03-10-2015 09:55 PM
I am really worried about this, too! I have had a WLE and sentinel node removed (just one!) and that has a 3mm metastasis. They need to do more surgery as they did not get clear margins and to do node clearance!
I will be seeing my surgeon on Tuesday but I am not keen on risking the possible lifelong side effects. I have looked at your links and others, I can’t make sense of it all but there does not seem to be that much more risk by not having it done. I get the distinct feeling it is recommended by NICE because it is cheaper that having additional surgeries to check on a few more nodes!
I am asking a couple I know who are both scientists, to have a look into this for me…to check the research is reputable and decipher the meaning into a simple form. I’ll post back here if they come up with anything! I have found more links, Googling ‘is lymph node clearance really necessary’ and also try ‘Sentinel Node Metastasis’
02-08-2010 09:45 AM
Very interested to read these threads. Topsymo - I've never heard of going to a clinic for being high risk. I've had a full axillary clearance and never been given anything but the most basic advice.
Are there any particular exercises or other bits of information that they recommend that you could share?
The only thing I've found caused a little problem has been when I've done too much gardening. I had a little area of swelling and tenderness but to be honest I think it was more like the vein where I'd had chemo last year than a generalised swelling. The surgeon and BC nurse didn't seem interested.
Shortly after my operation I did have numbness and I remember terrible sensitivity. If someone accidentally touched my arm it was horrible. I'm now just over a year on from the surgery. Most of the numbness has remained which I expected as the nerves were cut but that horrible sensitivity has gone.
Doing the exercises is so important and I still do them twice a day now.
I did have a problem with a seroma but I'd say not to worry about that in advance and cross that bridge if you come to it (hopefully not). The seroma problem is fully resolved last year.
take care all
02-08-2010 07:31 AM
Hi Elaine- do hope you are feeling a bit brighter now. I wonder if you are having chemotherapy to follow your WLE -or maybe you're not sure what is to follow and that is adding to your concerns?
I had Level 3 clearance 18 months ago ( plus a wound infection) but the physical discomfort soon passed.(I think it helped that I had a very dishy surgeon!) I remember the weird feeling of numbness which made my underarm feel really bulky and as if I had some huge swelling there- when there was actually very little to see.
I thought it would never feel 'normal' again but although some numbness has persisted this has really decreased as time has gone by and my 'bad' arm now seems much like the other one - apart from the 'hollow' in my axilla and the scar (ugly but not very visible)
I actually attend a lympdoedema clinic as I am considered at 'high risk' - but I do NOT have lymphoedema and agree with Roadrunner and the others re guarding against it. I do understand your anxiety- but it is important not to get too worried about it and allow it to inhibit your lifestlye. It is only an unlucky minority who develop lymphodoema - and YOU are not going to be one of them!
PS Make the most of your husband spoiling you! BC is hard for him too -and if your emotions are anything like mine were in the early days, he is going to have to get used to a few mood swings- it's par for the course!
02-08-2010 05:06 AM
I am five days post ANC and lumpectomy. It is very scary place to be, but from my own experience, I can only agree with their advice. Dont expect too much of yourself and rest and take the painkillers - I was in next to no pain 36 hours ago, and now I am in agony and having trouble sleeping. My drain is due to be removed on Monday so I will have to see how I am after all that - I have an anxious wait until the following week to find out whether I will need to have further surgery
My mum had a lumpectomy and partian ANC 13 yrs ago and she suffers with lymphoedema and it is an awful thing to see someone have - she is allergic to nmost antibiotics so she has to ride it out - she has had a bad bout of it this weekend and has spent most of it in bed shivering and feeling sick - I am just hoping and praying I dont have to go through that. Thinking of you xxxx
31-07-2010 04:30 PM
The numbness does continue and I'm pretty sure it's forever as nerves have been cut to get to nodes, but I find now 7 months after clearance, it's barely noticeable. In fact, it faded into the background before now.
30-07-2010 06:04 PM
I not suprised you're feeling down. You are ill and having to go thru some very difficult treatment. As regards the arm numbness, it does tend to improve a bit, tho I think some permanent numbness is inevitable. It's great you are doing the exercises tho; they will get easier as early days.
30-07-2010 05:53 PM
Well had the ANC and all went to plan. Drain came out on Wednesday so I am able to move about a bit easier now. My arm is very sore and stiff and because they had to cut the nerve the upper part of my arm is numb and very sensitive to touch. That is probably the worst part. I am doing my exercises and I think they are getting easier. My main problem is that I'm feeling very down. I think it has just hit me that I have bc and from now on it is going to be a rough ride for a while. I feel so useless because I can't do anything. Hubby is being great but I do get cross with him when he treats me like an invalid!
