Concerned about lymphedema, starting radiation soon

Meisum

Hi friends - I am having symptoms of lymphedema - feelings of heaviness, tingling, aching in my right upper arm, armpit, and chest area near armpit. I had an ALND and mastectomy on the right side in June. I initially thought my symptoms were something else since I had a successful LYMPHA procedure at the time of surgery (3 reconnections). I am scheduled to start radiation (25 treatments) on December 6th.

I have no swelling yet, as far as I can tell. I made an appointment with a physical therapist who specializes in breast cancer (and I hope lymphedema?), but she can’t see me until December 8th. I contacted my surgeon - she says it might just be a nerve thing and can’t see me until December 6th. But I’ve heard radiation can make lymphedema worse and I’m supposed to start on the 6th! I’m also worried that I’ll start swelling up before anyone can see me. There was so much emphasis on catching lymphedema while it’s early stage, so I was hoping for some treatment immediately or at the very least some advice so it doesn’t continue to progress (it feels worse every day)! Do any of you have advice? I am really worried.

Also, I am flying December 1st. Only about a 40 minute flight each way, but I was thinking I should order a compression sleeve and wear it just in case. And I also think I’m going to send my radiation oncologist an email about this. I have no idea if this could affect my treatment or not. What do you all think?

Thanks so much

MinusTwo

My RO was the one who diagnosed my LE and sent me to an LE specialist for treatment. Did you have base line measurements before your surgery? If not, get that done before Rads and yes, talk to the RO in detail about the risks and any additional precautions you should take.

Although my LE is breast & truncal, I always wear a sleeve & gauntlet when I fly. It can be controversial, but I'm erring on the side of caution. I don't want any progression if I can help it. Put the sleeve & glove/gauntlet on 30 minutes before take off and leave it on at least an hour after landing.

Below is the link for a premier LE site with tons of information.

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

Meisum

Thanks for your reply, Minus Two. I really appreciate the feedback! Yes, I had base line measurements before surgery as part of a study. I contacted my RO and will order a compression sleeve. I've also been doing lymphatic massage, which seems to help

Rah2464

Meisum the symptoms you describe sound like my lymphedema. I do swell now but just a tiny bit it is more the pain/heaviness/aching that alerts me. You need to be measured by a certified therapist and they will direct you to the correct size compression garments to wear. Be very careful doing this on your own. Incorrect garments can exacerbate the problem. So if you have to order something in a pinch, have someone assist you with measurements and order a garment that is sized by measuring ( not some random one that doesn't list how to determine size).

A compression tank or bra will also help with the truncal issue. If you search online there should be exercises listed that you could do on the plane to keep lymph moving. Start with deep cleansing breaths - about 10. This works as a "bellows" to your lymphatic system to pump lyphm through . Arm straight up in the air, opening and closing your fist is one. Yoga "goddess arms" out to the side then bringing them together, elbow to palm in front of you. Its hard to describe that one. But you can do these in your seat or while waiting to get on plane. Hope uou have a great trip and find an excellent therapist for the potential LE