Hi,
I'm having tug flap surgery after finding out I have breast cancer.
They are using both thighs and I'm terrified, there's no information about it anywhere and I just want to hear from people who have experienced it!
Can anyone tell me what it's like!?
Thank you
Hi Zerotoon and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and although I haven't had this type of surgery, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I've done a group search and found these previous posts which mention this type of surgery and Macmillan has this information about TUG flap surgery.
While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Hi,
I had a TUG procedure(both legs) in April just passed and was as terrified as you ahead of it.
I found it reassuring to ask my surgeon to show me photographs of their previous TUG procedures to get an idea of the size of flap likely to be taken and the scar. You'll get a better idea of this on your own leg when your marked in preparation for surgery.
I found the first two weeks post surgery the trickiest as caring for both my breast and legs was pretty knackering. You'll want a second pair of hands most at this time. This does get much better though. I had leg drains for the first 14 days that took a bit of getting used to. I learned quickly that having a tote bag for each shoulder made coordinating drain bags when moving a lot easier.
My legs felt very tight but surprisingly sturdy during my hospital stay. I was quite ginger with my movement initially, but if like me you opt to put all your weight on your sit bones, you'll love getting up every now and again to keep the blood flowing.
I had physio on day two where I was taught the best way to get in and out of bed and keep my arms moving. Day 3/4 I then tackled stairs. Please don't be shy in asking the best way to navigate the toilet seat for your legs. I regretted not asking sooner. No question is daft post surgery. (This also gets much better)
I found laying with my back and knees slightly raised the most comfortable - worth considering how you'll do this at home. I slept in a recliner chair for the first two weeks as I found this the easiest way to get comfortable. I also found having a cushion for under my knees when travelling to and from appointments in a car really helped (I'm 5ft4)
The biggest challenge I have faced week three onwards has been keeping swelling down. This varies for everyone. I wear compression shorts all day/everyday(still) but I'm not in pain. I have found Skins compression shorts work best for me as regular cycling shorts just aren't tight enough on my legs. I also sit with my legs raised in the evenings. Once you're able, you'll finding getting onto all fours for cat stretches feels wonderful. My back and hips needed it!
I have mostly good days but do have the odd day were I get a bit tearful/fed up with recovery. That said, at week eight I can walk fair distances and while my legs are still tight they are gradually improving. I can see getting back to running(gentle jogging first) on the horizon which has really boosted my morale.
This surgery isn't a short road but I've found mine worthwhile. I'm really pleased with my reconstruction.
Hi Zerotoon,
I hope you are doing well and are well on the way to recovery after your surgery.
I'd love to know if you went ahead with the TUG flap or opted for an alternative?
I'm due to have a masectomy at the end of the month and I'm very keen to have a TUG flap instead of an implant. I don't have much fat so it is likely I will need to use both thighs too - but it really is all up in the air until I see the plastic surgeon next week.
If you could share your experience that would really help me.
Thanks x
Hi Paddleoptimist.
Thank you for this information, I've found it really helpful.
I'm thinking of having a TUG later this month. I'd love to hear how you are doing now. Are your legs just as sturdy as ever? Can you run again?!
Are you happy with the final look of your reconstructed breast? or do you think you could have achieved a similar look with an implant?
Also, did you need radiotherapy and if so, has this effected the final outcome?
Any update and further info would be so helpful!
Thanks x
Hi , I'm sorry to hear you need surgery and hope you're coming to terms with your diagnosis.
I'm pleased to share that I'm really happy with my reconstruction. It's settled well and looks/feels very natural to the touch. I don't think I would have got the same result with the implant I was offered. I'm still getting used to the change of sensation/numbness. It's not painful, just different. I was fortunate and didn't require radiotherapy. I remember how difficult it was weighing up my options when I was uncertain of whether I would need it, though.
I've had a few bumps in the road with swelling and cellulitis in my legs. Antibiotics, compression leggings and raising my legs when I get a chance have managed this so far. Unfortunately, I've been told this can be common in the first year post TUG surgery.
I've not had any issues with strength or balance. I am back running and paddleboarding. I'm not doing marathon distances in either yet but enjoying them all the same. I also attend pilates classes which have helped my mobility. I took a few one to one reformer pilates sessions before returning to my usual class(on the floor). I found the reformer frame really helped ease back in. Swimming was also great.
