Breast Cancer Now Forum

It’s 6 years now since I started taking a weekly alendronic acid tablet. I took Letrazole for the first 5 years; this adversely affects the bone health and so the alendronic was prescribed to counteract that. I stopped letrazole after 5 years and am now taking tamoxifen, which I am told does not affect bone health. The hope is that my bone health will now improve to cross the borderline back into normal - last bi-annual scan I was in the mild osteopaenia range which I was told is good even for a healthy woman of my age. I’m not counting on it though - apparently some people end up taking alendronic acid for life. ... View more

I had a TUG approx 2.5 years ago. I play tennis for 2hrs, 4 times/week. I also go to the gym occasionally and use weights machines for my legs. I don’t have any problems at all with the leg. Straight after the op I did notice a very slight lag in that leg to fully stabilise the foot when I stood up. This sorted itself out within 24/48 hrs. I believe that the muscles surrounding the missing one had simply and quickly learned to take over its job. This is just my theory though. I have met a woman who started to run 5k far too soon after the op and opened up her leg wound which then took a year to knit together fully. So I would caution against any rush back to serious exercise too soon.   ... View more

See my post dated 4 December 2018 in this thread - just keep scrolling till you reach it. TUG activities plan highlighted in lilac. Good luck! ... View more

They gave me I/v painkiller at the end of the op. I didn’t need any painkillers at all after that, though they did give me ibuprofen & cocodamol to take home, but I didn’t need to take them. The thigh was only sore if I overstretched and pulled on the stitches. There was no pain at all in the breast area. My thigh drains were removed in the evening of the day after the op. So I was then in normal clothes (including pants!) and strolling around the hospital in my gym wear at a cautiously normal pace. At home I went for a walk every day, going a bit further each day to build it up. I did get a bit out of puff for the first week but it was back to normal after that. I had plenty of energy after 3 weeks so I had to force myself not to overdo it and to stick to the weekly activities chart (see previous post) so as not to risk opening the thigh wound.  I imagine that having both sides done at once will be more demanding and I hope that it all goes smoothly for you. Best of luck. ... View more

 I started on Accord and that’s the only make I have taken. After a couple of months I developed painful finger joints. At 5 months I got  trigger finger which was cured with a cortisone injection. By five months  the fingers had got better but my feet were hurting. As my feet got better aches appeared in knees and elbows instead. As these got better it went to shoulders and neck. But I must say that all of these have improved and three years on I don’t any joint pains. I should add that when pains appeared I did some sport or a workout in the gym and the aches wore off very quickly, they were only a problem each morning when I woke up and the more I moved the quicker they subsided. Hope that helps! ... View more

Thank you, it sounds as though I can either reduce the risk by having the teeth crowned now, or accept the risk and go into hospital if a tooth suddenly needs a repair involving the jaw. The oncologist says I will stay on alendronic acid for at least 2 more years, making 5 years minimum in toto. Maybe I’ll just stick a soup diet till I’m off these tablets! ... View more

Thank you, that’s a good idea, I’ll see what I can discover after the weekend. ... View more

I spoke to Accord direct 3 years ago when I had trouble finding a pharmacy to get this brand for me. Even Boots said no. They were all worried about a recurring £5 special order charge which by law they are not allowed to pass on to the customer. Accord told me that it is a “Special Order Free of Charge from Alliance”. Accord told me to say that exact phrase to any pharmacist and then there should be no problem as long as the pharmacy deals with Alliance. The irony is that Alliance and Boots are the same firm! ... View more

