Hi there

I had a 3rd umpectomy last week.  Seems a similarrish story to you.  Agree it is totally horrible getting this diagnosis and especially when the picture keeps changing and as you say feels like it is growing into a monster. It was far from greatwith my husband and he just seemed to be saying all is fine and it wasnt helping - my teenage daughter was better.  I have calmed down on the campaign to ditch my husband (I did honestly feel that I wanted to)  so I would say dont be too hasty on that front as you will need support and partners arent always at the best handling this stuff. 

I amd 56 and had intermediate DCIS 1.1cm diag on screening mammo (due to calcifications) - stage 0 - nothing to worry about blah blah blah -- back in early March and  a lumpectomy 23 Mar but margin was too small on one side so had another lumpectomy on 27 April and this showed up a 5mm invasive cancer g2 which is lobular and triple negative.  There was much discussion on what to do as this was 'highly  unexpected' and and unusual and had not shown up on mammo or ultrasound at all and neither had the DCIS - was described as a chance finding. I was also told i was unlucky (as if we arent unlucky enough to get BC in the first place !).  So much for screening mammograms ! MRI is definitely what should be used in screening IMO.  Anyway, I panicked and wanted a mastectomy or chemo but in the end I had a breast MRI which was aiming to show extent of disease - this showed things were clear in other breast and nodes and just area of post surgery change in the right so they decided to do another lumpectomy to try get a margin and also sample some nodes.  Had that last week and cosmetic result is ok - a bit more of a dent but thats all (I am an E cup or at least was as now would be smaller but it doesnt notice in a bra).  I dont have results yet to say if the plan worked. I may of course have more disease and nodes and have mastectomy anyway but if not then i may keep that breast or have the option to. I am not desperate to keep it tbh i just want to get rid of the disease so ultimately will do what it takes. i think I will be having chemo &  radi0 in any case. 

So maybe you could ask for a breast MRI to get a better idea of extent of disease and then decide?  its really hard being asked to decide when you feel you dont have the info to do that and i totally get what you mean. -i really hate it when they do that.

best wishes N

Thanks, Flossyn,  for your reply.it's hellish isn't it? You start off thinking you've got something small, early and slow then the goal posts start moving ... I've completely got rid of my goalposts now! 
 

so you've had your 3rd lumpectomy with nodes removed too? I had two sentinel nodes removed the first time which was painful but they were clear. I hope you're not too sore? Must be hard finding out you had DCIS and more cancer too. I can understand the thought behind just having a mastectomy. 
 

Hope your husband is understanding of the ongoing changes and seriousness. I had to go into work and Bert with a make boss yesterday to explain why my relatively straightforward single operation had turned into four! He was absolutely lovely - he promised to appeal for my full pay to be continued. Long chat with boyfriend today - tears on both sides - hopefully he'll get there. Not helped by his wife passing away with BC 7 years ago. We aren't having good luck at all.

Thanks for the MRI information. No one has mentioned that option. I'm meeting with the consultant tomorrow to sign consent papers and assess for a LICAP. I'll ask about MRI then. 
 

no Chemo mentioned - radiotherapy if I keep my breast, not needs if I have the mastectomy. 
 

I told both my teen daughters today - not fun. How are you feeling? 
 

E

Hi

What a shame you have such a wait . I hope you're BC nurses are able to answer any concerns or questions. Mine must be bored to tears of hearing my "what ifs...". 

Regarding your mastectomy - have you been given the option of having both breasts done? I can see how you might want both doing. It's good that there are so options and , as I understand, the door is always open for reconstruction if you choose to wait. 
 

I hope you're getting some support and advice .  It's hard making decisions, and such impactful ones.

let me know how you're getting on x

BC nurse was great but it was a lot of 'You'll hhave to wait to sppeak to your surgeon'.

Haven't been giveen option for both yet. I'll know more on Thursday. Nurse did talk about immediate reconstruction so it is done at the same time, meaning less scarring. But again, don't know until I see my surgeon. 

I'm finding it very hard at the moment. I'm not sleeping well and can't get it off my mind. Was given a leaflet about it - well - emailed to me. It's a lot to take in. I can send it to you if you like. 

How are you doing? Xx

Hi

Are you near to a Maggies centre? There's one near me and it's a lovely  place to visit even if it's just a for a cup of tea. I managed to visit a few weeks ago and spoke to an cancer health support advisor . They also have support groups and other things to offer. Apologies if you already know this stuff. I was going to join a group but I can't drive now and , like you, feeling a bit ️. 
 

you'll know soon what your plan is and hopefully you'll get proper answers and thoughts from an expert. It's hard getting through the days..  waiting is rubbish. 
 

i got a heap of information leaflets after my second results. I took a while to decide, rang a cancer helpline and had a separate meeting with my BCN. Then decided on 3rd lumpectomy with LICAP. Post op my cavity is filled with saline which makes an entertaining noise. But im aware it could go the same 'no clear margin' route and I'll be having mastectomy conversations. 
 

my surgeon told me to stay positive - very very hard to do. Hope you're getting through the days with some support and help. 
 

Laineybug x

OMG that wooshing sound in the cavity. I have to admit, I found it funny. 

Have found a Macmillan support group I might join but they meet evenings and I'm usually too knackered by then to go out xx

It's a definite party trick. Did you have the same? My life has definitely taken a bizarre turn !

The Maggies meeting were in the day but only once a month. Like you, I can't really go out in the evenings as I've got children. 

Mine filled itself up about a week after surgery. First noticed when walking up the stairs. Warning about it would have been good though. Did end up having a good giggle on the phone with BCN. 

Ahhhh right! Did it go away by itself? Bonkers isn't it? 

my cavity has been deliberately filled with saline to keep the cavity from healing up. if (big if) my results are clear then they'll take some tissue from my back, twist it round and tuck  it into the cavity via my original  scar . Which will be the fourth time my scar has been cut . Heaven only knows what that's going to look/feel like. But ... need the results first. A lot of ifs/buts to think about 

Mine absorbed back into my body after about a week. I find it so strange how different places do things so differently. I'm in Surrey. Where are you? X

Mine absorbed back into my body after about a week. I find it so strange how different places do things so differently. I'm in Surrey. Where are you? X

Wow, weird isn't it? Bodies are strange. 
 

i didn't have any issues with my first two lumpectomies. This time I'm purposely filled with saline - stsge 1 - so I can have the stage 2 partial reconstruction (LICAP) . 

I'm in Manchester - where pathology results are taking forever! Ive had 14 trips to the hospital.. and counting. I'm getting real moments of anxiety just driving there. It's always bad news. How are you coping with the ongoing changing of goalposts. 
 

x

Here it seems being told lumpectomy then radiothetapy. Then asked if willing to join the optima trial. No firm answers. Just more wait and see. Sorry for the language but *** TELL ME!

So many mixed messages. I'm done. 

Quite drunk now as starting to feal like the only way O can sleep!