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Abdominal swelling 6 months after diep reconstruction

111 REPLIES 111
fairycake3
Member

Re: Abdominal swelling 6 months after diep reconstruction

Thank you Caroluna,  your reply made me feel much better.  So it's not so awful with boobs that don't match!  I just can't bear the thought of mucking around with a perfectly healthy breast.  I guess if I hate it I can always change my mind but for the moment, I think I'll go that way.

Caroluna
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hiya

I had a DIEP recon 2 years ago...I was offered a reduction to my other breast to match them up but declined as I just didn't want any more surgery and didn't want to risk reduction in sensation of my nipple. So I am lopsided...how does this affect me? When I'm dressed I use 3 chicken fillets of different sizes in my bra bought on eBay for a couple of quid and I look completely symetrical, I am quite large breasted. I have a nice shape and cleavage and women friends really can't tell that I had an MX.

I put a pleat in the shoulder straps of crop tops  to lift the lower breast, I wear under patterned sundresses and tops and don't think any one notices one breast is a bit lower and larger on holiday in the sun.

And in bed... well bosums move about and my chap knows what the recon looks like and we both like that at least one tit still works !

So... that's my way of dealing with this,  works for me. Happy to PS with more info if it would help.

Hope you come through ok

Caroluna

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

(Sorry, meant Fairy ake not Inteh!)
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi Inteh2335
Technically you are on the wrong thread, as this is for post diep flap issues rather than symmetry surgery.. may be a better thread on symmetry surgery on the forum... however for my two penneth worth, I’d go for the healthy boob reduction. The scars really do fade and 2 years on from surgery my scars are silver lines.
Depends how much the loo sidedness is affecting you really.
Don’t know if any of the ladies on here had a reduction on their healthy breast for symmetry? (I had double mx and diep so can’t really advise)
fairycake2
Member

Re: Abdominal swelling 6 months after diep reconstruction

hello all, I'm hoping for some advice. i had a skin-sparing mastectomy in 2016,with an implant fitted at the time. I was told that the implant wouldn't last for ever so that making the decision to have the skin sparing mastectomy meant I would have to have reconstruction later. I've now had a consultation with the plastic surgeon, who has said that I don't have enough belly fat for symmetry so I'm going to be lopsided after the operation. He suggests that he would then do a second operation to reduce the healthy breast. I'm worried that i would then look like a patchwork quilt, plus he would have to move the nipple and surely that would lead to a Loss of sensation there. Are there any alternatives? Oh and if I try and put on weight, it all goes on my hips and thighs so gaining enough fat in my tummy area would be difficult. very conflicted about this.

 

 

mastectomyin September 2016

Sparkydog
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi,
Well I had the symmetry reconstruction last Wednesday. The surgeon tried to drain fluid from my stomach during surgery but said all he could draw was blood! He can't explain the swollen stomach. Left breast is now half the size and with the nipple gone. He did an ultrasound of my stomach and said the seroma I had which he drained a month ago is now an encapsulated seroma that can be removed by surgery or left! Funnily enough, he said it didn't look like a normal seroma but the ultrasound showed that's what it was. Thank god, was scared it might be tumor until the scan. So anyway, feeling sore, sad and like I don't want another surgery ever. Now all I want is to be left alone to heal until I have to return to work in September, which in dreading. Wishing everyone a speedy recovery and a healthy future. Xxxxx
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

(Please excuse my big thumb typos!!!)
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Generally and fluid (seromas) goes fown within 6-8 weeks.
Plus my serimas fid not hirt or ferl solid... if I jiggled my tummy it literally moved like a wayer ned! Was quite funny.
No, the ‘bulge’ I think we areall talking about feels more like a small rugby ball. They are sometimes more solid/swollen feeling than others (lots complain that ditti g for long periods exacerbates it)

I am convinced it is some kind ofs ar tissue flaring up.
Mine only bulges the dide of the DIEP flap, not the SIEA flap.
Jilly23
Member

Re: Abdominal swelling 6 months after diep reconstruction

I am so sorry!  I cannot believe your PS had you cover up!  My GS sent me to my PS after seeing my results during a routine exam.  My GS wasn't happy, but, didn't say he was upset because you know how that goes-drs don't throw each other under the bus.  

