Minnesota

I was diagnosed with Primary Lymphedema Tarda (onset after age 35), about a little more than a year after my melanoma diagnosis and SLNB.

It is severe, I have zero lymph fluid uptake in either leg.

Mine is not from the cancer or surgeries. My vascular doctor said I was born with an incomplete lymph system, and a possible explanation is that scar tissue formed over time on my lymph nodes from autoimmune disease.

I can't help but think there's some connection somewhere, but the science is not there. Yet. 

I was diagnosed with Primary Lymphedema Tarda (onset after age 35), about a little more than a year after my melanoma diagnosis and SLNB.

It is severe, I have zero lymph fluid uptake in either leg.

Mine is not from the cancer or surgeries. My vascular doctor said I was born with an incomplete lymph system, and a possible explanation is that scar tissue formed over time on my lymph nodes from autoimmune disease.

I can't help but think there's some connection somewhere, but the science is not there. Yet. 

I was diagnosed with Primary Lymphedema Tarda (onset after age 35), about a little more than a year after my melanoma diagnosis and SLNB.

It is severe, I have zero lymph fluid uptake in either leg.

Mine is not from the cancer or surgeries. My vascular doctor said I was born with an incomplete lymph system, and a possible explanation is that scar tissue formed over time on my lymph nodes from autoimmune disease.

I can't help but think there's some connection somewhere, but the science is not there. Yet. 

I had the same thing happen. Of course you need to get it checked, but in my case, it was inflammation and scar tissue and it took steroid injections into the scar to get it to settle down.

I had the same thing happen. Of course you need to get it checked, but in my case, it was inflammation and scar tissue and it took steroid injections into the scar to get it to settle down.

I had the same thing happen. Of course you need to get it checked, but in my case, it was inflammation and scar tissue and it took steroid injections into the scar to get it to settle down.

I was a 1B with a high mitotic rate, and it's been more than 3 years with no change. I am doing so much better emotionally now, it just takes time. One of the best thing I did was to begin attending a yearly cancer retreat about a year after diagnosis. They aren't any different than any other type of retreat other than its okay to discuss cancer as a normal every day topic. That was the missing piece for me. 

I was a 1B with a high mitotic rate, and it's been more than 3 years with no change. I am doing so much better emotionally now, it just takes time. One of the best thing I did was to begin attending a yearly cancer retreat about a year after diagnosis. They aren't any different than any other type of retreat other than its okay to discuss cancer as a normal every day topic. That was the missing piece for me. 

I was a 1B with a high mitotic rate, and it's been more than 3 years with no change. I am doing so much better emotionally now, it just takes time. One of the best thing I did was to begin attending a yearly cancer retreat about a year after diagnosis. They aren't any different than any other type of retreat other than its okay to discuss cancer as a normal every day topic. That was the missing piece for me. 

I have primary lymphedema with zero lymph fluid uptake in either leg. I was born this way, but ironically it was never diagnosed until 18 mos. after a SNB for melanoma in my left arm, which was unrelated, but finally brought me to a vascular doctor.

I have four children (all born prior to diagnosis), and my legs were stumps during the last months of each pregnancy – people would gasp when they saw my legs and feet. They went back to their previous state a few weeks after my kids were born (but still much larger than normal, as that was how they'd always been).

I wear 30-40 mmHg pantyhose now.  I went through the short-stretch wrapping to get the size of my legs down, which is really important if you haven't done that through a physical therapist. I wear non-prescription compression soft yarn socks to bed. The only time I'm not in compression is when I'm in the shower.

If you are wearing a compression garment every single day for all your waking hours, I doubt you will have any problems with a pregnancy. If you are only wearing one when you have a lot of swelling, it will be really hard to get on top it while pregnant and it could easily go out of control. 

My advice would be to get in full daily compression before you get pregnant so that it's a solid habit. Also, find a fitter that you can see on a regular basis to keep measuring and have you in the right pregnancy pantyhose as the pregnancy progresses. I would not do single leg compression as it will bind too much at the top of your leg – pantyhose sound awful, but they will support a pregnancy much better and eliminate binding.

If you are 5'4" or less, make sure you can get a petite size – it took me 9 mos. of pain and frustration before I found the type that worked for me (Juzo), I am 5'4" and even the "short" were too long, I needed petite. Lymphedma sucks, but once you find the right garment, it just becomes a habit like brushing teeth. Once you are in the right amount of compression, you can forget that you even have it and can do anything you want.

