Lymphedema concern? Should I be concerned?

wallan

Hi everyone:

I was dx with BC in March 2004 - almost 10 years ago (wow, I can't believe I am writing that ) Anyways, NED ever since. I had stage 3 BC and had mastectomy, chemo, (AC/T) and 18 nodes removed, two were positive. I had radiation. This was followed by 2 years tamoxifen, hysterectomy, oophorectomy and then 3 years aromasin. Recently, in October I had half my thyroid removed because of huge nodules they were afraid may be malignant. They weren't thank God.

Anyways, I am doing well despite it all. I have a great job I started about 8 months ago. This job does require some heavy lifting, and is stressful with long hours.

Great pay and benefits though and I enjoy.

For the last two weeks, I have worked long hours (14 hr days) and have pushed, pulled and carried heavy carts, equipment. A few nights ago, I noticed achyness in my upper back and under my arm on my mastectomy side (I never had reconstruction). I thought it was overwork. I took advil. It worked. However, last night, I noticed that the upper arm on that side (my right arm) looks larger than my other arm. If I held my arms up and looked, I could see bumps of swelling in the lower arm too.

It is not very pronounced, and I could just be paranoid. The achiness has returned a bit, but is completely controlled with Advil or Tylenol.

I have looked at the pictures on this Lymphedema topic and the swelling is not as bad as that. There doesn't seem to be any pitting. But, I do have the slight achiness, and it is puffy.

Should I be concerned and see if things resolve or should I have it looked at?

Sharing any experience with the onset of lymphedema will help.

Thanks

Wallan

Kicks

I would see a CLET (Certified LymphEdema Therapist - not some PT that claims they 'know ALL about LE') for an evaluation.  LE can come on at anytime after surgeries and once it raises it's ugly head, the sooner you get help with controling it the better - it does NOT majikally go away.

Marple

Any achiness with or without swelling should be seen by a therapist who specializes in treating lymphedema.  Early stages of lymphedema don't always present with apparent swelling.  Heavy lifting without working up to it (even working up to it can trigger symptoms) can certainly trigger lymphedema.  Please do not think you are being paranoid.  The risk is real.  It can happen at any time no matter how many years out you are and being proactive could certainly help you get things under control.  Please don't wait to have this seen to.  Wishing you well. 

Marple

This link may be of some help to find a therapist.  http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

Moderators

Hi Wallan,

First, congrats on your almost-10 year milestone!!! How inspiring

The members of this lymphedema forum are extremely helpful, and we're sure they'll be along shortly to offer their advice. In the mean time, you may be interested in checking out the main Breastcancer.org site's Lymphedema section, which includes helpful information on Lymphedema Signs and Symptoms, Reducing Risk of Lymphedema and Lymphedema Flare-Ups, as well as things to do and things to avoid.

We hope this helps!!

--The Mods

Moderators

Wow you all are fast! Cross posted with our post

Thanks ladies!

carol57

Wallan, drat it all, because unfortunately, it certainly could be LE. If so, the sooner you get it formally evaluated, the faster you can into treatment, and the better shot you'll have to get it under control and avoid the kind of swelling you can see in the photo series you looked at. Have you discovered step-up, speak out? It's an online group of women who met here and put together an amazing and accurate compilation of information to answer questions and suggest resources for all things LE.

Here's a link to their page on finding a qualified LE therapist, who is the professional best qualified to make a diagnosis if you've got LE brewing: http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

There are other pages on the stepup site that you'll find helpful, including symptom descriptions.

It's possible that all the heavy lifting and pushing triggered LE onset. Whether an evaluation determines you have LE or not, you might be interested in reading about exercise and the well researched guidelines for slowly building up to heavy weights and resistance. The lymphatic system responds to unaccustomed weight or resistance as a stress event and sends extra lymphatic fluid to the area. When our lymphatic system is healthy, we handle that just fine, but when the pathways are damaged (as in from our BC treatments and node removal), the added lymph can collect, i.e. make the arm swell. So the idea is to build up gradually to being strong enough to heft heavy objects, so that the body takes the weight in stride instead of responding as though there's a crisis. Here's one document about exercise: http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

You'll need a referral to get an evaluation by a certified lymphedema therapist, and your primary care doctor can provide that. If you learn (as many of us have) that your MD is not familiar with LE, here's yet another great resource from stepup-speakout--a handout you can give your MD, written by a doctor who herself has LE after breast cancer treatment: http://stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

I learned so much from the stepup site, and I think you'll find it helpful too. Hope you get to the bottom of this soon, and I especially hope that it's not LE at all and just some odd and temporary development. But just in case--the stepup resources are really, really helpful.