Happy to try and answer any other questions that come to mind as you prepare for treatment.
Hey,
Thanks for coming back to me so quickly.
I'm so glad that you are recovering well and back to running and paddle boarding!
It's also really comforting to hear that you are happy with the reconstruction and that it feels and looks natural (even if the sensation is gone)
I'm definitely struggling to weigh up my options. The thought of chopping off more bits of me than necessary is horrible BUT all the implants I have seen on someone of my size have looked very high and hard in comparison to the natural breast next to them. I feel like future me will thank present me for going through the TUG surgery...but it's so hard to make that decision when you know its going to be a longer recovery.
It's not 100% yet that I'll need radiotherapy BUT chances are high. From my research it seems that analogous responds better to RT than an implant.
I had to google cellulitis! That's pretty scary! Do you still need to take antibiotics? was it obvious to you that something wasn't right? Thanks for flagging that, I'll definitely be asking my surgeon about that!
If you don't mind my asking, how was your TUG attached? I'm having my nipple removed, so I'm hoping they can take the diseased tissue out through that hole and close up the nipple gap with the TUG skin, effectively creating a new nipple without an incision scar going through. Is that how yours worked?
Also, how is the scaring on your thighs? Did they take the fat from the back of your thighs or the inside? and how did you manage to sit / sleep with wounds on your breast and thighs?
I think that's all for now!!!
Thanks x
If you googled cellulitis, let me reassure you my leg didn't look anything like the images that immediately pop up! It started as a dull ache and a slight, hot rash in my lower leg weeks after my wounds had fully healed. Your care team will be looking out for it. A 7-10 day course of antibiotics resolved mine on the two occasions I had it. My surgery was in April so I was healing during an uncharacteristically hot summer(for Scotland) which was no doubt a factor. You'll be given antibiotics while you have your leg drains regardless.
I had flaps taken from the inside or each thigh. This included a small portion of my upper gracilis muscle(not essential for function) and fat. The scars runs from the middle of each thigh at the front, round the inside, to the middle of the back of my thighs(not obvious under my buttocks). It's about 5cm from my groin on each side. The height/position of this all depends on your own frame. Your surgeon will show you this as they mark you for surgery. My scar is a fine single line that is fading remarkably fast. I've been religious in my scar massage - your care team will keep you right with this as it makes a huge difference to healing. I do have a slight dip in my inner thighs where tissue has been removed but its not very obvious and is at the highest point of my thigh. This is also the only part of my leg that didn't regain full sensation(its not completely numb). I can move my legs in most directions, just working on stretching my gracilius so that I can move my legs in a 'full frog/clam' motion(when sitting, being able to drop my knees outward as I pull my heels towards my bottom).
I had a skin sparing mastectomy with nipple removed. They manged to remove all tissue through the 'nipple gap' then placed each flap horizontally one of top of the other (the best way I can describe it). You may have a small line that runs vertically from the bottom of your nipple, my surgeon explain that sometimes they need a little more space while placing your flap). Its very fine and also fading fast. Once I'm fully healed I'll have nipple options - I'm leaning towards a 3D tattoo as the best option for symmetry for me. Again, this will be unique to you. Currently, you would never know I'd had a reconstruction when I'm wearing my bra. I was wearing vest tops over the summer! I have a small scar under my arm where they removed lymph nodes. It's very flat and fading also.
Sitting/sleeping with both surgical sites wasn't too difficult/uncomfortable. I was quite numb for the first couple of weeks. You'll sleep on your back, head and knees raised, and be able to sit up in a chair with a pillow under your knees once your comfortable getting out of bed. My physio taught me how to do this on day 2. They're keen to get you moving ASAP and you'll be glad of it. I did get a little numb on the sit bones in the first couple of weeks. I slept in a recliner for two weeks once I got home. I just found it easier to get comfortable there. It was also less effort to get up and down. You'll be shown how to sit on the the toilet(with your good arm). This gets easier with practice.
I highly recommend having a tote back for your leg drain bags, especially if you have surgery on both legs. It makes coordinating getting out of bed, going to the bathroom, and moving around, much easier.
I was also thankful for the pillow I had to put under my knees when traveling to and from appointments in a car after surgery.
Offering a speedy response as I found it difficult to sleep when I had these same questions!
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