Just diagnosed with invasive lobular and really scared

[Dolly78]

I’ve just read your story Mai and it’s really given me hope. Thank you for sharing xx I will look up the chemo threads, I am starting chemotherapy on Monday xx

[Mai7]

Dolly, I had 8 rounds of chemo, it's doable. Here's my story which I hope you find helpful: http://lifeafterlola.blogspot.co.uk/

i enjoyed joining the monthly chemo thread to chat with others going through chemo at the same time and definitely recommend this. Best wishes  Xxx

[Dolly78]

Thank you for your kind reply Ann, I really appreciate it xx

[ann-m]

Hi Dolly,
Yes, it is procedure, the team needs to have all the information available to get the treatment plan right. It does vary between us all, but they are only being thorough & as the nurse says, it’s good the ct scan was clear.
Others have certainly had chemo first as well, so try not to read anything into it.
When you start chemo, do go to the ‘chemotherapy monthly’ threads as well as the chemotherapy thread where you will be able to chat & get support from others who are where you are & others further along to road.
Sending hugs
ann x

[Dolly78]

Hi, hope you're all doing ok xx Thankfully my CT scan was clear and just showed up in the breast and local lymph nodes. After seeing the surgeon it was decided I'll be having chemotherapy first before surgery. He said this was because of my age, the type of cancer I have and because the lymph nodes are involved. Has anyone else had this? I am going to be starting fec t in a few weeks. Really worried about how my body will cope and how bad the side effects will be. Also I'm having a bone scan on Tuesday which the breast nurse has told me not to worry too much about as my ct was clear but I'm still worried! Do anyone know if it's the procedure to have a bone scan and a ct together? Xx

[ann-m]

Hi Anne, ...& you’ll be the same, we’re just further down the road, that’s all

ann x

[Anne30]

You sound amazingly strong to me not going to google. I did endlessly in the days after diagnosis and it wasn't healthy. I am so struck and inspired by the way peolpe on this forum are getting on with their lives. 

[zena75]

Hi
I was diagnosed with lobular bc , and lymphs involved in Dec 16 .. I’ve had a year of treatments, Chemo , herceptin, radiotherapy and 2 lumpectomys
My Chemo was paclitaxil weekly and it worked very well and shrank tumour so much I only needed lump removal, the first op didn’t get enough of a good margin ( clear range around original tumour) but second did , 3-8 nodes taken were affected .
It’s been a hell of a year , some of my worst moments ever but also lots of joy and good times ..loosing your hair is **bleep** there no softening that blow!
But I’m back to a realistic normal now and feel good.
It’s so hard in the beginning but it does get easier I promise.
Don’t let stuff scare you too much and keep strong when you can and lose it if you need to ( we all do that ) .
It’s so crap but it’s not the end of the world yet so just fight Hun.
Hope this helps .
( hi Ann-m ) xxx

[ann-m]

Hi Emmalou,
Going through all of this is ‘pants’ & loads of us have been where you are at some stage.
Your team will do any necessary investigations, all of our situations are different & require different things, but do keep asking your team about anything you need clarity on.

Not all of us have MRIs with a primary diagnosis, those of us who have a lobular bc diagnosis, will usually have one, as this type of bc is harder to see on standard imaging techniques & the surgeon needs to be clear about what surgery is required. If the diagnosis is ‘ductal’ bc, then it’s not likely to be necessary.
My understanding is, that CT scans are not usually done if there’s not evidence of any node involvement.

Google is a wonderful thing & there is a time & place for it. Ironically, I reacted the opposite way when diagnosed & avoided google like the plague as I didn’t want to scare myself. I just relied on what the team told me. Once everything was confirmed & I knew what I was dealing with, then I became curious & felt ok about googling. In hindsight, I’m glad I reacted this way.
Do take care
ann x

[Emmalou66]

I’m the same with the googling. And the same feelings of  I’ve got through worse but then actually THIS is the worst, I’m not going to get through this! I’m waking up thinking about it going to sleep thinking about it dreaming about it. I’ve had to stop myself from reading all the stats etc.

Does anyone know what determines whether you have a ct scan or mri? I’m so confused about everything! 

