Hi sweetie sorry to hear you've been through another operation and have that dreadful wait for results. I would think there is alot to consider this time around. Talk things over with your treatment team, I would probably want to go for a mastectomy if the margins were not clear a second time. But you need to be guided by the team and how you feel about it. Good luck

Hello Cookie,

I could have written this back in January. 

I had lumpectomy just before Christmas and had the horrible wait to see whether or not it was in my lymph nodes - they came back clear but they didn't get clear margins.

I was relieved about the lymph nodes but so distressed at the thought of going through another op. 

They booked me in within about 10 days and second time around the margins were clear. The op also wasn't nearly as uncomfirtable as the first time and I had minimal bruising and recovery. The waiting again was the worse bit and I remember obsessing about whether I'd need a mastectomy, too. So it's not just you thinking that way!

I have since spoken to numerous women who didn't get clear margins first time but did on the second go. y nurse friend informs me it is because the margins are in the mm - and I do wonder why they don;t just take more away in the first place but there must be a reason for it.

I feel your distress but 1 in 5 means that 4 in 5 get the clear margin second time. 

I'm into the last few days of radio now. You'll get there. Have faith in the skill of the profrssionals doing your surgery and try not to listen to the voice in your head whispering the worse case scenarios - easier said than done!

Sending best wishes x

Thanks for your replies ladies

I was supposed to get my results today but received a phone yesterday cancelling my appointment as my consultant was on annual leave. I insisted they gave me the results over the phone as they wanted me to wait until next week but I couldn’t. I needed to know.

Anyway, I have been told that my margins are still not clear but have no further information until I see my consultant next week. 
I now feel like it was a double edged sword as I have my results but lots of questions! I don’t know whether I am facing a 3rd attempt or a mastectomy.

Im emotionally drained now. I know I can physically do another op and recover well but it’s the waiting. I was diagnosed in January and feel like I am no further forward. I am really happy with the cosmetic look of my breast and to loose it now would be hard to take. I am trying to balance it with the fact that I want to be cancer free and live a long and happy life so if to obtain that I loose my breast then so be it. At least I can say I tried to keep it!
We also have a holiday booked with my children for May that I am now worrying about too. It all just seems a little too much at the moment 

Cookie

It sounds like that wasn't what you were hoping to hear but there is so much uncertainty there - and the hospital haven't handled that well. The waiting really is awful and I feel for you.

Have you got a nurse with the breast care team you can speak to? Or another member of the breast care surgery team that can speak with you? I have rung the breast secretary on occasion and have seen other members of the team but I dont know if that's a possibility at your hospital.

Maybe make a few calls this morning then you feel as if you are doing something positive to get answers. I feel for you and hope there is a way in which your care team can help.

Please post how you get on. I've been thinking about you on and off all week.

Best wishes x

Thanks WenLa

I am extremely disappointed with how the unit have dealt with this. From what I understand a follow up appointment was made for today but it was with an advanced nurse practitioner rather than my consultant, due to him being in A/L. I believe they were confident at achieving the clear margins at the second attempt and would have been happy for the nurse to delivery that news.

However with the results being as they are they tried to rearrange it for next week. It was a BCN that rang yesterday and informed me of the results but when I asked any questions she explained it was only my consultant that could answer them as each surgeon is different as to what they are happy or not happy to do. 
I am waiting for them to call me back today to discuss things further and voice my disappointment with how it has been handled.

I have considered asking to speak with one of the other consultants in the unit but my last results appointment was with a different consultant and it was a very bad experience so would rather speak with my own. 
 

I will update once I know more. 
 

Cookie x
 

I'm sorry to hear you've had such an unfortunate experience. I truly hope you manage to get something sorted - which you will - and that you are then able to move on from this and heal. Physically and mentally. Sending love x

Hi, I'm so sorry you've had so many problems with your margins and on the admin side. You don't need that on top of everything else, do you? I'm 2 weeks post lumpectomy and waiting for my pathology results which I won't get until next Friday, 14th. I hoped it would be tomorrow but they're not back yet and the MDT have to meet to discuss the results before they tell me. Would you consider having a reconstruction if you need a mastectomy? Sending you a big hug and hope you'll let us know how you get on. xx

Hi Amy.

Thanks for your reply. I wish you the very best of luck with your results appointment. The waiting is awful isn't it.

The BCN has told me that not achieving the clear margins on the 2nd attempt is quite rare and I have just been very unlucky. I have found out since my last post that the recommendation from the MDT was we try a 3rd time. However my consultat wasn't present so have to wait until Wednesday to see if he agrees.

If I was to need a mastectomy I would opt for immediate reconstruction. At the start of my journey I was happy for them to take my breast and go flat but my consultant was adamant he didn't need too. Now I have had 2 lumpectomies and I am more than happy with the cosmetic outcome I feel like if I needed a mastectomy it would be hard for me to take as I can see what I could have had. If that makes sense.

Cookie x

I am currently waiting for my results post re-excision and was given the same odds as you. Unlike you I was diagnosed in early December and have had long waits for results (6 then 7 weeks from surgery to results!) so won't know until 5th May. I am sorry to hear your news and obviously have thought about what I would want in a similar situation.  I think, like you, that having tried twice to keep my breast I would give it one more go.  I hope your consultant is supportive of your preference.  All the best. 

Hi SL

Im sorry you are also going through the waiting game. I now feel very fortunate that my wait for results post op have only been a couple of weeks. It must be excruciating for you, that is such a long wait.

There have been development with my journey today. I received an unexpected phone call from my consultant who is on A/L (rang me from home bless him!).

He has explained that a further 4mm of DCIS has been found that did no show up on any of the imaging pre surgery so it appears that it is more widespread than first thought and hiding! His recommendation is for a mastectomy with reconstruction and a reduction on my good breast at the same time. 
He stated it would be 50/50 whether we would get clear margins on the 3rd attempt as they now don't know how much more is in there, if any, so it's a bit of a lottery! This has obviously made my head do a complete 360 and now feel that his recommendation has to be the only decision for me. I want to be cancer free and get on with my life. 
I have an appointment with him next week to think things over and make a decision but think it's already been made!

I wish you all the luck for your results in May and everything is crossed that your margins are clear this time around! 
 

Cookie x