stage 3a, upcoming lymphadenectomy & lymphedema

Hi Lizzy,

I was diagnosed in 2006 with stage 3a mel — micromets in the sentinel node in my right groin area.  After the biopsy of the node came back positive, my onc suggested I remove the rest of the nodes in my right groin. I decided to move forward with the surgery, which happened in Dec. of 2006, followed by interferon in 2007.

In terms of lymphedema in my right leg, I haven't had any severe problems with it. Since the surgery, I have found that I do have some fluid build-up, but only occasionally do I have any pain (and when I do it's like a throbbing). During the first year, I bought the compression stockings, which I'd wear occasionally and they'd help, but they can be itchy, and I decided not to wear them anymore. And over time, I found I didn't really need them anyway.

On a daily basis, I have found that my right leg and right foot is larger than my left, but not so much so, that I have a problem with wearing pants or shoes (although I don't wear strappy sandals or shoes like that, I mostly stick to the the flip-flops in the summer). And I find I'm a little self-conscious wearing shorts or a skirt (it's mostly around my right ankle where it's noticeable), but I'm not sure anyone else really notices.  And in terms of exercise and lymphedema, I have been working out, running, etc, since I finished interferon in late 2007, and I've never really had a problem with major swelling, at least not any more than I do on a daily basis. And I did lose some sensation in right thigh, my onc told me before the surgery that it was a possibility. I do have to say that it was kind of weird at first, especially walking or running, but it's only topical, not deep tissue, and now I barely even notice.

So I guess my experience hasn't been all that bad – my right leg is slightly larger than my left, and I occasionally have a a bit of pain, but that's really it.  And for me, I don't regret having the surgery.

I know that making a decision to move forward with any kind of treatment and/or surgery is a very personal one.  I wish you all the best in trying to make the right decision for you.  And please don't hesitate to send me a message back if you have any questions.

~SarahS

stage 3a, 4yrs NED

Hi Lizzy,

I was diagnosed in 2006 with stage 3a mel — micromets in the sentinel node in my right groin area.  After the biopsy of the node came back positive, my onc suggested I remove the rest of the nodes in my right groin. I decided to move forward with the surgery, which happened in Dec. of 2006, followed by interferon in 2007.

In terms of lymphedema in my right leg, I haven't had any severe problems with it. Since the surgery, I have found that I do have some fluid build-up, but only occasionally do I have any pain (and when I do it's like a throbbing). During the first year, I bought the compression stockings, which I'd wear occasionally and they'd help, but they can be itchy, and I decided not to wear them anymore. And over time, I found I didn't really need them anyway.

On a daily basis, I have found that my right leg and right foot is larger than my left, but not so much so, that I have a problem with wearing pants or shoes (although I don't wear strappy sandals or shoes like that, I mostly stick to the the flip-flops in the summer). And I find I'm a little self-conscious wearing shorts or a skirt (it's mostly around my right ankle where it's noticeable), but I'm not sure anyone else really notices.  And in terms of exercise and lymphedema, I have been working out, running, etc, since I finished interferon in late 2007, and I've never really had a problem with major swelling, at least not any more than I do on a daily basis. And I did lose some sensation in right thigh, my onc told me before the surgery that it was a possibility. I do have to say that it was kind of weird at first, especially walking or running, but it's only topical, not deep tissue, and now I barely even notice.

So I guess my experience hasn't been all that bad – my right leg is slightly larger than my left, and I occasionally have a a bit of pain, but that's really it.  And for me, I don't regret having the surgery.

I know that making a decision to move forward with any kind of treatment and/or surgery is a very personal one.  I wish you all the best in trying to make the right decision for you.  And please don't hesitate to send me a message back if you have any questions.

~SarahS

stage 3a, 4yrs NED

Hi Lizzy,

I was diagnosed in 2006 with stage 3a mel — micromets in the sentinel node in my right groin area.  After the biopsy of the node came back positive, my onc suggested I remove the rest of the nodes in my right groin. I decided to move forward with the surgery, which happened in Dec. of 2006, followed by interferon in 2007.

In terms of lymphedema in my right leg, I haven't had any severe problems with it. Since the surgery, I have found that I do have some fluid build-up, but only occasionally do I have any pain (and when I do it's like a throbbing). During the first year, I bought the compression stockings, which I'd wear occasionally and they'd help, but they can be itchy, and I decided not to wear them anymore. And over time, I found I didn't really need them anyway.

