DIEP post-operation practicalities

Hello,
I am having a DIEP on 9th May in Salisbury (masectomy Dec 05) - very scared now, can’t sleep. Visited BCN & ward and they seem nice.
I have some questions:
The nurse said get bras for post surgery, but what size and kind? Should I go for increase in size around and cup? How long will I be swollen for?
BCN said I won’t have a girdle thing - do I need to get support knickers beforehand?
She said it takes 6 months to recover - 3 or 4 before I get back to work. When did others get back to work after DIEP? Just how tired do you get?
Do you have to sleep sitting up?
Also does lymphoedema get worse?

Trying to think of practicalities instead of worrying over operation - length, anasethetic, pain, what can go wrong etc but hard work. Any advice much appreciated.

Stacey,

its perfectly normal to feel like you are about having the Diep.
i felt the same before mine, i knew it was a big op and i had doubts as to if i needed it.

however i did have my Diep at the end of september last year,and i am very happy with the results.

i was told to buy sports bras, i got them from asda £4, my nurse advised me to buy a 36c,i was a 34b.
i had to buy the big knickers, again from asda think they were £8, different sugeons advise different things though.

i was in bed for 3 days got up on the 4th, you will be bent over at 1st as your tummy will be sore,
but as days go by you will straighten up.i spent 7 days in hospital in total.
When i returned home i had a V-pillow for sleeping, that helped as i was a little too sore to ly flat at first,
i was off work for 6 weeks, as i work in an office i was ok to go back as nothing too manual.

i cant help you about the lymphoedema as i have managed to avoid it so far, but i guess if they avoid using your effected arm you should be ok,
i had them put a red warning wrist band on saying not to use that arm, as i was scared they would use my arm for needles when i was under anasethetic.

I was surprised how quickly i recovered from my Diep op, also i hardly had any pain either.

You will be fine, please try not to worry too much.

kim xx

Hiya
I had a mastectomy & diep recon on 5th March and I am fine now. I found it incredibly painful initially but I’m quite skinny and they had to stretch my tummy really tight. All the pain I experienced was from my tummy nothing from the boob side at all. I was quite stressed though when I had mine as I had only been diagnosed 5 weeks and was still like a rabbit in headlights with everything so I am sure in hindsight it made me feel worse. I can recommend a fab bra from figleaves its called a post surgical bra - white/silver. It’s front fastening with poppers down the front and is almost crop top design. The straps are velcro so each side is fully adjustable. It took me a while to find and I wish I had known pre-operativley. I don’t know about the cup size though I was quite swollen afterwards but prob only by a cup size. The bras are quite expensive so maybe you could by some cheaper crop tops and then order online once you can measure yourself. I woke up from anaesthetic with a hospital surgical bra on and they sent me home with it so you may have something to tide you over anyway.
Once I was out of hospital I took things easy for a while (as easy as you can with 3 kids under 9!) and I did feel that I was ‘slow off the blocks’ initially but it didn’t take too long to get back on my feet. My PS told me aim for a degree of normality around 6 weeks depending on your age and fitness beforehand. I drove again at about 5 weeks. I had a girdle thing for about 4 weeks and now I am in Trinny & Susannahs ‘Big Pants’ courtesy of the advice of the lovely ladies on this site. I am being seen again next week for follow up and hope I can dispense with them then.
Re: the sleeping thing I couldn’t actually lie flat for 6 weeks because my tummy was so tight I slept with pillows under my knees. I recommend one of those V pillow things for when you are in hospital. Overall the operation was well worth it and because I went to sleep with a boob and woke up still with a boob I don’t feel like I have had a mastectomy at all!. Can’t help about the lymphodema thing though as I’m still trying to understand all that stuff but if it helps I did have node clearance at the same time and I don’t have lymphodema.
Good luck with everything. I hope it all goes well

Hi Stacey

I wanted to echo what has already been said.What I will add is that there is no pain really but discomfort.For the first couple of days all you are really doing is recovering from the anaesthetic.After that from my experience it was just sheer frustration at my limt of mobility.I had physios that came on the ward and they advised very well.

As for what you need to take in,well I bought lovely short sleeved pj’s and didn’t even wear them in hospital! As they are constantly checking you I just wore the hospital gown.When I was ready I was advised to wear front opening nightshirts.They are easier to get on,no pulling up trouser bottoms,and easier for access to your boob and tummy for staff to check-a nd going to the loo! I had to wear a girdle but I suffer with psoriasis so was uncomfortable so now in big knickers.

I also took some facial wipes as the first couple of days you are in bed and it helped to freshen up.

As for lympodema,I’m not sure if I suffer or not but my boob is still swollen and my arm is very heavy and feels quite restricted.By all accounts this is normal.When given exercises by the physio I recommend keeping up with them as they do help.My husband tells me I’m even doing them in my sleep!

