3rd Lumpectomy

i am so sorry to hear this has been such an awful run for you both, the whole thing is horrendous when things tend to go right.

please tell your wife not to give up,

i agree they try to be too positive at the beginning and for those of us thrown more crap than originally pitched at us its devastating, i was told my lump was small for my size, and it would be radio and tablets, only to  have to go back for second lumpectomy, as the margins were not clear enough and then mention of an octo test which is unlikely to mean chemo, but nope, that has me in chemo. almost finished, 2 more to go. i also waited almost 6 weeks and was told i would do chemo first if they were nit clear and then a mastectomy, u can only imagine how angry I was, the margins were clear thankfully but i worry still.

 sometimes I think i should have just gone with a mastectomy from the beginning. then it would have been done in april, and radio would probably be off the table too. its so hard when they pitch it as inconvenient. and even if i had to have chemo i would be done. as we all know we cant change what has been sadly

i would definitely demand a way to transfer your wifes care as your wife is so emotionally scarred by the treatment so far, she has no faith in the ability of the team and anymore interaction will only make her feel worse. also try to reassure her a mastectomy is not the end, new techniques mean they are not like the past. but you need definitely need to find another surgical/breast care team, and demand proper scans and mris if need be because you have serious doubts about what the team thought was going on.

I am sorry I cannot gve you more answers, and,I do hope you can find someone to help you and your wife the support and treatment she needs (hugs)

and please know you will find supprt here for both of you

Thank you so much for your response and I wish you well in your own journey.

as you say she is emotionally scarred and has completely lost faith in her current care team so we do now need to look at transferring her care if that is possible.

I’ll do some research on how this can be achieved besides going down the private route as I’m unsure as to how we can afford to do that.

I know the nhs are overwhelmed but I really to feels there has been a catalogue of errors in her care so far and some of it has been borderline disgusting. We have both worked all our adult life and paid into a system that at present is failing her.

The priory for me though now is try and get her to seek some emotional support - she has lost faith in her own current team so won’t seek it from them and is currently refusing to even step back into her current hospital - I’m hoping this is just anger and part of her journey to accepting what’s going on but she certainly isn’t in a good place at present.

probably the main reason for me joining and posting on here (other than to vent) was to try to gauge what support is available - sounds like there are people on here going though very similar experiences so feel this would benefit her too - if I can convince her to join!

thanks again

macmillan has support lines, perhaps they can help you navigate and help 08088080000

there are also Maggies Centres for help

 https://www.maggies.org

sadly it seems delays are getting worse, but the pathology results are always long waits and some of the hardest

and yes hopefully we can help her feel less alone in this 

Hi, I am so sorry that your partner is going through such a horrible time.   Unfortunately the medical team don’t have the outcome until after an examination under a microscope.  I was told if after my first surgery margins weren’t clear that I would need a mastectomy.  My margins were not clear but I had a second lumpectomy.  The dr explained the number of lumpectomies depended on the size of breast.  He made the example of an apple or grape!!  This is a roller coaster of a journey and it’s a very bad stage you are both in.  The not knowing!!  I also panicked when I needed a second lumpectomy but the breast care nurse said it was just another step in the journey.  Regarding the drs approach…… my surgeon who was one of the best just spilled out the news as it was.  I would say dropped the bad news  and left the room.  The breast care nurse then picked up the pieces.  I suppose there is no easy way of saying it.  I too was on my own for the first appointment.  I think my husband was in denial and was shocked when I told him I had breast cancer.  Your partner would benefit from some counselling which I can thoroughly recommend from Action Cancer.  I wish you both all the very best.  Take one day and step at a time.  Don’t rush ahead.  This is hard enough xx

Just an update (for me really to process the absolute shit that has happened since this initial post)…

we decided to bite the bullet and empty the piggy bank to pay for private treatment (we were supposed to get married this coming summer but have had to empty the savings).

the surgeon and the treatment was honestly night and day different to that received at the previous hospital so in the end it felt like an easy decision.

our initial consultation did bring up some surprising information that had been omitted from the previous hospital - 1. Not only were the margins not clear after the 2nd op but they also found a 2nd invasive tumour and also no negative margins for dcis. Also “upgraded to grade 2” not grade 1 as advised by the original hospital.

the original hospitals treatment plan of taking half the breast and immediately reconstruct with tummy fat was immediately quashed by the private surgeon surgeon stating that he “would stop short of calling that ludicrous” because how can they reconstruct before they are entirely sure all cancer is removed… a very good point.

we had a 2nd consultation last week where he very thoroughly explained the procedure he was proposing explaining a different entry point would be required and that further scarring and a more drastic surgery was required. Just about got our heads round that but had to go back for further scans this evening so he could see the exact location of previous cavaties from past surgery. … But the radiologist found 2 further areas for concern that required immediate biopsy and will affect the original plan for surgery.

if cancerous (myself and partner already know they will be) then it’s a mastectomy.

when questioned why these areas weren’t picked up on the original scans form the previous scans at the initial hospital we were advised that they hadn’t done an ultrasound scan on the entire breast but only one specific area!… Why?! She is a B cup so it would at exactly have took much longer to scan  the entire breast?!

yet another error…. And why did they not disclose the findings previously mentioned and why did they not rescan after finding more cancer?!

