Recently developed lymphedema: Any recommendations on what to do?

I am five years out from my mastectomy which included removal of 19 lymph nodes, three of which were malignant. Within four months of the mastectomy, I had developed right upper extremity lymphedema. I started occupational therapy, wearing a compression garment, doing exercise exercises. It’s typically the next step. And for most people it works. It didn’t work for me, however. I had a total loss of lymphatic function in my arm, and had to have a highly specialized transplant surgery, which restored the function. if I could do it all over again at the time, my Lymphedema was first discovered I would have asked for a DYE test. They inject a green dye between your fingers and then watch it as it travels up your arm, or leg. In my case, there was zero movement I had lost all function. had I known that earlier I would’ve had VLNT surgery a year earlier than I did. The diet test is not painful and is not difficult and it will determine those rare instances or total loss of lymph function has occurred. They will also determine instances where you do have the function and you’re a great candidate for therapy and wearing compression garments. Just my opinion, but it’s better to know sooner than later where you stand. They don’t do that test everywhere so you may have to travel.

After surgery and removal of just the mandatory three lymph nodes, I developed lymphedema in my left arm, in spite of doing all the exercises I was given. Within a few months I received a referral to a trained lymphedema therapist and had massages for two months, twice a week on my arm. It went away about 90%. When I feel a little swelling I do some massage myself. If they don’t tell you, you should not get blood pressure or blood draw in the affected arm. I also had lymphedema in my belly, but did not realize that was what it was. Struggling with that now and may be too late to fix.
Important to get it treated ASAP.

Yes I only had three lymph nodes removed and developed lymphedema about six months after treatment on my left side. I have been going to PT. I have an awesome lymphedema massage therapist I see once a month I wear compression garments and I also use a machine by tactile twice a day it’s still here. It doesn’t stop me from doing anything something I just have to live with possibly good luck to you.

How did you know you had lymphedema in your belly? Had my bilateral in October and just finished 6 mos of physical therapy using cupping to keep the skin pliable(I chose flat). I feel like my stomach looks bigger than it did before… but maybe it’s just that my breasts hid most of it ! I’m back to walking most days and eating well so it shouldn’t be “ gained” weight…?

Yes I only had three lymph nodes removed and developed lymphedema about six months after treatment on my left side. I have been going to PT. I have an awesome lymphedema massage therapist I see once a month I wear compression garments and I also use a machine by tactile twice a day it’s still here. It doesn’t stop me from doing anything something I just have to live with possibly good luck to you.

I want to deal right away with my recent hand swelling, probably lymphedema, and my breast cancer centre says it will be weeks until a physiotherapist will contact me. Everything I read says to treat it quickly. The only advice in the meantime from the nurse is to raise that hand above the heart level. I see there are compression gloves for arthritis online, can one assume they treat lymphedema as well? Or does anyone have a link to lymphedema compression gloves?

I want to deal right away with my recent hand swelling, probably lymphedema, and my breast cancer centre says it will be weeks until a physiotherapist will contact me. Everything I read says to treat it quickly. The only advice in the meantime from the nurse is to raise that hand above the heart level. I see there are compression gloves for arthritis online, can one assume they treat lymphedema as well? Or does anyone have a link to lymphedema compression gloves?

I developed lymphedema months after having a double masectomy - and the arm that developed it in was NOT the arm near the breast that had cancer (I had 12 lymph nodes taken out of the left arm, but the right arm was fine, nothing removed by the non-cancerous breast)
So from what I understand that some surgeons and nurse practitioners fail to tell you is that ANY surgery can cause lymphedema and that the patient is always surprised when one arm is suddenly noticably bigger than the other. You should be in physical therapy and see a therapist for the lympho. You can temporarily get a FINGERLESS glove for your hand, and a sleeve to wear on that same arm. Amazon actually sells some fairly good brands. look up on line how to measure, you'll be measuring your wrist, your forarm, around the widest part of your upper arm right below your armpit and then the length of your arm. compression should be 20-30 mmHg. Sigvaris is a good company, the have a secure gauntlet, graduated compression. A little pricey, but comfortable and not too heavy weight when you are wearing it. Make sure you measure for length of your arm from wrist to underpit. I have a great therapist and I've already got the one arm back to it's normal size and matching the other arm in only a 2 months, but I've also had physical therapy and that also helps. Good luck, many hugs, just remember you don't want a glove you want a gauntlet. (and an arm band). The other thing - read up on the lymphatic system in your body - it will help you a lot to understand how it works, why it swells, and what to really do about it.. I thought drinking more water would help - but that's not how it works, so forget water pill suppliments if it's just your hand and/or arm. Oh, and medical supply stores also sell these compression arm pieces, just make sure you measure and then use their size charts.

I just saw your post, which is exactly what I am experiencing: had left side nodes removed during mastectomy for local recurrence of breast cancer, and radiation, and for the past 2 weeks or so my left hand is slightly swollen and slight pain if I touch it. Did you get help for your case? I guess I will consult my onco but have been hoping it would go away on its own. I really had hoped to escape lymphedema!

I developed lymphedema months after having a double masectomy - and the arm that developed it in was NOT the arm near the breast that had cancer (I had 12 lymph nodes taken out of the left arm, but the right arm was fine, nothing removed by the non-cancerous breast)
So from what I understand that some surgeons and nurse practitioners fail to tell you is that ANY surgery can cause lymphedema and that the patient is always surprised when one arm is suddenly noticably bigger than the other. You should be in physical therapy and see a therapist for the lympho. You can temporarily get a FINGERLESS glove for your hand, and a sleeve to wear on that same arm. Amazon actually sells some fairly good brands. look up on line how to measure, you'll be measuring your wrist, your forarm, around the widest part of your upper arm right below your armpit and then the length of your arm. compression should be 20-30 mmHg. Sigvaris is a good company, the have a secure gauntlet, graduated compression. A little pricey, but comfortable and not too heavy weight when you are wearing it. Make sure you measure for length of your arm from wrist to underpit. I have a great therapist and I've already got the one arm back to it's normal size and matching the other arm in only a 2 months, but I've also had physical therapy and that also helps. Good luck, many hugs, just remember you don't want a glove you want a gauntlet. (and an arm band). The other thing - read up on the lymphatic system in your body - it will help you a lot to understand how it works, why it swells, and what to really do about it.. I thought drinking more water would help - but that's not how it works, so forget water pill suppliments if it's just your hand and/or arm. Oh, and medical supply stores also sell these compression arm pieces, just make sure you measure and then use their size charts.