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

just checking in and hoping it all goes well for you tomorrow at your appointment . Let me know how you get on, if you're up to sharing

xxx

Hi

Hope you don't mind me joining in this thread. I'm so similar. 3 lumpectomy ops down... 

Hope all went well for you today Flossyn! 

Laineybug, hope your results came back clear! 

Hi there

Thanks for your repies.  So the good news was that there was no cancer in the 2 sentinel nodes that were removed. i was very relieved.

Unfortunately, in the slither of tissue taken the path report describes a few small foci of low to intermediate DCIS with no margin. so I am not done with surgery.  was given 4 options - 1) resection of another margin (that would be the 4th lumpectomy)  2) an oncoplastic reduction - (ie. taking alot more tissue but it still might not get all the affected tissue), 3) mastecomy and reconstruction or 4) mastectomy and leaving it flat. for the reduction and a 4th lumpectomy would need radiotherapy.  probably need chemotherapy regardless. So have been given a few days to think about it and make a decision.  I have no idea what to decide - as I dont know what would give best outcome in terms of survival and reducing recurrence and i dont think the surgeon knows either (even mentioned getting another opinion) also dont know best order for chemo - i..e surgey or chemo first . it feels an awful lot for me to decide........ i am having the pathology reviewed which may change things and should get that result in a few days and am also waiting for the BRCA mutation/genomic result. Maybe that will make things clearer but at the moment i am just waiting and worrying again and trying to make a decision on something where i feel i dont have the knowledge to do so. I hadnt realised just how much is put on a patient to decide what to do - I had thought that treatment for breast cancer was well worked out. It may be just my pathology that is the the problem - (a 5mm triple negative invasive lobular). i am now 4 months from my screening mammogram. Any thoughts welcome - i hope all well with you both x

Hi,

My results from my 3rd weren't good either. Now told it's mastectomy. Unfortunately, my surgeon is on holiday so have to wait until 7th to discuss options. No idea about treatment after yet. Apparently have to wait until I see an oncologist. Mine is hormone fed, HER 2 negative. 2 in 7 lymph nodes involved. Grade 2 and grade 3 tumors.

Like you, I presumed they would know my treatment plan by now. It's the not knowing that drives me nuts. First diagnosed at the beginning of February after finding a lump.

Given the choice, I am going for mastectomy with immediate implant reconstruction. They kind of gave me the choice of immediate or delayed reconstruction when I got my results. My thoughts are - do I ask for both done? It is so hard to be given choices and sent away with them emailing me a leaflet about reconstruction to look through. So much information that then leads to questions but no one to ask questions to. Argh. Just want it over with. 

How do you feel about chemo? I'm in the mindset of - fine, if it helps make sure it's gone. Just tell me so I can prepare myself for it. 

Thoughts are with you both x 

Hi there

Sorry to hear that the 3rd attempt didnt work for you either. We seem to be a fairly exclusive club to have reached this level of attempts!). 

I am leaning towards mastectomy to be sure to get all the affected tissue as because my cancer wasnt picked up by mammogram (was found by chance on lumpectomy for DCIS)  at all so i dont feel very secure having ongoing monitoring with scans.  It also makes me think that a double is probably better as although the other one looks ok on scan - I know that it wasnt picked up on the right with a scan. it would also leave me very lopsided to have one remaiing breast which i think is hard to deal with physically and mentally. You have made me think that that perhaps implants better than a reconstruction - am currently e cup but v happy to have a much smaller cup size and i think that makes implants possible. i will ask.  At least it would get it all out in one go but with something there for some shape so not such a shock.  

Although there wasn't cancer found in the 2 nodes taken I will have chemo given the invasive cancer was a grade 2 and want to hit any stray cells that might be around. I know its hard but I think better to have now and side effects are generally well managed. the hair loss bit is probs the hardest for me but scalp cooling may work to a degree.  my tumour is not hormone senstive so unfortunately I dont have endocrine drugs as an option. 

The various choices and oprions and no one to discuss this with or waiting for an uknown time to discuss with someone is really hard I agree. i didnt actually get any leaflets and am just googling but i hope to speak with the surgeon this week at some point.

think of you both xx  

Hi both 

I'm so sorry I missed these posts! I've been thinking about you Flossyn. I had my 3rd lumpectomy on Monday. I will update later when not making food for children and when I can read your posts and updates properly. 
 

hi Clarky . Welcome to the rubbish club. 
 

laineybug
 

Hi there

Pleased the 3rd lumpectomy went ahead and fingers crossed that this op has cleared it all for you this time.  I have appt with surgeon tues to discuss options etc. seems a shame to have more drastic surgery now that my scar is looking so small and healed.   She did say last time that 3 attempts was unusal but that a colleague had once performed 5 lumpectomies......

Hope you have a good weekend xxxx

Morning Flossyn

Its a long old journey having 3 lumpectomies to be told they haven't got clear  margins. I'm bracing myself for that news. I have a 5 week wait as that's the norm for this area currently. No clear margin means mastectomy. In some ways that news would remove the need  for me to make a decision. 
 

So you've been given options of further lumpectomies or mastectomy (with/without reconstruction).  My breast care nurse called yesterday and was discussing the options. She reckons a lumpectomy & reconstruction (and tamoxifen with radiotherapy) had same outcomes as a mastectomy. But I know different cancers work differently so it's tailored to the individual.

going from stage 0 DCIS to chemo and mastectomy is a huge development, how are you feeling today? Have you anyone to talk to? Are you breast care nurses in touch? 

You're seeing the consultant on Tuesday... do you have to decide then? My BCN was able to show me photos of LICAP reconstructions and mastectomies etc. 

thinking of you - message me if you want a chat or anything x

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

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

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!