I have primary lymphedema with zero lymph fluid uptake in either leg. I was born this way, but ironically it was never diagnosed until 18 mos. after a SNB for melanoma in my left arm, which was unrelated, but finally brought me to a vascular doctor.

I have four children (all born prior to diagnosis), and my legs were stumps during the last months of each pregnancy – people would gasp when they saw my legs and feet. They went back to their previous state a few weeks after my kids were born (but still much larger than normal, as that was how they'd always been).

I wear 30-40 mmHg pantyhose now.  I went through the short-stretch wrapping to get the size of my legs down, which is really important if you haven't done that through a physical therapist. I wear non-prescription compression soft yarn socks to bed. The only time I'm not in compression is when I'm in the shower.

If you are wearing a compression garment every single day for all your waking hours, I doubt you will have any problems with a pregnancy. If you are only wearing one when you have a lot of swelling, it will be really hard to get on top it while pregnant and it could easily go out of control. 

My advice would be to get in full daily compression before you get pregnant so that it's a solid habit. Also, find a fitter that you can see on a regular basis to keep measuring and have you in the right pregnancy pantyhose as the pregnancy progresses. I would not do single leg compression as it will bind too much at the top of your leg – pantyhose sound awful, but they will support a pregnancy much better and eliminate binding.

If you are 5'4" or less, make sure you can get a petite size – it took me 9 mos. of pain and frustration before I found the type that worked for me (Juzo), I am 5'4" and even the "short" were too long, I needed petite. Lymphedma sucks, but once you find the right garment, it just becomes a habit like brushing teeth. Once you are in the right amount of compression, you can forget that you even have it and can do anything you want.

I have primary lymphedema with zero lymph fluid uptake in either leg. I was born this way, but ironically it was never diagnosed until 18 mos. after a SNB for melanoma in my left arm, which was unrelated, but finally brought me to a vascular doctor.

I have four children (all born prior to diagnosis), and my legs were stumps during the last months of each pregnancy – people would gasp when they saw my legs and feet. They went back to their previous state a few weeks after my kids were born (but still much larger than normal, as that was how they'd always been).

I wear 30-40 mmHg pantyhose now.  I went through the short-stretch wrapping to get the size of my legs down, which is really important if you haven't done that through a physical therapist. I wear non-prescription compression soft yarn socks to bed. The only time I'm not in compression is when I'm in the shower.

If you are wearing a compression garment every single day for all your waking hours, I doubt you will have any problems with a pregnancy. If you are only wearing one when you have a lot of swelling, it will be really hard to get on top it while pregnant and it could easily go out of control. 

My advice would be to get in full daily compression before you get pregnant so that it's a solid habit. Also, find a fitter that you can see on a regular basis to keep measuring and have you in the right pregnancy pantyhose as the pregnancy progresses. I would not do single leg compression as it will bind too much at the top of your leg – pantyhose sound awful, but they will support a pregnancy much better and eliminate binding.

If you are 5'4" or less, make sure you can get a petite size – it took me 9 mos. of pain and frustration before I found the type that worked for me (Juzo), I am 5'4" and even the "short" were too long, I needed petite. Lymphedma sucks, but once you find the right garment, it just becomes a habit like brushing teeth. Once you are in the right amount of compression, you can forget that you even have it and can do anything you want.

No family history for me.

I fit other risks: Red (more red/blonde) hair, fair skin, long-term corticosteriod patient, intermittent sun exposure in winter (vacations, although I was protected).

I never tanned, stayed in the shade/protected my skin in the sun. One time in 1986, a coworker talked me into going to a tanning salon and I was on the bed for a few seconds and hated the way it made me feel like I was being microwaved, and never went back. 

No family history for me.

I fit other risks: Red (more red/blonde) hair, fair skin, long-term corticosteriod patient, intermittent sun exposure in winter (vacations, although I was protected).

I never tanned, stayed in the shade/protected my skin in the sun. One time in 1986, a coworker talked me into going to a tanning salon and I was on the bed for a few seconds and hated the way it made me feel like I was being microwaved, and never went back. 

No family history for me.

I fit other risks: Red (more red/blonde) hair, fair skin, long-term corticosteriod patient, intermittent sun exposure in winter (vacations, although I was protected).

I never tanned, stayed in the shade/protected my skin in the sun. One time in 1986, a coworker talked me into going to a tanning salon and I was on the bed for a few seconds and hated the way it made me feel like I was being microwaved, and never went back.