I just had a CT scan that came out normal.  So what's all this bulging??  I'm wondering if it's fluid also like you have.  How do you know it's fluid?  It's crazy because I buldge so badly that it's difficult to hide under shirts, and now, under bathing suit!  It's embarrassing!  

Sparkydog
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi,
I'm sorry you had such a bad time of it. I had a tram flap nearly 3 months ago. Worst thing I ever did. Asked NHS and private for double mastectomy but refused to do it as only 1 breast had cancer. Said they wouldn't remove 1 healthy breast, but happy to leave me in a one-boob body, which would have affected me mentally. So my option was implants (replaced 2 yearly due to radiotherapy rejecting foreign bodies) or major surgery using my stomach to rebuild boob. So I went for the tram flap knowing it would be awful and it was. Like being hit by a bus. My body is a train wreck and it's not happy with me. Severe fatigue, stomach like a balloon. Severe pains on and off along stomach scar line where they took muscle. Stomach scar, drain scars and breast scars awful. I look like the bride of Frankenstein. The skin saving implant was painful and pointless. They had to bin my skin as too damaged from radiotherapy. Looks like someone has gone at my boob with a carving knife. I can't look at myself. No clothing can press on my scar line, which is where all shorts and trousers sit. I have to wear leggings pulled under the scar line. Can't wear jeans which I lived in before. I wanted to be flat chested, but since they lifted my boob and reduced my stomach, my breasts look huge, which I hate. It is lumpy, deformed and has no nipple. And next weds I go in to get the left breast symmetrised. Another carving knife job. The private health cover won't pay for the 2k scar revision, so if I want that I need another op via the NHS. If it can't be done in 2018, I will just get breast tattoos to hide the scars. I feel like you, I would recommend it to nobody. I have constant fatigue. If I sit, lie, stand or walk to long I get pain where they removed stomach tissue and muscle. I need constant painkillers and I'm just sad. A double mastectomy in Nov 16 would have been me done. Instead, they wouldn't listen to what I wanted and here I am mid 2018 waiting for an end to be in sight. This cancer crap just never ends in how it screws with your life. Wishing you health and happiness, sad sparky dog.x
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Oh gosh...sadly we have had identical experiences.
I had my op Dec 2015, 2 years 6 mths ago.
Nothing has changed. If anything issues are getting more pronounced.

Boobs hurt if I don’t wear a bra (overhang now, he made them HUGE so now they are worse than before op.)
Boobs hurt when I DO wear a bra (because fat transfer goes into my armit where bras press!!)

I was so looking forward to C cup manageable boobs and a flat tummy.
Instead I got huge H cup lumpy badly scarred melons, a really temperamental painful bulge one side, a tummy scar that STILL feels like a chunk of rope was stapled inside me, and a swollen pubis that makes me look like a drag queen in my bathing suit!!!

I am a single mum, and frankly can’t imagine ever being naked with a man enjoying sex again 😰
I look HIDEOUS naked.

I finally have my revision surgery review appt next month. I had tto wait 6 mths on NHS to see my original PS!(originally used health insurance, but they increased my premiums quadruple times so I had no choice but to cancel (insurance companies can be totally disgusting and amoral!!))
Not looking forward to it because despite his original massive oversell of what he could do, when I originally pressed him on sorting me out as promised he was reluctant and started waffling on about risks of correcting it all!! He PROMISED it was standard before my op... funny how he has changed his tune now!! (meant to be best in UK at the procedure. Probably is, but he does not like being bothered after the ‘main show’ is over!)

