Breast Cancer Now Forum

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/Physiotherapy-advice-after-breast-reconstruction-surgery-using-a-DIEP-or-TRAM-flap.pdf 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) ... View more

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. ... View more

He sounds fab, much like (removed due to Ts and Cs) my breast surgeon. Can't recommend him more highly. But my Plastic Surgeon is one of these types that looks at me like 'how very dare you question me? Do you know who I am?' - I may be imagining it, the guy is super busy and only has a non medical secretary between him and his patients.. I had private health insurance and orig was under a breast consult in Basingstoke, but he only did LD flap so I had to shop around to find my own PS who would do doyble mx and DIEP simultaneously (I just wanted one op, hated the idea of expanders or any delay) So I ended up having an oncologist in Basingstoke, a breast consultant in Cromwell Road, London, and a Plastic Surgeon in Charing Cross Hospital, London! Absolute debacle getting anything co-ordinated and I ended up having to co-ord them all to communicate with each other! (distribution of ct scans/bloods/echos done at Basingstoke became a major admin challenge!) Honestly think I'd have been better supported by NHS. (Could have had it all done at a hospital 15 minutes from me, and had a single BCN look after me) At least I can say 'you live and learn' 😜 But boy it was all a faff. We should have something like Checkstrade for doctors and surgeons! That'd be great when choosing a surgeon 😜 ... View more

Definitely worth getting wounds swabbed by your GP's dressing clinic nurses... whole reason mine took 2 months to heal was bloody infection. (My neighbour is a DN so she spotted it first, I ended up changing my own dressings as Charing Cross did not co-ord with my local GP so there were no DNs arranged for me... I had to be driven to GPs to see nurses for dressing changes... in the first couple of weeks that was a nightmare (we live on a bumpy old road!!) Does piss me off that there do not appear to be any standards and protocols in place for such a major op. (Charing Cross gave me NOTHING. I found that doc by googling!! Showed it to my PS and said he should provide similar, but he poo pooed it and said 'everyone is different'. Well I think we can safely say there are many of us that need clear advice on exercise, how to keep wounds clean, how to spot seroma, and what is 'normal' and when we need to call PS or A&E!) Such a massive operation. Be interesting to hear ftom anyone that had the op at Thomas and Guys, they seem switched on there. ... View more

Is the wound infected? Is that why it won't heal? I managed to contract pseudomonas aeruginosa, wound just totally fell apart all around one 'nipple' (gross) PS, DNs and dressings clinic nurses all stated it would not respond to antibiotics and I had to just keep cleaning and redressing it (just kept getting worse!) Then I copied my breast surgeon in on an email to my PS and he put me on an antibiotic straight away andliterally days later the wound started to close up and it got rid of the infection. (So pisses me off that one person seems to know one thing whilst 5 others were all adamant antibiotics don't work!! Are they swabbing you each time you go to dressings clinic? (mine got told off by my breast surgeon for not doing so... again, not all on the same page.) ... View more

Oh Milli, sorry you are feeling so low. Mine is swollen only one side too (just to the right of my 'new' umbilicus, about a 4 inch diameter, and is apparently around one of the areas where they tunnelled through my stomach muscle to free up the arteries (bad cough post ip did not help, swear I blew a few deep stitches out!!) I have no swelling on the lower abdomen on that side. (The left side I had SIEA version, way less intrusive and zero pain, but that is rare you can get away with it) Sounds like you have been through the mill having to be opened up again... I was getting to a point where I was questioning the operation, but for me the alternatives were really not an option. I could not bear mastectomy scars, and I have a bad back so LD flap is not viable as it pulls the muscle round from your back and a very common complication is back pain. (I already have enough problems there!) Plus I really did not like the idea of scars on my back for some reason. I know we have scars on our tums and around nipples, but they'll fade/ are hidden (even in my bikini last two weeks, I felt 100% confident no one would see them. Would be hard to hide back scars on hols. Bear with it, Milli... you have had a set back with your recovery but you will get there. (I was saying EXACTLY the same thing as you a month ago... was so pissed off with lack of mobility and swollen tum. I also had the initial pleasure of my wounds failing badly due to infection. (AWFUL 2 mths post op watching right boob fall apart and desperately fighting to stop left boob and umbilicle following suit!) But they did eventually heal. I have to wait til Oct for revision surgery (and new nips if I want them... not sure if I can bear another procedure) I think my expectations were a little too high on this op. Was expecting lovely smaller higher noobs... instead I have gargantuan H cups with are already drooping! (They were originally lovely and pert) I do feel let down, but hopefully he can liposculpt them to a nice D cup as promised in Oct. Someone asked me if I'd recommend this operation. I said they'd have to ask me in a year! All the stuff I read said recovery was 3 mths... turns out FULL recovery is 12-18 months! Think having correct expectations (and decent post op instructions!) would have really helped. We all need to feedback to our surgeons, they need to provide better care. ... View more

