was never alone and between them all they made me put one foot in front of the other.
Each step began to come and go, results were in, treatment plan in place, anxiety beginning to lift and this bought a belief that things might just be ok and 3.5 years on I can tell you that they most certainly are ok!
Your husband is spot on, so many ladies come through treatment and never look back, it does become a distant memory , it’s certainly not the first thing on my mind any more, I and many others here stick around this forum to try and help and not because we are struggling to move on.
Things will get easier, once you know for certain what is happening , what treatment you are having and when then you will feel you have regained control but in the mean time it’s ok to feel scared, anxious and angry but don’t try to second guess what is to come, deal with it as it happens, no amount of fretting is going to change anything and for the most of us the worrying is needless as things are generally straight forward.
Xx Jo
Thank you Kateday for your reply. You sound like you have a great attitude towards the situation we find ourselves in. You could be right about the waiting making things worse, I’m sure you are right and perhaps after Tuesday I will feel a little more positive. I started out with positivity and friends and family couldn’t believe how well I was doing mentally. But since the setback with the clear margins and its size i seem to have gone downhill. I am glad I have found this forum everyone seems to be really supportive. xx
Jobey68 thank you so much for your reply. I was beginning to think I wouldn’t mentally survive the treatment and I thought perhaps it was only me ‘struggling’. It sounds like you struggled too but have come through it and out the otherside, which is really good to hear.
I have my moments when I nearly fall off the stay positive side
We all do
The thing is this group will help pick you up
When I got my results it was a mixture of emotions clear margins clear lymph but triple negative and it had grown quite a bit
I drove home with the feeling that everybody does
Is this really happening to me
I’m going to fight it and it will come back
But I walked in my door saw my kids and remembered to just smile for them
We had our tears at diagnosis and more will come but with the support of this group you can manage day by day
Read mai link I did and it helps
I found the first part diagnosis was just how I felt and many many others
My next stop is chemo maybe starting next week xx
Hello Rosie,
My goodness!!! I so resonate with how you are feeling just now. I too had invasive lobular cancer, and I too had to have a second op due to clear margins not being achieved. I was also told before my second op that I would only require rads, but for me, that changed and I was offered chemo. It was up to me to accept this or go with rads only. After talking things over with family, I decided to go down the chemo option. I can now honestly say that chemo wasn’t as bad as I thought, and I’ve never regretted my decision to go ahead with it.
All ll this happened for me in November 2013, and I have just been discharged from my cancer team and feel fab. Going through all this ? is so hard, but there is a light at the end of the tunnel!! Hang on in there!
Not it sure how big your tumour was, but bear in mind that us lobular ladies normally have larger lumps than ductal ladies due to the fact the they’re difficult to detect and don’t alway show up on mammos.
Sooo, as someone 5 years down the line, I wish you all the best with your treatment whatever it may be. Take care and big hugs, Ann X X X
Sorry, forgot to add that my mum had breast cancer way back in the 80s and is now a wonderful 82 years young, so, yes there are people who live a full life span and more after a breast cancer diagnosis. Hope this helps X X
Mai7 thank you for the link. I read your blog and like you, I don’t tick the bc boxes. Don’t smoke, don’t drink, eat healthily, exercise regularly etc etc.
Kateday good luck with your chemo, do keep us informed how it goes.
Ann wow, your mum is amazing. I did read somewhere that lobular cancer is harder to detect, and often doesn’t show up on a mammogram. So, I can’t understand why, if this is known, they didn’t MRI my other breast at the same time as the one with the tumour, or even ultrasound it rather than only a mammogram. I am petrified that it’s in the other breast too but not showing. I did ask and the consultant said they had no concerns about the other breast. I think i will mention it again on Tuesday.
Another issue I have is being hyper vigilant about my aches and pains. Do or did any of you worry about aches and pains that you get? I am finding that I have a aching back and what feels like a bruised hip bone (not banged it) it’s been there a while, well a few months. GP didn’t think it was anything to do with bc and said she would send me for blood tests as this would reassure me! Umm, sorry but it doesn’t. The breast care nurses said unlikely to be anything to do with bc as it hasn’t spread but I’m petrified they are wrong it has spread. I have lots of other aches and pains that are concerning me, but I won’t bore everyone with them! I guess this is just another ‘side effect’ of a bc diagnosis. xx
Another query…anyone had trouble sleeping whilst going through the process. Does it get better? I’m desperate to sleep a full night. I don’t have trouble going to sleep but can’t stay asleep! I can sleep from about 10pm until 2am then seem to be awake the rest of the night. Please tell me it settles down as it’s causing me a lot of anxiety. The antidepressants I have been prescribed are for helping with sleep issues. I’ve also got the Headspace app. So I am trying ? xx
Sorry everyone I’m having a really bad night and my mind is awash with fears. I really don’t feel I can talk to friends and family anymore I don’t want to worry them more than I have to. I just go over the same old things again and again. So I’m sorry but going to have to share my fears with everyone on the forums.
