I’ve had a rotten day today and feel in need of a friendly chat.
I had WLE surgery just over 2 weeks ago for DCIS, I was told non invasive but don’t remember a grade being mentioned. I had been completely matter of fact about it until now but results due in a couple of days and I feel like I’m not coping the same as I would expect.
My surgeon tested me to see if I was hormone positive because I had been on HRT for almost 10 years because of a premature menopause and I think because my Mum got bc at 55 just a few years older than me. It came back positive so my BCN phoned me the week before surgery to say stop taking HRT that day. The hot flushes started by the end of the the first week and now 3 weeks on they are unbearable. I counted 30 by 3pm today. I have become sensitive (cried at Chizzy crying on Strictly!!), had random tears at the weekend and today and a couple of full day headaches that I can’t shift.
I’m sure the mood change, tears and headaches are all to do with stopping the HRT. I’m not sleeping very well from the hot flushes and still not comfortable on either side in bed. My boob is still really achey and bruised although the scar has healed brilliantly. The area that was removed was deep in my cleavage area and fatty tissue from above and below was pulled into it to avoid a big dent but this is where I think the pain is from. Each time I move forward or sideways when my boob moves is painful. The area is now very dented and feels like a bag of peas underneath, it is also pulling the skin so I think the fat hasn’t stayed put. Does this happen often? My surgeon said the area taken was right back against my chest wall and it would be painful from moving the muscle and nerve.
Sorry quite a long purge of feelings. I have been telling friends and family I am absolutely fine but keeping it in eventually doesn’t help. Has anyone else had anything similar? Hopefully Wednesday results will say they got clear margins and when my RT will start. Xx
So sorry to hear that you’ve had such a tough day. First of all take some painkillers if you havent already. Dont be brave. Pain ruins everything! The days before results are also tense so that wont be helping your emotions either. Go easy on yourself and get some rest xxx
Hi Mamadeacs,
Emily here from Someone Like Me at Breast Cancer Care.
I’m sorry to hear about your tough week last week. You’ve come to the right website for a friendly chat.
I wanted to let you know that Breast Cancer Care has telephone volunteers who have been in a similar position to you - and they know what it feels like when you need some support from someone who understands.
If you’d like to speak one of them, then feel free to send us your contact details through this link and we’ll get in touch to arrange for a volunteer to call you.
I hope this helps
Emily x
Thank you Emily for this. I’m just waiting to go down for further surgery in an hour but may get in touch in a few days. Nikki xx
Hi Caroline…we are the same age too! I’m feeling a bit rough after the surgery on Monday I’ll be honest. Yesterday I think I had a reaction to the injection of radioactive stuff they put in before and my face swelled up and went really red and although I can still see it, it has gone down a lot. My eyes/nose were really puffy and looked like I had been sobbing. I can’t get a bra on this time so managing in a hidden bra vest top and trying not to move and jiggle too much. It’s early days. Coming off the HRT for me was the hardest bit. I had been on it 10 years as I had a premature menopause (hysterectomy at 35). While I was reading what people take for the sweats/flushes anecdotally Gabapentin was one drug. I was already taking 1 300mg a day for sciatica. I spoke to my GP and she agreed for me to up it to 900mg and the result is astounding. Within a few days I went from 40+ a day soaking wet sweats to around 10 damp ones, I am very pleased at that and can cope now I don’t have soaking hair and sweat running down me.
With my margins the mammo/biopsy showed it was just non-invasive DCIS 17mm so I thought easy peasy take that out and have rads. Surgeon said she took double out to be safe but it turned out to be invasive and deceased right to the edges of the margins top and bottom. She was equally surprised to be honest. I have to wait 3 weeks again for my results and by the end of the second week I start getting a bit twitchy. I will cope with whatever the outcome is I just want to get to the point at which I can start the treatment, it feels like it’s dragging now. It’s heartbreaking seeing friends and family upset too, I wasn’t expecting their reactions.
I have found this forum invaluable, everyone is amazing support to each other. At first I felt like my experience was quite petty compared to some but I realise now it isn’t.
I truly hope you get clear margins this time, do you know what the plan is for you yet?
Nikki xx
Hi Caroline…I am sending you a HUGE HUG for tomorrow and hope it’s good news. All we want is to get to the point we have a treatment plan instead of the limbo land. A few weeks ago I felt fine and now I feel completely drained, I know it will get better and I feel bad that everyone is worrying about me.
I look forward to an update from you tomorrow.
Lol Nikki xx
You’ll be on my mind tomorrow …love the booby prize pun too, shows we haven’t lost our sense of humour and yep I can’t wait to hear ‘radiotherapy next’. Xxx
Oh Caroline I am so so pleased for you, I really am and in a couple of weeks time I’m sure you will be saying the same back to me. Don’t feel guilty we are all in this wretched treatment process, without this forum and chats to different ladies I’m sure I wouldn’t be coping as well as I am.
I am feeling good in myself, still painful and I pulled it picking cream off my bedside table last night! A friend who had bc 3 years ago came this afternoon with wine so I’m tucking into that tonight. Do you know when you RT starts? Nikki xx
Enjoy your g&t! Hopefully I will join you on the radiotherapy thread very soon. Xxx