I hope this helps- I was lucky my hospital have breast reconstruction nurses and they were and still are invaluble! If I can help pass on anything they have advised me let me know

good luck Jennie x

I’m 51 and had mast and immediate DIEP on 1 March, 11 days in hosp, signed off for 3 months initially, expecting at least another month off to recover from surgery - I work on my feet all day with lifting and stairs - plus possibly yet more time due to chemo and rads. I’m 38B and the Breast Care Nurse said get Level 4 high impact sports bras in the same cup size but bigger chest (so 40B), M&S are my favourites. Playtex 18 hr or any firm control panty girdle, high cut so it doesn’t rub the scar, wearing that and bra 24/7 for three months. My scars are good but tummy very tight, feels like a contraction when I stand, just started driving but it’s tiring. Slept on my back for 3-4 weeks with a pillow under knees. V pillows are great on the sofa, the first couple of weeks home I couldn’t get up again if I sat back too far, also a sausage shaped cushion to support the recon breast when you first start sleeping on your side. All the best, Lyn x

Dear Ladies
Thank you so much for your replies… I was worried I wouldn’t get any! Very helpful advice and I am encouraged by your accounts of post-op. Went shopping today and bought sports bra from Asda (thank you Kim) but think perhaps a front fastening one might be good. Also got a pillow -hadn’t thought about that before so thank you.

Two weeks to go today - its always on my mind, worried about being off work again and being on my own in the day, only just getting over 5 years of major depression - have to keep busy…My surgeon said I’ll be off 3 - 4 months, so Kim going back after 6 is surprising. How tired did you get - BC nurse said just having a shower would wear me out! Assume after a few weeks it’s better than that…

Had to have my wedding ring cut off today as my finger was swelling up and it would only get worse after op. Goldsmiths kindly did it without charge. Sad being without it but will get it repaired in a couple of months when I’m thinner!

Yes, the sheer effort of washing and dressing is exhausting at first, couldn’t reach my feet for a couple of weeks. This is major surgery and it takes time to get over it. Now 8 weeks post-op, I saw the plastic surgeon last week and complained that I can’t run even a couple of steps, can’t lift heavy weights, can’t drive far, or walk for more than 45 mins to an hour without feeling really tired. He said I expect too much, mustn’t try to run until at least 4 months post-op, shouldn’t walk for more than about half an hour at a time (give the dog more walks, but shorter), rest lots, let things heal without rushing.

Found skin-colour high-waist firm control support pants in Asda for £8, they don’t roll down at the waist (so nothing rubs the scar) and are silky soft, much the nicest I’ve tried (and I’ve tried a lot). I’m ‘apple’ shape with a big waist but small bum (and flat tum now, hurrah!), these have the waistband up under the bust, I love them. Got a size bigger than usual.

Agree with tiredness comments, still gets me now I’m just 3mths post op (mast & diep flap & reduction all in one go).

Started back to work last week, steadily building up stamina, so want to push myself too much sometimes but thats just frustration. Found aquajogging is fab.

Sports bras are great, used them even before my op. Recommend Enell bras (lessbounce.com) a bit pricey but worth it. I didn’t bother getting one till after op as I didn’t know what size I’d be, just used sleeveless teeshirts & cheapo bra till wounds settled.

I’m really delighted with my recovery & outcome (don’t need any further treatment).

One thing though, sometimes when turning or getting out of bed, get a really sharp pain in tummy near hip. Feels like a hot knife, doesn’t last, but is quite painful.
Does anyone else get this?

Good luck Stacey, I’m sure everything will be fine.

Hi girls

I had delayed diep recon 6 months ago. After about 3-4 weeks I kept getting sharp pains in my tummy area. I could also feel a small hard lump the size of a pea just under the skin. The surgeon said it was the knot at the end of my stitches which was attached to the muscle to anchor it. I think I strained or pulled it ( doing too much! do as you’re told and rest as much as possible!) I had the same sort of pains as kandsi which doubled me up for about 4-6 weeks - I think for as long as it took for the muscle to heal.

As far as advice for the hospital and after -I was given a bra and girdle by the hospital to wear for 6 weeks. I washed and dried it on the radiators because the post op bra I bought from Nicolajane just wasn’t as supportive and the M & S sports bra was the wrong shape and had seams. I did buy some magic knickers for if I went out but think they were too tight and, although very supportive, they were extremely difficult to get on and off when I needed the loo! If you get very firm ones maybe go for a size bigger.

I slept with loads of pillows - propping me up and under my knees. They don’t like you to use the arm of the affected side so ask them to teach you how to get out of bed by rolling on to your affected side and pushing yourself up with the other arm.

I went back to work at the beginning of April (5 months post op).

Apart from the problem with the stitch I didn’t have much pain at all. They took away the morphine zapper thing where you press a button for a shot, because i wasn’t using it. I just had paracetomol.

The first time I showered at home my hubby came in with me to wash me and he also washed my hair!

I don’t have kids and my mum came to look after me so I really could rest and didn’t have to do anything. Take advantage of any offers of help going.

I was scared before and probably a little naive as the only surgery I could compare it too was the mastectomy. I was unprepared for just how weak and helpless I would feel in the first couple of days after. I was in hospital for a week - 3 nights in HDU.

It’s all been so worth it though!

Good luck

fantan xx