I would not recommend this surgery to anyone now.
Seriously think a simple bmx would have been easier to recover from!!!
cdeneveu
Member

Re: Abdominal swelling 6 months after diep reconstruction

I am grateful to have found this thread.  I had my DIEP/BMX in November 2017.  All did not go well, flap skin left for the breast mound ended up having issues--as well as fat necrosis 😞  my PS was able to fix things enough with three additional surgeries (debridement, second debridement, and skin grafting) that I am left scarred but with breast mounds that are okay enough to pass as "mine" in a bra.  I still have a large fat necrotic area that is very slowly dissipating.  I try so hard not to be disappointed with my surgery or surgeon--I have a semblance of breasts--they are "even"--scars are able to be covered--but, it is soooo not what I expected nor what I was led to believe my outcome would be.  PS actually asked me to "cover up" when his residents came in the consult room on my last visit!  Of course, I am really not planning to do any revisions with that PS, he is well known, he is considered good, but he was very discourtious at my last follow up visit in January....compared my result to the sketches Rembrandt did, said LITERALLY SAID, for every work of art Rembrandt created, at least 20 of his sketches likely landed in the trash basket.  OMG.

 

Anyway, here I sit, not wanting to see my PS again, but with all the issues you ladies describe with my belly.  Of course my GP says go back to the PS, my chiropractor wants me to have a CAT scan, but how do I get that unless my GP will evaluate the bulging tummy?  I have zero fat left there--obviously I have some fluid build up there that causes me to look four or five months pregnant, and by the end of the day I am so tired and my belly is hard as a rock.  I know expanders wouldn't have worked for me, anything introduced into my body causes me issues--so, DIEP was my option--and most of the time I am happy enough, until my belly bloats and my foobs are achy and sore and I have no interest with all that to give much physical affection to my husband.

 

Probably need to find a new PS, know I will eventually be less traumatized and ready for revisions, and need a doc who understands this procedure so I can get advice and medical help for any out of the ordinary complications.  Want to be, planned to be happy with all of this--cancer is GONE--no more scary times getting the Mammograms and all the biopsies I needed over the years--til the last one that was extensive and high grade triple negative DCIS....still, with all the time, money, recovery--you'd think at least the tummy tuck portion of this would be good, right?

Caroluna
Member

Re: Abdominal swelling 6 months after diep reconstruction

We didn't get warned about this problem did we... I've not had such dreadful problems as you have had - but I'm 2 years post op and my abdomen hurts at the end of the day, i still get spasming off and on. I do hope things get better for you and send every best wish, Caroluna

Jilly23
Member

Abdominal swelling 6 months after diep reconstruction

Hello-I'm just seeing this thread and am in tears because I have the same exact issues you have!!  DIEP Flap surgery for me was a flop.  I had double mastectomy and 10+ hours of surgery in 2014.  My 22" scar decided to open and after several debriding episodes from nacrosis, I finally healed.  However, breast tissue died and hardened, so back to surgery to remove dead tissue and lypo to put in breast areas.  Disaster.  

Now, 4 years later, my abdomen in SO swollen and bloated.  PS said hernia.  Gastro says no hernia.  Another CT is scheduled.  If I sit a certain way and laugh, my abdomen tightens like a charlie horse and I have to take deep breaths for everything to loosen.  It's CRAZY.  I'm a mess and so unhappy.

Jilly23
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hello-I'm just seeing this thread and am in tears because I have the same exact issues you have!!  DIEP Flap surgery for me was a flop.  I had double mastectomy and 10+ hours of surgery in 2014.  My 22" scar decided to open and after several debriding episodes from nacrosis, I finally healed.  However, breast tissue died and hardened, so back to surgery to remove dead tissue and lypo to put in breast areas.  Disaster.  

Now, 4 years later, my abdomen in SO swollen and bloated.  PS said hernia.  Gastro says no hernia.  Another CT is scheduled.  If I sit a certain way and laugh, my abdomen tightens like a charlie horse and I have to take deep breaths for everything to loosen.  It's CRAZY.  I'm a mess and so unhappy.

