Breast Cancer Now Forum

Hi Sorry for the delay, but I don't check this site very often these days. I had the supermicrosurgery in April this year in Oxford and it cost £15,000. Yes it was incredibly expensive, but worth every penny. We cashed in a pension to pay for it. It is a 5 hour operation and I had two surgeons working on my arm at the same time. Unfortunately my surgeons believe it will be years before it is available on the NHS. Five months on and I've just got back from a week's holiday in Spain when I didn't wear the dreaded sleeve at all because it was so hot. My arm hardly swelled at all, except for the first day. I managed to get it back down with massage, and after that I massaged it regularly throughout the day. I am thrilled to be sleeve free for a lot of the time, although I do still wear the sleeve if I have a busy day. I was lucky, I fit their criteria for surgery almost exactly in that I had only just developed the condition and it was mild at 11% volume. At my 3 monthly check up the volume had reduced to 6%. I'm due to go back again at the beginning of November and to be honest if it doesn't get any better than it is now, I shall still regard it as a success. To be mostly garment free and not to have to worry about cellulitis and other infections is something I didn't think was possible when I first developed the condition. I hope this helps. We've already been through so much, it's rubbish that we should have to face this as well. ... View more

Good evening. Thought I would report on my 3 monthly check-up after my LVA surgery on 28 April. I am delighted to report that it is working! The % volume has gone down from 11% to 6%. There is no longer evidence of LD in my hand, hurrah. However, I must continue wearing a sleeve for the next 3 months and if I don't wear it during the day I should wear it at night. Dr Furniss is delighted with the progress and is sure that I will eventually be sleeve free. Can't tell you how relieved I feel. I realise how very lucky I am that we were able to afford the surgery.     ... View more

Hi Artemis. Think we're at same hosp, Salisbury? Mr K is my PS. I've had bilateral mx with implants but only need lipofill on left side which had cancer Reabsorption has already started. Fat was put in around top and side of implant. Some small amount along top has gone, fingers crossed not much more. Skin has stuck to implant so can see rippling where nipple was. Think he might want to do one more but find out in Aug. I had lot of bruising, front looked like I was wearing navy blue bikini bottoms. Didn't drive for 3 days. Uncomfortable but not too bad. Only on paracetamol by day 3 and stopped by day 5. But I'm retired so could take it easy for first week. I was offered cancellation which is why wait was only 5 months. The waist clincher is pretty tight. I'm size 12 these days, was size14 BC, and I'm wearing large. Bought one from M&S size 12 could hardly get it on so that went back! I'm really pleased with my recon, not too uncomfortable and can't tell in clothes or swimming costume. Seems odd now to see women with nipples! Have a good weekend one and all, and sorry for long post xx ... View more

I've come late to this thread so my experience may not be relevant. I had lipofill a week ago with fat taken from tummy only. At the weekly check I was advised to wear a corset 24/7 for at least 4 weeks, maybe 6! I had already bought a waist cincher from very.co.uk. You need to wear a decent compression garment in order to prevent fluid building up in the space where the fat was, and to help everything stay in right place! I had a small amount taken in January from my midriff but didn't wear the garment for long enough so I had a bit of a shelf. That seems to be improving. The results were really good, although it's early days and I know that quite a lot of the fat will be reabsorbed. I'm happy to answer any questions xx ... View more

hi Cazza. I'm lucky, i'm having the surgery on 28 april but paying privately. It has never been approved by NICE and was only offered by oxford pct briefly. the Royal Marsden have a surgeon who does it but it's only offered to their own patients who must meet very strict criteria. if you google lymphoedema and Oxford you'll find the clinic and lots of info about the surgery. it's really bleeding edge stuff, very few surgeons worldwide so i'm extremely lucky that I found the 2 working together in oxford. they are both going to operate in order to get as many connections as possible. I had the icg lymphography first and the amount of damage is pretty shocking. PT xx ... View more

Ah well, decision made. Surgery on 28 April. No choice really having seen the damage, so thank heavens I have that option. I'm also hoping to speak to someone who had the surgery last year who was more or less in the same position as I am. PT xx ... View more

