Hello everyone. I’ve been a reader of many of your posts since I was diagnosed in February this year and now feel ready to share my experience.
Following a routine mammogram, (age 62) I was recalled for further investigation. After the usual scans and biopsies, I was diagnosed with a 14mm tumour (invasive ductal ER+ HER-). I was booked in for lumpectomy in mid March. The surgery was straightforward - but when I was back in the day surgery ward, the consultant made a 30 second drop by - asked if I felt fine and turned to leave. I asked as he left if everything had gone well. Literally as he was walking out of the ward he said ‘Yes, we took 5cm’. I was left shocked and confused. He’d told me at the initial consultation that the tumour was 14mm and they’d probably take around 3cm to get clear margins. So I was then plunged into a feeling of dread and gloom. Why was there such a difference?
I had to wait 2 weeks before I got an appointment with the BCN for the pathology results. The first thing she told me was that the lump was 3cm - more than twice the expected size! The cancer was not ductal but lobular. There were 2 sentinel nodes removed and tested - these were clear. Also the lympho vascular system was clear. Good news! However, the margins weren’t clear so I was referred for an MRI to get a clearer picture. I was started on a hormone suppressant - Letrozole (which so far I am tolerating well). I had to wait for the surgery scars to heal sufficiently for the scan - so that was another few weeks.
Two days after the MRI I received a call from the BCN with the good news that there were no further areas of concern and surgeon happy to proceed with a further excision to get clear margins. I’m booked in for that in a couple of weeks time.
As I was at work when the nurse called, I wasn’t ready with questions that I now think should’ve been addressed. How much more tissue will be removed? What will the affect be on the appearance of my breast? Is there a procedure I could have to add volume to the breast to keep the shape? Will that be necessary or not? Is the plan still for radiotherapy after? Is chemo now on the table?
I feel I’ve been left in the dark and I’m disappointed I haven’t been better informed. I hate to make a fuss so I’m reluctant to contact the BCNs - but I’ll be going in for a simple procedure but maybe I’ll want something more if my breast is going to be substantially reduced in size. Just wanted to put this out there - support and advice welcome! Thanks in advance (sorry for the long read!) x
Hello there
It’s always difficult when things change / are not as they have seemed or you have been told . This is exactly the time to contact your BCNs with those questions - don’t feel that you are making a fuss as they will be used to people not taking things in the first time around and coming back to them with questions . Just explain to them that you were at work and couldn’t really deal with it fully at the time. Write everything down as you have done here so that you don’t forget anything. You could contact the Nurses on the helpline here for a chat on 0808 800 6000 - they are open tomorrow 9am to 1pm and they may be able to clarify some things for you but your own team are the people with the most information about your case . Hope everything goes well for you. Xx
It always seems that just as we get our heads around something it all changes! I agree with the other reply , now is definitely the time to speak to your BCN and ask all your questions. It will put your mind at ease. There are procedures for conserving the appearance of your breast, therapeutic mammoplasty & LICAP flap are two that I’m aware of. It may be that you won’t need these though. But definitely speak to your BCN. Thinking of you x
Ever noticed how prevelent it seems to be that highly intelligent people can at the same time have the poorest of social skills? Ultimately, you want your surgeon to be skilled at dealing with your breast, but that doesn’t mean they are always great at dealing with people. In this case he was clumsy and thoughtless in what he said and how he said it - big news to you, almost as a throw-away comment while leaving.
My surgeon also dropped by to the ward, whereupon, I got little info as I was still coming round from the anaesthetic and had had a further shot of morphine in recovery - I’d been back on the ward less than half an hour.
Cut to the results meeting and I was armed with loads of questions that I had written down so I didn’t miss anything. I could tell from that, and subsequent meetings, that he was a tad odd in his responses, and not the best at communicating. It comes down to what makes us human, individual and different in the end. Not many people are skilled in all areas, although it would be ideal if surgeons could be, you’re lucky if you have one like that.
Like most people in everyday life, doctors struggle with breaking potentially bad news as much as anyone. Some dress it up and are able to help their patients go away still feeling hopeful, whereas others come across as doom-mongerers. Its as tough for them to fathom how to put things, and they probably get their approach wrong a lot of the time, not least because they’ve probably only met you for 10 minutes prior to surgery which isn’t enough time for anyone to gauge how much info a person needs.
Lobular is notorious for not showing up well on conventional scans, and nobody knew about my DCIS until surgery as that didn’t show up either. This is why things change post surgery. My 1cm IDC was 1.6ch, added with a further 1cm of DCIS making it 2.6 in total, then you can add on a 1cm cavity shave that was done, pluss some for margines taken, so I’d guess an original estimate of 1cm area, resulted in 4cm or more being taken. Happily, where it was hasn’t really changed the size or shape much, so you can get away with a fair bit being taken sometimes ( though I am an E cup, and remain so in both).
Ask your BCN how close the margins were for an idea of how much more would be needed. Generally its 1mm for tumours required and 2mm for DCIS/LCIS, so it might not be much more that needs taking - fingers crossed on that.
It’s quite the rollercoaster isn’t it? But it sounds like you are coping well and very stoic and pragmatic. I had 3 lumpectomies on left side in the space of 6 months and it made no impact on the shape or size. If they are going in for clear margins and you’ve had a scan, they know what they’re taking and how much, so it should be straightforward. If after surgery you feel your breast doesn’t look good, they can fat fill it at a later date, but chances are it will be fine. Hope all goes well for the next and last operation x
Thank you for your reassuring reply - it really does help! x