Probably Lynphodoema - Gutted

[Ms Merton]

Hello Steele - sorry to hear you are continuing to have these problems.  I would advise you to make a bit of a fuss about it as it is clearly adversely affecting you six months on from your operation.  Can you get hold of your Breast Care Nurse?  Or even your GP?  I also wonder whether there is any support group near you where you could meet people who have gone through a similar experience - I think the helpline attached to this website can give you that sort of information.  I have found meeting other ladies at a Moving On course invaluable.  Wishing you all the best. Xx

[steele]

I had a Mastectomy and lymph nodes removed on 21st June 2017.  The lymph nodes were clear.  But I have this lump the size of a large egg on the wound nearest to the centre of my chest . It's black and blue and very hard like a stone under my skin.  My Consultant told me it's a Lynphodema /Seroma  and she does not want to Aspirate in case of more infection as I have had 2 infections already.  I also have the bag of fluid hanging from under my armpit, and have also been told this is normal but can take a long time to disappear.

Can anyone give me advice if you have the same thing ?  I live on my own and I am 80years young at heart.

[Ms Merton]

Hi - great to hear you are doing well.  I have had some very mild swelling (hardly noticeable) in my hand and lower arm which has gone back down now with MLD massage and compression.  Didn’t know you could get black - agree the flesh coloured ones are a strange colour.  I am optimistic that what i have had is v mild and can be kept under control but i am a bit nervous now about flying so good to hear you didn’t have any problems.  Great to hear you are really seizing the day and enjoying lots of lovely travel. X

[Powdow]

Hi ms Merton
I'm doing good, my arm hasn't got any worse and lymph nurse said it's very mild. It didn't swell at all on the flight to Orlando or coming back. I did wear my sleeve on the flight, I also had a glove incase my hand had any swelling although there is no lymphodema in my hand, but it was fine and didn't need to wear it. I wore the sleeve on the first day, but it was so hot and my arm seemed fine so left it off after that and I didn't have any problems. I would put it on sometimes later if we were in early which was hardly ever!
I forget to put the sleeve on half the time, but arm seems fine without it. I'm not as upset about it anymore as it hasn't got any worse, and no one else would notice unless I point it out.
My sleeve is black which is a lot better I think, getting a skin coloured one (which isn't very skin coloured!!
I'm off again on a long haul flight at New Year, so hoping its all good again.

[Ms Merton]

Hi Powdow - how is your arm now?  Has the sleeve helped? Have you been able to fly to the US again without problems?  Assume you wore the sleeve on the flight.  I hope you’ve got it under control now.  

[whitelily]

Hi Powdow good that u have managed to sort out some sleeves before your holiday I guess just see how you go. Hi Barbara great that you don't have to wear sleeve all the time mine is only slight also but I do notice it swelling more If I don't wear sleeve I suppose we will all respond differently. Awful that you are still suffering with your chest infections maybe they need to try a different antibiotic if they haven't already. Powdow hope you have a great holiday and try not to fret about your arm too much x

[Powdow]

Hi Barbara,
That's good to know that you don't have to wear your sleeve all of the time.
I got seen at the lymphodema clinic early September and the nurse was really good. Took all the measurements and ordered me a couple of sleeves. She just said let's see how you get on with the sleeve, no one is going to give you into trouble for not wearing it. Definately to wear it on flight, and I got the impression the more I wear it the more helpful it will be but it's not the only thing.
Feel a lot more content with it now.
I haven't had any complications with my lung and fingers crossed it is perfectly healed and I won't now. It was frightening at the time though. That's a long time for your lung infection, what a shame, and it sounds like you are an active person so not what you want!
I got the Brazilian blow dry done on my hair last week, to help maintain it a bit better in the heat and cut down on the amount of straightening I have to do as I did feel my arm ache in Jamaica with it. Florida in less than two weeks!!

[BarbaraF]

Hi Powdow,  I also developed lymphoedema after surgery and radiation. I have swelling in left arm, but it's mild. I've had it for 6 years now. I only have to wear sleeve on flights and lifting weights. It has gotten better over the years. So don't lose faith. 

I had Diep flap reconstruction in May. My lung was also punctured. Did you have any complications resulting from that. I developed lung infection in hospital and it's now end of September and till have lung infection. It keeps coming back. 

[GrumpyTrout]

It can take a while to get the sleeves made since they are made to measure. I find the sleeve helpful as a form of 'armour' that prevents bites and scratches as well as making people give you a bit of space. Always carry antiseptic cream and apply it to the slightest scratch- it takes 4 times as long for anything on the lymphoedema arm to heal compared to anywhere else. Keep moisturising. Lymphoedema is rubbish but you get to choose some fancy coloured sleeves to wave in people's faces when you need a seat.

