Who got le without any nodes out in arm.

hugz4u

Now recently have bilateral trunk breast arm le.
No nodes taken or tested from that side that was just diagnosed. Yup masectomy did me in. Who else did this happen to. bummer but I'll just keep active as always. BC the gift that keeps giving

Looking for strategies and videos online to clear all nodes. Not good at self MLD gonna be a steep learning curve. Got to bite the bullet!

MinusTwo

Hugz - soooooo sorry. I don't have any specific advice. And I agree, self MLD is a bitch to keep up. Hope someone else has more experience.

Binney4

Hugz, how frustrating! I'm so sorry. I have truncal and arm LE on the prophylactic mastectomy side, no nodes removed. In fact, that's where it started for me, three years after the mastectomy on the cancer side. And yes, keeping active is both good for the LE and a way to thumb out noses at the stupid LE.

Lebed exercises deal with both sides, and the opening section really helps me. For me, I clear the nodes in my neck and inguinal area before I shower, then as I wash up I use the washcloth to gently and slowly wash in the direction and order of my MLD routine. Same thing with the towel when drying. With bilateral LE you need to move the lymph fluid down toward the inguinal area rather than across your chest to the opposite armpit. I like this youtube video for explaining that part of bilateral LE MLD:

So, yeah, crummy. But doable, and you've got this!

Gentle hugs,
Binney

Kara70

Hugz, I'm so sorry that you got lymphedema even though you had no nodes removed and it sounds like you are active as well. I was looking at this post because I am five years out from my treatment for stage II, had a mastectomy and had sentinel nodes removed (and had chemo) but only more recently became aware that I too could get LE. I was only told to not have my blood pressure taken or blood from the affected side....

I became a cancer exercise specialist as a personal trainer and only through my study did I fully understand what you should do to prevent getting lymphedema. Warm-up well before exercising and make sure to do lymph draining exercises (it takes about 10 minutes) before you start any physical activity (this is different than MLD). If your therapist recommends it, you should wear bandages during exercising. Weight training is really good for lymphedema prevention or management, but you need to start very slowly and only progress very slowly as well, start with no weights and 1lb. per week increase max and see how you do.

Also, being at a healthy weight is important and being on an anti-inflammatory diet, since it is a vascular disease which is complicated by chronic inflammation. If you are at an early stage, it may be reversible....

I wish you good luck during these already hard times and let me know if you are managing okay.

Darlene63

thank you so much for the video; where do you find people to help with LE? None of my doctors have been help; I don’t know if they just don’t know or don’t care

Darlene63

where do I find a exercise cancer specialist?

Betrayal

With a mastectomy, lymph nodes are removed even of not for diagnostic purposes. This diagram shows the distribution of lymph nodes throughout the breast tissue. Sorry to hear you are experiencing this problem. See if you can get a referral to Lymphedema specialist when we return to a more normal life. Many of these specialists are physical therapists with advanced training and certification. The video that Binney posted is very good. Good luck.

MinusTwo

Darlene: You can get LE with NO nodes removed. Or with only the sentinal nodes removed to test them for cancer. Most docs get exactly 15-30 minutes about lymphadema in their 7-10 years of medical school. Below is a link that has some trained, certified people in various parts of the country, as well as lots of good information.

https://www.stepup-speakout.org/

NineTwelve

Does anyone know if you can get lymphedema just from cancerous nodes? I have never had surgery or radiation, but I have numbness and tingling in my armpit, which is relieved by elevating my arm. If it is lymphedema, where do I start with the education process?

Binney4

NineTwelve, I'm so sorry you're having to deal with yet more questions on this journey. Short answer, yes, it's possible for lymphedema to develop from any blockage to the flow of the lymph system, and sometimes that's a result of cancerous nodes. If the affected nodes are reduced or removed the lymphedema will likely disappear, but if that's not a possibility then it's still possible to find ways to ease the symptoms. You'll want a referral from any member of your medical team to a well-trained and experienced lymphedema therapist for diagnosis and help in assessing the best approach to treatment. Do ask him/her about using a night garment, as the compression is light and the support for arm and hand tissues is soothing and should decrease symptoms and give you relief.

Please keep us posted and let us know what you discover. In the meantime, sending you gentle hugs,
Binney

NineTwelve

Thank you, Binney. I suspected as much. It's better to face a reality no matter how unpleasant, than continue to hope against evidence that nothing is wrong. My next scan is in a week, and I see my oncologist a few days after that. I'll be sure to ask about the lymphedema specialist referral.

In the meantime, is it okay to ice the area, or is that not recommended?

Binney4

NineTwelve, if cold helps do use it, but gently. Wrap an ice pack in cloth so it's not next to your skin, and limit the time to 15 minutes at a time. Extreme temperatures, whether hot or cold, draw lymph fluid to the area (y'know how your feet can swell in hot weather, and your hands after a gloveless snowball fight?), which can result in overload on the system and swelling, which of course you don't want. As you've already discovered, elevating your arm can help--on the back of the couch while you're reading or watching TV, on pillows at night.

I'll be keeping you close in my thoughts over the next week as you look for the answers you need. Please tell us how we can help.

Gentle hugs,
Binney