Carlypb
Member

Re: Abdominal swelling 6 months after diep reconstruction

Wow... reading your post is as if I wrote it myself.
I also had a prophylactic mastectomy and DIEP flip reconstruction. I've had about every complication possible. I had it at 34 (just hit my 2 year mark) I've had 9 surgeries a million ER visits weekly dr appointments, home health, lymphomodema specialist, catscans, x rays, blood work, you name it.
I've had an abcess, seroma, necrosis, mess, septic, PE, everything.... and it keeps going.
Currently I have an awful pain in my left side, they look at me like I'm crazy because nothing shows on my scans. However, it hurts to breathe in (my pain tolerance is very high and I don't take pain meds) I'm swollen all the time, it's awful. I can't find a reason or a logical explanation. It's so frustrating
Carly
Majorette
Member

Re: Abdominal swelling 6 months after diep reconstruction

Same here! i had a DIEP reconstruction in 2013 since then i have had the same abdominal hardening as the day progresses. some days worse than others. the surgeon and my GP look at me as though i am imagining it and just say IBS but im sure its not that . it feels like my stomach muscles are kind of contracting or hardening and the skin swelling or bloating. very uncomfortable. it can get so bad that i get breathless as though my insides are pressing on my lungs. i too would like to know what can be done.

milli
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi I'm due to have liposuction next week hopefully this will be the last surgery then I'll just have to have nipple tattoos. Has anyone had these done and how do they look?
Vickio
Member

Re: Abdominal swelling 6 months after diep reconstruction

Ha... I can't take credit for it, Its commonly called that here in N.Ameruca, I'm in Canada. Its also known as a puffy cooter! It seems to be quite common for double DIEPers. As part of my phase 2, my PS did liposuction on the pubic area and did a midline vertical incision. She then opened up my ab scar and pulled the whole lot up. While it was quite sore for a while it looks fabulous. Well, it will when the frankenstein's monster scars start to fade. I also had back fat lipo'd to fill in spaces in the boobs. My stomach is super tight and flat and there seems to be no room for food. I will have to start working out bigtime or my upper belly will swell, another post surgical issue. Other than that, I feel sore and swollen as you describe. I told my PS that its as if someone had slashed me from side to side, pulled stuff out and zipped me up super tight. She said yep, that's exactly what she did. So, I guess its a matter of patience.

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Oh Vicki.. your 'Ken Doll'... that is brilliant name for it!!! (You mean the pubic mound?)
Mine is also verging on making me look like a lady boy in my pants!!! SO bulbous!!
What did your PS do to address it? Liposuction?
I still need to go back in for 'tweaks' and absolutely want this smoothed off.. need to know what I should ask for though... are you happy with the results?

I'm coming up to 17 mths post op now.
Still have my bulge one side. Although it is not super obvious to onlookers, it feels awful.. I can feel it pushing inside like a sponge. If I sit still for long then get up it feels really tight.

Should we still be massaging abdo scar area? I had some intense physio work at it on holidays (she was a specialist in post breast cancer care! In a hotel in Tenerife!! I blew a fortune on seasions cos she was SO good, bit back in UK it just feels like it goes back to how it was. Scar tissue feels stapled to the back of my stomach.

I wonder why they refuse to open us bulgies back up and correct it? I guess cos it is flesh not fat that needs 'shaving down'? Is the problem big enough to justify the risk/cost of another operation?

Vickio
Member

Re: Abdominal swelling 6 months after diep reconstruction

I am 8 months post DIEP and 2 months post phase 2, in which my PS got rid of my 'ken doll' and re-tightened what was an already tight and swollen abdomen. I feel as you do... Weird, swollen and very uncomfortable, Although it looks pretty flat. She also says there is nothing wrong. I read on another site that in order to harvest abdominal tissue for the new boobs, they have to cut through all the fascia layers so it can take up to 2 years sutures to dissolve. Every case seems to be different. It made me feel a little better!