Carol

carol57

Oh gosh, everyone posting at the same time! Mods, what an amazing resource this forum is. I'm grateful for BCO every single day.

Moderators

and we are grateful for you all!

wallan

Thanks Marple for the link and thanks Kicks for your advice.

I will look into this. The link is very informative and I have been quite ignorant of the complications and suffering association with lymphedema.

I am going to take it way more serious now. I think some of my complacency has been fed a bit by doctors not seeming concerned. I get blood drawn, blood pressure taken etc and when I tell them I have had breast cancer and axillary dissection, it doesn't register and they seem unconcerned, so I think lymphedema must be low risk or something and even if swelling does happen, it can be controlled or managed.

So I will get my arm checked and start to be more rigorous about prevention.

Thank you so much again.

wallan

Marple

Generally speaking, Drs. are not your best resource for lymphedema information.  They tend to minimize and trivialize the risks and affects.  Beware.

Kicks

My Chemo Dr, Rad Dr and Surgeon made it very clear to me from day 1- no BP, IV/blood draws or injections in surgery arm.  In my close to 4 yrs dealing with LE, I have only run into 1 RN that I had a problem with not knowing only my left arm can be used.  I actually got up and was heading out of the room when he said he'd use my left arm.  According to him, he had his office set up for convience and the right arm had to be used - WRONG!  (I did report him and found out a few weeks later he was 'no longer here'.)

Yes - LE can be managed/controlled and the sooner it is DXd the better it is.  

Jayaytea

I had a surgery for fat grafting 10 days ago.  Since my UMX in February this year, I have been diligent about using the opposite arm for blood pressure, taking blood, etc.  I was Shocked when the anesthetist for this recent surgery told me the "latest studies" no longer indicate that this is necessary!  For my comfort, she did switch arms for the IV, but I had the blood pressure cuff put on my left arm during surgery.  By the way, my arm is bothering me on the MX side now!

Binney4

Jayaytea, don't they wish! As you can tell by the fact that your left arm is now "bothering" you, there's no such finding, and not likely to be since such a study, deliberately putting women at risk, would be unethical. The thing to keep in mind is that this is not the anesthetist's arm, it's yours, and it's the rest of your life.

For now, if you don't already have a well-qualified lymphedema therapist, find one here:
http://www.stepup-speakout.org/Finding_a_Qualified..
And then ask any doctor on your team to write you a referral for an evaluation. The earlier lymphedema is treated, the better the outcome and the easier it is to manage.

Please do keep us posted! Be well,
Binney

Horse02

Can anybody chime in to comment on  trunctal lympedema? Are indentations on breast and bra line signs of that? I am 6 weeks out of surgery and brought the issue up to my PT but she just brushed me off:(  

And yesterday after a bedtime hot bath I had two red rashes developing and did not go away till this morning.. I am very concerned

carol57

Horse02, those indentations (sadly) can indeed signal LE. Six weeks out of surgery you may be experiencing post-surgical swelling that will go away and stay away, but it's indeed also possible that you're seeing early signs of truncal LE.  Here are two very good resources to read and share with the PT:

http://www.lymphedemablog.com/2011/10/05/lymphedem...

http://stepup-speakout.org/breast_chest_trunckal_l...

I was experiencing truncal swelling that persisted 3 months after surgery and finally shamed my PS into a referral for LE evaluation.  I was astonished at that evaluation to learn that not only were my truncal symptoms likely to be LE, but my arm was also more than 10% bigger than the arm where no nodes were removed (and my LE arm is my non-dominant arm, so normally it should be smaller not bigger than the other arm).  I had not noticed that difference at all, but it did explain some sensations of heaviness and aching that I was feeling. 

One thing I learned from that experience is the importance of getting baseline arm measures, so you can know for sure how much an arm changes over time after surgery. I also learned that the eye is not a very good judge of subtle swelling. You'll learn from the links above that diagnosing truncal LE is challenging, and I encourage you to nudge that PT to take your symptoms seriously and do some arm measuring now, too.  If it all goes away as you continue to recover from surgery, that's wonderful, but just in case you're brewing LE, well, it's better that you have those baseline arm measures now and that you learn as much as you can about how to minimize your exposure to risks and events that can increase the chances that you develop LE.

Hoping that it's post-surgical swelling that will resolve itself and leave you alone thereafter, but also hoping that you'll get some better support from your PT to do more than just wait and see.

Carol