Radiation to lymph nodes after ALND?

Teakay

Ok, I just got back from my RO and he suggested having radiation to my chest wall and lymph nodes under arm and clavical lymph nodes. I had a mastectomy, and an ALND 2 of 17 nodes found positive.  Grade one,1.8 cm tumor and it was close to chest wall. His reasoning is that they are finding more and more studies showing that doing radiation to women with a mastectomy with early stage cancer, and  3 or less nodes to have some benefit against recurrance. I am fine with that...my worry is lymphodema. If I had 17 nodes taken out and then radtiation under the arm..am I sure to get lymphodema?...I don't know? Should I be more worried about cancer and not worry about lymphodema?? He did say that I was in a grey area and wanted to check with his colleges and meet back with him after I finish my last round of chemo in a few weeks and make a decision then. What would you do?

christine47

Teakay,  I don't have the answer to your question, being in the "grey area" is just so hard.  Hopefully your RO will get back with you and have more answers and opinions.

sunny2

Hi Teakay,

I had a mastectomy..left side with 12 nodes removed.  Six were involved.  I also went thru chemo before and after surgery.  I am now into 6 of 36 treatments of radiation.  I am having the chest wall, left side, and the clavical nodes zapped....none in under arm.  Anyway, my doc strongly suggested that I excercise my arms using a 2lb weight to help reduce my risk of lymphdema.  He says our bodies actually make new lymph channels, not nodes, and excercise helps with that. He felt confident that I would not have any trouble.  As with everything it seems, there is always the chance.  Good grief, I couldn't believe I signed the consent form for radiation without a gun to my head.

 Blessings 

Teakay

Ok, thanks! I excerise a lot already, so it is good to know that it helps! I am thinking that I am going to go for it and worry about lymphema IF that happens. I would much rather worry about that, than cancer coming back.

Marple

Teakay,

I also was told I was in the grey area.  My tumour was 3 cm and I had 1/14 node pos.  My RO said to treat aggressively she recommended rads.  So that's the route I chose.  It was a difficult decision and at the time I was aware of lymphedema but was not once told rads increased my risk.  (Or if I was told I sure don't remember.)  Anyway, I did 25 rads and did develop lymphedema.  I am grade 2 stage 2 (b, I think).  All I can tell you is lymphedema has seriously impacted my life.  Now having said that, maybe I was going to get lymphedema anyway.  Noone knows.  Many go ahead with rads and don't have any lasting problems.  For sure having radiation does not mean you will develop lymphedema, it does however, increase your risk.

My rads hit the chest wall, axilla, clavical.

In hindsight, I can say with minimal doubt, I'd likely choose the same treatment plan.

Good luck with your decision and I hope you don't have any problem whatever path you choose.

Teakay

Sharon--those are the same areas that my RO wants to hit. I am sorry to hear about your lymphedema. But, I guess it does help me to know that you would choose the same path inspite of it. I guess that is what I am looking for. Thanks and best wishes to you!

SpecialK

I had BMX, ALND after pos SNB with one additional larger node, was told by BS and MO no rads needed, had 6 TCH and developed axillary web syndrome/painful cording after the 3rd tx.  Have mild (stage 1) LE now, without having had rads.  I would imagine that it would have complicated things even more if I had.

ALittleBitBritish

Teakay,

Did you get a second opinion?

Teakay

AHHH! This is soo hard! I have had the cording issue too..though it has gotten much better as time passes. He examined me and knew about this. Cries. I think I am just going to focus on getting through my last chemo in two weeks; and wait to talk to him again after he talks with his colleges and make a decision then.  I am going to try really hard to put it out of my mind..yeah right.

Teakay

Alittle--

No...My RO is going to talk with his colleges...but maybe I shouldn't be satisfied with that and get a second opinion.

Binney4

Teakay, the cancer is the really bad guy. The LE is rotten, but it's no contest -- do what you need to do about the cancer.

That said, I sure agree with ALitBitBrit that a second opinion would be reassuring.

There's much you can do to lessen your lymphedema risk. Request a referral from any doctor on your team to a well-trained lymphedema therapist. S/he will take baseline arm measurements for future reference, give you personalized risk reduction tips, fit you for a compression sleeve and glove to wear prophylactically during the weeks of radiation and afterward for exercise and travel, and teach you a gentle lymph massage you can do yourself. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here are websites for reliable risk-reduction information:

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

http://www.lymphnet.org (see their Position Papers on Risk Reduction, Air Travel, and Exercise)

(Sunny, you too may find the Exercise Position Paper helpful as you move forward toward healing.)

There's a forum here at bc.org for Lymphedema. Please feel welcome to post questions and concerns there -- you have Sistahs there who are happy to help.

Be well!
Binney

Marple

Teakay, I suggest you post this on the lymphedema forum.  There are many knowledgeable women there who can help you out.  Not in making your decision but in taking precautions.

toomuch

Teakay - I had 2/12 positive nodes with ECE (extracapsular extension.) I had rads to my chest wall, axilla-with a beam from the front and one from the back, and to my supraclavicular nodes. I had mild LE prior to rads and it has progressed slightly. It is still stage I. I took the precautions that are described on the stepup-speakout website that Binney posted the links to. I do MLD and LE exercises daily. I wear a sleeve and glove as much as possible and wrap at night. Sure I hate LE and the time it takes to manage it. But I would hate a cancer recurrance even more. I would choose the same therapy again. These decisions are hard and what's most important is that you are at peace wiith your treatment plan.

juniper17

I had 20 lymph nodes removed and rads to my axillary nodes with no lymphedema. So, no, LE is not a given with this treatment. If you haven't already been referred to a PT who specializes in post-MX care and LE, ask your RO for one. She will give you guidance on how to prevent LE as well as what exercises to do (or not do) during radiation. My PT recommended that I wear an LE sleeve during radiation to reduce the risk of the rads causing LE. It's definitely worth a try. 

dlb823

I had rads after a mx and 16 node ALND due to 1 funky positive node (extracapsular extension) and also a weird, unspecified margin issue.  I also agonized about whether or not I really needed RT, but after getting several opinions, I decided I'd be better off taking the no regrets route and risking the LE or other complications.  Also, the rad onc I chose reeled off a list of factors that make one more likely to develop LE, and I just didn't fit any of them -- things like matted nodes or being overweight.  And, thankfully, I sailed through rads without any problems.  The only LE I have is occasional truncal LE, which is well managed with sports bras, avoiding getting overheated, doing weight bearing exercise, etc., and I'm not sure if it wouldn't have happened anyway, since I had a lumpectomy w/SNB, then a mx w/ALND+Diep recon, then chemo, so had plenty of disruption to my lymph system prior to RT.        Deanna 

Teakay

Thanks guys!! I think that I will take the great given adive and get a referral to a specialist before hand...and then go for it. I know that I won't have peace of mind doing everything that I could to beat the this! Warm hugs!!