On a daily basis, I have found that my right leg and right foot is larger than my left, but not so much so, that I have a problem with wearing pants or shoes (although I don't wear strappy sandals or shoes like that, I mostly stick to the the flip-flops in the summer). And I find I'm a little self-conscious wearing shorts or a skirt (it's mostly around my right ankle where it's noticeable), but I'm not sure anyone else really notices.  And in terms of exercise and lymphedema, I have been working out, running, etc, since I finished interferon in late 2007, and I've never really had a problem with major swelling, at least not any more than I do on a daily basis. And I did lose some sensation in right thigh, my onc told me before the surgery that it was a possibility. I do have to say that it was kind of weird at first, especially walking or running, but it's only topical, not deep tissue, and now I barely even notice.

So I guess my experience hasn't been all that bad – my right leg is slightly larger than my left, and I occasionally have a a bit of pain, but that's really it.  And for me, I don't regret having the surgery.

I know that making a decision to move forward with any kind of treatment and/or surgery is a very personal one.  I wish you all the best in trying to make the right decision for you.  And please don't hesitate to send me a message back if you have any questions.

~SarahS

stage 3a, 4yrs NED

I am also stage 3a.  I was given a choice of joining a trial where they monitored the lymph nodes with ultrasound or surgery.  I chose surgery.  Even though all the other nodes were clear I am still happy I did as what I now realize is that before I had my Sentinel Nodes removed they also did the ultra sound.  It could not pick up the micro-mets.  So I am glad I took the safe route.

Now the not so pleasant side.  Yes, I have lymphedema.  But as soon as I was healed from the surgery and I realized the lymphedema was not going away I got myself to a message therapist.  I caught it early.  I have a lymphedema sleeve I wear for long flights (we like to travel).  It really doesn't change my life at all.  But mine is in my arm which is easier.

There is one other thing you should know.  My doctor mentioned it but it didn't sink in.  The risk of nerve damage.  My nerves were damaged during the surgery, after 18 months I am guessing they are not going to heal.  I know they take a long time but I think this is probably as good as they'll get.  Again, not at all debilitating.  Just annoying.  Somedays, don't even notice, sometimes just itching, other times a shooting pain.   It doesn't matter to me, I'm alive and healthy.  I can do anything I want.  My arm has full mobility and just about its full strength back,,,,,so I'm good.

I am not telling this to scare you.  I would recommend the surgery to anyone considering it.  It's great piece of mind.  But you need to know the possibilities and how to deal with them.  So much of your recovery will depend on your attitude.  Make your own informed decision and then don't look back.

Good luck

Mary

Stage 3

I am also stage 3a.  I was given a choice of joining a trial where they monitored the lymph nodes with ultrasound or surgery.  I chose surgery.  Even though all the other nodes were clear I am still happy I did as what I now realize is that before I had my Sentinel Nodes removed they also did the ultra sound.  It could not pick up the micro-mets.  So I am glad I took the safe route.

Now the not so pleasant side.  Yes, I have lymphedema.  But as soon as I was healed from the surgery and I realized the lymphedema was not going away I got myself to a message therapist.  I caught it early.  I have a lymphedema sleeve I wear for long flights (we like to travel).  It really doesn't change my life at all.  But mine is in my arm which is easier.

There is one other thing you should know.  My doctor mentioned it but it didn't sink in.  The risk of nerve damage.  My nerves were damaged during the surgery, after 18 months I am guessing they are not going to heal.  I know they take a long time but I think this is probably as good as they'll get.  Again, not at all debilitating.  Just annoying.  Somedays, don't even notice, sometimes just itching, other times a shooting pain.   It doesn't matter to me, I'm alive and healthy.  I can do anything I want.  My arm has full mobility and just about its full strength back,,,,,so I'm good.

I am not telling this to scare you.  I would recommend the surgery to anyone considering it.  It's great piece of mind.  But you need to know the possibilities and how to deal with them.  So much of your recovery will depend on your attitude.  Make your own informed decision and then don't look back.

Good luck

Mary

Stage 3

I am also stage 3a.  I was given a choice of joining a trial where they monitored the lymph nodes with ultrasound or surgery.  I chose surgery.  Even though all the other nodes were clear I am still happy I did as what I now realize is that before I had my Sentinel Nodes removed they also did the ultra sound.  It could not pick up the micro-mets.  So I am glad I took the safe route.

Now the not so pleasant side.  Yes, I have lymphedema.  But as soon as I was healed from the surgery and I realized the lymphedema was not going away I got myself to a message therapist.  I caught it early.  I have a lymphedema sleeve I wear for long flights (we like to travel).  It really doesn't change my life at all.  But mine is in my arm which is easier.