Fairydust gave some good advice about having a bit of self compassion I’m going to work on that, but as soon as I do I just burst into tears! 

[Fairy Dust]

That should have said "can access it". Cash is handy, though, as I've paid for a couple of sessions as well and now I'm practising, really practising! 

Something you can google is " self compassion". I've also paid to see a clinical psychologist and she suggested it. It's the control freek in me, trying to make sure I stay sane through this. I'm fortunate to be able to do this a little bit, particularly as the support we get with the NHS is rubbish, minimum 3month wait. I'd have been a complete basket case by now if I'd waited for them. Just a pity I can't afford to do the whole thing privately, as I'm sure I'd be sorted by now. Anyway the self compassion thing is important. I didn't realise how horrible I could be with myself. I was admonishing myself regularly for the way I was feeling, when I would never have said the same things in the same circumstances to a friend. We must be kinder to ourselves ( I'm trying to listen, myself, to what I'm saying now), particularly now. Looking after our mental health through this is as important as our physical health (a point the NHS seems to miss). We aren't a disease, we are all good, strong, whole human beings and deserve to be treated as such. If you are going to google, look up things about the psychology of all this to help keep you strong. Xxx

[Dolly78]

Thank you for all your replies it really does help to hear from you all xx I'm finding at the moment Im varying between feeling positive and thinking I'm going to beat this to oh no I've had it! I don't help myself by goggling either, I know I shouldn't but when the doctors mention something I don't understand I googled it before I've reach the car park! Obviously my main worry this week revolves around my CT scan. Just hoping and praying it hasn't already spread and I've got a shot at this. It's all just so crap 😞 xxx

[LindaBag]

Hi,

I completely understand what you are going through. This time last week I was waiting for the results from MRI, bone and CT scans. I to had convinced myself that it was going to have spread. I now know that fortunately this is not the case. I think we are going to have to get used to waiting for news for the next few weeks/months. I am due to have a therapeutic mammoplasty op on 8th March so hope this goes ahead as just want to get on with things.

Last Sunday I felt terrible but you will feel better when you know what they are going to do to sort you out.Hope you get the answers soon but in the meantime try as much as possible to relax/ I know that is easier said than done.

Best wishes,

Linda x

[Emmalou66]

And I think it counts to one of your 5 a day?!

[Fairy Dust]

Yes, Dolly. I have 4 areas in the one side.

I've had one or two meltdowns, which would not normally be my character. I went to my local MacMillan Centre and a wonderful lady there sorted a couple of hypnosis sessions for me as she thought I was heading for a mental crisis. I was very sceptical, not the sort of thing I would usually go for, but I'm completely converted. I'm learning deep relaxation and it really does help, there are also recordings on you tube you can use. It helps with sleep, particularly when you wake in the night and cancer is all you can think of! It is helping me to take control when things get too much to deal with as well. I take myself off and do one of the short ones to get me back on track. It doesn't mean I get rid of the bad feelings all the time, but it does give me a break and can bring me down from the major meltdown points. May be worth a try if you cash access it.

[ann-m]

Well, I have read recently, that red wine is probably the best one to have!!!
Cheers 🍷
ann x

[Emmalou66]

Red wine red wine! It at least helps induce sleep. ( and stops the time bomb actually exploding) xxx

[ann-m]

Hi Dolly,
Honestly, you are not alone, there are loads of others here who have been where you are now.
The early days after diagnosis are the worst as it’s a shock & a helluva lot to process, but we do get through it & once the treatment plan is confirmed, it does feel better.
Inevitably, the mind goes into overdrive with all of this, but there is loads that can be done & treatment is very good now.
Although we would all rather not go through this, thankfully, it has been diagnosed & can now be treated.
Do come & vent or chat whenever you need to & do look at the ‘going through treatment’ board when you start treatment. There’s loads of support here from those of us where you are now & those of us further down the road.
Sending hugs
ann x

[Dolly78]

Thats exactly how I feel Emmalou! like I am a walking time-bomb waiting to blow up at any given moment! I am so exhausted with worry I feel like I'm making myself feel ill! Thank you for your message it really helps to know Im not alone. Sending you healing hugs back and lots of positive thoughts xxx

[Dolly78]