This is the link to the full Guys &St Thomas guide I mentioned...great photos/advice from their Physiotherapists (Charing Cross gave me NOTHING!) Print it off, it is brilliant. http://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/physiotherapy/Physiotherapy-advice-after-breast-reconstruction-surgery-using-a-DIEP-or-TRAM-flap.pdf Hope the link works... if not pm me.. ... View more

I can't post the link but if you pm me I can send you the great guide from Guy's... great for early recovery. I would not massage seroma. Just wait for your session with ps/ultrasound. Even now my bulge feels worse at the end of the day... especially if I have been very sedentary. I regret I was not more active eatlier on (not 'going to gym' active, I mean long wlks and lots of stretches) Hang in there ladies... I just spent a lovely 2 weeks in Tenerife with my little boy! I wore a bikini without caring (I am size 16, but the diep has given me a flat-ish tum at least!!) I was in the pool every day playing water polo/volleyball (really would have loved just to sunbathe and rest, but 12 year old son dragged me off my sunbed!) Went to a massive waterpark TWICE (all day up steps and down slides on rubber rings, laughing my head off). Even clambered around a volcano! It's only 7 mths since my operation remember! I am amazed (and I had LOADS of complications) It does get better in a comparitively short timeframe for such a huge operation. I just seem to have turned a corner since my PS reassured me. You have lots to look forward to ladies. Won't be long now 🙂 ... View more

Teresa... You are still very early doors in your recovery. I had seroma (was like a water bed across my tummy!) and had it drained 3 times over a month... on the 3rd time he also injected a steroid. That stopped the seroma. I finally got to see my elusive PS last month.. he has told me my bulge is completely normal, and will settle down over 12/18 months (why he could not have told me this when I last saw him, or in response to one of my emails I do not know!! Again, a guide document telling you what is 'normal' would have helped!!! I was given nothing!) I had the benefit of a cat scan in May that I had a cooy of, so I'd printed off relevant scans and got him to explain them to me. Short story is: I am fully healed and apparently should have been doing lots of exercise to free off/ break down scar tissue. (Again, he did not tell me this and my physio was worried about the bulge so advised no stomach exercise til I saw PS!!) Contact your PS for reassurance about what is normal recovery and at what point the bulge will dissipate. Mine told me 12-18 mths. Don't panic.. ask questions til your mind is at ease. But from the sound of it it is normal part of recovery and once scar tissue has broken down bulge should reduce. I'm currently on hols in a bikini in and out of a pool bring very active with my 12 year old! It feels weird but doing ok. It gets better Theresa (I am 7 mths from op date) ... View more

Worth reading through the whol thread, Lizzie... lots ofadvice on here. Marks & Spencers and Debenhams have trained bra specialists. I strongly advise phoning first though to make an appt to endure one of the more experienced fitters attends to you. Do you have a 'chicken fillet' prosthesis yet? If so take it with you. Are you gont to have reconstructive surgery at some point? ... View more

Yes, at first it is pretty hard getting a good fit. I have a Royce one and wore it quite a lot in the beginning as the fabric was so stretchy, fit was good. But it did not give a lot of support for my noobs. Good luck ladies xx ... View more