My partner is not coping well (neither am I - if it want for having 2 very young children I dread to think she/I would do) but she refuses to talk - is very angry - pushing everyone away etc.

Really don’t know how to help or how to help myself - can see no positive end to all this.

she went back to work in between ops to aid her mental health in between ops and I have continuously worked through all this but am now at breaking point.

just ranting so apologies - I know there is nothing anyone can do or say to help or make this go away but….

F U Cancer!

First of all I want to give you a BIG HUG! 

Reading that has brought a tear to my eye. How incompetent can the hospital you originally went to be? I would be absolutely fuming and 100% would be asking for a full investigation they can’t play with peoples lives like this. That is Ludacrous 

I really hope you get some answers and as easy as it is for me to say this, because I feel like I’ve been pushing my boyfriend away. Please be there for each other even if it’s a rant, shout, or even scream, those times will happen but just hug each other xxx

Just another update to try and process what’s happening.

we had the biopsy results back on Friday and sure enough both newly identified “areas of concern “ have indeed been identified as further cancer - so the original plan for the 3rd op is now off the cards leaving a mastectomy as the only option left.

we are back in for another private consultation tomorrow so already dreading the next bombshell- 7 subsequent visits in the past 3 months have all delivered devastating previously unknown/unexpected worse news.

costs are racking up too with but there is no way on earth we can go back to the original hospital that have mis diagnosed all of this. 
to think 3 months ago we were told that this was a very treatable and only a minor inconvenience in months to come to where we are at now beggars belief!

We can’t continue to be knocked down so consistently- we would have been better having been delivered a terrible prognosis from the offset rather than this prolonged ever worsening hell!

Im so angry with the original hospital and feel something must be done but neither of us have the strength at the moment.

currently waiting for the “quote” for the mastectomy which is a sentence no one in this country should ever have to say but we are where we are!

hoping for no other crushing news tomorrow but the way things have gone so far I almost feel it’s better to prepare for the worst!

losing hope x

I was down for lumpectomy until they found several lesions so had to have mastectomy.

 I’m so sorry you partner is going through this.

I had them initially trying to soothe me and telling me only small chance it was anything, but at next appointment was more or less told to prepare myself. Then told lumpectomy and as I said MRI found further lumps requiring mastectomy.

 All of this from an initial appointment talking about lumpectomy!

 In my case the surgeons and breast care nurses were fantastic and couldn’t really fault them.

I think with lumpectomy unfortunately they often talk about needing clear margins around the tumour. In my case everything was taken away at surgery and I had a reconstruction at the same time.

I have not coped well and a very kind McMillan nurse phoned me and then referred me for counselling /emotional support. I live alone and feel quite isolated at times.

 Could you discuss with your nurse? I don’t know what I would have done without mine.

Oh and also chemo was not thought to be on cards, but now half way through 

Thanks for your reply and I wish you well in your journey. Glad to hear you have managed to find some useful support and I truly wish you all the best.

Although the nurses at our original nhs hospitals all seemed very nice and supportive unfortunately the surgeon etc made numerous unforgivable errors.

After my partners 2nd surgery we were told there was a clear margin but only 0.2mm whereas they needed 2mm.

it was only after transferring care to the private hospital that we were told that the tissue removed also contained a 2nd grade 2 tumour! The first hospital completely “forgot “to mention that - and that it was also grade 2 not grade 1 as per the previous tumour removed during the 1st op.

they also told us the mamagrams were completely clear so didn’t know there were any more.

the private hospital immediately requested further scans after seeing said mamagrams he was forwarded as he could see 2 further areas.

he was not surprised by the results neither was the new radiologist so he’s and knows how they were all originally missed?!

when asked why the original hospital didn’t pick these up in their scans we were advised that they only did the ultrasound scan on the very specific area of the first tumour rather than whole breast?! She’s a b cup! Why not do the whole breast?!…. This is what I feel needs to change because the scary thing is that if the initial surgeon had little taken 2 more mm in that second op he’d have got clear margins and we’d be thinking we were in the clear when actually there was 2 further tumours always there.

this whole journey must be horrendous for you all even when care is great and the news delivered is consistent but when you completely lose faith in a hospital due to countless errors the situation is compounded further and not fair on patients at all.