Same here. Diagnosed 29 March with grade 3 TNBC. Have had 2 lumpectomies but no clear margin because of DCIS around the invasive cancer. They are now recommending a third lumpectomy which would be 27 July then 3 weeks for results so, if I do this, I won't start chemo until end of August/Sept - 5 months after diagnosis, so much for catching it early. And they won't let me speak to the oncologist to understand the risk of this additional 6 week delay. They will only let me speak to an oncologist if I give up on my boob and say I will have a mastectomy. This is nuts. The surgeon doesn't know the risk. I am being asked to trust an oncologist who has never met me and who can't even pick up the phone to explain why they think this is an acceptable risk. And I've been all this time with no one to talk to about my cancer, the only information I have has come from the internet. This rule doesn't apply when you are on potentially your third lumpectomy and over 3 months into cancer with no real information. If I do have a third lumpectomy, even if they get a clear margin this time, it won't mean anything because they don't know if there is more DCIS elsewhere they haven't seen yet so what is the oncologist waiting for? There's so much delay built into the NHS "pathways" and they are applied too rigidly. 

Hi,

Totally with you on this. Having a 4th lumpectomy on 28th. Never spoken to an oncologist. No idea if I need chemo or not. One person (BC nusre) says yes, other person (surgeon) says no. So, no clearer on what is going to happen than I was back in February when I was first told it was cancer. My surgeon was on holiday a few weeks ago when I went for my 3rd lumpectomy results. Had a registrar and BC nurse tell me I needed a mastectomy (my case had been discussed by 'the board'). Last week, I had a meeting with my surgeon, I thought to discuss it further. She disagrees with 'the board' and is doing another lumpectomy. My brain hurts!

Although my husband thinks this is great news, I'm now facing another 5-6 week wait to see if margins are clear. I feel sick constantly and having pretty bad mood swings. Like you, I'm also worried with each day that passes. Is it spreading? Getting worse?

Have you had any body scans? I haven't.

Nicky

Good idea contacting PALS. I am worried about not having an mri or anything. Might do the same.

I'm based in Surrey. Where are you? Different areas seem to do things differently.

I am in Surrey. All the best x

Hi all

so sorry I've not been up to speed with you all. I've had teeth extracted and all sorts of other crap going wrong with my defective body.

[@Clarky15]‍ so you're having a fourth lumpectomy soon . How are you feeling about that? Did you have a choice? I was told that after the third lumpectomy if no clear margin was achieved then it would be a mastectomy. Sounds like you were told something similar. There's no way I'll have a fourth, I'll have it completely removed regardless . I dont know about you others but I was diagnosed on 2nd Feb but didn't start my sick leave til the actual day of my 1st op on 28th Feb. Unfortunately my SSP runs out mid sept and then I'll be £100 a week down.  I won't qualify for benefits etc so the upshot is I can't delay and have more lumpectomies- each round of operation and recovery and results takes 8 weeks. I need to get back to work basically. Grim but true. 

Update here if you feel able, I've hated being in the 3rd lumpectomy club but having some coministion with others on a similar boat has been so helpful. I'm almost 3 weeks after 3rd op. Feel ok though the scar site is rubbish - to be expected after 3 incisions. 
 

i hope everyone is getting through the days and have a plan they feel comfortable with. Sounds like some of you aren't getting the information you need to make informed decisions , which must be frustrating. Like it's not hard enough as it it. 
 

thinking of you all xx

Hi 

Yep, 4th lumpectomy. I was told that it would be mastectomy after the 3rd but surgeon changed her mind. I wasn't happy about another lumpectomy if I'm honest, I've had enough, but surgeon and hubby talked me into one more try with lumpectomy. Don't think my husband quite understands my thinking. He's so happy I'm not having a mastectomy and is in denial that this next op might not work and I'll still end up having one. He even told the few friends we told about it - got a load of 'congratulations'  messages like I was suddenly cured. 

I was diagnosed 8th Feb, 1st op on 28th Feb, 2nd 7th April, 3rd 31st May, next one 28th July. Quite similar timing to you. I have been lucky that work have been paying me my full pay so far but this will stop in November. 

So, op next Thursday then the dreaded wait for results, again! Not doing it again. If this fails, mastectomy it is. I need to be stronger and not let them convince me otherwise. Just hope I don't have to...

My scar is also lumpy and getting bigger each time they open it. 

Sorry about all the other **** you are having to deal with. Have you got results from your 3rd op yet? The waiting is grim isn't it! 

Nx

Hi Caltaj,

I've sent a friend request. Not allowed to mention hospital names directly on the forum. 

