Radiation - induced lymphedema

fhny2012

Hello,

I recently had my reconstruction to permanent implants, and am now facing rads...however, I am terrified of getting lymphedema from radiation, and am thinking about cancelling rads since the two ROs I've met with have said I was in a "gray zone" and that it was my decision.

I have no signs of lymphedema right now, but I had 21 nodes removed in the ALND during my BMX, and I know that radiation would only put me much more at risk for LE.

How much of a risk are the rads?  What have been your experiences?

Thank you so much in advance for your insight!

Best,

Faith

Rose_d

Faith,

I went through the same decision and was also told that my need for radiation was in the grey zone.  I too was most worried about lymphedema (still am!).  Because I had 18 nodes removed, all 3 of the ROs I met with said they would NOT radiate my axilla - just the breast area and the superclav area (by my collarbone). 

Because of this, my RO tells me that my risk of lymphedema went up 2% over what it already was from having the lymph nodes removed.  The risk is already too high but 2% more isn't much worse.  They told me that my risk of lymphedema would have gone to 50% if they had radiated the level 1 and 2 lymph node area.

Whatever you decide, I would NOT radiate your axilla.

It's a hard decision (the hardest one I have had to make since this all began!) for sure.  At the end of the day I decided that, given my personality, I needed to do the radiation in order to be able to tell myself I have done everything possible to keep this from coming back.  And I just really really hope I don't get lymphedema.

I just finished radiation about 9 days ago.  My skin is still a mess but I see the light at the end of the tunnel.

Good luck with your decision,

Rose

carol57

Faith, I am using my phone for this post and do not have access to some of my computer resources, but a little while back I posted a summary from a really good study that reviewed many years of research on LE risk when you combine treatments. I think you may find it if you search for the author name, 'Vicini' , in my posts. This article may help you double check what you are hearing on the risks. Also, search radiation under Kira's posts, because not long ago she posted some detailed and credible information about the difficulty of targeting exactly and only the desired fields.



Sorry that I cannot dig these up for you at the moment, but I think a quick search will surface them.



Carol

Binney4

fhny, seeing as how you are already at risk for lymphedema, how about a referral from any doctor on your team to a well-qualified lymphedema therapist for pre-rads baseline measurements, personalized risk assessment and risk-reduction tips, learning a gentle lymph massage you can do yourself to keep things flowing, and fitting for a compression sleeve and glove or gauntlet to use prophylactically for exercise, travel--and rads! Several women here have had good results from using garments during the weeks of their rads treatment. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Wish this whole process wasn't so fraught with these rotten decisions! Do keep us posted!
Hugs,
Binney

purple32

fhny2012

I had NO rads ( my choice) and  a SNB with 2 nodes out.  I  got  LE.  sometimes I think half this  'crap' is a crap shoot ( pun intended)

Binney's advice is spot on.

BeckySharp

fhny2012--I know how agonizing it is deciding what is best.  I agree with Binney to try to get a referral to an LE therapist pre-rads.  Then read up on things you can do to reduce the risk of LE. I kept basing my decisions on trying to prevent the cancer from returning, then worrying about LE later. But I do wish I had known more about it before my treatments.  I found out all of my information here after the fact. Let us know what you decide.

Purple--You are right!  A "crap" shoot.  I was told I only had a 1% chance of LE with SNB and mammosite.  Here I am!  Who knows.

fhny2012

Thank you ladies!  Your posts were extremely helpful.  I also met with a new MO yesterday, who said that if it was her, she would definitely radiate.  She agreed that the axilla should not be radiated, and she said that while it would increase my chance of LE, it wasn't going to send it through the roof, and that early detection was key.  I am going to look into getting a sleeve.

Thank you all!

kriserts

This is exactly the decision I went through, and exactly the words I heard from everyone. I'll never forget one radiation doc telling me that if I got lymphedema, I'd have to wear a sleeve and my BC would always be public (she said it much kinder than that). My surgeon was really the one who wanted me to have the radiation, so that I wouldn't need to worry about "hearing from breast cancer again." Well, they were both somewhat right. I did develop lymphedema, and I often am angry at myself for choosing radiation, since I was in the grey zone. I love cycling, and in the hottest weather, I have to wear a sleeve. It really makes me angry, I can never go for a bike ride and feel the wind on my arm. However, I can't say how I'd feel if I were on the other side, and hadn't chosen radiation. I might be worried constantly. (I know my mother would never have forgiven me.) If you go down one path, you can never know for sure what would have happened on the other path.

carol57

Kriserts, That is a perfect description of the gray zone decision dilemma. Thank you for such a thoughtful way of looking at it.

Denise-G

I was Stage III and really didn't have a choice about Rads.  I am thankful I did them and had no problems.  I had some minor LE before rads and rads did exacerbate it a bit.  I was 9/14 nodes.  I see a LE therapist twice a month and only have to wrap my arm when it acts up.  It is an inconvenience, but I wouldn't change anything I did.

I gave a talk about this at my local hospital last weekend.  I have learned to incorporate LE into my life.  The facts are you can get LE 15 years from now even if you don't have rads.  My nurse in my rad dept got it 10 years post treatment and she has a severe case. She never had rads - just chemo. 

You have to make the best decisions for you now based on the information you have and live with the results.  It is all you can do.  I am glad you asked the question so you can get more insight from those of us who have been there.  My best!

purple32

.  The facts are you can get LE 15 years from now even if you don't have rads. "

Its a total crap shoot.

My husband had 24 nodes out , stage 4 colon cancer ( 1 node pos) a Big surgery with ileostomy which was later reversed,and is 100% fine  3 yrs out. Had max,. radiation. NO LE OR LE precautions given (MGH) .

He was  told he would have to practially live on baby food.

Eats  sausage grinders, chili, pizza- you name it.

The man is fine! NED.

I had LX, skipped rads against the advice of my dr , 2 nodes out and here I am LE in the breast, then left arm & hand  and somehow - now in the right!
As for the BC always being public - mine has been a secret/ nobody knows.

Not for long!

fhny2012

Kriserts - I'm so sorry re: your LE.  I really struggled with this decision b/c as you pointed out - the gray zone is tough as you never can know what would have happened if you chose the other path.  I am going to do the radiation, but it has been very hard for me to come to grips with the fact that I will never know what the "right" choice was.  As Denise-G pointed out, you can get LE with or without rads. 

I'm scheduled to start the Monday after Thankgiving.  Trying not to freak out...I've already loaded up on Biafine and Calendula!  I had my reconstruction 3 weeks ago and am so relieved to have my TE's out...I just want to baby my poor chest after putting it through so much already!

Wishing everyone a wonderful, healthy day!

cider8

I was in the grey zone with BMX, ALND, clean margins, 1 positive node. I chose no rads! A year later (2 months ago), I had recon revision surgery to remove a seroma (turned pseudo-bursa). Well, a few stupid cancer cells were found by pathology inside that seroma. I went to the same RO that previously agreed rads would not benefit me. She and the tumor board agree I now need rads. So I will do it. I'm pissed about it, but I want about 40 more years to be Mom. I have latent signs of LE. You bet I will grill my RO about minimizing LE risk. I'm well established with my LE therapist.

Binney4

Cider, I'm so sorry! That's a nightmare, but I'm so glad they found those rogue cells and will be annihilating them promptly. Was the word "grill" referring to your RO a deliberate pun, perhaps?

Keep us posted. Huge hugs,
Binney

cider8

Binney, I did not notice my pun! You gave me a good laugh.

lionessdoe

Radiation damage:

http://www.leiomyosarcoma.info/raddiscuss.htm