[whitelily]

That's great news and I agree it probably is from the heat.  I guess only time will tell but at least if you get seen and it does get worse you can get on top of it sooner rather than later.  Best to get seen before your hols so if they do recommend a sleeve for the flight it can prevent it developing further. Even if it is very early lymphoedema it should respond to massage. Glad it's put your mind at rest and hopefully you can go on and have a lovely time in Florida xx

[Powdow]

Whitelily - I saw breast team today and it was good enough news. The have made a referral to the lymphodema centre and requested that I be seen before my holiday, but they said it's not bad and may just be from the heat in Jamaica and will go down with some massage, or perhaps or may have to wear a sleeve intermittently. If I can't get an appointment beforehand im going to phone the centre and ask if they know anyone I could go to privately in the meantime.
Yes it is Orlando we are going to. Doing both Disney and Universal. We went in 2015 which was our sons 1st time (we've been twice before that), this time going with friends and their kids, really looking forward to it.
I will keep this post updated, especially if it continues to be good news, as it would be good for others browsing these posts.

[whitelily]

Powdow never blame yourself you have done all you can to help prevent lymphoedema. We never asked for breast cancer and unfortunately we are all at risk of developing lymphoedema from the treatments we have had to have. If it does turn out to be lymphoedema it's not your fault same as it's not mine that I have it. Hopefully your appointment will come through soon. I guess you going to Disney world In Florida I went around 13 years ago when my two were little amazing place we still talk about it I hope to go back maybe when grandchildren start arriving I will have an excuse to go x

[Powdow]

Cellulitis is what I was concerned about. When away I did use Jungle Formula, still managed to get a small bite on the wrist of that arm, I used factor 50, and stayed under a parasol when round the pool. I have always been very careful with the arm, not lifting heavy things etc. Although on holiday I was straightening the life out of my hair so the repetitive movement wouldn't have helped. I'm going to get a keratin treatment before Florida!

[whitelily]

Hi you have been through such a lot you sound just like me nothing is ever straightforward with me but as you say it is all life experience and for what ever reason these things are sent to try us. I have two older sisters who sail through life with no problems or health issues and everything seems to happen to me, they always say "you are so strong" which really annoys me as that implies that I find it easy which I don't necessarily but you do have to just deal with and get on with what life throws at you and try and come out the other side. I completely understand how you feel as with lymphoedema it is a life long condition and it will take time to adapt and accept if you do get diagnosed with it. I still have days when it all gets to me. I would really push to get seen before your next holiday if it is only 7 weeks away as you want a definite diagnosis and if it does turn out to be lymphoedema then you really need to be wearing a suitable sleeve on your flight to prevent it getting worse. Also if it does turn out to be lymphoedema you will need to be covered on your holiday insurance as the main risk with it is cellulitis which is an infection that would require antibiotics and occasionally intravenous antibiotics. Sometimes this can happen from an insect bite. Always take insect repellent with you and spray on affected arm (even if it's not lymphoedema) and I always take a course of antibiotics with me in my luggage from the GP in case I do get bitten when away so I can start taking them immediately and minimise any problems. I have never had cellulitis or been bitten but it is a risk and as there tend to be more insects when we are abroad in the sun it is just something to be aware of x

[Powdow]

Thanks again Whitelily. I am normally a very positive person, I coped with the cancer diagnosis pretty well I think, I also couldn't have children, went through IVF a few times it failed, but to me it was all life experience. Even adopting our little boy was complicated, the most complicated case our social worker had ever seen, and social workers still comment now how they were amazed how calm we both were through it. I know that this is because there is no end in sight, I can't come out the other end and I guess that's what is getting me down. I know once I speak to someone I will feel better about it.
I love my holidays and like you I don't regret going, in hindsight I think it started before the holiday. That was the 3rd holiday this year and the first involved 3 flights, one was a ski holiday, although this was the 1st long haul since op. I'm going to Florida in 7 weeks, so id like to know before then what's going on.
Another thing - I have annual travel ins, they wouldn't cover me for anything related to the breast cancer at the moment, I thought that's fine as nothing going to happen that quickly but I didn't think of lymphodema causing a problem quickly - could it? I may need to get cover for anything linked to bc for Florida.

[whitelily]

Hi Ms Merton not advisable really to wear a sleeve if you don't already have lymphoedema as this can then in fact cause it as you are compressing the arm a bit like with a blood pressure cuff which is also not advised. Very difficult I know as the advice is always conflicting I do think mine was caused after a flight but i was at risk of it anyway even sitting in the sun with the heat could have caused it to develop. I won't let it stop me doing what I want and I don't regret the holidays that I went on one year after diagnosis. Some ladies say they will never fly again for fear of it developing but what is the point in getting through treatment and surviving if you then are afraid to live your life. I do now wear a sleeve when flying as I have lymphoedema but I wouldn't say it was wise to wear one as a preventative measure. I have just come back from Rome and am going to California in October and planning many more holidays for next year. Whether flying contributes to it or not might be something that we never know and there are many ladies who have had treatment and fly but never develop lymphoedema. Always be aware of risk factors but I think essentially that if you are going to get it you will no matter what you do x

[whitelily]

