Thank you Squeakymouse that was really helpful.
I too have never had op before so all a bit daunting. Although I will be glad to have it removed. I think with ibc it is hard to detect actual tumours as on my diagnosis my ultrasound and mammogram was both clear. I was sent away previously suggesting it was just hormonal. I went back though as we know our own bodies ! It was only found through biopsies. Which I think is common with IBC.
I was not aware of keeping warm, I ll too will take dressing gown. The letter they have sent me did say no food after 2 am the previous day and no milky/fizzy drinks. But again I think it varies so best to check with ones own hospital.
Good luck squeakymouse with mx another hurdle will be over .
Sara - thanks for your list of things to bring in, good news that chemo shrunk your tumour so much you did not need a Mx.
I am having full MX and axillary lymph node clearance on 27 Sept. My last chemo was 28 Aug so just over 4 weeks between the two. I can't have immediate reconstruction because I am having extensive rads afterwards. I never had a metal marker put in as I don't think mine is a tumour as such, more like a layer under the skin. They expect to send me home the following day - hubby will be at home but is squeamish so hope I can manage any drains / dressings etc myself!
Sassy - At my pre-op appointment with surgeon he just did physical exam and ultrasound to check the response to chemo, told me what op I was having and the date. I think they had pretty much decided on Mx and ANC before starting chemo, the ultrasound was just to see how well it had responded and whether the op would be difficult. I then had a nurse appointment for a pre-op assessment where they weigh you to work out how much anaesthetic you need, check bloods, heart rate, blood pressure, and ask you a long list of medical history questions. On Thursday I am seeing the breast care nurse who I think will tell me do's and don't s before and after op, what exercises to do, what bra's to wear etc.
My hospital blurb says its important to keep warm before the op so will be bringing dressing gown and fleece and putting the heating on at home. I have never had an op before so wouldn't have thought of this. Different hospitals seem to have different rules about eating/drinking or not before ops so I suggest you check what yours advise. I might also bring in ear defenders for other people on the ward as I often scream, shout, swear and cry in my sleep especially when sleeping in a strange place!
Good luck with your appointment, Sassy, and hope everyone else who posts on here is doing OK.
Thanks for that advise it helps a lot. Glad to know I ll be home pretty quick. Will definately be taking earplugs ! I am having full MX due to location of tumour. It was good how they put in metal clip in to pinpoint tumour. My oncologist has found it difficult and largely relied on clinical examinations to check chemo working.
Hope you hear about your rads soon and good luck with them.
Thanks again for your reply, xx
Sassy - you may not need much to take into hospital, unless you are having an immediate rreconstruction? At my hospital you are expected to leave the same day with a WLE, and only to stay 1 night with a full mx - they send you home with the drains still in place if necessary. I think people stay in longer with a reconstruction. I had a WLE but had to stay in 1 night as I didn't have anyone at home to stay with me whilst recovering from the anaesthetic.
I took in pjs with a front opening top, but never changed into them and stayed in the hospital gown overnight. We were advised to take a dressing gown and slippers in - the dressing- gown is essential if you are going to be walking about with a rear- fastening gown - it can be difficult to reach back to cover one's modesty post op!
There's usually a lot of waiting around, so take something to read or listen to. I also took in fruit and a few biscuits. Lucky I did. Hadn't eaten since the night before and then my op was delayed for various reasons so didn't get back to the ward until 7pm. By that time the only food they had available was a manky white bread/mousetrap cheese sandwich. Ear plugs might be an idea if you are a light sleeper.... a lot of people on my ward had difficulty sleeping as there was always something going on.
Squeakymouse - I had the same concern about the cancer growing again between chemo and surgery, but was assured by the surgeon that this was highly unlikely. I had my op 5 weeks after my last chemo.
My bc is triple negative, grade 3 and the lump was originally 5+ cm. I also had 'orange peel skin'. If I'd had an immediate op after dx I would have had to have a full mx. However, the chemo shrank the tumour so much that there wasn't anything left by the end. Fortunately they put a metal clip in half way through chemo to pinpoint the original centre of the lump, and then had to put wires in just before the op to make sure they were operating on the right area. So I only had to have a WLE instead of mx, and my nodes were clear.
I'm waiting to hear about the schedule for rads - probably won't start for 6 weeks to give me time to recover from the op.
I am new to this site having being diagnosed finally in Feb with IBC this year... 2012. ( Having been misdiagnosed previously.....long story ). Have currently undergone 4 fec / 4 tax. last one 28 Aug. Mx date 01 Oct, then rads. I have pre op appointment with surgeon 24/09. Would like to know if this is normal from your opinions. Also what sort of questions to ask BS, and what to take in hosp, front fastening nightware/bras ??
Any thoughts greatly appreciated..
Kind regards xx?
Thanks Squeakymouse for describing the skin thing. When I had DX there was a small red area on my breast, maybe the size of a 1£ coin. The surgeon said I also had some ornage skin, onc said she couldn't see this (she saw my breast three weeks after first FEC though) and I didn't see the orange effect either.
I had MX on Monday, 6 weeks and 3 days after chemo. At first I thought it was too long but an MRI after 5th chemo showed that lump had shrunk a lot so not so worried about it coming back so quickly. The worst bit was waiting especially after I'd recovered from chemo SEs. My surgeon was keen to make sure blood counts etc were nearer normal, but each hosp has its own procedures.
Thanks for your reply. you asked how I knew my skin was involved. When I first saw the onc a large area of my breast had a red rash like a heat rash, and there were a couple of big spots that looked like insect bites so yes it was visible. I also had the orange peel skin covering pretty much the whole breast. Onc said this made it difficult to operate because they needed areas of good cancer free skin to join together after mx which would hsve been difficult because of the rash being so extensive. At the time I thought this meant the cancer was in the skin but I am not sure now whether it was just the ibc blocking the lymph channels in the skin making it swell up with fluid.
In case anyone else is wondering my onc said the cancer would be unlikely to return after 6 weeks, but might be a risk if op was delayed for several months.
Hi I have IBC, I had last tax infusioon 26th July(3 weeks cycle) and had Mx on 6th Sept, so it was 3 weeks between chemo and surgery, then Rads were 6 weeks later, I had 15 .
Good luck with the rest of your treatment.
I have IBC and had my surgery 11 days after my last chemo but only cos my PS was going on holiday and I wanted to get it done ASAP and my WBC count was OK. I stayed in hospital for a week and am now back home and it's day 11 post surgery. Sore atie tired but at least it's all over and done with.
hi,I too have IBC.I had my mx 7 weeks after my last chemo.My surgeon wanted to operate 3 weeks after but I delayed it as I felt so ill after the taxotere chemo I had.It is supposed to be done within 6 weeks. good luck!
I have IBC, I had my operation exactly 3 weeks after the end of my last chemo and then radiotherapy about 5 weeks after my op, but I know that they don't always do that. Different hospitals and even different consultants within the same hospital do things differently so it could be longer, 4 - 6 weeks sounds like the norm to me. Hopefully the chemo will reduce the size of the cancer to make it more operable.
Good luck with the chemo, I hope your SEs are small.
I have IBC Stage 3 with lymph nodes and skin involved and am currently halfway through chemo. I don't know what grade it is, not sure whether they can tell you this before surgery. My cancer was considered only just operable when I was diagnosed. My onc has now said I should expect to have surgery 4 - 6 weeks after finishing chemo.
I know I am thinking several months ahead but I would be interested to hear how long other people with IBC waited after chemo for their surgery, as I am a bit worried the cancer might start growing again after chemo finishes if I have to wait 6 weeks.