On Tuesday I was diagnosed with LCIS after 7 operations over 2 years. I am totally confused, scared, angry and feeling very lonely.
I’m haveing an MRI in the next 2 weeks to see if is in the other breast and then a course of radiotherapy.
My initial reaction was to have both breast removed and to be honext I’m still in two minds as to whether thats what I should do.
I have told all my closest friends and they have been very supportive. My Mother has been amazing! My Dad has yet to comment and that hurts even though we aren’t close. I told my 2 oldest children (15 & 12) but how do I explain to my 4 years old?
I really want the MRI out of the way so I can start to come to terms with this.
And I really need to talk to someone that is going through the same thing.
Anyone?
Kam x
Hi Kam,
I was diagnosed with invasive lobular cancer last Feb and extensive LCIS in both breasts. I had a mastectomy of my left breast only, cos that was the one with the tumours in. My surgeon felt that to remove both at that time would mean a longer healing time which might interfere with needing chemo. As it happened, I didn’t need chemo.
I could have mammograms and checks twice yearly to monitor the LCIS in my remaining breast, but I hate mammograms! I also feel very unbalanced with just one breast and have a large scar so wearing a prosthesis is uncomfortable. So I am having the other breast removed in April. I felt that removing it would improve my chances of not getting bc again. Everyone is different as to the choices they make. It’s your life and your body.
I’m sorry that you feel hurt by your dad’s reaction. Some people can’t cope with the ‘c’ word. I’m sure he cares deeply but doesn’t know how to react. I’m not close to my dad, but my mum told me he cried for the first time in years when he heard about my diagnosis. As for your 4 yr old - you’ll find the right words. Children are very sensible and practical when told things (I was a teacher of young children for years).
This is a great forum and everyone is supportive and friendly. If you need someone to talk to, can I recommend calling the helpline? The ladies there are so easy to talk to and you can share how you’re feeling without worrying about what they think. I’ve called a few times and felt better for it.
Hope you get the support you need to make your decisions.
Big hug,
Jacki xx
Dear Kam
Firstly, welcome to the forums, I am sorry to read of your recent diagnosis. You may find our helpline useful to call during this time as Jacki has suggested, they can help you through this difficult time, listen to your concerns and offer information, advice and support. The number to call is 0808 800 6000, Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.
In addition, Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:
breastcancercare.org.uk//content.php?page_id=7514
You may also find it helpful to look at the Breast Cancer care booklet ‘Talking to your children about breast cancer’. You can find this at the following link:-
breastcancercare.org.uk/docs/talking_to_your_children_about_breast_cancer_0.pdf
I do hope you find this information of some help.
Best wishes
Lucy
Thanks for your reply Jackie & Lucy,
I have started to tell a few people most have been amazing and so supportive. I think my husband is finding it quite hard to deal with although he has compared how worried I am to him having problem with his heart last year, another very worrying time for us all luckily he was ok. As for my Dad, I saw him briefly yesterday and spoke to him on the phone and he didn’t even ask if I was ok or mention it I’m so angry with him. I work in a school and have told a few of the staff that needed to know, should I tell the rest? they know somethings up as I spent alot of time in my office last week alone rather than being the sociable Kam I normally am!!
I have been thinking about a masectomy my consultant said I could have a double with reconstruction but he didn’t reccommend it as I’m only 39.
I’m 4 stone overweight and someone has said thats probably why I have this, is that true? could my weigh be the cause. I have had 7 operations on my breast in the last 2 years to remove my ducts and a few lumps, could that be the cause?
My mind is all over the place at the moment. I know I’m lucky it was caught now and I’ll be checked for the rest of my life and that it may never turn into cancer but I feel so scared and very alone despite having a great group of friends and family.
Kam x
Breast cancer pre menopause is more common in thin women, after the menopause the reverse happens, so I don’t think the weight is necessarily a factor. Oestrogen levels are higher in fatter women though. Not that beating yourself up at this point is going to make any difference but I felt the same way. I was convinced wearing a bra that was too small one weekend had caused it. LCIS is only a risk factor for getting breast cancer so if I got it I would definitely not have surgery but it depends how risk averse or not you are. Research has been done that has shown that having lumpectomy rather than mastectomy is as effective for breast cancer for tumours which are small and stage 1 disease - you have stage 0 disease which is more favourable. So I wouldn’t rush into having a mastectomy thinking this will automatically cure you.
There is a slight relationship between some forms of benign breast problems and getting breast cancer so the fact you’ve had some lumps previously may be a factor. The condition to look for is atypical hyperplasia which means having more cells growing than normal, with an abnormal appearance. There’s afine line between this and DCIS - which is ductal carcinoma in situ, this means the duct has cancer cells in it but they haven’t spread out of the duct. LCIS is lobular carcinoma in situ and is an indicator you may get cancer in the future. Most people with DCIS and LCIS don’t go on to get cancer. So having surgery is a precaution. I think I read that about 70% of cases where it was misdiagnosed and not treated did not go on to the cancerous stage.
So I would opt for the least treatment
but it’s obviously up to you
I thought I’d act a link to information on this site about LCIS
Thanks Molennium,
Still up in the air as what the next step is. Had an MRI on Thursday and going back for the results of that on Wednesday this week.