Hi Powdow you are still very soon out of treatment and it may still settle. I know of a few women this has happened to and their swelling then settled and it wasn't lymphoedema. I was also hoping I would be one of these but I wasn't. With the tamoxifen they say you keep hold of extra fluid which can account for some of the weight gain. I did used to get occasional swelling in my ankles though not in the other arm. I am no longer on tamoxifen and have lost half a stone very quickly without even trying so not sure if that was extra fluid i was carrying. Unfortunately it is also a fact that most lymphoedemas will present themselves in the first two years.  You do come to accept it in the end as it is what it is and you can't change it. Mine is very minor swelling but I keep it under control and I got help early which is what you are doing. Yes it's a pain and I get days when I hate it and feel down about it and wish I didn't have it but I don't let it stop me doing anything. If it is lymphoedema you will learn to live with it. I know we would choose not to if we had the choice but I always try and look at the positives when I am having a bad day and know there are ladies going through far worse than me and I am relatively well. Like what we have already been through the waiting is the worst hopefully once you get your appointments and get assesssed you can work out a way forward but as I say there is still a chance it is not lymphoedema. Sending a hug xx

[Ms Merton]

Hi - sorry to hear you are going through this. I had mx and full node clearance in April and am also petrified of getting lymphoedema. Unfortunately i can't offer you any advice but i would be really interested to hear what the specialist advises after you have seem him/her if you are willing to share this info. Do you think it was caused by the flight to Jamaica - did you wear a sleeve on the flight?  I have had conflicting advice on this. Hopefully even if it is lymphoedema, it has been caught quickly and can be easily managed. I have been told by my surgeon that exercise and weight loss help prevent and keep under control so keep going with that. Thanks for sharing your experience. Best wishes xx

[Powdow]

Whitelily, thanks so much for your response. Yes I was just on holiday and you did reply to my post then. It did go down a bit but I was away camping at weekend and noticed it going up again. I wish now I had heeded your response and went to see someone as soon as back, that's the trouble when you feel your bn isn't that approachable. In the end when it swelled again I went to GP.
Treatment - SNB in July 16, then full clearance Mx and Diep recon in September. Radiotherapy to breast area, not axilla, ended end Nov 16. Thankfully no chemo. On Tamoxifen
I'm clinging onto your word re tamoxifen can cause swelling, but is this not overall/anywhere swelling? Also clinging onto the hope that it is just intermittent swelling as system compromised.
If not I really need to get my head around it as I am really struggling with the thought, crazy as it may sound, but feels much more than when I got told I had cancer. I think it was because I knew there could be an end and I just had to get on with it, but this? There is no end. I guess I'll deal with it if it is lymphodema.
My surgeon, before my clearance, said that even if you do get it it tends to be milder than what I was thinking.
I'll let you know as soon as I find out more. Thx again x

[whitelily]

Hi Powdow just wanted to acknowledge your post and say that I am sorry you find yourself in this position. I know what you are feeling as I have been there. I was diagnosed 4 years ago. I was continually told by the lymphoedema specialist that it wasn't lymphoedema but when I went back to the surgeon was told it was. They couldn't agree. The lymphoedema nurse thought it was a problem with my vein for which I had numerous tests and scans which all came back as normal.  The  swelling was also thought to be due to the excessive scarring I had from the surgery and radiotherapy causing circulation problems. Either way the swelling remains and I do have to wear the sleeve every day. I guess as you haven't been formerly assessed by the lymphoedema service it is difficult to say if it definitely is. I was told that medications such as tamoxifen can cause swelling and I think just generally if we are more busier than usual it can cause temporary swelling as our affected arm is now vulnerable due to the lymph nodes having been removed and

the circulation is compromised. Also not sure when you went through treatment but I was advised that the first 2 years after lymp node removal your body is still adapting and intermittent swelling can occur. If you are diagnosed with lymphoedema and it is caught early and treatment started it will make a big difference long term. You also mention losing weight and this will help. If I remember you have not long come back from a holiday as I think I responded to one of your earlier posts? Hopefully you will get assessed soon please let me know how you get on x

[Powdow]

Hi, well after noticing some swelling on my arm and I know it feels heavier, I went to GP and she had a quick look and more or less said it looked like it. So I've now got an appointment with my breast surgeon next week and I'm hoping I dont have too long a wait for referral to a specialist.
I'm totally scunnered, I feel this is worse than the cancer diagnosis as with that there was a probable end in sight, but now I look at my arm with what I think and hope is slight swelling, knowing that it can only get worse, and the rest of my life will be spent wearing a sleeve and constantly worrying about it.
I had just gone back to slimming world, I had lost a stone prior to cancer diagnosis but put most of it back on as my head wasn't in the right place, now I've just gone back thinking right get some weight off, get the tweaks to my tummy and boobs done by the plastic surgeon (had mx with Diep reconstruction last Sept) and hopefully have a decent figure. Now I wonder what's the point, I'm going to feel self conscious about myself anyway. If it wasn't for the health benefits re losing weight I don't think id bother now.
I'm desperate to see the surgeon/specialist in the hope that they say it's not as bad as I think. Gutted that im one of the few that get it, my lung got punctured during the DIEP op, nurse in ward said they see that only about 3 times a year, why have I been so unlucky with the punctured lung and now this.
Already I'm getting very down about this and can't be bothered doing anything apart from sitting with my arm raised!
I take it no one has ever had swelling that hasn't really gone down but it wasn't lymphoedema?
Sorry this is a very indulgent post 😞