Hi Fairy dust, thanks for your message. I know what you mean about not daring to hope for positive news, every time ive been to the hospital I've had a bit more bad news given to me. I am petrified of going back again next week!
I have been reading lots of older posts on here and do find it helps. Does multi focal mean lots of areas? I just feel so overwhelmed by it all. Hope all goes well on Monday for you xxx

[Emmalou66]

Hi.

oh my love I’m there with you! I was diagnosed a couple of weeks ago after a routine mammogram, I had biopsies and then an mri to determine exactly what was going on and what surgery would be required. I should have been told yesterday but I got a call on Thursday to say I need further scans etc as they had picked something up in my other breast!!

i am terrified that they are going to want to give me a double mastectomy, wondering if my whole body is riddled with disease and am I going to die soon! 

The waiting between tests and actually getting the results is torture. 

And I cannot believe how my life has spiralled out of control in such a short space of time.

My poor partner is getting to see me in a very different light and I know he’s feeling for me but I’m such a bad tempered cow at the moment I fear he might turn round and say he can’t stick it. 

Im going through every “worse case” scenarios in my head I’m exhausted!

if by sounding off on here helps in any way whatsoever, then we must do it! 

Im sending you big hugs and hope that things start to get easier for you. Xxx

[Fairy Dust]

My typing, fat fingers on tablet, is rubbish!!

[Fairy Dust]

Just spotted your new message and wanted you to know you aren't alone. I was diagnosed on 21 December (happy Christmas). I've had a number of biopsies and have multi focal in my right breast. Hoping to have mastectomy with reconstruction soon as I need itvout of me. Having sentinel nodes done on Monday.

I seem to look on here when I'm feeling low. I read a lot of the other lady's stories, many of whom have come through tjisvand are on the other side. We are at the start and we don't have all the answers we need. We may not get the answers we want and I know that's what scares me. We've already had one answer we didn't want. It's almost like I daren't wish for the best in case I tempt fate and get slapped down with more bad news, so I try to prepare for the worst. I try to listen to what the more experienced ladies say on here in my saner moments. They really do have some good advice. It's just a pity any if us have to be on here at all. 

I just wish I was a real fairy and could wave my magic wand over all if us. Xxx

There

[Dolly78]

Hi there,

This is my first post on the site I have just been diagnosed and I'm really struggling. Wondering if anyone is in a similar situation to me or has been in the past and can share any experiences or just to say hi to help me feel less alone. This is my story so far...

I am 39 years old and I found a marble sized lump under my armpit at the end of jan, I was diagnosed yesterday with invasive lobular cancer. I had already been told I had breast cancer a few weeks prior to this when I received the results from the biopsied axillary node. They could tell me it contained breast cancer cells but nothing else until they found the actual cancer. During this appointment I had a mammogram which was clear and an ultra sound which showed only showed up a small 5mm lump. A biopsy was taken and an MRI was arranged.

Yesterday brought more worry... the small lump had come back as invasive lobular but the mri had also highlighted other areas in the breast which looked suspicious. I had another ultrasound and with 3 different doctors coming in to look at the scan. To be honest I think the snow and amount of cancelled appointments had a part to play in this but never the less they all had a look. They all seemed to be really unsure but agreed they could see something so took several other biopsies to make sure they got the area covered. 

The doctor explained than because of these extra findings I would probably have a mastectomy rather than a lumpectomy but they had to show than the cancer was in other places first to justify this. I realise that this would now take what they originally thought was a grade 2 to a grade 3 but at the moment I am just so worried that it has already spread beyond this. 

Because of the snow and that the hospital was so quiet the breast nurse managed to arrange a CT for me yesterday while i was there. So now I am just waiting again.. The doctor also did say the the CT can bring up lots of red herrings which turn out to be nothing so now I'm not sure I will get a true answer or not even with the result??

So what I know is that i have invasive lobluar cancer, definitely with lymph node involvement and most probably in other areas in the breast which I know can be a factor with lobular.

Is anyone in a similar position or has been in the past? I am just so scared and worried there will be nothing they can do. I really can not believe how my life has turned on its head in just a few short weeks! I do actually feel a bit better after writing all this all down...although that could also be the wine! Thank you to anyone for reading this  xx