There is one other thing you should know.  My doctor mentioned it but it didn't sink in.  The risk of nerve damage.  My nerves were damaged during the surgery, after 18 months I am guessing they are not going to heal.  I know they take a long time but I think this is probably as good as they'll get.  Again, not at all debilitating.  Just annoying.  Somedays, don't even notice, sometimes just itching, other times a shooting pain.   It doesn't matter to me, I'm alive and healthy.  I can do anything I want.  My arm has full mobility and just about its full strength back,,,,,so I'm good.

I am not telling this to scare you.  I would recommend the surgery to anyone considering it.  It's great piece of mind.  But you need to know the possibilities and how to deal with them.  So much of your recovery will depend on your attitude.  Make your own informed decision and then don't look back.

Good luck

Mary

Stage 3

Hi Lizzy

I am stage 3b, I had my surgery June 29th 2011. I had 17 lymph nodes removed and yes I have lymphedema in my right leg. If I stay on my feet alot, I have swelling in my leg and foot. If I set down and put my leg up high for about an hour it goes back down. I am still glad I had the surgery and would do it again. I had my first ct last week and it was clean, no cancer. I had three weeks of high dose interferon and one shot. I could not take anymore because I started vomiting blood and my fever went to high. I feel great and the lymphedema is something I can learn to live with. And remember you may  be one of those people that doesn't get lymphedema. You do what you feel in your heart and it will be the right choice. Lymphedema can be bad, but anything is better than cancer. I only had melanoma in one lymph node, but they wanted to make sure they got it all , that is why they took 17 out. I had a choice, I cauld have had only the one node with cancer removed and may had to have another surgery later on. For me, this was the best choice and I am glad I had the surgery. I wish you the best

Vicky stage 3b

Living with Lymphedema of right leg

Hi Lizzy

I am stage 3b, I had my surgery June 29th 2011. I had 17 lymph nodes removed and yes I have lymphedema in my right leg. If I stay on my feet alot, I have swelling in my leg and foot. If I set down and put my leg up high for about an hour it goes back down. I am still glad I had the surgery and would do it again. I had my first ct last week and it was clean, no cancer. I had three weeks of high dose interferon and one shot. I could not take anymore because I started vomiting blood and my fever went to high. I feel great and the lymphedema is something I can learn to live with. And remember you may  be one of those people that doesn't get lymphedema. You do what you feel in your heart and it will be the right choice. Lymphedema can be bad, but anything is better than cancer. I only had melanoma in one lymph node, but they wanted to make sure they got it all , that is why they took 17 out. I had a choice, I cauld have had only the one node with cancer removed and may had to have another surgery later on. For me, this was the best choice and I am glad I had the surgery. I wish you the best

Vicky stage 3b

Living with Lymphedema of right leg

Hi Lizzy

I am stage 3b, I had my surgery June 29th 2011. I had 17 lymph nodes removed and yes I have lymphedema in my right leg. If I stay on my feet alot, I have swelling in my leg and foot. If I set down and put my leg up high for about an hour it goes back down. I am still glad I had the surgery and would do it again. I had my first ct last week and it was clean, no cancer. I had three weeks of high dose interferon and one shot. I could not take anymore because I started vomiting blood and my fever went to high. I feel great and the lymphedema is something I can learn to live with. And remember you may  be one of those people that doesn't get lymphedema. You do what you feel in your heart and it will be the right choice. Lymphedema can be bad, but anything is better than cancer. I only had melanoma in one lymph node, but they wanted to make sure they got it all , that is why they took 17 out. I had a choice, I cauld have had only the one node with cancer removed and may had to have another surgery later on. For me, this was the best choice and I am glad I had the surgery. I wish you the best

Vicky stage 3b

Living with Lymphedema of right leg

My SLN came back micro mets as well under my right arm.  I decided to have the other 27 lymph nodes removed and 3 more lymph nodes were possitive so I am very glad I had them removed.  I just finished 10 1/2 months or so of Interferon and have had no problems with Lymphdema.  What a blessing so far.  I know everyone is different.  Good luck with your decision.

My SLN came back micro mets as well under my right arm.  I decided to have the other 27 lymph nodes removed and 3 more lymph nodes were possitive so I am very glad I had them removed.  I just finished 10 1/2 months or so of Interferon and have had no problems with Lymphdema.  What a blessing so far.  I know everyone is different.  Good luck with your decision.

My SLN came back micro mets as well under my right arm.  I decided to have the other 27 lymph nodes removed and 3 more lymph nodes were possitive so I am very glad I had them removed.  I just finished 10 1/2 months or so of Interferon and have had no problems with Lymphdema.  What a blessing so far.  I know everyone is different.  Good luck with your decision.

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)