i have just been diagnosed with Invasive Lobular Breast Cancer. I’ve just had an MRI to see if it’s spread and if not booked in on 15/7 for lumpectomy and gland removal. Is anyone able to let me know what to expect during and after the operation … thanks
Hi Alexa you will be given arm exercises before you leave the hospital and you MUST do them, even if it is painful, as this will ensure that you regain the full range of movement in your arm.
I would be tempted to look for some soft bras, just now before surgery, like sports pull over bras and t-shirts or front fastening tops to wear for a few weeks. You will most likely have to sleep with a soft bra on for a few weeks night and day to preserve the shape of the breast until, the swelling goes down.. It will also make it easier for you, you will be discouraged from using underwires as these can press on the breast and cause more pain.
I had Idc Very similar. Mine was a lumpectomy and they moved tissue around to plump up where they removed tissue. I have a small dinted area. They took one node out during surgery. The node area seemed to give me the most aggravation. Although I managed full arm movements throughout. I have been given 5 days radium. Tomorrow my last day. So far so good. Just a few twinges in my arm. And slight heat to the breast. Tamoxifen for 10 years and annual mammograms. Feels strange to come to the end of it all tomorrow. I was diagnosed mid April operation 03/05 results 18/05 tamoxifen started 20/05 and radium started 27/06
Ah. I thought radium was after op. But I’ve so naive with this all. My first month was horrendous. Stressed but it’s gone relatively quick and I’ve just went along with everything they’ve said
it’s such a sad diagnosis. I’m feeling ok now but still have down days when I think why. I hope you have your answers soon so you can move on with your treatment x
I was told I had ILC in early February. Like you I had a contrast MRI to make sure there wasn't anything that couldn't be seen on the mammogram - there wasn't :) I had my lumpectomy on 11 March. Initially, I didn't have much discomfort at all, but once all the dressings came off after 7 days, I found it more uncomfortable. I didn't find the exercises particularly painful, but I had a lot of 'nervy' type pain in my breast and underarm. I don't know how typical this is. It did settle down after a few weeks, but I do now have quite a large numb patch in my armpit. Initially there was quite a bit of swelling in my armpit and it all looked horribly lumpy, but it did all go back to normal.
I was told that I'd have radiotherapy about 5-6 weeks after my surgery, but it all took longer than that. I had my follow-up with the surgeon at the end of March, when I was told that my lymph nodes were clear. Because they were clear, they sent a sample of my tumour to the USA for oncotype testing as this gives them a good idea on whether or not the tumour is likely to recur. The results are supposed to take 2 weeks, but mine took over 3 weeks. This delayed my radiotherapy because if recurrence is likely, you are offered chemo, and that's done before radiotherapy. They wouldn't make me an appointment with the oncology clinic until the results were in as you're seen in different clinics, depending on what treatment you're having (this might be peculiar to my local area).
I had a course of 5 radiotherapy treatments which are all done in a week. Apart from some fatigue, I haven't had any problems from the radiotherapy. I bought a big bottle of Aveeno several weeks before I even started my treatment and have been moisturising like mad as I have dry sensitive skin anyway. I don't know if that's made a difference or not, but I've had no problems with my skin at all. That breast has felt a bit sore, but more like the tenderness I used to get with PMT.
I was on HRT when I was diagnosed, so had to stop taking that immediately. The hot flushes weren't as bad as I feared they would be, but now I'm on anti-oestrogen tablets and my hot flushes are having hot flushes! I saw a post on here that suggested CBD oil, and I've found it helpful. My flushes have subsided quite a lot, and my joints aren't as sore. Because of the hormone blockers, I was also given some medication to maintain my bone density, but that played havoc with my stomach and I had to stop taking it after just 3 weeks. I've got an appointment on Wednesday to see about having it intravenously.
You should have been told if your tumour is hormone receptive or not, so the oestrogen stuff may not even be relevant to you. I found it all a bit mind-boggling at first. I thought there was just one type of breast cancer. To find all these different types, and variations was a big revelation.