Ramone01
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi  i had prophylactic double mastectomy in May 2015 and have had nothing but dramas ever since , I have had seven surgeries on my breasts and the most recent April 20 2017. this last one hopefully is successful. My query is that ever since my first surgery I have had Abdominal swelling and bloating which is very uncomfortable. I have spoken to the surgeons and Medical practitioners  and gastroenterologists who say there is nothing wrong. I know my body and there is something definitely not right. I have had scans and tests and they say there is nothing there. I get up in the morning and it is not too bad but by mid morning it is starting to get hard and tight and bloated. I am not stupid there is somrthing definitely going on. I have done a lot of research and think it may be Lyphedema of the abdomen  after the surgery. has anyone else experienced this? could one of the doctors maybe  give some advice if this is possible? What can be done? Help please,

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Bio Oil, Same one I used after I had my baby!

But do not massage your scars until they are fully healed (I was not given any post op advice and like an idiot massaged mine when still a bit scabbed! Absolute idiot 😱 Scabs fell off too soon and I ended up with horrendous infection and complete wound failure on one boob!)
INTEH2335
Member

Re: Abdominal swelling 6 months after diep reconstruction

Thanks. are you aware of nay kind of creams to lessen the scars?
thanks
Karen smith
Member

Re: Abdominal swelling 6 months after diep reconstruction

Jo 

 

I had the diep reconstruction in Salisbury 2 years ago . I had a mastectomy at the same time and it was a 10 hour op. My only critism was the ward was very busy - lots of very old ladies crying out all night long for nurses -  I would have liked my own room, but apart from that I thought the hospital staff were excellent. I'm  so glad I went through with it. I was very nervous like you but don't regret a thing. I was 54 and if I was in my 40s I certainly wouldn't hestitate. Obviously it's a major op and it was about 6 weeks before I felt back to normal. Sleeping on your back at night and wearing supporting underwear for 6 weeks. You have to make sure you do nothing at all for the first few weeks. You will need someone to do the housework and you can't drive for a month at least . I was in hospital for 5 nights. It took 2 days before I was mobile and  I was surprised how quickly I recovered. Everyday I felt less swollen and so much better. My plastic surgeon was Mr Mccoubrey. He was brilliant. 2 years on I can't even tell my breast has been created by plastic surgery. I even have had my nipple tattooed and you wouldn't even know it's not my original boob ! 

jocruden
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi, I've just come across this site as I am on the waiting list for a diep construction of my left breast, I had mastectomy in 2014 with chemo and radiotherapy. I get on absolutely fine with my prostheti, I've been in bikinis but I do have a slight indent at the top of my chest that I don't like along with 2 hideous scars on my good breast where the port was put in and taken out. I'm due to have surgery around easter time and I'm still in two minds whether to go ahead, the more I look into the less likely I feel like it but the PS was so reassuring. Just wondered if anyone else had had reconstruction at Salisbury hospital and if so what were your views please. I'm 48 btw. Many thanks for any aid to help my make a definitive decision.

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Vickio I recommend massage and mobility exercises... I did not do these religiously and so did not break down internal scar tissue.
12 months later my abdomen still feels uncomfotably taught, but yoga is now helping (should not complain about a taut tummy but if I lean backwards it almost hurts. Think more exercise would have prevented this.
There is a link on this thred to a great doc from St Thomas Physio dept... 24 page guide post DIEP (My hospital/surgeon discharged me with NO post op advice. I found this doc myself and suggested to my surgeon they should produce similar but he said 'everyone's recovery is different'. So you don't give any advice and hope we just recover without any guidance?? Ridiculous.

If in doubt call your breast cancer nurse and ask for physio referral to teach you what you should be doing.
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Happy New year to you too Milli and all the ladies on here.

Christmas was lovely. Had my sister and 91 year old dad over, he was in great form. Amazing guy.

I managed to fight off catching my son's cold all December, only to catch it NewYear's Eve, so I missed the one party I was looking forward to and am ill first week back at work! (Always looks dodgy!)

Shook it offafter 2 days, congratulated my immune system, only for it to decide to come back with a vengeance overnight!