How are you doing? 

Nx

I would also recommend getting your GP to refer you for a second opinion. I was told in no uncertain terms at my second opinion to go straight to chemo and not have a third lumpectomy. If it's non-invasive DCIS they are still chasing, it's not worth compromising the effectiveness of chemo by a further delay. I've refused the third lumpectomy and I'm trying to get chemo started ASAP

Sorry I didn't know, I've only just joined.

My surgeon doesn't think I'll need chemo, just radiotherapy. But found it very confusing as she and cancer nurse and cancer researcher all mentioned the optima trial to me. I refused the trial because well, it's a trial... not willing to risk it not being correct and receiving the wrong treatment. But why ask me to agree to it if I don't need chemo? So confused. Doesn't help that my husband seems to think I'm over-thinking everything. Yes, the cancer lumps are out (as far as I know) but there is still precancer DCIS. What if it has already turned into cancer? It's been months since first lumps were diagnosed. Is it weird that I'd feel bad asking for a second opinion? 

Sent a DM XX

Hi

 I'm literally on the way to the hospital now for my results of 3rd lumpectomy. I've already decided I need to have a mastectomy now. The physical loss of my breast I can manage better than the mental grief I will have if I keep it. If that makes sense. Talked it over with boyfriend and he agrees in better at managing my body than my mind.  
 

here goes 

Hi

 I'm literally on the way to the hospital now for my results of 3rd lumpectomy. I've already decided I need to have a mastectomy now. The physical loss of my breast I can manage better than the mental grief I will have if I keep it. If that makes sense. Talked it over with boyfriend and he agrees in better at managing my body than my mind.  
 

here goes 

Good luck lovely. I'll be thinking of you. Xx

Hi

Well my 3rd lumpectomy (with stage 1 LICAP) didn't work out. The initial cavity shave was clear but the extra area  they took had a 3mm cancer, so it's a good job I opted for the LICAP as they may not have found it had they been conservative with the amount of tissue  taken.

The MDT unanimously stated I should have a mastectomy due to the scattergun nature of my cancer. It's small, early and slow ..  but dotted  about  in a haphazard fashion. So, booked in for a mastectomy , prob late Aug after my holiday.  I'm pretty sure I want no reconstruction as I don't like the thought of more gargling with tissue / fat from a donor area. But it's good there are options and I may go heck on the future if being flat  isn't working out for me. 
 

Boyfriend came with me abs was remarkably on board and together, bless him. So now me and my 17 yr old daughter are planning a 'farewell to my breast' party. It's easy to talk about but the doing part will be hard 

So sorry it wasn't great news. But thankfully, they found other cancer lurking which could have been missed!

Did they offer immediate reconstruction with an implant? I didn't like the thought of being flat either. That was my plan if a mastectomy was to go ahead. My surgeon was on holiday when MDT decided mastectomy was the way forward. She disagreed when she returned, hence the 4th lumpectomy.

How do you feel about it? I'm 47 and am not quite ready to lose my boob completely. That's why I opted for implant. Just hoping I don't have to make that decision in a few weeks... My daughter has commented about it and said I'd better not end up with perkier boobs than her :laugh: 

Glad you're getting away for a holiday before it. You deserve it! Where you going? 

Nx

Hi 

I've been offered reconstruction. Not implant - due to my other breast being the size / shape it is. But I could have a breast fashioned out of other body tissue but I really don't want that. I've opted to be flat. And if I change my mind, then I can revisit the options.  I think I could cope with flat. I'm not massive 36dd and think I'd be ok. Famous last words . I will have had 4 operations since Feb and I need a break from hospitals. 
 

I know you're having a 4 th lumpectomy and I genuinely hope it's the last one for you. It's a long journey with one step forward and two steps back . I feel for you and will be crossing everything for you. 

ive just turned 52 and no health issues. No menopausal stuff - quite active - thought I was ticking along quite merrily. Little did I know my breast was scattered with cancer . I actually felt - and still feel - really well. It's surreal . 
 

A week away down south. Then my operation and 8 weeks later we have a holiday abroad so hoping to be fit and well enough to travel. Just got to find a swimming costume to accommodate my wonky chest. Sending positive thoughts x

I agree with you on the reconstruction using flesh from other places. Think I'd rather be flat than do that. I'm also 36dd. My nurse said the implant may be a bit smaller but not too much. They also have one they can pump saline into it to pump it up a bit. Anyway, not sure mine will come to that.

Like you, I thought myself to be quite healthy. No health issues before. Just found a lump one day. Don't feel ill. Do get tired quicker though.

Have a lovely time away, you deserve it! X