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lottie63
Member
since
01-05-2012
581
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3
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22-12-2017
08:04
Hi I also have lymphodema in the breast, I use a light crop top style bra in bed gives a little support without restricting, I had my breasts measured in M&S and went for full style bras with thick side panels and no seams as they mark your breast, very Bridget Jones, not at all sexy but the most comfortable and best support L x
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25-09-2017
08:21
Oh my ... this is so sad, Supertrouper was a valued member of this forum, to be taken from her family & friends so quickly is so cruel , I can hardly believe it, what a cruel horrid disease this is, it has really shaken me, Fly high lovely lady , my thoughts are with you and those you loved and left far too early :( L xx
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08-07-2017
06:15
Hi Melanie88 the surgery is available on the NHS at the Royal Marsden that's where I had it done, I believe this is the only hospital that does do it on NHS but I could be wrong L x
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08-07-2017
06:13
Hi Tatave The micro surgery is available on the nhs at the Royal Marsden, thats where I was fortunate enough to have it done, hope this helps L x
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07-06-2017
03:02
Hi Mrs Merton I know its not easy when your giving the dreaded news but remember statistics are just that, each person responds differently to each treatment and treatment is improving all the time :) I was HR & ER neg with PR just 3/8 very low so I was given tamoxifen for 5 years on the grounds that I could come off if I suffered with side effects as they felt the benefits were very low anyway, I decided to stop after 3 years as side effects were getting worse by the week !! that was a hard decision and it worries me still :( but my oncologist was happy for me too stop so that put me at ease a little, all we can do is hope that it never rears its head again and feed off of the positivity of your oncologist and others around you I try to avoid negative people as much as possible now lol Good luck with all you do L xx
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06-06-2017
12:49
Hi Mrs Merton I was DX with grade 3 IDC in February 2012 , I also had 3 lymph nodes affected so had the full treatment, surgery, Anc, chemo, radio and then Tamoxifen, It is a hard diagnosis to accept but I was never told it would most likely return I am under the Royal Marsden and they have always tried to be positive without being unrealistic, I think in my opinion it was rather harsh of your oncologist to advise you it would almost probably return, yes it may do but it may not, anyone at anytime can be diagnosed with all sorts of awful disease ok we may have a higher chance now but hold on to the fact that god forbid should it return there is treatment out there and you did it once you could do it again ... life is a rollercoaster we never know what is lurking around the next bend .... I have Lymphodema in my arm and breast so its a daily reminder I will never forget what has happened and some days are hard but we are still here :) Since DX I have seem my grandson grow and start school, hes now 8, My son marry & my grand daughter arrive :) at DX I was unsure if I would see that christmas, so be as strong as you can be at that time, but cry when you want and keep on keeping on, good luck with everything L x
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22-02-2017
04:49
2 Hugs
5 years ago yesterday on my 49th birthday I was DX with grade 3 IBC which had also gone into my lymph nodes 3/21 were affected, It was especially horrid being DX on my birthday as each year is so hard around this time, bitter/sweet , today I received my latest mammogram results and all looks well, I wanted to touch base with you newbies to just try and give a little positivity to you at this worst of times x It feels like your world has come crashing down on you when you are diagnosed and it is by far the worst thing I have faced BUT you do get through, day by day and week by week and then before you know it its year by year, Im not looking through rose tinted glasses, I know it could come back even worse but when I was diagnosed I honestly didnt think I would be here in 3 years let alone 5 a feeling I am sure you are all aware of I hope this helps a little I no how good it was to hear from ladies further down the line, and we all get on with our lives after treatment and visit the forum less and less thats a good thing, but its also good to keep in touch and remember how different things were not so long ago and how lost and alone we felt I wish you all well and the very best L xx
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19-09-2016
10:00
Hi Kary, I do not wish to be the bearer of bad news but ... IF it is lymphodema in your breast( which I also have ) it will not go completely, it can be managed and there are things that can help relieve the swelling etc but once you have lymphodema it is for life im afraid and you should not be told otherwise by the doctors or oncologists as it gives false hope. so you really need to get it checked out, I also had a very swollen breast during radiotherapy it was also quite pink and angry looking ( it still is ) and this was partly put down to the effect of rads but on inspection by the lymphodema clinic it was confirmed to be breast lymphodema, a general rule is if your breast is swollen, pink, and your bra leaves marks/indentations in the breast it is probably down to lymphodema, but you really need to get it seen to be sure All the best & good luck L x
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16-09-2016
09:40
Hi, I have been on clonidine for 2 years now to help with the flushes which became unbearable, I have found that it does help but only if taken regulary and at the same time roughly each day , my flushes have decreased by about 70% and I probably only have a few bad ones a day now unless its extremely hot or humid, certainly worth trying Good luck L x
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30-03-2016
06:50