6 mths post surgery and I have 2 pieces of advice for ladies with large boobs: 1.AVOID SPORTS BRAS if you are larger than a Cup!! Damn things just squished me at a time where I just needed support. Surgeon now admits compression was not good for them. 2. Get yourself properly measured asap post op: Just properly measured and found out surgeon reconstructed me to an H cup!! (From an E cup... and we had agreed he'd make them D cups!!! I am fuming... they are ginormous, lumpy and painful). No wonder I have had trouble and wasted money on so many bras!!! 3. You need to learn how and when to massage them to prevent lumps forming. Needs a specialist physio with post breast surgery/ lymphoedema training. I now have a lovely young man trying to pummel the lumps out of my new monster boobs every week! Ouch! Wish I'd been shown how to look after these better early days! ... View more

OMG ... just bought a Miss Mary of Sweden wireless bra (only went up to 38F, but it fits BEAUTIFULLY! Ridiculously comfortable, soft wide straps, stretchy soft cotton but supports me really well, and quite pretty. What a relief. Model number is 2105. Lots of colours. For immediate post op you would benefit from a front loader though ...they do asoft cup front fastening version too 2158 100% recommend them for larger cup sizes! (I cannot believe I am waxing lyrical about Miss Mary of Sweden! No more La Perla for me for a while... can we ever wear wired bras again??) ... View more

Hey girls... one year on, how are you all? Turns out I had 2 cancerous masses.. bigger one on left was stage 3 Her2, was one on the right too, 2cm Stage 2 (which was where I thought I felt one 5 mths before!! Stupid GP!) 6 mths chemo over last Summer Double mx and DIEP recon 28/11/15 Herceptin for one year, tamoxifen for 10. Six months now since surgery and I just dipped in here to chat to someone and saw this post again... was wondering how you were all doing? What a difference a year makes!! What a year! ... View more

Thanks xx ... View more

Yep, lots of change for sure. I feel bad for moaning about them in a way, after all, it is an amazing op... but it is also a HUGE operation and my recovery has been fraught with complications, so I am just a bit cranky/disappointed right now after going through all that that I end up with gargantuan boobs that he knew I specifically did not want. I have my fingers crossed that come time for revision surgery he can get them down to a more practical size... here's hoping! ... View more

OK... so I just remeasured myself and if my tape measure is to be believed I am now 38H!!!! (He was meant to be reducing them initially to a D!! With planned weightloss the target is 36C.) So maybe that explains the problem with Macom!!! (I had pressing in on the swell of my bosoms) Bloody H cups???? They are very wide now... I think that is why it is hard to get them into any shaped bras. He said he can liposcult them come revision surgery, yeah fine, but I just wish he had not made them such monsters in the first place. He KNEW I did not like my E cups (make life difficult... I horseride and snowboard... also made it hard to find clothes that fit. I saw the first post surgery full length photo of me yesterday ... boobs look ridiculous. (Maybe London plastic surgeons are just too used to doing boob jobs for WAGs and porn stars... versus 50 year old mums from Hampshire???) Isobelle I think you will be fine with Macom, give them a go. Extremely good design. ... View more