Sorry for the moan girls. I think I'm just feeling sorry for myself. Perhaps a glass of wine (or 2) might help.
hugs and best wishes from Elaine
20-07-2010 05:08 PM
As Jane72 mentioned, its really important to do the exercises. They can be difficult at first but get easier. You need to get full mobility back in that arm.
20-07-2010 04:44 PM
I am six years on from full clearance. I had some initial fluid build up, and very occasionally have a slight amount now (can notice one bra strap or sleeve feeling tighter, although you can't really see anything). I mentioned this to my surgeon at my recent check-up, and he said 'keep exercising'. I explained I do yoga and he said 'great'.
I mention this because sometimes the advice is 'don't ever put any stress or strain on the arm' but actually yoga does just that! Exercise is really important to keep the lymphatic fluid moving. Obviously try not to wrench the arm, and avoid burns infections etc, but don't be scared to exercise it, I think not moving is just as bad as overdoing it.
20-07-2010 04:32 PM
I had lymph clearance 3 weeks ago. I'm stiff and still tender. The exercises really help - if I do them 5 times a day, I feel so much better. If I get to the end of the day and think whoops, I haven't done my exercises then do triple to make up for it, it reeeeally hurts!
I haven't taken any painkillers at all. I woke up with a local and a dose of morphine inside me, and that was it. I've found the pain is perfectly manageable, even the seroma which has certainly been unpleasant.
Unfortunately I don't think there's anything you can do to avoid a seroma - it either happens or it doesn't.
20-07-2010 01:56 PM
Thanks for all your advice. Tracey, your practical advice for the first few weeks is great. I will have a drain - it's normal precedure at the hospital I am attending so will look into the bag idea. Also I never gave the idea of having the phone handy a thought (lol) Not being able to drive is going to kill me as well, but if it's what it takes to make a full recovery then so be it.
Roadrunner thank you for your advice on lymphodoema. I had read that you had to be careful but didn't realise just what that meant. I tend to be clumsy so I will have to be careful from now on. Antiseptic is now very much on my shopping list!
Best wishes to both of you
20-07-2010 01:30 PM
After a full clearance, you will be at lifelong risk of developing lymphoedema. You need to take care of the arm on that side, to avoid straining it, or compromising the skin in any way so that it could let in infection
blood pressure tests
heavy lifting (or anything that strains the arm)
wear rubber gloves in the kitchen
wear gardening gloves to avoid scratches
moisturise regularly to keep skin supple (then it's less likely to break under stress & let in infection)
treat all scratches etc promptly with antiseptic
go to the doctor straight away for antibiotics if you get an infection (better still, get some antibiotics in advance so you don't have to wait for an appointment if you get an infection)
take exercise - swimming is particularly good
I know all this sounds like a lot, but in time it becomes second nature. And as your arm gets stronger following surgery you will be able to do mor & more (the key thing is to avoid straining it, so anything you do that might strain it, build it up slowly)
Note that many health professionals do not know much about lymphoedema, and will try to test blood pressure/take a blood sample etc from your affected arm. DO NOT LET THEM! It is not worth the risk.
20-07-2010 12:20 PM
I am 4 weeks post op from my node clearance, I had a 4 day stay in hosp (actually enjoyed the rest), my advice is
1. Take the pain killers - even when you feel you don't need them, I thought I was ok on day 3, but when they wore off it took a long time for them to catch up again (got to add I am a bit of a baby and don't do pain very well!)
2. REST!!!! its the way your body heals itself, sleep when you need to. I kept a throw on the sofa so I could snuggle down when I needed to.
3. If you have a drain(not all hospitals use them), try and pop it in a bag and fasten the bag onto a belt, saves carrying it around (or forgetting to pick it up when on the move)
4. Keep the phone handy, its a pain having to get up and answer it when everyone phones - and they will when you least expect it! lol
I don't know about lymphodeoma but I did get a seroma, they don't like to drain them if they don't have to (risk of infection), but if it gets painful ring your bc nurse an talk to her (or the ward where you have the op) mine were really helpful, they said its quite normal for it to happen as your body needs to get used to draining the fluid away without your nodes. It doesn't hurt when they drain it and if it has been painful its instant releif (as the skin isn't stretched anymore)
I'm sure other people will be along soon with other tips for you.
I hope all goes well for you and you are soon on your way to recovery, the bit I hated the most was not being able to drive and get out of the bl**dy house.
20-07-2010 10:33 AM
I am having full clearance tomorrow and expect to be sent home to recover on Friday. I have read lots of threads talking about lymphodeoma and seronoma and wondered if any one had any good advice about how to look after yourself during post op period.