DN who I had ordered loads of stuff for me to keep at home. I think it depends on hospital/consultant you have, everyone seems to have different opinions on what should be done. the consultants that ive seen at the RVI Newcastle are really good except 1. my present consultant said I could go back to work after 4 weeks there was no chance of that I ended up off work for just over 6 mths. I wasn’t allowed to drive for 15 weeks. my initial consultant when I was diagnosed with cancer Mr Nicholson was fantastic I knew everything what was going on, all the treatment I could expect and what could happen to my implants which unfortunately it did hence the Diep operation. I could have a list of 20 questions and he would answer every 1 with explanations. he is 1 of the nicest people you could meet.
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 ?
Ha ha that’s funny we should start our own checkatrade consultans/plastic surgeons future patients would be able to choose. When I was diagnosed the nurse asked if I could wait 1 extra day for my results as I would get Mr (removed due to Ts and Cs) if I could. I’m so pleased I did, I only hope he doesn’t leave before I’m finished with my check ups. I couldn’t ever sing his praises highly enough he’s like your favourite uncle who you always want to see. I think with the increase in breast cancer they are all really busy. the consultant who carried out my DIEP surgery is always rushing about but he has so much work and he even came back from his holidays to hold his surgery. I know there well paid but by God they work hard. if anyone is down Surrey (removed due to Ts and Cs) is a lovely surgeon so polite and very nice on the eye ?
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.
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
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.
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
Elizabeth, seems we all had similar experience re poor advice post op!
I found this myself: 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)
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.
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
No, no bladder issues…
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!
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 ?
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?
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.)
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?
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.
?
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
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
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…