Hi Lottie, Many thanks for replying so quickly, all information is useful. I'm pretty sure I'm going to go ahead. I received the report this morning and it appears that even at this early stage some of the damage isn't irreversible.  If the best result I get is the same as yours at least the LD will be reduced to 5%. The consultants seemed confident that as my lymph system is working quite strongly up until it hits the brick wall of damage that they should have a good number of lymphatic channels they can use. The longer I leave it the less likely that becomes. I also don't want to be at constant risk of cellulitis or any other infection. Naively, I thought I'd have the mastectomy, chemo and rads and then after a few months recovery time my life would snap back more or less to how it was. Instead, nearly 2 years later I'm still having to deal with the after effects of the treatment that saved my life. Sometimes it just sucks! But I have to remind myself, at least I'm still here ... PT xx   ... View more

Just got back from Oxford clinic having had my lymphatic system checked. ICG works by injecting fluorescent dye into both arms and tracking the movement of the fluid round the lymphatic system using an infrared light. It was really interesting to see on screen my good side looking like a brightly lit road map at night. Absolutely shocking to see the damaged side. Nice lights and channels in my hand and forearm and above my elbow and then - nothing but blackness in my upper arm. Lots of speckling and pooling where the lymph has seeped into the tissue in a couple of places. This is what causes the swelling. I'm lucky. I have options. My LD is very recent, and currently between 9%-11%. The lymphatic movement in the damaged side is still very strong, although ultimately it hasn't got anywhere to go. This makes me an ideal candidate for supermicrosurgery. I will have to self-fund as this isn't available on the NHS and I don't have insurance. Lots to think about. ... View more

Hi all. Was wondering how Ali_I got on with her follow up appointment at the start of 2015? Today I had ICG lymphography at clinic in Oxford, and the damage to my lymphatic system is quite shocking. As LD has only just manifested itself, for me there's a good chance the LVA surgery will make a significant difference. Has it worked for you Ali? My LD is between 9% and 11% and so far the damage isn't irreversible. Any update anyone who has had this surgery can give will help me decide whether or not to go ahead. Thanks. xx ... View more

Hi I'm on tamoxifen and have also been waking up between 3 and 4 a.m. Such a simple idea angiepops, thanks. I've switched to taking it in the morning when I get up and mostly sleep through until 6 now.  Funnily enough I still get a severe hot flush at about 10 p.m. regardless of when I take it. Really annoying! Luckily I haven't experienced any incontinence. Hope it's short-lived Kiki-Boo. xx ... View more

Hi Emily. Like everything else, waiting times vary from area to area. As you're in such discomfort personally I wouldn't wait 6 months. Even if I wasn't in discomfort I wouldn't wait. This is a chronic condition, and I believe the earlier it's treated the better the results. Have you seen your GP? S/he could refer you somewhere else, although you might have to fight for it if they're not very sympathetic. Don't know where you live but edited by mod is an expert, he is based at the Royal Marsden.Your GP may be able to get you an appointment, or perhaps you could go privately. I find it absolutely shocking the way lymphoedema is treated by the medical profession i.e. not very seriously. I've been extremely lucky, I noticed mine almost as soon as it developed (18 months after ANC) and was given a sleeve which I've been wearing dailing. I also looked it up on YouTube and have been doing manual lymphatic drainage with some success. Have you tried it yourself? If not, it won't do you any harm and I'm sure you'd feel better for taking some control. Good luck. PT xx ... View more