Currently going through my mind is that I will go mad through the anxiety and lack of sleep. Would you try to make up for the lack of sleep by sleeping during the day? I thought not as they say it will stop you sleeping at night but I don’t sleep at night anyway so surely if I can sleep during day at least I’m getting some sleep. Also running through my mind is everything that has happened to others on the forums will happen to me! That is, reaction to Tamoxifen, bad reaction to chemo, bad reaction to radiotherapy, secondary cancer which has spread through blood. You name it I can worry about it! Isad thing is I know it’s ruining my life and my husband’s but it’s all consuming at the moment. Strange though I didn’t worry at all about the two ops I have had so far. The actual procedures didn’t bother me, weird, as this is what most people would rationally worry about. I am feeling that this is no way to live whatever life I may have left. I really don’t know what to do with myself. ?
This stage is rotten Rosie but I hope I can reassure you it’s also perfectly normal.
Firstly the aches and pains you describe are all fed by the anxiety monster, I hurt everywhere and couldn’t see how it could be anything other than the cancer having spread, it wasn’t of course and when the anxiety began to ease so did the aches and pains.
Sleep became impossible, I would crash out for a few hours thanks to a couple of glasses of wine then wake in a state of panic and spend the rest of the night shaking and pacing the house, must have driven my poor husband mad!
Your body is on high alert at the moment and trying to make sense of what’s going on, we need answers and reassurance but no one can give us that 100% so it sends you in to a tail spin, I describe that time as the most brutal thing I have ever been through, I was lucky and only needed Radiotherapy so physically I recovered quickly but the emotional side was another story , I’m a strong women but it broke me and I was a wreck for months.
Our bodies can’t cope with being in that state for too long and your fight and positivity will begin to return, I began to feel more relaxed once I had results back after my lumpectomy and I knew what and when I would be doing treatment wise.
I was 46 when I was diagnosed, my mum had died from breast cancer 12 years before so I was convinced that was the way I was heading too, it was a really dark time and I’ve never felt so low not even when I lost my mum, I now have so much more understanding about breast cancer that I know those weeks spent in so much fear and panic were for nothing as none of my worst fear were ever realised.
I apprecate every day now and make the absolute most of the things that have happened since my diagnosis, my children have married, my first grandchild has arrived, I don’t spend my days worrying, I enjoy life and get on with living, you will get to this stage I assure you Xx Jo
hi Rosie,
As Jo says.
Just to say, the prospect is always far worse than the reality. Also, in respect of treatment, those having problems will obviously post, not those who are doing ok.
I too got very anxious about hormone treatment after reading experiences here, but it is not representative of all of us & the majority of us manage it fine or at least find it manageable. I’m on tamoxifen & haven’t had any significant issues with it. As ever, we don’t know how we’ll be till we try it, then we can deal with any issues if
they arise.
It does get better!
ann x
Thank you Jo and Ann for your wise kind words. What would we do without people like you. I have managed to drag myself to work today and managed to stay awake and be fairly productive!
The middle of the night provides too much time to ponder all the ‘what ifs’
Thank you again xxx
Those dreaded ‘what ifs’ certainly do pile in at 3am, Rosie. it’s not called ‘the hour of the wolf’ for nothing!
Looking back at your first post, there’s every reason to be very positive about it all - you can certainly believe that everything will be ok. Honestly, the normal outcome is that this is a horrible blip in our lives & nothing more than that.
The vast majority of us recover well & get back to our lives again. Outcomes for bc are now some of the best around.
It will all be ok!
ann x
Hi
The sleepless nights are completely normal I went a few weeks falling sleep then waking early hours and could never get back sleep
I promise as you get your head round it and a bit of a plan sleep slowly comes back
Now I just wake early the morning off my next appointment
I actually learnt to stay away from forums and groups just before I went to bed helped as reading them just kept it all so fresh I’m my mind
I know Friday I will awake early and Saturday I will definitely be awake early as going to chemo ward to meet them all
These people on here are just amazing
There full advice and there is a lot who are survivors and from what I have seen come back here to cheer on all of us xx