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

I had a Breast MRI which showed nothing. But it didn't show the DCIS that is there and was around the invasive cancer. So it doesn't give me any assurance there is no more DCIS in there that we can't see, even if they were to get a clear margin on a third lumpectomy. I am contacting the PALS patient liaison service to put my case to see if that helps. 

I really feel for you, keep pushing for more information xx

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...

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...

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

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

My husband suggested going for a second opinion so that made it easier for me to do it. I'm not sure I would have otherwise, we're programmed to be "reasonable", so I totally understand. My cancer is Triple Negative so very aggressive and chemo is the only thing they can do. If you can sensibly avoid it, great. I think, if my second opinion had agreed with my hospital, I would still have felt it was worth it to have that greater confidence

Mine isn't triple negative. I don't particularly want chemo but want absolutely everything done to give me the best outcome. I lost my mum to breast cancer so is quite close to home. One cancer nurse said I woukd discuss my treatment with an oncologist once surgery is finished... 

It's great your husband is so supportive. Sounds like he listens to you and discusses things with you. Mine is lovely, don't get me wrong, but he is reluctant to talk about it. As far as he is concerned, the cancer is out and this 'one more' lumpectomy will be the end of it. I've tried to express my concerns but he just repeats this again and again. I've given up trying to talk to him about it. He's probably just trying to keep me positive. He's wonderful otherwise. Maybe I'm being too negative? I don't know.