Hi all. I had some lipofill on 16 January 2015. I couldn't find much information about it anywhere online, not just this site, either. It's a fairly new procedure for BC patients (NICE approved late 2012 I think). Long story short, BC diagnosed in May 2013, had left MX in June 2013 with immediate tissue expander implant. Had precautionary right MX in July 2014 with immediate silicone implant and left side expander replaced with silicone implant. Didn't look too great. Left side too small as no tissue left at all, and right side too low and too big. PS suggested right side implant be uplifted and reduced, and left side implant needed liposculpting because there isn't any fat between skin and implant so it was sticking. Had fat removed from midriff and put around implant. Will need at least one more op, which PS had said would be the case. I bought a waist cincher and wore it for 8 days, 24/7 as well as mastectomy bras which I had kept. Still wear bras at night as still got tape over scars. I haven't had a problem with midriff at all, it isn't numb and it didn't bruise much.I was driving a week and a half after surgery without any problem. I did slather everything with arnica every night and also started taking arnica tablets about 4 days before surgery. Midriff hurts a bit if I really press on it, so I don't! I thought I might have a lot of flabby skin where the fat had been removed, but haven't so far. The mastopexy on the right side looks pretty amazing. Unfortunately quite a bit of the lipofill fat has been reabsorbed already, so may need more than one more fill. Will see what my brilliant PS says when I see him in a couple of months. He's also removed some of the stained irradiated skin. I had to wait about 6 months between second MX and lipofill, and will probably have to wait until June for the next session. However as next one will just be lipofill I'm guessing it will probably be day surgery. Hope this helps. Anything else I can help with just ask. x ... View more

Hi PB   I started Anastrazole on 1 January 2014 and switched to Tamoxifen at the end of September. I'm 64. I believe I gave it my best shot. The joint pain, which had started in my fingers, spread to my wrists, knees, hips and lower back and was slowly getting worse. My mood swings were terrible, the constant irritability was starting to make me feel very unhappy. I also suffered from vaginal atrophy. I finally contacted my BCN, who talked to my oncologist, who suggested I tried Tamoxifen. I've been on it for about 7 weeks and the joint pain has subsided considerably and mood swings have settled down. I feel happier in myself. Not sure about the atrophy yet. However, I am suffering from fatigue and some hot flushes, although nothing I can't cope with so far. It seems there are some SEs associated with both drugs, and it's a case of deciding which ones you can live with. So far Tamoxifen wins for me. It works in a completely different way to Anastrazole and when I next see the oncologist in March, given that I'll be taking it for 10 years, I shall be asking which drug she believes gives me the best chance of survival. I hope that helps. Good luck. xx ... View more

Good afternoon one and all I haven't been on this site for ages, but having checked our thread thought, for completeness sake, I probably should update you all.So war and peace follows! I had the 2nd mastectomy and double silicone implants on 23 July and as the weeks went by became more and more disappointed. The original (left) side not only looks like a deflated balloon, such that you can see wrinkles in the implant, but the right is much bigger. Consequently, right side fits into bras, left doesn't. It feels like I'm back at school having to stuff socks down my bra, although no point in buying any new ones until this is resolved. Had appointment with PS at beginning of month. Working on the basis that he wouldn't want to leave me looking like I do, decided I would let him tell me what he thought first. He agreed it wasn't very satisfactory and so he's going to some lipofilling on the smaller left side and a bit of an uplift and reduction on the right. There is another problem in that left side's implant has stuck to my skin which is why I am constantly aware of the implant. He's hopeful he can do something about that, and so am I because it's quite uncomfortable. Not going to happen before Christmas, but that's OK. In clothes it's not so obvious I'm quite lopsided. But that means more scars, including two either side of my midriff which is where he'll suck the fat from to fill out the grapefruit! Nice. I've also changed hormone therapy. I'm 64 and so was on Anastrazole. But the SEs were getting more difficult to live with. The joint pain was increasing and spreading from my hands and shoulders to my back, hips, knees and ankles such that walking Daisy was starting to become more of a chore than a joy. The mood swings and constant irritability were dreadful. Finally, in August I rang my BCN for the first time since this all began and asked for help. I've been on Tamoxifen for nearly 6 weeks and already feel so much better. Joint pain is receding and moods are stabilising, so fingers crossed. I expect you all know the difference between the two therapies but I had to look them up. Hopefully I can stay on Tamoxifen. To sum up then, I'm waiting for another round of surgery, albeit on a much smaller scale, but generally am feeling not too bad. I'm not sure energy levels will ever recover so I do have to pace myself, but that's a small price to pay. My stepkids are now launched on an unsuspecting world, daughter working in a spa on a cruise ship in the carribbean until next June(!) and son is nearly four weeks into his first job as a civil engineer. I have a lot to be thankful for. NetteW glad to hear about your ongoing recovery and haircut. Brilliant. We had a week's holiday in Menorca in September. It was fabulous, and very hot. Am planning to go back next year. Orangecat I'm sure it feels very strange not to be going back to the hospital, especially after more than a year. You'll soon get used to it! I found the 5:2 fasting diet amazingly effective and once I got into the swing of it, very easy. In fact OH and I still do it once a week to maintain, and it really works for us. I hope all is well with Julie, Bumble and the rest of the July Junkies. You all made what was a horrible scary time more bearable. Lots of love xxx     ... View more

