Radiation for nodes under arm questions

DonnaNY · 04-26-2009, 01:44 AM

Hi , Moms Onc said she may need radiation for some nodes under her arm , its not a definite yet. He wants to see her next Pet Scan. But he did say her arm could swell, has anyone here had Radiation in this area? If so did your arm swell? how bad was the swelling and does it go away after ? Thanks again all , you are all a Godsend, and God Bless all!

With love, Donna

04-26-2009, 06:47 AM

I had radiation to the nodes. Doctor warned me it could cause Lymphedema (swelling), but so far it has not. It is a possibility though from what he said. He felt I should take the risk and have the radiation as I had one node positive, and because of the size of the node.

hutchibk · 04-26-2009, 10:34 AM

I chose not to have radiation at all under the arm or to the local breast tumor area. My dx and size parameters were on the fence as to whether radiation was absolutely necessary. My surgeon got clean margins in underarm area and mastectomy. My onc and I agreed that in my case the chemo would work systemically to attack anything that might have remained. I also learned about some negative longterm problems and outcomes that can result from radiation in those areas which helped me make my decision, including but not limited to lymphedema, which is a very real concern.

If she chooses to follow through with rads, please have her visit with a lymphedema specialist prior to treatment (wound care specialty doctors are also lymphedema specialists) to learn how to mitigate the chances of full-blown lymphedema. It is imperative that she know the truth and the potential for severe lymphedema in advance and the continued maintenance that is necessary to ward off the risk. It doesn't only occur at the outset after treatment. It can appear years after... if you let your guard down. And once it becomes full-blown, it is almost impossible to eradicate. I hope your doctor does not marginalize the risk of lymphedema. If he is only calling it "swelling" then I would worry that he is not giving it enough emphasis. I have too many friends who did not know what "swelling" really meant and have suffered years of painful lymphedema in their arms because they didn't realize how serious it could become.

Make sure you do your homework in advance.

StephN · 04-26-2009, 11:40 AM

Sorry your Mom has to go through this, but you are asking the good questions.

Most women who have the radiation have very little trouble with lymphedema. I had 15 nodes in my axilla removed and only had a small amount of swelling in my right hand, but NONE in my arm. The problem was minimal and temporary.

One of the key things is to make sure the surgeon does NOT cut through the main nerve that runs through the node pad. They can cut around it if they take a few more minutes. This way there will still be feeling at the back of her arm and she will be aware of anything like bug bites or sores that might become inflammed, which is often the trigger to lymphedema.

If she regains her range of motion and slowly works on strengthening, she should be OK. I have a nurse who was fine for 7 years after her mastectomy and fell while hiking, which got her swelling started. One just never knows, but being reasonably aware of the arm and hand should prevent any swelling.

Overuse is a big trigger as well. I think the radiation is less of a problem than the actual node removal and use of the arm.

gumoore · 04-26-2009, 01:35 PM

There are many different factors that can contribute to lymphedema, not just radiation.

I am overweight, had radiation in my axilla, and I had node removal at surgery. I was told the odds of lymphedema were anywhere from 10 to 40%. I got it about 1 year following my mastectomy.

I guess in some ways I'm lucky because it's manageable with a compression sleeve. At first the sleeve annoyed the heck out of me. Now I barely notice it.

I will say one thing though: it's a small price for still being here.

Mary Jo · 04-26-2009, 01:55 PM

I, too, had radiation to my armpit area. After the pathology report came back from my mastectomy , the "node negative" status we thought we were granted turned out to be "node positive." One node had 1 micromet of involvement. Because it was 1 micromet and the other sent. node was clean I would not allow a complete axiliary dissection...both my surgeon and oncologist backed by decision but after meeting with the radiation oncologist agreed that radiation to that area - plus to my right mastectomy site and back area - would be beneficial. I was warned of the risks but to date (3 years 9 months out) have had no trouble.

Good luck to your mom. What a special daughter you are.

Mary Jo

tricia keegan · 04-26-2009, 01:59 PM

Donna,
I had rads to this area too with three lymph nodes positive but had no swelling or problems at all. I used 100% natural aloe vera jel daily to prevent burns and it worked great.
My best to you and your Mom

Debbie L. · 04-26-2009, 04:36 PM

Donna, what your mom's onc is talking about is an increased risk of lymphedema, which a little different that just basic "swelling". If they determine that she need special axillary (underarm) radiation, my suggestion would be that you get her to a certified (LANA) lymphedema therapist BEFORE the rads begin. Your oncologist or nearby comprehensive cancer center should be able to refer you, but you may need to ask before they'll start the process (sigh, alas).

This person will take some baseline measurements, and educate your mom (and you, if you so desire) about what to watch for as far as lymphedema symptoms. If she experiences symptoms, she'll return to the therapist for treatment and an at-home plan for management. It's not a certainty that she'll develop lymphedema but it's a possibility and it's much better to be pro-active and educate yourselves so that you'll get on top of it asap, if it happens. It's almost always manageable if management is begun early-on.

Let us know how this plays out, okay?

Love,
Debbie Laxague

DonnaNY · 04-27-2009, 12:52 AM

Thank you all so much. My moms Onc wants to avoid Radiation if possible because of risk of Lymphadema, but if it is needed I wanted to know what the risk was, so thank you. I will pass on your advice. God Bless !

StephN · 04-27-2009, 10:57 AM

Hi Donna -
I am not a doctor, but from my experience, "risk of lymphedema" is not a good reason to avoid radiation.

The purpose of the radiation is to clean up any lingering cancer cells that may not have been caught by the surgery. The purpose is to reduce chance of recurrence or metastesis. Especially if a person is not having systemic treatment of chemotherapy.

hutchibk · 04-27-2009, 04:02 PM

I agree with Steph - it is not a good enough reason to rule out or avoid rads... but please learn all you can about it as you are deciding to move forward. There are lots of protections and maintenance techniques that should be practiced.

Joan M · 04-29-2009, 07:35 PM

Donna,

I had 19 nodes removed and radiation to the armpit area in 2003.

Although radiation can increase the risk of lymphdema, I've never had a problem.

However, I someone in my local breast cancer group does have lymphadema and it can be painful and very bothersome.

But I wouldn't rule out radiation due to the potential of developing lymphedema. Sometimes it depends on the circumstance. I had 7 positive lymph nodes and radiation was recommended.

Joan