Hi, haven’t posted for 3 years as everthing was going swimmingly until DCIS popped up on my routine mamo this summer. (Originally -Sep 03 -had grade 2 with WLE, 6 courses of FEC, 4 weeks radio, Tamoxifen, ovaries removed and then switched to Exemastane.) Now need mastectomy with immediate recon booked for 11 Sep. Also being sent for bone and liver scans, chest xray etc.
Just really feel I can’t cope this time, it is not just the fear and being scared but how it effects everyone else in the family. My boys are 10 and 15 and 2 weeks after op there are secondary school open days etc. We all just wanted to move on and try and put it behind us and I hate the fact that my boys are going to have to go through this again. The first thing my yougest asked was, is the asthma back and will my hair fall out this time? He was only 6 originally and that is obviously his biggest memory. I then explained I didn’t have asthma!!
I am very lucky to have great husband and family who help practically and everyone keeps telling me it’s only DCIS and aren’t I lucky I don’t need chemo this time! I don’t feel lucky at all - I just feel gutted.
Having LD flap and implant because of radio and have every faith in my surgeon who is amazing.
Any tips on surgery and what to take into hospital would also be appreciated.
Sorry to start back with a rant like this but finding it hard to cope.
Sarah x
Hi Sarah
I am sorry to hear of your recurrence and that you are feeling that you can’t cope. I am sure you will receive plenty of support and advice from our users, but in addition, you are welcome to contact our confidential helpline on 0808 800 6000 for further support, information and a ‘listening ear’. The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
The helpliners can also talk to you about our other support services which you may find helpful at the moment. We provide a ‘Peer support’ service for example, whereby we can put you in touch with someone, by telephone, who is of similar age and diagnosis to you so that you are able to talk to someone who has an understanding of how you may be feeling.
I do hope you find this of some help.
Kind regards.
Katie
Moderator
Breast Cancer Care
Dear Sarah35
I seem to remember you came to St thomas’ support group a couple of times when you came up for radiotherapy last time. I was there today strangely as I haven’t gone for a year. Sorry to hear you’ve got DCIS, I had that when I was diagnosed but was able to have a partial mastectomy. But if it came back again I expect I’d be in the same position as you as once you’ve had radiotherapy you can’t have it again.
What a pain
Mole
Hi Mole,
yes it is me!! I think I have to have mastectomy this time as it is behind the nipple and because of previous radio. I am also contemplating having the other one done - I just feel to have had it twice by the age of 38 my chances aren’t great and it would give me peace of mind. My surgeon is quite happy to do this next year. He said 2 at once with 2 LD flaps is quite a procedure and he would rather do them separately.
I suppose at least I will then have a matching pair hopefully!!
Sarah x
Hi Sarah, i had the exact same op at the end of june this year, and honestly, its not that bad, i had to have lymphs removed, so still a bit sore from that, but the back is hardly noticeable now, and the front feels a bit sore sometimes, but still early days. Are you a smoker Sarah? and your surgeon sounds really good, its pretty hard at first with one side done, certain i would not cope with both sides. it does feel a bit alien to you at first, but you get used to that, but you no longer have much sensation there. do take with you to hospital at least 2 comfortable sports bra’s you have to wear them for six weeks after the op to help shape the new boob. my op took 9 hours, but i only had the one surgeon working on me, i was lucky as i wasn’t sick after. they did put a catheter in, which was in for 2 days, and i had a line in for morphine for 2 days also, sleep is a bit hard at first, but i managed to grab myself an electric adjustable bed, do ask for one, they make life so much easier! take a nice big comfy pillow for your back, you will need it! also, i took some baby wipes in with me, (along with other toiletries) it was just easier and quicker to feel fresher. i was in for 8 days, and read tons of magazines, i managed to keep the visitors at bay a little, i was so tired some days, but I’m 44 so you will probably be up and about before i was. also, you will probably have drains in, i had four, they gave me two bags to carry them round in, and i managed to find a drip stand that wasn’t in use, so easy to carry around. i found that pj bottoms, and strappy tops were easier to wear, i could just slip the strap off my left shoulder then use my right hand to take it over the left arm and off over my head (op was on left side) a nightie is a nightmare with the drips!
hope this has helped, they show diagrams and explain the op more on www.cancerbackup.org.uk , its really informative
Alison xxx
Ps just make sure your strappy tops are a bit baggy, you will be a bit swollen and if the tops a bit too tight it just adds to the discomfit.
Hi Alison, thanks for your tips - will be packing pillow, wet wipes and strappy tops and hunting down an electric bed if possible!! At least this time I won’t be so shocked by the drains - not sure how many I will have as lymph nodes were removed last time. I haven’t smoked for about 16 years - does that make a difference?
My surgeon said he is going to put nerve blockers in my back to help reduce the pain so will hopefully feel quite numb at first. Didn’t realise I might have a cathetar - does anyone else know is this common? I am getting slowly used to the idea now and my surgeon showed me pictures of other ops he has done which look great.
I have browsed a few posts on reconstruction and some of you have been offered a choice of stomach or back - I was only offered back flap with implants - does anyone know if this is because I have already had radio 4 years ago? I must admit I am not keen on the stomach op but didn’t realise implants may have to be replaced every 10 years -I was told hopefully they might last 20 years - is that optimistic?
Thanks for the tips again - it helps to hear from people who are doing just fine afterwards.
Sarah x
Hi Sarah, back flap reconstruction is better for smaller busted women, i have not been told anything by my surgeon about implants having to be removed, i think nowadays the implants are so much better and safer, as i only gave up smoking in March this year (and am now trying to give up again!) i couldn’t have the stomach one, but i wouldn’t have gone for that anyway as the risk of complications are twice as high as the back flap. also, i suffered some skin narcosis (the area around where my nipple used to be died, this was due to smoking as over the years smoking damages the blood supply, don’t you worry about that, it only happens if you have been a recent heavy smoker) and i was warned of the possibility of that. i am very pleased with the results so far, yes it is uncomfortable to sleep, i find i can’t lie on either side, but hopefully in a few more months things will be different again. i was told i had to have a cathetar in as i think thats standard procedure for longer ops, and i did only have one surgeon working on me, its not uncomfortable, in fact, you don’t even realise its there! i had my op on the friday, then had the cathater removed on the Sunday am, as i wanted to move as i had swollen up a bit all over, so needed to walk that off!
Alison xx
Could someone please xplain what DCIS
Dear Siboney
DCIS means ductal carcinoma in situ, which means the cancerous cells are in the breast duct and although abnormal have not breached the sides of the duct therefore they don’t yet have the potential to spread. If removed at this stage the prognosis is good.
Mole