Ah that's a shame. I promote the group whenever I can as it's been a real help to me. I'm 34, there aren't many younger women around going through this so it's been really useful. There will be other support groups that have a more inclusive age range, I'm sure 🙂 xxx
Definitely!! I had serious wanderlust before bc, never mind now!! I'm up for as many trips as I can get 🙂 Btw, if the age range fits (under 45 at diagnosis), then you might also like to join the Younger Breast Cancer Network on Facebook. I got so much peer support there around all my treatment.xxx
Thank you... doubt I'll be quite up for it this Christmas but how about next Christmas we have a girl's trip to Cuba!!! I'd love that!! 🙂
Thanks both, I'm so glad I can help! And yeah, the ex is better off gone. I had an awful few months and the worst Christmas in living memory, but am ok now. And will be taking myself to Cuba next Christmas to make up for it 🙂
Yep, the lymphodema is due to node clearance. I already knew I had cancer in my nodes as a biopsy was done at the same time as my breast was biopsied. I was lucky though, they removed 28 nodes and it was only in the one. Lots of women don't develop lymphodema, and there's no saying why some do and some don't, but it is a risk.
Good luck to you both, and if you have any other questions just ask 🙂 xxx
Hi there La-La,
Well, it's hard to believe that all that was 6 months ago!
I did have everything done in one go, bilateral ld, all autologous tissue so no implants, and a full axillary node clearance as well on one side. A 9 hour op in total.
My healing was compromised by starting chemo 5 weeks after the op and my husband leaving me the week before that and being absolutely no support at all prior, so those things are to be taken into account. I've also developed lymphodema which hasn't helped, and the chemo has meant that I have several seromas that haven't dissipated. As you're having chemo first, you might not experience the same issues, sp please don't panic about that!
I have a high pain threshold too, and a similar attitude (worked as much as I could through chemo), but I have to say that this surgery is major. I'd say 2 months off work, but if you're able to work from home you may well be able to return sooner on that basis.
Do you have family/friends to help out? If so, I'd try to arrange to have someone around for the first couple of weeks when you're discharged, and further help with things like cleaning/cooking/childcare etc if you need it for a while after that too (you might not need a lot of help, but certainly shouldn't be doing things like hoovering/any heavy lifting). My arms were very weak after the op and as I was sent home with drains in, I also needed help negotiating them when washing until they were out. I was sent home with 3 in though (I had 5 to start with), which I do think is unusual.
The pain post op wasnt too bad, I was off painkillers quite quickly, but the discomfort lasts for a while. I got a huge maternity pillow for bed and cocooned myself in it with lots of pillows to elevate my head in order to sleep. For the first few nights I had to sleep sat upright and I needed lots of pillows for a few weeks after that. It was a while before I could sleep on my sides again, maybe a couple of months, and I can't like on my front for a long time still.
Things you can do to prepare if you do have the whole lot done in one- big u shaped maternity pillow and lots of other pillows to support you in bed. Button up shirts- l lived in these and stretchy strappy tops I could get on up and over my hips for weeks. It's a while before you can lift anything over your head to get it on. I'd also move anything that's above shoulder height to reach. I couldn't get to the top shelves in kitchen cupboards or get things on or off coat racks etc. I also had to shift things like bedside tables forward as I couldn't reach straight out to the side, just forward. And it might help to buy lightweight (plastic/paper) plates etc for the first few weeks. And straws so you aren't lifting heavy cups too high.
Other stuff whilst I'm thinking on it, if you do end up with the op all in one go (this is turning into a mammoth post, sorry!): Buy some ibuprofen and paracetamol in advance as you'll be prescribed these with stronger pain meds when you're discharged, but might only get enough for a few days and not be able to get a repeat prescription from the docs in time (my GP 'lost' the fax from the hospital). Take soft tissues to hospital, the oxygen thingy up my nose made it bleed for a little while (although this didn't hurt). Lip balm, I was v dehydrated after the op. Nice snacks that you might feel like eating as hospital food is awful. Drinks. Bear in mind that if you use a laptop it might be too heavy for you to lift for a week or so, no point bringing it to the ward like I did!