Currently creaking about the house glands up in my neck and groin... I look like a hamster!
Part of me panics now at any swollen glands. I'm sure it is the cold, but not sure if I need to phone doc or not (ours are logged jammed cos everyone seems to have this damn cold)

What do you think? The glands one side in my groin really hurt. Never had any issues with them before (always had issues with throat, that does not worry me)

Gargling with warm salt water, taking paracetomol, ibuprofen and vit C supplements.
Vicks on chest.
Off to get some echiachae.

Any sworn by tips for colds?
milli
Member

Re: Abdominal swelling 6 months after diep reconstruction

happy new year to you all. here's to a healthy cancer free future. x
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

My 1 year anniversary this week!

Tummy bulge still there but definitely not as bad as it was. Tried a HIIT aerobic class last week on mini trampolines!! WHAT was I thinking??
The instructor is cool though and I just hide at the back bouncing around at my own pace!! Will be a while til I'm race fit 😂, but ladies, it is completely do-able! (I could have started classes 6 months ago, but my head was not in the right place)

Boob still has odd lump down the side and oedema lump under aureole, but I'll be honest, not been doing my massage 😱😱 so probably my own fault 😜
Abdominal exercises make me feel very strange the day after, not quite pain, just very taught (doing Joe Wickes low impact beginner 15 minute hiit training on Youtube... brilliant!! After Christmas going to try his 90 day weightloss program...
Vickio
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi there. I am in the same boat and I wondered how your situation was  resolved ...or did it resolve itself? At 3 months post op  I am swollen above my pubic area on the right side and generally feel very tight and uncomfortable. My PS says there is nothing wrong but I am a bit concerned be ause a friend who had the same double diep, had zero issues. My abs were tightened during surgery...

milli
Member

Re: Abdominal swelling 6 months after diep reconstruction

I still have hardening of the breast and one is misshapen after operation no one has mentioned massage. my PS consultant said it'll be sorted on next operation but who knows how long I'll be waiting. I'm nearly up to my 4 years now you just want it finished and behind you. Elizabeth I hope your seromas have stopped, I had numerous weeks of them sometimes going in twice a week to be drained before they decided they needed to operate again to remove it
Powdow
Member

Re: Abdominal swelling 6 months after diep reconstruction

Thanks La La,

Made an effort today to start the next stage (overhead) properly. Just hoping I progress as easily as I did (well I know it's going to harder) with the exercises after SNB
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Best advice I got was to listen to my body.
Should feel a stretch but not to the point of pain.
Don't go mad, but don't forget to do them every day... makes a massive difference to your longer term mobility.
💜
Powdow
Member

Re: Abdominal swelling 6 months after diep reconstruction

Jillibe,

Thanks. Yes I did get a leaflet, but the overhead arms one had the 2 week scored out and replaced with a 1, I thought this was too soon. My op was on the 7th. I did do a walking up the wall one after a week, it was fine, but read this thread with the link and stopped. It's just not very consistent is it?
jillybee
Member

Re: Abdominal swelling 6 months after diep reconstruction

Yes,go for,e.g.2 weeks post op,2 weeks after the day of your surgery.I was told not to lift anything heavier than a kettle for 2 weeks,then between weeks2-4 could peel vegetables......then I could start hanging washing out.It is important to keep your shoulders moving,

You should have been given a leaflet.I had one explaining the surgery and post op exercises.

it is hard as you don't want to do any damage,but you have to ensure your arm/s don't stiffen up.

i do remember,to keep moving arms,shoulders,as after 18 months,that is basically as far as you will go.💞💞💞

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Exercises and massage definitely helped with the initial arm pain (I thought I had cording, sharp pain from wrist all the way to armpit, but was possibly lymphatic tension. Still very tight feeling in armpit... Massage helps relieve this)

Originally whole underside of arm was totally numb to touch, but sensation slowly returned over 6 myhs I'd say... still numb under that arm, but that is really common after mastectomy/ lymph node removal.. probably never get feeling back in my armpit. Used to it now (though it feels weird putting anti perspirant on or shaving 😜 definitely can live with it.)
Powdow
Member