I initially wanted to have a silicone reconstruction as it’s a quicker op and faster recovery. However my plastic surgeon advised me of all the drawbacks of it, eg capsular contracture is common and the contraction can force the implant out of position. Also it needs to be replaced every 10 years I think. Or even removed permanently if your body keeps reacting to it with scar tissue/ contracture. And it’s cold. And it doesn’t feel like it’s part of you or move like it’s part of you. He told me that the “Gold Standard “ reconstruction op was the DIEP (tummy) reconstruction from own flesh. A much bigger operation, but with  better long-term satisfaction. The new breast is warm and feels like it’s part of you, it moves naturally, no capsular contracture. The main drawbacks are a longer recovery and a scar on the bikini line. Plus all the usual risks of major surgery. I couldn’t  have a DIEP as I didn’t have enough tummy flesh so I had the second-best  op which is the TUG using thigh flesh. You can see my thigh scars on this thread. I was told that it will be a couple of years before the scars go white, so the pics below are not the final result. My partner didn’t want me to have the TUG as he was worried about such big surgery. So I talked it through several times with my surgeon, who put me at ease about my many anxieties. I felt fully informed and empowered to make my own decision to go ahead. I  was also put in touch with a woman who had had the TUG op who showed me her results in detail -  breast & thigh - and spent time explaining everything and answering all my questions. Added to this I went to the Show and Tell evening and saw and heard approx 10 more women talk about their DIEP and TUG ops. I took my partner although obviously he could only attend the Tell part and not the Show part! In addition 2 close members of my family had DIEP ops 3 years ago and I have a friend who has had a TUG. All are fine and are pleased that they chose that option. In fact we all feel lucky that we were offered this option and had specialist DIEP/TUG surgeons  available locally. So if there is a difference of opinion about what the best choice is, my suggestion would be to get as much face time with relevant consultants and women, and take the family with you to these meetings. Does your surgeon do the DIEP and TUG ops?  Or is he/she a silicone specialist? Not all reconstructive surgeons are trained to do both, I think the issue is the specialist extra training in microsurgery needed to connect up the blood supply for DIEP/TUG. Plus the op theatre team needed is bigger - at least 2 surgeons- and the op theatre is needed for much longer, and the post op needs specialist reconstruction nurses on a one to one basis for the first 12-24 hours to check every 15 mins that the blood supply to the transplant is good. All this costs the NHS more  time and more money compared to the silicone option. It seems to be a matter of luck whether you are referred to a consultant  who specialises in DiEP/TUG  and does it all the time. Maybe a good idea to ask for a consultation with a DIEP & TUG specialist if you haven’t done this already, plus go to Show &Tell plus meet people who’ve had the ops  to help you make up your mind? ... View more

Here is the chart that I was given and followed carefully. Please note the asterisked sections re TUG. Also I should add a word of caution that this plan was suitable for me and may not be suitable for everyone. And that recovery from a bilateral TUG is likely to be more demanding than from a one-sided TUG. Nevertheless it may be a useful guide for you. But don't stress too much about it if things take a little longer for you, we are all so individual. Sorry to hear that you have an area that isn't healing, this is probably fairly common. I was lucky in that respect. I just kept using the brown tape for 6 months and it all knitted together well. ... View more

I am now 2 weeks post lipofill to fill a small dent at the top centre of the new breast. The op took an hour under GA and I was a day case, I spent 5 hours in toto at the hospital. I am pleased with the results but I am expecting that the op will need to be repeated at least once more, in maybe 6 months’ time, as some of the transplanted fat will inevitably die off. They took fat from rear thigh and hips. The resultant bruising was just under the skin and my rear thigh did look very black and blue. But it looked much worse than it was, it didn’t hurt at all, maybe just a bit uncomfortable to sit on a hard kitchen chair. No pills needed, not even paracetamol. The top of the reconstructed breast is now filled out nicely and matches the other one very well. I had a bit of minor bruising at the top of the breast, nothing Technicolor there though. I came out of hospital with 4 tiny plasters on my legs/hips; these were then swathed in thick cotton wadding around the entire thigh from top to knee and held in place by tight crepe bandages, with my own tight cycle shorts over the top. The wadding/crepe fell apart after 5 days. Its purpose was to prevent further bruising. Legs like tree trunks so I could only get loose yoga pants over the top. At the breast I had 2 tiny plasters over incisions which each had one stitch in, and for 11 days I had to wear a tight chest binder 24/7 which the hospital gave me, to keep the breast still whilst the fat tried to form a new blood supply. It’s important not to allow movement of the breast which could damage this delicate process. I also had to wear firm-hold Spanx power shorts for 11 days to stop further subcutaneous bleeding and to minimise the dents where the fat was removed. These were very effective and I can’t see any dents now. I am now wearing a very firm hold sports bra 24/7 for 2 more weeks to keep intact as much of the new blood supply as possible and not to shear the blood vessels by movement at all. For 11 days it was flannel wash only, I wasn’t allowed to get the plasters wet, also I didn’t take the chest binder off as it would hab been impossible to get it back on without help and I didn’t want to allow the breast to move if not absolutely necessary. Following the 11 day milestone, I could also dump the compression shorts and drive again, but I have to wait a further 2 weeks before going back to normal activities including sports/gym etc and before I can lose the sports bra 24/7. At 3 months post op I’ll see the surgeon to decide if the op needs to be repeated in 6 months’ time. Hope this helps! ... View more