We are all having very similar experiences! I am 5 months post op (28/11/15) and have 'the bulge' around and on the right of my new umbilical.   Worsens when: I am seated for long (I am home based and sit all day!) When I stretch If i do not wear support pants. If I wear jeans/skirts that rub across umbilicle area   I wonder if there is any pattern to us all here? Any of the below in common?   1.Cough: I had a bad cough when I had my op, turned very bad post op and I had a hacking cough for 2 months that hurt like hell when I coughed (did not reach the towel in time one time and i swear it felt like I was being shot! (One of the only times I cried like a baby from the pain. Possibly blew some deep stiches?).   2. Drain rub?: I was ambulanced back in to local A&E 5 days after I got home, with excrutiating pain right where the bulge now is... PS suspected the last drain was rubbing from the inside. Drain was removed. (Hard to tell if that was the issue as the pain went when paramedic gave me morphine... his stuff was way better than stuff I had post op!;)   3. Seroma: I had a lot of seroma in my tummy on that side after drain removed... PS he drained it with needle 3 times, on the third time he gave me steroid injection (the seroma felt like a waterbed... pressed it and it was slooshy... my Bulge does not feel like it is fluid, it feels like a very full sponge. Really uncomfy.   4. Lack of Post Op Advice: I was given NO take home info when discharged re post op care/ exercise/ massage/what is normal/when to worry. Not even told how important support garments actually are. (My PS said 'the jury is out on whether you need to wear support pants or not'! I can't help but feel if I'd worn decent support garments non stop for first few months that I would not be in this situation now!)     My PS is also very lackadaisical about me post op (we don't all have the same one do we??;). VERY hard to get him to see me or take my concerns seriously. His sec just replied to my email saying 'it's normal, he's not concerned, he'll see you in May as planned'. Wow, he has not even seen or felt my bulgy bit and he knows it's nothing to worry about?)     My boobs have formed lumps which is a hunk of fat hardening and an area of very thick skin. Very uncomfy and painful. I  think if I had been shown how to massage them and how often/hard, then I would not now have lumpy boobs. I have FINALLY managed to track down a specialist physio who is massaging the lumps out of my boobs, and HE is a little worried about my tummy and has advised me to go to my GP to get referred for an ultrasound first in case of hernia (he has told me not to do abs exercise til I know what the bulge is)   I think the Plastic Surgeons need the equivalent of the BCNs, someone we can pop in to see and say 'can you just have a look at this to see if it is something the PS needs to see?' I appreciate how busy and important they are, but they need to show some empathy. These bulges are so debilitating, and, like you ladies, mine really does get me down. (and my son, who still does not have 'mum' back after a full year now!)   I hate the thought that this is it and I will have to just put up with this feeling now. It hurts and I can't wear anything that sits on my waist as it rubs. I can't exercise properly yet either. ... View more

Would be great to hear how you two are doing now a few years on... I had double MX with DIEP one side, SIEA the other on 28/11/15 Developed pneumonia post op and the resulting hacking cough I am sure has blown something out in my tum! Mine sounds very much like yours, Preston_Girl. I don't think it is a hernia as such, but it feels like an area of tissue is very swollen (imagine a sponge full of water) Really uncomfy, gets worse as the day progresses, gets worse if I am sat down for long periods.   (Duffer - I had the overhang you mentioned for first 3 months, but I have now lost weight on the top half of my tum and it seems to have evened out on the SIEA flap side... I looked like a light bulb at first, all tight and tiny around the bikini line, but still with my big upper tum!)   Surgeon is very lackadaisical about my bulge... says it sounds normal and he'll see me as planned in 2 months (but my bulge meanwhile is as uncomfortable as hell and stopping me really getting back to normal... exercise exacerbates it too!)   If you are still on this site ladies it'd be really helpful to hear how you got on. ... View more

Isabelle, please be careful when buying Macom... I bought the Macom signature bra on recommendation from my surgeon.   They do not specify cup size, they state the cups will stretch to fit whatever size your breasts are, but this is limited. I bought the XXL one. My boobs were 40E immediately post surgery, now 38E, so whilst the fit around my ribs was lovely and comfy, the seam across the swell of my breasts pressed in and was uncomfortable/painful on my new post surgery boobs (left red lines after 10 mins) My breast surgeon suggested snipping the top seam with scissors! (I was not impressed at the idea of setting about my very expensive post surgery bra with scissors, but may try it!)   If you do order Macom I recommend getting the size larger than you think you need as well as the one you think will fit and returning the one that doesn't (although XXL/40 is the largest and it is too small for my E cups..) Maybe try the iBra? It looks a little bigger in the cup on their website.   Better still, ask your BCNs if they can recommend someone local whom you can visit and try some on (most Plastic surgeon's secretaries or BCNs have a local 'bra lady' they can refer you to.)   PS: I have spoken recently to a different plastic surgeon and he was astounded I was not told to wear a full compression garment, the one that has shorts and comes up under your bra with shoulder straps... in retrospect I really wish I had invested in one of these..... wasted a lot of money on Primark/ M&S 'support' pants that turned out to be either innefective or super tight around my ribcage (M&S - nice support but Lord they are tight around your ribs!)   (Nice M&S one I recently bought comes up to my bra and has shoulder straps so is not horribly tight on my ribs... but this is 5 months post op so I don't need the same level of support... I have developed a bit of 'bulging' on one side adjascent to my new belly button.)   ... View more