Re: Abdominal swelling 6 months after diep reconstruction

Thanks LaLa

How long did it take your arm to settle (I quickly read another post of yours and saw that you had the horrible arm feelings!)
How are you feeling now? Is everything settled?
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

I'd err on the side of caution and take it as 3 weeks after your op.
Any doubts, phone your breast surgeon to get clarity (I found the breast surgeon more interested post op than the plastic surgeon! Was my breast surgeon that got me referred for physio when I developed lymphatic tension in my armpit/under arm. My PS gave the impression he could not be arsed/ that I was an irritant! But I guess they are all different 😜)

Wow. 2 weeks post op now seems aons ago! I'm nowalmost 10 months.
May not feel like it right now but time will fly by.
Look after yourself 💜
Powdow
Member

Re: Abdominal swelling 6 months after diep reconstruction

Hi,

I'm 2 weeks post op today, mx with DIEP recon. Should I be doing the 2nd stage of exercises now? ie the ones over the head. I find the leaflets not exactly clear. The leaflet I got from physio said 2 weeks after op do the following, which was the overhead ones, however the 2 had been scored out and replaced with a 1. I thought this was a bit early so didn't risk it. Breast recon nurse said her leaflet would say 2 weeks after, don't think I got a leaflet from her. Then I look at the link below from Guys & Thomas and it says in the 3rd week. Now would tomorrow count as the start of the 3rd week, or would it be next Thursday (when I will be 3 weeks post op on the Wednesday)
They don't make a simple thing simple do they?? Why not just say on day 14 start these etc!!
Or is it me?

Anyway, if some of you can advise when I should start thd more advanced exercises I would be most grateful!
La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

No, no bladder issues..
milli
Member

Re: Abdominal swelling 6 months after diep reconstruction

you seem to have really been through the mill. It's not pleasant all the after effects, i was sick of having seromas drained, eventually mine had to be cut out. La La the exercises really help pity physios at the hospital I attend don't follow up on patients they were supposed to give me more exercises after a few weeks but obviously I've slipped through the net. Has anyone on this site had any problems with their bladder after this type of operation? hugs to all
Mrs Danger
Member

Re: Abdominal swelling 6 months after diep reconstruction

I hady cancer 8 years ago and delayed reconstruction for various reasons. Then my PS suggested an expander 2 years ago, we did this and it went wrong expanding in my shoulder area and wouldn't expand in the right place due to radiation scarring. The PS then said that we could go ahead with a diep flap, this was done on 27/7/16, I thought everything was going ok, drains out after 10 days, then various areas on the wounds started to leak so have had colostomy bags attached to my abdomen and breast. Wounds now drying up still seeing the nurse 3 times a week for dressing changes however I have had terrible pins/ needles in my left hand (side of my diep) so was put on amitryptiline to hopefully help with the nerve damage although I have been told it can take 4-6 months to be better. It now seems that I have got a DVT in the same arm, my lower arm and hand are swollen, I already have bad lymphodema in that arm. I also have a large amount of fluid under my new breast (in the muffin top area). This is all on my left side where I had the diep, beginning to wonder if I can cope with having my right breast lifted they were also going to remove the upper abdo skin area. When I'm fit I normally swim every day and I'm missing this so much, supposedly back to work next week. 

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Elizabeth, seems we all had similar experience re poor advice post op!
I found this myself: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/physiotherapy/Physiothera...
It is really good doc specifically for our operation recovery.
Don't know why they all don't provide this.
(I was discharged on a Saturday by a 'bank' nurse who had never worked with cancer patients before! Clueless. I was not given ANY post op care advice!)

Sounds like it is worth asking for a Macmillan physio.

You are a little early in your recovery to be going to a gym (you need to call your surgeon and ask when this is safe... I think it is around 3 months, my physio I see for my lumpy boob and lymphatic tension wrote me a starter program I can send you if you message me your email (can't put email in forum messages)

jillybee
Member

Re: Abdominal swelling 6 months after diep reconstruction

If you seek out a Macmillan Physio or your GP....they maybe able to get you a 3 month free membership for your gym,and then your instructor can advice.

