Tag Archive | lymphedema

Linked by Pink meeting

Wednesday was the monthly Linked by Pink meeting, and I arranged our schedule so I could make it. I’m feeling a little frustrated with having to curtail some of my activities because of treatment, and I wanted to be around others who would understand that fact without even having to discuss it.

Amanda from Keystone Rehabilitation was our special speaker. She was in charge of my rehab after my mastectomy and is so great. She talked about lymphedema and how to prevent it, or at least minimize any problems with swelling. Lymphedema is definitely one of those diseases that your outcome improves the earlier you stop the symptoms. You really need to nip it in the bud.

One of the exercises Amanda demonstrated to me when I was doing PT was lymphatic massage. I have continued to do it twice a day (and three times a day while I was doing radiation) – in the morning and evening. I find it easiest to do when I’m changing, because you need to slide your hand along your torso and chest, and a bra just gets in the way. I keep hoping I can stop doing the massage, but every time I cut back, I can feel the area where my shoulder-blade hits my ribs start to build up with fluid. It’s not too bad, and I’m going to keep it that way so I don’t have to get a pump. Then you have to strap on a compression vest and sit for an hour while it squeezes you every which way, looking something like this:

ComfySleeveI will bring one of my lymphedema sleeves with me on our trip, though, since I’ve been told that traveling is prime time for some swelling to happen. Since you’re sitting around a lot and not using your arm as much, the muscles aren’t pushing out the fluid like usual, and it can build up.

All in all it was a useful meeting!


I must be feeling better

I can tell I’m getting used to the expander because my port has been irritating me lately. It doesn’t hurt, but I can still feel it under my clothes on a regular basis, even though it’s been in for over six months. I won’t be sorry to see that removed. I know it makes getting chemo infinitely easier, but I certainly don’t appreciate it outside of the Cancer Center.

I’m still waiting to get back to the point where I don’t notice the armpit area on my right arm.  It’s hard to tell if the problem is in my arm, my torso, or it’s all just imaginary as my brain gets used to the sensations coming from the nerve messed up by surgery. Part of it is a bit of fluid retention, though – I think. To help with fluid in my torso, I got a Swell Spot.


This gets tucked into a sports bra at bedtime, with the wing curving around and under my arm. While I feel really silly wearing it (between the expander and the padding, my right breast is HUGE wearing this. In fact, I went out a bought a larger sports bra so it would fit better), it works amazingly well. The quilting on the device promotes the flow of lymph out of the area, and the area feels less full in the morning. Apparently, I had some swelling around the expander as well, that this has taken care of. I can tell it’s less swollen now because I can see the access port to the expander through my skin. Now I’m matching – access ports on both sides of my chest. Lovely!

How do you like my sleeve?

My new LymphaDiva sleeves came in, so I picked them up on my way to the Cancer Center (more on that appointment in a later post). The woman I’ve been working with at the Pennsylvania Artificial Limb and Brace Company (yeah, it’s a mouthful) has been extremely helpful and knowledgeable about what’s available to help a breast cancer patient.

First, we tried on the sleeve.

The Flutter LymphaDiva sleeve and gauntlet

The Flutter LymphaDiva sleeve and gauntlet

I’m pleased with the pattern choice I made. I also got a plain beige one to wear under long sleeves, but I wanted to try on the pretty one first. I had help putting it on this time, and I’m sure it will be much more difficult to do on my own since it’s so snug. I got the small short sleeve and the small gauntlet (for my hand). The sleeve itself isn’t too noticeable when I wear it, but the gauntlet makes the muscle in the ball of my thumb cramp up. I might wear the sleeve around just to get used to it, but there’s no way I’m wearing the gauntlet unless it’s absolutely necessary.

Since I was there, I mentioned to the assistant how lop-sided I am after the final fill on my expander. It’s going to be months before I get the expander exchanged for the implant, and I was wondering if there was anything I could do to even things up. Turns out there is. I can get a breast form to up the size on my left breast so it matches the expanded right side. I can also get a partial form for the right side so there isn’t quite the drop off on the underside of the breast. If I’m going to go in that direction, I probably want a mastectomy bra to hold the forms in place as well, so I’ll have to go back for a fitting and to pick out a style that will work without irritating my port.

Oh, and while I’m at it – check out the hair!

Look - there's hair!

Look – there’s hair!

It feels like real hair, finally, and you definitely can’t see my scalp through what’s come in. It’s even long enough to stick up occasionally! I’m still waiting to get to the point where I can style it, but at least it’s enough to keep my head warm around the house now.

A visit to the physical therapist

One of the surprising elements of my mastectomy is how much it messes with the associated arm. I wasn’t allowed to lift my arm over my head while I had the drains in, and now I can’t even if I want to. This is a known change and so Dr. Engel gave me a prescription to the physical therapist. Because of the removal of lymph nodes, I also need to make sure that physical therapist is a lymphedema specialist.

I was supposed to see the physical therapist within two weeks of the surgery, but with Christmas and New Year’s between the surgery and my appointment, it ended up being a bit later than two weeks. This was just an introductory/measuring visit.

Amanda, the PT I met with, measured my range of motion in both arms for comparison. I had to stretch my arm as far as I could go lifting from the front and then from the side. I also stretched my arm behind my back as far as I could. Needless to say, my right arm didn’t do as well as my left, as you can see from the pictures below. In each, I’m reaching as high as I can with both arms.

Reaching to the side

Reaching to the side

Reaching to the front

Reaching to the front


Amanda also took measurements on the girth of both arms and hands. She measured at the knuckles, the wrist, and at 30cm, 40cm, and 50cm past the nailbed of the middle finger on both arms. If the right arm is significantly larger than the left, that’s evidence of lymphedema and I need to take steps to reduce the swelling. At this point, they’re nearly identical so I’m good so far. Even so, Amanda taught me how to do lymphatic massage to make sure all the fluid is moving out of my arm smoothly.

On a recovery note, I feel much better today than I did even two days ago. The fullness in my armpit is gone, as is much of the pain there. Now, the problems I’m having is in the chest muscle stretching over the expander. Still wearing the Ace bandage, but I’ve got a place to go to see if I can find a good bra. Things are improving, though, even if it isn’t quite as fast as I would like.