waiting!

Hi

I have been diagnosed with lobular breast cancer in my left breast. They have reccomended a masectomy, possibly 2. This is bad but worse is knowing that they are looking for more. I’m booked in next week for MRI, CT and Bone scan, which is terrfiying.

Lots of people keep telling me how great the treatments are and how positive the outlook is and to be perfectly honest if it is restricted to one masectomy i will be delighted!! But the thing that is haunting me is what if there’s more? What if it has spread?

The statistics were all stacked in my favour: 41, no family history, went as soon as i found the lump, healthy; but now i don’t have this confidence, i am convincing myslef that it is everywhere.

Any suggestions about keeping my sanity? Have a lovely husband, 15yr old daughter and 6yr boy, it seems so unfair on them.

Sorry for rambling - better out than in i feel!

Hi there

Just to reassure you (I hope) all these tests are standard if you have lobular. I have ductal but was told if it had been lobular I would have had all these scans. It is because with lobular there is the possibility of it being or coming back in either breast hence why you were told you may need a double mastectomy so they may be looking for LCIS - lobular carcenoma in situ which are the pre cancerous cells that lurk in the tissue before turning into invasive cancer which is they type that can spread. so - Try not to be alarmed. you are getting all the diagnosis tools you should be so don’t read anything into that. I am 44 so totally undertand your worries for your future - I have a 4 year old!! - will I be around to see them grow up etc etc. everything you are feeling is completely normal. When I got diagnosed & especially when my lumpectomy failed margins weren’t clear & I had to have a second op for a full mastectomy with node clearance!!! - I and my husband were both convinced that was it - no future - these feelings and fears are what most people on here feel. The initial shock plus the waiting are so hard to deal with. I PROMISE you it does get easier. As time goes on and you get more information plus start treatment you will settle down & move from the shock & disbelief & panic to a more manageable emotional state. You sort of just start to get used to it somehow.

You are right with your better out than in attitude - you will possibly cry a lot, scream maybe but it will get better.

One question - do you knwo yet if any of your nodes are affected? Mine were and so I am too now waiting for all these scans to be done but as I said with lobular cancer they are standard practice from the start.

I do hope this helps. Try if possible to distract your self when you can - I knwo the waiting seems endless but in reality they do process Breast cancer people very quickly compared to others & there is a lot of support out there too so use it. I have found this forum invaluable in helping me so I hope it can help you too.

Best of luck & if you need to share anything this is a lovely safe place to do it where we all understand what eachother are going through
XXXXXXXXXXXjoXXXXXXXXXXXXXX

I’m very new to this forum just dx on 12 November, (2 weeks ago and it feels like years). My dx was very quick, one-stop breast clinic, arrived at 9am and knew by 1pm! However, since then, I’ve had no info. So I can totally identify with you! Had a MRI scan on 16th, and the hospital contacted on Wednesday to ask if I could attend a plastic surgery appt this Tues (not back to see my consultant for another week). So I don’t know what type of cancer, if it’s in my lymph nodes (they took a byopsy on the 12th) and although, like yourself I thought all the signs were good, very small lump, no history of bc in family, fairly fit, I’m now begining to get anxious. Did phone my bc nurse but she is on holiday and it’s not policy to give this type of information over the phone. It’s the waiting it drives you cray. I’ve just tried to keep going, still working, still going out with friends as I was determined I wasn’t going to let the cancer ‘take over’ all parts of my life. Sorry this is a bit rambling and possibly not very helpful - I guess I’m just trying to say your not alone… Sending you cyber hugs ((())) and positive thoughts, Donna xxx

Hi there - so sorry you’ve had to join this not so exclusive club. I didn’t have lobular - mine was ductal, but I do know that many other women on here have been sent for all the same scans, and it is to give them a full picture of what is going on with you - it doesn’t automatically mean that your consultant thinks it has already spread.

Of course you’re terrified, who wouldn’t be? And you’re right - you went straight away to get checked out, so there’s every chance you’ve found it early enough to catch it before it spreads.

I’m also 41, I’ve had a left mastectomy and axillary node clearance - my tumour was Grade 3 (aggressive), so it’s chemo for me next - but despite the spread to the lymph node, and the aggressive nature of the cancer, the prognosis is very good - the treatment is harsh but it works - you can do this. We are all here to support you.

I have four children - 16yo son and 3 daughters aged 15, 7 and 6, and a great OH - and it is unfair - on all of us - but we’re all getting by. Keep talking to your family, make sure the kids know it’s fine to ask questions, and reassure them that cancer is not always a death sentence - unfortunately, the children are bound to be told stories of other kids’ relatives who didn’t make it - so make sure they are not panicked when they hear this. And above all - find little things to laugh at each day, and hug each other. You’ll be fine, and so will they. My 15yo daughter cried buckets to start with, but because we talk and talk (and talk), she’s much more relaxed about it all now - and coming hat shopping with me tomorrow before I start chemo and the hairloss kicks in…

Huge hugs - where you are at the moment is by far the toughest part - all the unanswered questions and the endless waiting - once you know exactly what you are facing, it will all fall into place and you will start to feel you are fighting back instead of sitting there waiting for the axe to fall. All of us on here have found the waiting so difficult - you are not alone in this.

Sophie xxx

Hi to you all and thanks so much.

The support everyone shows on here is amazing and restores my faith in the human race.