At 2 weeks I was walking maybe a mile or two with no problem. In fact walking was fine from day one but I was sternly warned not to forget and accidentally step out sideways so as not to open/pull on the scar. I was very careful about lifting for 6 weeks so I made my own meals (sandwich, cups of tea etc) but I didn’t do any family meals involving heavy pots & pans full of water. My partner got everything I needed out of low kitchen cupboards before work and when he got home he picked up anything I’d dropped during the day. He did all the cleaning too. I had to shower in the evening so my partner could put my socks on on the morning before he left for work. I remember it as a fairly quiet 6 weeks full of friends visiting or taking me out to their homes for a lunch standing up in their kitchens. Did your hospital give you a week-by - week chart of what was permitted? If not I’ll see if I can find mine and post it here. I was told 6 weeks is the magic time when I can start to get back to normal - driving, sitting etc. And it was correct - at 5 weeks I still could not reach to put socks on and at 6 weeks I could do it. Hope that is helpful, just take it easy till 6 weeks and walk a bit more every day. ... View more

Same question re this thread please, which was in “Going through treatment /surgery” and is now buried in public archive and so doesn’t come up in forum searches for TUG any more:   https://forum.breastcancercare.org.uk/t5/Public-Archive/Reconstruction-TUG-using-1-02-thighs/m-p/1247738#M449746   Thanks very much ... View more

At 6 weeks exactly post-op I sat on a hard kitchen chair for a meal and it felt odd at first but it was easy to do, I was just a bit apprehensive about it. Within a couple of days later, sitting was completely back to normal. I would say don't push yourself: I was told to avoid sitting whenever possible. Lie down on a couch like the Romans to eat! I also started driving again at 6 weeks, which was liberating.   I wouldn't have wanted to go back to work at 6 weeks, I would take an extra week to do all those things I'd not been able to do whilst recovering.   Yes, I'm at QVH, what an awesome place that is!  We are so lucky to have a specialist plastics hospital in our region.   I'll let you know how the next stage goes. ... View more

Well done, the worst is definitely over!   I’ve got my first fat transfer op next month, they are taking it by liposuction from my non-operated thigh to even up the 2 thighs’ shape. They will do a small lift on the other breast at the same time. 90 mins in total in the operating theatre for these procedures.   Then 2 more fat transfers are planned down the line followed by nipple creation, tattooing and then it’s all done.   I didn’t sit down at all for 6 weeks except when I had to travel by car to the hospital. I was told that sitting on the wound reduces blood supply to it and could slow healing process. Also I didn’t want to stretch the scar at all. The sugeon told me that if I did ever have to sit down, it should always be on a soft cushion/pillow to reduce pressure on the wound.   i didn’t have any problems getting into the shower, maybe this is because I led with my “good” leg for this, I’m not sure.   You are doing very well considering that you have had much more surgery in one go than I did - you should congratulate yourself! And you will never have to worry about getting breast cancer again!!! ... View more

Hi!   I also had problems getting enough specific info which is why I've posted on here to help others.   Please bear in mind that I had the mastectomy done seperately a couple of years before the reconstruction.   Mastectomy:   Whilst in hospital after the mastectomy I just wore the hospital gown as I had leaky drains in for 12 hours. Then they sent me home with no drains and I wore a baggy button-up shirt like this one for about two weeks. It made it easy to change clothes as my armpit was sore where they took a few lymph nodes to check them. The breast area wasn't sore at all. I did get a small seroma but it didn't affect the bra size in any way. I wore the same bra for the mastectomy and for the delayed reconstruction.   I had the mastectomy at 8pm and I went home at 10 the next morning. I was up and about pottering at home thereafter although I did watch a lot of tv as I didn't want to hold much more than a cup of tea for the first few days. It got easier every day and I could do more and more.   Reconstruction:   After the delayed reconstruction this year, day and night, I wore a bra like this full cup sumptuously soft one with padding. I wore my usual size, I didn't have any significant swelling at all. The consultant really liked the shape of the soft light padding which helped to maintain/mould the shape of the new breast whilst it healed. It was very comfortable to sleep in. I'd suggest you buy one bra in your size, one in the next cup size up, and one bra back expander. Then after the op get someone to return the ones you don't need and get a few more in the correct size.   On top of the bra, whilst I had drains in for 24 hours in hospital, I wore the hospital gown. Thereafter I wore a sleveless yoga top like this one. Combined with just the cycle shorts it looked like I was alwys on my way to the gym!   For cycle shorts I wore expensive power shorts like these for 6 weeks, to compress the scar and to mould the thigh into a decent shape whilst it healed. Well worth the money. I was on the cusp between 2 sizes and so I got the bigger one. The lycra was very strong and it was the right choice.   For trousers I wore cotton joggers like these over my cycle shorts. They were very cheap, and quick and easy to wash if the leg wound oozed at all.   I had the delayed reconstruction on day one and I went home on day 3.  I was up and about immediately but I was told not to sit down for I think 6 weeks unless unavoidable e.g. for the car journey home from hospital. Standing, walking, & stairs were no problem. Getting to sit eg on the loo was very difficult for a week or even two as I was very worried about tearing my stitches out or opening the wound. My legs were very restricted in the amount the skin at the rear would stretch and they took exactly 6 weeks to fully recover. So do expect to eat standing up at the kitchen counter and to be very cautious lowering yourself onto the loo in the early days. Plus you may have read my whinges elsewhere on this site about not being able to reach my feet to put on my socks or cut my toenails. All these recovered well, it just needed patience, plus a bit of care and luck with the wound healing.   It's nearly 6 months after my reconstruction now and I am thrilled with the result. My surgeon is going to do a small breast lift on the unoperated breast, then 3 lots of lipo fat transfer over the next few months so the 2 breasts are as identical as possible, and also nipple construction and tattooing. Apparently you usually need 3 lots of lipo as 50% of the fat transfered gets reabsorbed each time. So in maybe a year from now I will have finished all the reconstruction work.   I hope this covers everything you wanted to know and do ask if you need any more info. I guess that a double reconstruction will be more demanding on you  in the recovery period than a single one and I wish you all the best.       ... View more