Hi Tatave, I had the surgery 2 years ago and would definately recommend it if you can I have lymphodema in arm and breast and my arm is much better than pre op and breast has reduced slightly too, pm me if you want any further info or advice or look on the going through treatment section/lymphodema L x
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22-03-2016
12:48
Hi , I would get that checked out, when I wore my glove with sleeve my hand was always much slimmer once I removed the glove, worth getting checked just to be sure why x
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06-01-2016
04:25
Hi Ladies An update with news ..... Yesterday I had my penultimate check on my lymph arm surgery with the consultant, all good and he is very pleased with outcome :) now he has advised me in general conversation that the LVA surgery has really been classed as a trial so far BUT due to the great results on the majority of women they are putting the results forward for more NHS funding, if this should happen it would mean far more ladies would be able to have the surgery nationwide under the NHS, lets hope this is the case and the team pushing for this are successful , this conversation came about as I expressed how unfair it was that it was available to so few when it is needed by so many, he totally agreed so fingers crossed 1 and all, Love to all x
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22-12-2015
01:04
Hi PJ Oh yes I am afraid so, I was on Tamoxifen for 3 years and it basically puts you through the menapause chemically so the side effects can be bad, mood swings, hot flushes, aches/pains, headaches etc etc these are just a few, your partner would not mean to be moody it cant be helped Im afraid and she has obvioulsy been through a great deal and still is with the tamoxifen , it really can be horrible even though it is a wonder drug L x
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25-11-2015
08:57
Hi Ladies I have just returned from a wonderful week in the Gambia, temp reached 104 degrees on one day !! 1 mozzie bite on leg and that was it, relieved is an understatement :) my lymph arm behaved beautifully I was very good and wore my sleeve even when clad in my tankini lol, got a few strange looks but used to that !! So thank you for the tips... love the avon moisturiser especially and still useing it Love to all L x
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21-10-2015
04:51
Tamoxifen is without doubt a wonderful drug, nobody would disagree with that I am sure but I believe that the only person who knows how much they are being affected by the drug they are taking is the person themselves, It is completely a personal choice as to wether they feel they can continue to take it, I did not stop it lightly believe me and for weeks I struggled with my decision even though the oncologist was 100% behind me , but as I said I was very low e/r score & pr/her negative so in my case the beneficial percentage was incredibly low, I am happy I managed 3 years on it with barely a missed pill, I would get up at 1am and take it if I had forgotten but as I said the effects of the drug were getting worse so much so I decided to stop, But I still question my decision the fear never leaves me L x
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21-10-2015
11:56
Its a difficult one Nanny-Sal because I was told a 6 week break from Tamoxifen would not cause any concern but to be honest it takes a good while to leave the system I didnt really start to feel any benefit for at least 6-8 weeks after stopping, The aches and pains were still with me and the flushes but I suffered with nausea which did relent after a couple of weeks, I am now starting to feel better in myself about 10 weeks from stopping only to have picked up a virus !! Even with my oncologists blessing in stopping it still weighs heavy, have I done the right thing, but I was really struggling and the effects seemed to be worsening rather than settling down after 3 years, this they put down to going through the natural menapause and the tamoxifen was adding to the side effects of the menapause... will the worry ever go :( Good luck with your oncologist appointment L x
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20-10-2015
02:03
Hi Nanny-Sal I was on tamoxifen for 3 years and came off 2 months ago, I suffered with the usual s/e but also had painful back/hips and really achey legs I mean REALLY achey :( since coming off the tam my flushes are pretty much the same as I am peri menapausal but I have to say the aches have decreased significantly so hopefully this will continue, I have also been x-rayed several times over the last 3 years due to aches and pains and I have been informed I have arthritis in my collar bone, shoulder hips, knee and fingers now at 52 this seems rather a lot !! The tamoxifen ?? may well be but I can only say that some mornings I feel about 90 and have to come down the stairs sidewards !! I woild not try to convince anyone to stop tamoxifen it is a wonder drug, but for me with a low ER of 3/8 and PR/HER neg it was decided that the side effects considerably outweighed the benefit I would be getting by continuing I think it was something like 1% I wish you all the best and hope all goes well L x
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24-09-2015
03:36
Hello KellyMc I have breast & arm lymphodema also, there are a few of us who participate on the Lymphodema thread in undergoing treatment section, not many ladies seem to get lymphodema in the breast but there are a few , Mine is settled at the moment, saying that it is still swollen and pink but always is unfortunately ...but my last flare up was a few months ago when it was red and tender, join us on the thread if you need any advice or just for a chat L x
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23-09-2015
11:06
Hi wfaf Where are you located/treated I had mine at the Marsden Sutton under the nhs but I have heard it is approx £ 10,000 which is a ludicrus amount ! It should be available to all who meet the criteria of beneficial results L xx
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15-09-2015
12:48
Hi San1952 I was advised to wait until hair was about an inch long, I did and it was fine L x
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