Emma D

Hi Lizzy,

Just wanted to share my experiences of lymphedema with you.

I was diagnosed Stage 1B initially, this time last year.  Then had a WLE and a SNB just 2 days before Xmas.  Sentinel node was positive so I became stage 3a and I was faced with the choice you are faced with now, although it was presented as less of a choice to me than it might have been.   I was bewildered and trusted my surgeon, who was very good.  I do remember him saying I didnt have to have the surgery – the lymphadenectomy – but most of the talk was about having the surgery and as soon as possible.  I saw the surgeon with my SNB path results on Jan 12th and ended up having the op on Jan 17th.  Original mole was on the left thigh just above the knee so the block dissection was of the left groin.  Sheer bloodyminded detemination got me through the post op period where I managed to avoid any infection (v important) and healed v quickly.  All the remaining nodes were clear, as it turned out.

Lymphedema set in about 6 or 8 weeks post op, or thereabouts. Again, there hadnt been too much discussion about this pre-op when I was in panic mode.  My surgeon was less good at this phase of my treatment, basically just telling me that my lymph needed to find a new route through my thigh and it eventually would but any improvement I didnt get within 18 months of the op, I probably wouldnt get.  Anyway, I found a physio who specialised in Manual Lymphatic Drainage and I ordered some stockings – Mediven in Germany do a good line – and tried to find the right advice.  I wore the stockings for a couple of months. I tried Class 2 strength but I was in agony trying to get them on so settled for Class 1 on the basis that some compression was better than none.

I saw the MLD therapist for a few weeks around April to June and then she signed me off.  By then my leg had settled into a pattern of being fairly normal in the mornings but swelling up throughout the day and then going down overnight during sleep. Its really only the ankle and instep of the foot that it shows on.  I bought some looser shoes – no straps.  I also followed all the advice of my physio and from a book.  The most useful things were dont sit too long/dont stand to long (basically keep on the move!), dont have the shower too hot, keep leg straight if possible when sitting, keep elevated sometimes when sitting (I have a recliner chair which is brill for that!), dont wear high heels, wear loose clothing – nothing too restrictive that will stop the flow of lymph fluid.  Then, over the last two or three months, the leg slowly started improving.  My ankle still swells during the day but only half as bad as it did.  I wear high heels occasionally and it does swell but not too bad.  I still keep the shower cool but I no longer worry about keeping my leg straight while sitting.  I think it has found a route through and I wonder how much more improvement I will get as its only 10 months since the op at the moment.

To summarise, although I have had moderate lymphedema, it is quite manageable, for me it was just about educating myself about how to deal with it.  I am due to fly long haul shortly so I will have to see how it behaves then, aparently that's another tricky time for it.  Also I will be visiting a hot climate so I will have to watch out for mosquitos.  Its particularly important to avoid infection when you have no lymph nodes as there is nothing to stop it spreading.  Nothing that a mozzie repellent wont sort out!  I hope all this info gives you an insight into what it is like living with lymphedema.

Good luck.  You'll feel much stronger in a few months, the fog does lift and we adjust to our new 'normal'.

Emma (Dublin, Ireland)

Hi Lizzy,

Just wanted to share my experiences of lymphedema with you.

I was diagnosed Stage 1B initially, this time last year.  Then had a WLE and a SNB just 2 days before Xmas.  Sentinel node was positive so I became stage 3a and I was faced with the choice you are faced with now, although it was presented as less of a choice to me than it might have been.   I was bewildered and trusted my surgeon, who was very good.  I do remember him saying I didnt have to have the surgery – the lymphadenectomy – but most of the talk was about having the surgery and as soon as possible.  I saw the surgeon with my SNB path results on Jan 12th and ended up having the op on Jan 17th.  Original mole was on the left thigh just above the knee so the block dissection was of the left groin.  Sheer bloodyminded detemination got me through the post op period where I managed to avoid any infection (v important) and healed v quickly.  All the remaining nodes were clear, as it turned out.

Lymphedema set in about 6 or 8 weeks post op, or thereabouts. Again, there hadnt been too much discussion about this pre-op when I was in panic mode.  My surgeon was less good at this phase of my treatment, basically just telling me that my lymph needed to find a new route through my thigh and it eventually would but any improvement I didnt get within 18 months of the op, I probably wouldnt get.  Anyway, I found a physio who specialised in Manual Lymphatic Drainage and I ordered some stockings – Mediven in Germany do a good line – and tried to find the right advice.  I wore the stockings for a couple of months. I tried Class 2 strength but I was in agony trying to get them on so settled for Class 1 on the basis that some compression was better than none.