Hi    No, I don’t have any internal nerve pain, I never had any at all right from the start. My thigh is completely pain-free. I was given paracetamol and neurofen to take home but to be honest I didn’t need these. Both op sites were just a bit sore/tender if you touched them.  A lot of the tiny nerves in the skin are cut and the breast and thigh skins are permanently numb for maybe an inch all around the wounds.   You could ask your consultant about this and any other concerns as they arise, as far as I know the Specialist Breast Reconstruction Plastic Surgeons know about the risks and are very careful to avoid damaging the main internal nerve in the area. Definitely discuss this with your surgeon and he should be able to reassure you. Maybe something along the lines of “Have you ever had a TUG patient who has had a problem with this?”   I took a list with me to see my surgeon every visit and we spent 20mins going through it so he could reassure me on every point. This happened on maybe 3 separate visits as I thought of new questions such as  ”how many TUGs do you personally do per year and has anyone ever had any problems?”   Wound healing /opening / infection is a known potential problem for everyone in the thigh area and I had to go on a “Prehabilitate” programme run by the anaesthetists to ensure optimum physical condition going into the op. This involved  a month of ultra-healthy diet with no treats - plenty of protein and vitamins instead! -, no coffee, no alcohol, no smoking, plus 30 mins of vigorous exercise daily and 30 mins of relaxation /meditation daily. And no flights pre-op.   I met a woman whose thigh wound just wouldn’t knit together post-op and it took maybe 9 months for new skin to grow across. But she was still happy 3 years later that she had had the op.   My hospital monitors you every 15 mins for 12 hours after the op, then every 30 mins for another 12 hours, then hourly, to make sure that the transplant isn’t failing (losing its blood supply). They have a full theatre team on standby in the hospital all night  post-op and an empty theatre always ready so they can rush you back into theatre and quickly restore the blood supply if it seems to be developing any problems. I think that they have 9 or 10 specialist consultants in reconstruction. I would imagine that your hospital follows the same protocol but it may not have the luxury of an empty theatre if it’s not a specialist hospital for  reconstruction only. So it’s worth asking what happens if the transplant needs fixing in the hours after the op.   Do you have a specialist Breast Reconstruction Nurse that you can call at your hospital and chat through any worries or concerns you may have during your wait for surgery? Maybe she can put you in touch with another  person who has had a TUG who you can speak to in detail about it?   Hearing about your wait,  I feel very lucky that I only waited 4 months once I’d made my mind up, but I could have had my op within a month if I’d been willing to have it at short notice in December.   I wasn’t psychologically bothered when I was flat on one side, although I know many people understandably are. My main reason for having the op was that I was fed up with all the clothing and neckline issues that being flat brings. It’s such a relief not to have to think about that any more.   I hope that this helps you and I think that an occasional chat with your surgeon and/or reconstruction nurse may help you as worries / concerns inevitably arise during your wait.   Best of luck. ... View more