Have had all scans now and await with baited breath for tuesday and the results.

In the meantime I am trying to carry on as normal, although i have given up work for the mo’ as i’m a primary teacher and didn’t think it fair for the kids to witness a real life break down!

It’s wierd isn’t it. One minute you can be fine then something little will set you off and before you know it you can spiral into total panic stations. On the whole i’m quite fine and dandy in spirit (well possibly only ‘dan’ as opposed to full on ‘dandy’)but even so.

Also other people - i feel guilty telling people and end up apologising. I do allow myself to cry and shout and swear but feel the stiff upper lip coming into play around others. My husband is lovely we have been married nearly 2 years (2nd time for us both) but he is so used to me being perky and on top of things - i worry about how he’ll be when I’m not. By 8 ‘o’ clock i’m coming to the end of my day but he tries to cheer me up by telling me to be strong. I feel like saying that i have all day but now worn out, but i don’t.

Does anyone know of anywhere i can get advise about how i can help him or where he can get support?

Thanks again, i think this site will help me through this unwanted journey and with time and experience i will be able to help others.

K xxxxxxxxxxx

BCC do a leaflet that gives advice to partners on how to cope/help someone cope with a dx - if you look on the main part of this site you’ll be able to find where you can order a copy - all of the material on here is sent out for free, and is very useful. I got a copy for my OH to read, and it told him just enough to start him off, before we got knee deep in treatment plans!

There is also an area on this forum for partners and families, so if you think he’d like to talk online, he’s also able to do so - and if he needs advice on how to treat you… he’ll get it in spades, hehehe!!

I do often think it is much harder for my OH than me… I’ve just got to get on and beat this crap, he’s got to support me through it, but can’t really ‘do’ anything - and I know for a lot of men that that is really, really difficult. Do keep talking to him though - go ahead and tell him that by 8pm you are through being strong, and want to melt down - I’m certain that there’s enough ‘ug cave man’ in there for his protective instincts to come out and just let you wail, while he can be strong for you. It’s such an alien thing for most of us women to do these days - but we are allowed, you know!!!

I was useless at telling people - went with the whole ‘you asked, I’ll tell you…blurt’, felt like I was doing fine, but leaving a trail of destruction behind me, then felt guilty. So do sympathise. Stopped feeling guilty now tho - just advising people not to come running up to someone they haven’t seen in months crying “How ARE you??” cos they might not like the answer… :wink:

Sophie xxxxx

(I only got dx in October… it’s amazing how fast you get back on top, and have the capacity to talk others through it - this is a wonderful forum xxx)

Hi staycalmandcarryon,

Here’s the link to the publication that triphazard99 suggested.

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/15/

Hope it helps.

Jo, Facilitator

Hi K

I had to reply to you as reading your comment seemed very similar to me, I was diagnosed on the 9th Nov after finding a lump (although i never at all imagined it to be cancer and I still find it hard to say)!!
I also work in school as a lsa in a year one class. At first i really did not cope dealing with 30 hypo children so i took a week out but i then realised that those children make me smile so much that i wanted to return which i did. I am having my last day tomorrow as i am having a lumpectomy on tuesday. A week later i will find out the results then its rads but not sure of chemo yet!!! God what a roller-coaster - up, down, up, down… Soo scared never had an op in my life (43) and now dealing with this… Oh well keep your chin up you hear people say:) sorry if i am going on a bit but sometimes you just feel you need to.
Well I hope your results go well on Tuesday, you take very good care of yourself :slight_smile: :slight_smile:
Sorry I cant recommend anywhere for your hubby as my hubby has not had support either but hey we support each other… My hosp and bc nurse have been lovely and yours maybe able to recommend someone for him. Take care
K xxx

Hi

Just wanted to say your certainly not alone with all your worries and fears. I was diagnosed on 22nd oct. told i needed left mastectomy and all lymph nodes removed but needed MRI first to check right side. Waited 2wks to then be told MRI wasnt neccessary!!! Op took place on 22nov. Now waiting very impatiently for results. Not sure if any further tests needed. Maybe results will determine that.

Advise- keep busy, talk on here, ring BCN if getting anxious and eat lots of chocolate.

Keep chatting it does help and keep smiling
Deb
xxx

Hi

Day before D-Day when the results are coming back in.

I am now totally convinced that i have it in my liver. Gone through motions of thinking it’s in my lungs, done bone and now on liver. It’s driving me mad.

I’m thinking this because of a pain i keep having on left side, round the ribs somehow and stretching into my my back a little. I keep getting a pain in the back of my shoulder. Is it bruising from the biopsy??? Is it cancer??? I’m driving myself around the bend trying to find things on the web that can explain these pains but no luck. Did anyone else have these pains after a biopsy and lymph tests with syringe??

Where has my life gone?

x

Hiya, I didn’t have that sort of pain, but it doesn’t mean no one else on here did, so try not to panic too much. I know, I know, it’s like telling you to stop the tide coming in, but do try.

All the very best for tomorrow, please come back and let us know how you get on, I’ll be thinking of you and keeping it all crossed. Today really really should be the worst part - at least once you know what you are facing, the treatment kicks in and things start happening… and you will feel so much better. It’s the impotence of having to hang around and not being able to make things happen, that’s the killer, so the emotions you are feeling right now are absolutely normal and understandable.

Big hugs, hope to hear from you soon

Sophie xx