I did a lot of walking,then after 3 months post op went back to Pilates,Body Balance and now swimming.

My gym is excellent.For less than £25.00 per month get classes,gym and swimming pool Have just started Aqua tone ....that is brilliant.💞

Elizabeth
Member

Re: Abdominal swelling 6 months after diep reconstruction

Thank you for replying it's so nice to talk to someone, what exercises ? No one has even mentioned this. I have been trying to walk as much as possible. How do I get help with gym costs ? I don't want to mess this up ! Xx
jillybee
Member

Re: Abdominal swelling 6 months after diep reconstruction

La la...I received a 3 months medical referral from Macmillan   Physio for my gym,lets you in gently,and I do body balance and was a weeble on my swollen tummy for a while.I have hardened scar tissue,in my abdomen,following seroma capsulation.Had 2 further ops,but now stuck with adhesions,and they are on my scar line,and bowels...lovely.

my hardened fat in my boobs finally dispersed.

i am also swimming,Aqua tone,walking and Pilates.Am a year now from all my various  surgeries 11 altogether,plus 4 2000-2006  after breast cancer first time round,and feel great.

enjoy your yoga,so lovely to stretch💞💓💓💞💞💓💓

La-La
Member

Re: Abdominal swelling 6 months after diep reconstruction

Oh Elizabeth you are still early in your recovery!
Wow, 8 seroma drains is a record! Hope it has settled down now.

Have a look at the great DIEP flap op recovery guide from Guys and St Thomas (link should be in thread below, if not pm me and I'll send it)

'Make sure you do your exercises' is my advice.
Nice and gentle, don't go mad, but essential to do them regularly to improve your mobility and reduce scar tissue (I did not do tum exercises often enough and now have some issues with scar tissue adhesing in my tum - feels like the abdominal scar has been stitched to the inside of me! Nice 😱 )

Right boob still has big lumps in it (like hardened fat). Ruins the shape. Waiting patiently for it to soften. (Physio has been massaging it weekly 😜 but it only softens for a few days then goes hard again.
Hope I am not stuck with it.

Hey Milli, how are you doing? Great that you are finding the exercises useful.

Last herceptin for me next week. Hoorah!
Was making me feel increasingly arthriticky in shoulders/elbows. (Sometimes hard to stand and walk in the mornings or if I am sat on cheap chairs for too long). Hopefully I'll leave all that behind me.

Started doing yoga a month or so ago... find it hard to lie flat with arms overhead in a stretch, but has got easier each week and does chill me out.
Was getti g quite a few muscle spasms and cramps but yoga seems to have made them stop.
100% recommend yoga ladies!

Got a 'prescription for exercise' from gp too, basically get 3 months free membership at our sport centre, so I am going swim/gym/classes 3 times a week. Not finding it easy but can feel my energy reserves increasing. Ask your doctor for one! (Don't know about you, but after a year's cancer treatment I need every bit of financial help I can get! Gym membership is a luxury I can't afford quite yet!)

My brain is less fuzzy every day now.
Still forget things and attention to detail is not what it was. Don't talk to me about remembering any new people's names! Hopeless. Losing vocab too! (chemo brain is Just like baby brain!)

Overall though, feeling a lot better.


Elizabeth
Member

Re: Abdominal swelling 6 months after diep reconstruction

After reading so many comments about swollen tummies I must say I'm relieved! My diep flap was nearly 9 weeks ago . I had the fluid from it drawn off 8 times( twice a week ) at the beginning. Now that has settled but my tum is still painful by the evening and the lower part is still swollen, I think I'm maybe expecting too much to soon, I also get so tired x
milli
Member

Re: Abdominal swelling 6 months after diep reconstruction

how's everyone doing this week?. the exercise sheet recommended much better than what I was told to do. the stretching exercises are really good to do.