Have managed to alienate my Mum after saying I wanted to go alone to see the consultant last week before the MRI. I was hoping I could ask her to come with me on Wednesday but now I’m scared to ask her to come, so looks like I’m going alone 
Kam x
Hi Kam
Sorry you have had to join us, good luck for Weds, try and sort things out with your mum, we all say the wrong things when hit with something like this. Hope it all works out for you.
Sending Hugs
Karen
XX
Thanks Karen,
I’m sorry I had to join you as well…but the info and support is amazing.
Mum…is ok now I just can’t bring myself to ask her to come with me. Hubby is working Wed so he can’t come and most mates away for half term. My eldest son said he’ll come…bless him. But I suppose I’ve been to every appointment over the last 2 years alone one more won’t hurt.
I will let you know how I get on.
Hope your ok.
Kam xx
hi there hope you are ok I was diagnosed with LCIS in dec 2007 I am having double masectomy on april 9th with reconstruction, so not long to go I’m very nervous but happy it is going to be done peace of mind and all that.
hope you keep positive i no it is hard.
take care love gaynor x
Thanks Pebbles.
Had my results on Wednesday. LCIS confirmed in both breasts with slight spread. Also, found two other suspect area which I had biopsies on results on Tuesday.
Really down in the dumps at the moment. Feel and look rough!
Kam x
Hi Kam
Sorry you are feeling down in the dumps - goes with the terrortity Im afraid. This rollercoaster ride is defintely no fun.
Do you know what your treatment plan is or are you still just letting it sink in about the dx. Come on line and talk to us if you think we can help.
Sending you tons of hugs and love
Karen
XXX
Hi Karen,
No treatment plan as yet, meant to be discussing on Tuesday dependant on results of my biopsies. Under two different hospitals as one wouldn’t do MRI on me! Back to regular one on Tuesday. Last time I was there, when I got my diag I was rather shocked and upset so apart from asking for a double masectomy and being told that was out of the question and that I may to have a course of radiotherapy. I have no treatment plan as such. Plus things may change now I have had the MRI. Totally all over the place and finding it hard to talk to even my closet friends about how I’m feeling at the moment. I’ve put up the barriers and am putting on a brave face when really I feel very alone, confused and scared.
I can’t remember the last night I slept right through without waking up crying, I’m so tired.
What have you had done? if you don’t mind me asking.I’m not sure if I can look up previous posts of yours, not quite used to this forum yet.
Kam x
Hi Kam
Firstly go to your GPs and ask them for something to help you sleep, yo will be able to deal with this so much better if you have some sleep - not a sign of weakness a sign of taking control of your own sanity!
My story is found lump 1 Nov saw gp 2nd Nov finally got referred 21 Nov had core biopsy and was told then that it looked cancerous. Results 28 Nov confirmed original dx and wle snb for 13 Dec. Results 9 Jan no node involement, grade 3 IDC no clear margins back on 31 Jan for Mast. Results came back as clear margins and now starting chemo next Friday 29 Feb - Thought I would hate the idea of this but now just want the b********d zapped out of me if it is still in there.
I completely understand about talking to friends I constantly say Im fine when Im not but it is what they want to hear my BF pulled me up on this the other day and said I know this is not how you really feel so I told her I was feeling absolutely sh*t, useless and totally fed up, she really appreciated my honesty and I felt better for getting it off my chest.
There are no rules with dealing with this so dont think there are if you feel rubbish come on here and say everyone will know exactly where you are coming from having been there themselves and got the t shirt so to speak.
Hope this helps Kam
Sending hugs
Karen
Karen, you sound like one very brave woman. I’m not sure I’m that brave. Maybe once I know exactly what the hospital are going to do I’ll feel more up to dealing with things.
I’m fed up with people wanting me to explain the ins and out of my condition and half wish I’d never told anyone.
My GP did give me some valium but I haven’t been and got the prescripton yet I didn’t think I needed them and he did say just in case.
But I do need something to make me relax abit. The glass of wine or two I seem to have started on this week isn’t working!
Kam x
Hi Kam
Thanks for the good wishes. Im not brave really you will find that once you know exactly what is planned for you and you can get some info you will feel more empowered which just helps you get on with it.
I tried the wine didnt work only take the tabs when I need them not all the time - I now sound like a pill popping alchie he he - if only.
Hope you are feeling ok today if you have any questions or worries just come on here and ask someone will always give you advise and a problems shared and all that.
Sending Hugs
Karen
XX
Hi Kam
Sorry that you have had to join us here. I was diagnosed with extensive high grade DCIS in Feb 07 and had a WLE followed by a mastectomy with imediate recon with a becker implant in March 07, I’m having a mastectomy on the other side on the 10th March along with further work on my previous reconstruction. My daughter was 4 years old when I was diagnosed and I simply told her that mummy had a bad bit in her breast that the doctor had to take away and she accepted it really well. She was really good with the drains I had in and with the plasters and has never commented on what I look like physically since which was what I was concerned about. She just took it all in her stride and even told her riding instructor (a man) that mummy had a sore booby and so couldn’t lift her up at the moment - I don’t know who was more embarassed me or him! I didn’t try and hide anything from her but at the same time didn’t give her any info that would scare her at all and she was amazing through out.
Also I got pills from my doctor when diagnosed and they really did help.
Take Care
Love & hugs
Debs x