Lymphedema or something else?

Amber277

Hello and thank you in advance to anyone who takes the time to read this. Two years ago, at age 47, I was diagnosed with IDC, Seven months after finishing treatments, an axillary node on same side as original cancer became enlarged and upon biopsy, it was found to be cancerous, but pathology of this recurrence was triple negative. PET scan and MRI of breast at that time showed no cancer anywhere else. I then had a full axillary node dissection. None of the remaining axillary nodes contained cancer. I then had more chemo 3 months of Carboplatin and Gemzar . All of this treatment was finished about 2-1/2 months ago. Follow-up mammogram at that time showed only calcifications in area of lumpectomy which radiologist indicates appear to be scar tissue. Oncologist says he will follow me closely alternating between MRI and mammograms. Next scans are set for September – which are PET and breast MRI. In the last several weeks, I developed a lot of arm pain and thought I was possibly getting lymphedema, which I've never had before now. I really didn't notice any swelling so I was also thinking I might have just injured my arm – at times lately I've been a little over ambitious with the exercise since I'm finally feeling better after chemo but I did lose a lot of muscle tone after going through treatment for almost two years between my original treatment and then recurrence treatment. Anyway, I have pain with kind of a fullness feeling in the armpit area, a nerve type pain sometimes radiates up into shoulder, and down back of upper arm. I have a 6-month follow up with breast surgeon later this week so planned to ask her about all of this at that time; however, last week when checking for lymphedema swelling, I noticed what I guess I will call a lump, although its not a nodule-type lump, its more of a larger slightly raised area 2 or 3 inches wide and maybe an inch or two in length, just below where the axillary scar is – its not sticking out enough to actually see it when I look in the mirror but when I rub my fingers over the area I can feel what is either swelling or a mass – not sure which. Of course I'm driving myself crazy about what this could be and couldn't get dr. appt. moved up any sooner. If all axillary nodes are gone from that area, it can't be a node so could cancer be growing in the soft tissue there? Or is this just scar tissue from axillary surgery in February … but why am I just noticing it now and in conjunction with this arm pain. Maybe it is lymphedema …. but when I press on lump I don't see any finger imprints so don't think it really feels like fluid. Sigh … one of the hardest realities of my diagnosis plus having had one recurrence already … every pain or problem might equal more cancer?! I would appreciate any thoughts you might have and any enlightening tips you have for how to not spend my life worrying about a recurrence

Binney4

Hi, Amber, and welcome to bc.org. I'm really sorry about the problems that brought you here but glad you found us. The simple answer to your question is yes, this could be lymphedema, which sometimes presents first in just small areas such as you describe, and can certainly be present in the trunk as well as the arm. Also, pain is frequently a factor as lymphedema develops (though happily that generally disappears with treatment). It can be impossible to "eyeball" early-stage lymphedema, so accurate measurement and evaluation by a well-trained lymphedema therapist is the best bet. Also, your exuberance in getting back to exercising without working up to it carefully can be a trigger for lymphedema (bummer!)

As for driving yourself crazy with recurrence worries, we all sure hear you on that! I'm glad you're already scheduled to see a doctor later this week since getting answers is the only "cure" for the anxiety. Unfortunately many doctors are slow to consider lymphedema and don't really know much about it, so you might request a referral to a qualified lymphedema therapist, as those are the medical professionals trained to evaluate it. Here's how to find one near you:

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

If you haven't already seen one, it's a wise move anyway, as s/he can take baseline arm measurements for future reference and give you personalized risk-reduction strategies.

Please do keep us posted! In the meantime, rent a funny movie, find yourself an absorbing read, start a new hobby you've been meaning to try--anything to keep that worry at bay. Chocolate helps!

Gentle hugs,
Binney

kareenie

this could also be axillary cording.

Jennie93

Amber, I just have to say, what you describe is pretty much exactly how my LE presented. And it took a very long time to get it diagnosed, because basically every doctor refused to call it LE.

On the bright side, although it is annoying and often painful, it has never spread to my arm.

ChiSandy

Sure sounds like cording. It can be broken up by careful stretching and massage by a good LE therapist.

leftduetostupidmods

I am going to suggest cording as well. I never had lymphedema (was lucky) but I had cording and it's excruciatingly painful.

Is it getting increasingly harder to straighten your arm? Check carefully your armpit in the mirror. Lift your arm above your head and check in the mirror and also by palpating, can you feel something like cords under your skin in the armpit area?

Axillary web syndrome (cording) appears due to the fact that, after the lymph nodes are removed, scar tissue forms. This scar tissue then acts like a tourniquet on the lymph vessels, causing them to get shortened and when the cording is severe, the arm is stuck at a 90 degress at the elbow. The cording can go all the way to the base of the thumb, with visible cords on the inside of the bent elbow.

Good therapists know how to break the scar tissue and release thus the lymph vessels. Personally, I had over a dozen of these cords. The therapist showed my (then) boyfriend how to break the scar tissue - my insurance only pays for 15 sessions of massage/physical therapy a calendar year and I had more surgeries on schedule at that time so I wanted to have a few sessions unused. In the first 4-5 days, he had to break the scar tissue every 3-4 hours, as it would recover very fast and my arm would get locked again. Breaking the scar tissue is a painful process but it's all worth it considering.

Here are a few links

breastcancer.org on AWS

Step up speak out - with photos

Haley Rehab