I saw the MLD therapist for a few weeks around April to June and then she signed me off.  By then my leg had settled into a pattern of being fairly normal in the mornings but swelling up throughout the day and then going down overnight during sleep. Its really only the ankle and instep of the foot that it shows on.  I bought some looser shoes – no straps.  I also followed all the advice of my physio and from a book.  The most useful things were dont sit too long/dont stand to long (basically keep on the move!), dont have the shower too hot, keep leg straight if possible when sitting, keep elevated sometimes when sitting (I have a recliner chair which is brill for that!), dont wear high heels, wear loose clothing – nothing too restrictive that will stop the flow of lymph fluid.  Then, over the last two or three months, the leg slowly started improving.  My ankle still swells during the day but only half as bad as it did.  I wear high heels occasionally and it does swell but not too bad.  I still keep the shower cool but I no longer worry about keeping my leg straight while sitting.  I think it has found a route through and I wonder how much more improvement I will get as its only 10 months since the op at the moment.

To summarise, although I have had moderate lymphedema, it is quite manageable, for me it was just about educating myself about how to deal with it.  I am due to fly long haul shortly so I will have to see how it behaves then, aparently that's another tricky time for it.  Also I will be visiting a hot climate so I will have to watch out for mosquitos.  Its particularly important to avoid infection when you have no lymph nodes as there is nothing to stop it spreading.  Nothing that a mozzie repellent wont sort out!  I hope all this info gives you an insight into what it is like living with lymphedema.

Good luck.  You'll feel much stronger in a few months, the fog does lift and we adjust to our new 'normal'.

Emma (Dublin, Ireland)

Hi Lizzy,

Just wanted to share my experiences of lymphedema with you.

I was diagnosed Stage 1B initially, this time last year.  Then had a WLE and a SNB just 2 days before Xmas.  Sentinel node was positive so I became stage 3a and I was faced with the choice you are faced with now, although it was presented as less of a choice to me than it might have been.   I was bewildered and trusted my surgeon, who was very good.  I do remember him saying I didnt have to have the surgery – the lymphadenectomy – but most of the talk was about having the surgery and as soon as possible.  I saw the surgeon with my SNB path results on Jan 12th and ended up having the op on Jan 17th.  Original mole was on the left thigh just above the knee so the block dissection was of the left groin.  Sheer bloodyminded detemination got me through the post op period where I managed to avoid any infection (v important) and healed v quickly.  All the remaining nodes were clear, as it turned out.

Lymphedema set in about 6 or 8 weeks post op, or thereabouts. Again, there hadnt been too much discussion about this pre-op when I was in panic mode.  My surgeon was less good at this phase of my treatment, basically just telling me that my lymph needed to find a new route through my thigh and it eventually would but any improvement I didnt get within 18 months of the op, I probably wouldnt get.  Anyway, I found a physio who specialised in Manual Lymphatic Drainage and I ordered some stockings – Mediven in Germany do a good line – and tried to find the right advice.  I wore the stockings for a couple of months. I tried Class 2 strength but I was in agony trying to get them on so settled for Class 1 on the basis that some compression was better than none.

I saw the MLD therapist for a few weeks around April to June and then she signed me off.  By then my leg had settled into a pattern of being fairly normal in the mornings but swelling up throughout the day and then going down overnight during sleep. Its really only the ankle and instep of the foot that it shows on.  I bought some looser shoes – no straps.  I also followed all the advice of my physio and from a book.  The most useful things were dont sit too long/dont stand to long (basically keep on the move!), dont have the shower too hot, keep leg straight if possible when sitting, keep elevated sometimes when sitting (I have a recliner chair which is brill for that!), dont wear high heels, wear loose clothing – nothing too restrictive that will stop the flow of lymph fluid.  Then, over the last two or three months, the leg slowly started improving.  My ankle still swells during the day but only half as bad as it did.  I wear high heels occasionally and it does swell but not too bad.  I still keep the shower cool but I no longer worry about keeping my leg straight while sitting.  I think it has found a route through and I wonder how much more improvement I will get as its only 10 months since the op at the moment.

To summarise, although I have had moderate lymphedema, it is quite manageable, for me it was just about educating myself about how to deal with it.  I am due to fly long haul shortly so I will have to see how it behaves then, aparently that's another tricky time for it.  Also I will be visiting a hot climate so I will have to watch out for mosquitos.  Its particularly important to avoid infection when you have no lymph nodes as there is nothing to stop it spreading.  Nothing that a mozzie repellent wont sort out!  I hope all this info gives you an insight into what it is like living with lymphedema.

Good luck.  You'll feel much stronger in a few months, the fog does lift and we adjust to our new 'normal'.

Emma (Dublin, Ireland)