Welcome to the Cancer Chat community Laineybug although I'm sorry about the outcome of your latest results and that you now have to choose between having a third lumpectomy or mastectomy.

Our members know how tough these decisions can be so you are not alone on this journey and hopefully anyone who has had a third lumpectomy will pop by soon to share their experiences and advice.

If you'd like to talk any of this through with one of our cancer nurses, they're just a phone call away on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very supportive and will do all they can to help.

We're here for you Laineybug and sending our strength to you at this challenging time.

Kind regards,

Steph, Cancer Chat Moderator

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 there

thanks for replying and sharing.  Good that you hav some understadnign at work and also the sharing of tears with boyfriend good - if you know what I mean.  Must have brough back some tricky memories for him but you are different and this is some time later when things have moved on with BC treatment.

Hope your consult went ok and that you have had a good discussion and plan you are ok with. MRIs are much better at picking up discease and can help although not in all cases.  I had to really fight for an MRI which in the end was a quick 30 min proceedure in a very quiet department slotted in between a couple of pts having scans for sporting injuries - so definitely doable. 

I dont have results yet of latest excision and SN biopsy - now have appointment for friday 24 Jun. as soon as i got that i felt sick. but no way around it.  clinging onto the few positives i have had since mid feb - i.e. ok blood results and MRI of breasts ok.  but the big thing of course will be the nodes and if they got a margin and what that tumour /tissue speciment shows.  Husband is very optimistic of course (non medical).  teen daughter knows about surgeries and DCIS  (not ILC) will deal with that after her GCSEs. So in no- mans -land atm. no plan, no confirmation of extent.  a hard place that we can all identify with i think and I have huge respect for all of us in this situation.  Just hoping next week wont take me into the next level of stage and another batch of leaflets.....

Meanwhile - doing mindfulness and meditation as much as poss. plus book a shakti mat for acupressure......

how are you doing ?

N

Hi

thanks for the update - how you feeling? My last operation took 7 weeks to come back , I hope yours are a lot faster? Is your appointment on 24th for those anticipated  results or something else? We're you offered a LICAP procedure? 
 

i saw a different consultant yesterday - he's going to do the 3rd lumpectomy on 27th June. He said he'll take a generous amount (grim) as he knows he can fill the cavity later with the LICAP flap if the results are clear. He stated he and another surgeon had undertaken 30 LICAP procedures over the past 3 years. Two of which failed and went on to have a mastectomy. But that's 28 successes so I'll cling onto that. (Knowing my luck....,)

I asked about an MRI but was told that it wouldn't work for me as I've had two previous operations that would hinder the result, and also they can bring back false positives. Either way,  it was dismissed . But I tried. 

Crossing everything for you and hope the nodes come back clear, has anyone given you any indication at all? 
 

It's enough coping with the changing events yourself but harder with kids. I had to wait til my eldest had taken her AS level this week before updating her, it's a minefield isn't it. Hope you're ok. Let me know how you go on. I gave my pre op on Monday - my birthday. Just gets better and better

positive thoughts x

Hi there

Sounds like you have a good plan with the 3rd lumpectomy on the 27th June - that could clear it and you have the option of filling the cavity - the odds look really good  (28/30) for that working. Luck must change!  I see the  value of MRI is before op really as the surgical changes do muddy the waters but worth asking (I just wished they did MRIs upfront as much better at identifying stuff before surgery). i think its good to ask these questions anyway as shows you are thinking about it.

My appt on 24th is to get pathology from the the 3rd lumpectomy - so from the 9g breast tissue taken plus the sentinal node and a couple of others ( they were only going to take a slither but i asked her to go for it).  The surgeon said all looked visually normal at surgery and said no nodes had looked suspicious on any scan or physcially so i am hoping ok.  I wasnt offered LICAP (at least not so far)   but I will ask -- i just have a bit of a dent at the moment and a blue stain on it due to the dye injected to identify the SN.  Looks like I have been very careless with a sharpie! She did look at my back v carefully last time so am wondering now if she was thinking of a reconstruction.

Still havent told my daughter everything - she knows about the DCIS and the lack of margins and the surgeries and that I may need more treatment..... but she is not yet through her GCSEs and when I thought about it I just thought that because I dont actually know results & what is going to happen and with her exams i think it would just overload her.   Difficult to know whats best but can only try to get it right.

Am trying lots of things like meditation and acupressure to try to relax and at least 'enjoy' the interval before the next set of results.  Lots of lunches/teas out to break up revision and make most of sunshine.

Fingers crossed all goes well on 27th  - it does sound v good for you so keep positive xxx

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