Could These Symptoms be Lymphedema?

mimikitty · July 2012

Hi,

I had a lumpectomy in May and just finished Canadian protocol (19 days including 3 boosts) whole breast radiation at the end of June. I had one lymph node removed and it was clean.

Before the surgery, I expressed concern about my lymphedema risk from the surgery and radiation. My surgeon, MO and RO said I was at extremely low risk of getting lymphedema from these procedures. The reasons they gave were that 1-only one sentinel node removed, and 2-I am thin (5' 4" 108 lbs). Therefore, they said it won't be a problem if I continue to receive acupuncture to the affected arm and also continue to do arm-heavy yoga positions such as handstands.

I did yoga through radiation and had an occassional acupuncture session on the affected side. Also, it took a long time for the node biopsy scar to heal, which finally did last week. Now my arm feels messed up. My tricep muscle feels really sore and I get a hot and cold feeling in the muscle beneath and behind my armpit which also sometimes radiates down my arm to my elbow. Also, there is a strange numb feeling mostly near the bone of my upper arm which sometimes radiates down to my lower arm. I don't notice any swelling in my arm or hands. I started to feel this strange feeling when reaching for that bar on the radiation machine around the 2nd or 3rd week of rads.

My RO attributes it to nerve damage caused by the surgery. My husband thinks I just fatigued my muscle as I worked it so hard when getting radiated. I insisted on an evaluation by a lymphedma specialist and I have an appointment set up, but it's not for another two weeks. I'm not sure if I should continue my yoga practice during this time or if it puts me at an increased risk - or will make it worse if it happens to be lymphedema.

Please let me know if these symptoms sound familiar to anyone and if you might know what it could be.

mrsnjband · July 2012

It could be nerves regenerating but pain in a muscle can be a symptom of lympedema. That's how mine started. I also had the jinlging pains across my back & down my arm.

While the risk of lymphedema is lower by taking only one node it is still possible to get it. By taking only one node it has disrupted the flow of the lymphatic system. If you learn to do the manual drainage you can change where the lymphatic fluid goes to.

I'm glad you insisted on the appointment and that you learn the techniques to manage it.

I would stop the heavy exercises with the arm until after you see the LE therapist. Some exercise is good but that might what is aggravating it.

There are others that know more than I do & they will probably give advise as well. NJ

LtotheK · July 2012

My PT estimates up to 5% per node +10% or so for radiation. That's not nothing. She also really advises against downward dog and hot yoga, FWIW. I have not gotten swelling, but when I overdo it, I sometimes get arm pain. I have been careful to back of when that happens, as this is sometimes known as Stage 0 LE. It could also be nerve damage, by why risk it!

mimikitty · July 2012

Thanks for your responses. I love yoga and didn't want to give it up. I initially instructed the surgeon to not remove any nodes because of this. It was only upon her and the assurance of other doctors that I wouldn't get lymphedema that I agreed to go through with the procedure. I'm ignorant about how this condition is diagnosed. Can a lymphedema physical therapist idenfity the presence of lymphedema with certainty in the evaluation?

cathy1968 · July 2012

Hi - a lymphadema (LE) therapist is your best bet at identifying any LE and advising you on resources that will help manage your LE risk. It's very possible that what you describe isn't LE and simply nerve/muscle ache from treatment. The therapist should be really helpful on that.

(Warning: Rant beginning!!) I'm so sorry that your DRs assured you that you wouldn't get LE (makes my blood boil actually)! From what I understand that is incorrect. Having even just 1 node removed means your risk is very low, but will never be zero. Add rads to that and as LtotheK mentioned above, 5 to 10% risk of developing LE is not nothing!! Even the best surgeons and MO's are woefully lacking in LE knowledge. My surgeon was shocked that I developed it, saying "but lymphadema is relatively rare" yet he knows he took 14 nodes out of me, grrrr!! Okay, rant over!

Whether you develop LE or not, and even if your risk is very low, it's advisable to proceed with caution and learn new techniques for, well living, but also for many activities; the "new normal" for each of us. The good new is that you can be very active and excercise and do the things you love like yoga, just in a modified way. It's so worth finding out what precautions you need to take and following them. I buried my head in the sand and threw caution to the wind, not changing the way I used my arm, lifting heavy things, etc....5 months after my surgery I developed LE.

Ask your therapist if there are any excercise programs for people with or at risk for LE in your area and research how to safely exercise so as not to trigger it (this website has a lot of info and would be a great place to start) and your new normal can be a great one!

mimikitty · July 2012

Thank you Cathy. A quick question - prior to starting radiation, I asked my RO if radiation will put me at an increased risk of arm LE. He said it didn't because he was not directing it at my lymph nodes, just the breast. This doesn't jive with the 5-10% figure you and LtotheK provided. So I'm wondering if 5-10% risk is just for when the lymph node area is radiated.

mimikitty · July 2012

Also, I'm very sorry you all got LE and thank you very much for sharing your experiences.

tinkertude · July 2012

Hi ladies.. I have a question.

I am flying for the first time since all my sugeries. I have had both a sentinel and an axillary node dissection. Currently I have no signs of lymphedema, is it necessary to wear a compression garment on my arm. The flight is relatively short about 2 hours\Thanks you!

Maria

Mooleen · July 2012

It would be a good idea. It has something to do with the fluctuating pressure in the airplane and it could start up Lymphedema. That is what I was told.

cathy1968 · July 2012

mimikitty - that's a good question, about whether rads to the breast only cause risk for arm LE. I'm not sure as I didn't have any rads, I just always come across that stat and since the breast and ipsilateral arm both drain into the same underarm, maybe straining one area could affect the other? I do know that there are lymph nodes in the breast which can be damaged by rads, and sometimes lymphedema occurs in the breast and/or trunk.

Sorry I'm not much help, but you may wish to ask that as a new topic, there is a wealth of knowledge on these boards!

Good luck!

Binney4 · July 2012

Mimi, though the risk of arm LE has been reduced with the introduction of SNB instead of ALND, the risk of breast LE appears to have risen with the SNB and rads. Breast (truncal) LE is underdiagnosed and it can be hard to get a surgeon to refer for LE evaluation based on breast/chest symptoms. So it's something to be aware of. A referral for LE evaluation can be done by any doctor on your team.

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

Be well!
Binney

Could These Symptoms be Lymphedema?

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