Good evening my fellow JJs Saw consultant yesterday who told me they'd analysed the breast tissue and it was more of the same. It wasn't pre-cancer or cancer there were more abnormal cells. However, she felt that even though it wasn't anything this time eventually it would be and that I'd made the right decision. No lymph node investigation necessary, hurrah.   I now realise that if you have your armpit surgically interfered with i.e. lymph node clearance, you will have little nor no feeling after a mastectomy as the armpit surgery severs the nerves. This time, having a mastectomy but no armpit surgery I have still have feeling. So I suppose that an unexpected bonus.   Hopefully that's this detour on my life's road now over, although there will be more plastic surgery required. Unfortunately one of the silicone implants looks a bit like a slightly deflated grapefruit. But that's a battle for another day.   Hope everyone else is well, Nette hope you're recovering well from your surgery. Do keep us updated.   Have a good weekend xxxx     ... View more

Evening all Well I'm home and glad to be here. Surgery went ok, although having to hop up on the actual operating table in the operating theatre and let them strap me in was a bit unnerving to say the least. Even more so was the extra time (over 2 hours) spent in recovery because my heart rate was so low (37 bpm). Still, home now and although I realise it's very early days I'm not overly impressed with how the expander replacement looks. The other side is quite swollen so looks marvellous! Plastics registrar said it's early days (I know!) but there's lots they can do if it doesn't settle down well enough in a few months time. More surgery - really? Both drains still in but got appointments at hospital next friday to have them removed and also get the results of the surgery. Hopefully nothing worse, but as I'm discovering with this disease, you never know. Nette, hope your surgery also went well and hope the rest of you are relaxing and enjoying this fabulous summer. Lottsalove xxxxx   ... View more

Good evening ladies Had meeting with consultant on Fri for results of 2nd biopsy. There are some abnormal cells which are not pre-cancer or cancer. Am having surgery this Wednesday, right side mastectomy and double silicone implants. No lymph node investigation unless analysis of breast tissue indicates otherwise, but I'm hoping there's nothing there that hasn't show up on a mammogram and ultrasound. I have no idea whether this is the right decision or not and I doubt the consultant knows either, but she didn't try and talk me out of it. Part of me is silently screaming "Don't do it" but most of me is saying "don't wait" because it could become pre-cancerous or cancerous. So unless the hospital cancels on Tues, it's full steam ahead. I can't even begin to imagine what life will be like with a dead chest, but I'm hoping it will be compensated for by not having to wait for results every year. We've had some spectacular storms here over the last couple of days, which kind of match how I've been feeling! Nette, well done on the Run for life. So what if you walked it, you did it. Feel proud, as I'm sure your family is. Hope your surgery goes well. Nearly at the end of your journey as well, lots to look forward to. Julie so sorry to hear you and Adrian have split up. Even though you say it was a mutual decision, it's still really difficult, especially given everything else you're dealing with. Are you going to have to move? Hope not, that's even more stress. Sakura, I'm so very sorry to hear your lump was exactly what you expected it to be. Do let us know what's happening. Very sensible to get your will made, not giving up at all. Definitely demand a picc line if you have to have more chemo, it really worked for me. Orangecat, nearly at the end of your treatment, how fantastic. Hope everyone else is doing well. Let us know how you are. Lots of love xxxx     ... View more