You might find yourself with a catheter- they didn't warn me about that! And cannulas in both your hand and foot. Drains are a nuisance but they don't hurt. If you get sent home with them they are ok to empty yourself if you need to, you might prefer that to staying any longer in hospital. I got given some little heart shaped pillows made by a volunteer who donates them to the ward, they look like this: http://store.mastectomydesigns.com/breast-cancer-comfort-pillows.html they were invaluable and became my little comfort talismans- I used them to support my neck whilst in bed as well as my sides. Check if you get them for free before you buy any. Cut your toenails before you go in, might be a while before you can do that!
Do you have pvc doors? First few days I struggled to lock them properly as you have to shove the handles up.
One the positive side, I could climb stairs without problems and learned quickly to use my tummy muscles to lift myself up and out of bed, My anx arm was the worst and I really think my slow recovery was a lot do with the node clearance.
For the first few days you'll feel bionic (not in a good way!), but different bits of machinery get removed each day. You'll be able to move more and more and will feel a lot better when the drips and cannulas go. I was in for a week and hated being in hospital so much that I persuaded them to release me way before they probably should have!
Ooh, the other thing I did was getting the ring on my home phone extended as it used to go to answerphone quite quickly, so I'd have more time to answer it.
You'll need a pillow for the ride home after your hospital stay, possibly a couple (I *may* have liberated one from the ward),one for your back and one to protect you from the seatbelt. Take some cash into hospital with you just in case you need any, and have a stash of some more at home as getting to an atm might be hard and you might need to get taxis to appointments and want to do things like order pizza!
6 months on I can lift whatever I want and do pretty much what I want, seromas and lymphodema permitting. I still have a very tight feeling around my back (feels like wearing a tight sports bra), and this may never go. No sensation in most of my boobs, but the pecs underneath them that the ld muscle is stitched to still get quite sore and achey. One boob has ended up a size bigger than the other (I have one B and one C cup, not bad for no implants!) so I need some fat transfers done later in the year to even me up. I have a mini prostetic that I use in the meantime just to make sure that bras support me properly. The scars are long (30cm each) on my back and I have scars on my boobs around the skin grafts they stitched in after nipple removal. They and the anx scar have healed well, the back scars have taken longer.
If there's anything else you want to know, please do ask. I could find next to no info before my op and it made it even scarier!
Hi Fearn x just wanted to add my support and to say hope all has gone as well as can be expected today xxxx
I am sorry to read of your recent diagnosis and all the diffiulties you are experiencing. Whilst you are waiting for the other users to reply with their knowledge you might find it helpful to contact the BCC helpline on
0808 800 6000. Here you can share your thoughts and concerns with someone who will offer you a listening ear as well as emotional support and practical information. Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
I was diagnosed last week (HER2 and estrogen +ve, 25mm tumour and at least one lymph node affected) and am being rushed in for a double mastectomy with LD reconstruction next week, with chemo, radio and Herceptin to follow. Has anyone had a bilateral with this type of recon in the same operation? I'm really worried about loss of strength and mobility and can't find anyone who has had the same thing done.
I'm 34 and used to being very independent. I need to recover asap as I have to work as much as possible thoughout all my treatments as I don't get any sick pay through work, just the statutory. I don't qualify for any welfare benefits as my husband has no recourse to public funds (he's American and I sponsor his visa, so I can't lose my bloody job either!), this has been confirmed by Macmillan's welfare advisors and the CAB (basically we count as needing a single persons income but anything he does earn is counted against this). No family support since my mother passed away as a result of bc last year. My best friend has stage 4 bc with brain, bone and liver mets after a very late diagnosis this June. Husband struggles with depression so I've signposted him to carer's support groups and counselling etc. I'm used to being the strong one!!!
Not got as far as thinking about what will happen to me after the op yet as things have moved so fast, but can anyone tell me what their experience was?
Thanks for your help.