How do you know its lymphedema?

ThinkingPositive

Had a mastectomy on Oct 23rd with tissue expander. There is still swelling in the side under my arm. Can this still be swelling from surgery? Also not sure if the swelling is due to the fills. Asked breast surgeon about swelling when I went for followup, she said it was from surgery, as did plastic surgeon..leftover tissue on the sides. Also asked oncologist and he said he didn't think so. Wondering if it can take that long for swelling to go away or is it lymphedema? Who should be able to answer this questions. Seems like I have to do quite a bit of researching on my own. Not sure who to ask anymore.

LauraW68

I had bilateral mastectomy on October 24. I do not have any swelling under my arms. I did have a seroma that had to be drained. I'm wondering if that could be what you are experiencing.

daisylover

Some of the swelling could be from surgery - mine took months to calm down. I also had a seroma which was drained twice - it hurt, though. Do you have pain? The surgeon should diagnose that. I developed truncal lymphedema after I started my Lupron shots. It all seems inter-related to me - Physical therapy with a breast cancer specialist has helped immensely. I did not have reconstruction - can you exercise yet? Stretching really helped.

jarris77

I also have questions about how you know if you really have lymphedema. I have always had problems with swelling in my legs and feet. A few months after my bmx, I noticed some swelling in my left hand and wrist (non cancer side). I called my surgeon immediately and was referred to lymphedema therapist. There, I was dignosed with lymphedema. I asked my surgeon what I was supposed to do when I needed to have bloodwork and blood pressure checks. He said the only thing you can do is use your right arm ( cancer side with lymp nodes removed). So, I have been having them use my right arm anytime I have to have anything done.

I went thru all the wrapping and ordering of customs garments, etc. it has been a year now and I noticed that I had a little swelling in one spot on my right arm. Diagnosed with lymphedema in right arm. 

I'm not totally convinced that it is lymphedema. Is it possible that I have something else going on that causes me to swell? Especially since I have always had problems with swelling in feet & legs (my mother and sister have the same problem).The swelling in my arms hasn't progressed, even if I don't wear my sleeves for months at a time.

My son is an orthopedic surgeon (obviously not an expert in lymphedema) and he said he isn't convinced that I have lymphedema. How do you ever know for sure if you don't have all of the classic symptoms? There doesn't seem to be a Dr. to go to for a definite diagnosis. My surgeon just passes me off to the lymphedema therapists (without even looking at the swelling himself). With all due respect, I'm not sure I trust the therapists that I have seen. When questioned, they would look at each other and say,"What did they tell us in that class?" It seems to me, when you are referred to them, they assume you have already been diagnosed and they are there to just order garments and wrap.

During my last visit with the therapist, I asked what I was supposed to do about about getting my blood pressure checked and blood draws if I have lymphedema in both arms. She never gave me a straight answer.

I really don't know where to go from here. 

ThinkingPositive

What is a seronoma? How can you tell if its different that lymphedema. Tried to call the Lymphedema Center at the hospital but was put on hold for so long, left a message but so far no one has called me back. This is 8 weeks since my mastectomy. I know that there is probably leftover tissue around the side of my body.. its not hard. Not sure what the tissue expanders are supposed to feel like after a fill...they feel swollen, can that be lymphodema as well in that area? I can move my arm and there is no swelling on the arm at all (yet) so I am worried about what this is. At one point the plastic surgeon said oh, thats scar tissue,and leftover back tissue from the mastectomy.and swelling..next time I went in and I asked again about the swelling,...he said well you mentioned lymphodema...??? Shouldn't he be able to tell me.. did he change his mind from last time?

daisylover

My seroma felt like a waterbed almost. it was also painful. 8 weeks seems pretty far out for a seroma to develop. I had swelling under each armpit that resolved over time. I do not have lymphedema in my arm, but swelling/tightness down my side. My PT is helping with that. It is frustrating when you don't get clear answers from the experts. I avoided some of the discomfort by not having reconstruction. I hope that you will get answers and relief soon!

ThinkingPositive

Thanks daisylover. I wonder if its possible that the seroma has been there since surgery. the swelling has gone down since surgery but there is still some around the side of where the mastectomy was. I have not a clue who to even go to for this.. I hope my MO will be able to get me to see someone...not something I want to deal with while going through chemo...

daisylover

I can only share what I have experienced - I am sorry that you have to deal with this uncertainty as well as the discomfort. When I had my swelling issues under/around my axillary (have some residual tightness still) dissection site, I saw the surgeon's nurse (who drained my seroma twice) and got a physical therapy prescription (I pushed for this because I thought that I had truncal lymphedema). I think that you are still too close to surgery for PTt? I did not have reconstruction - I believe that reconstruction slows recovery? My swelling under both arms and along incisions took months to resolve though - I think everyone is different. When it's appropriate for you, I think PT would definitely help resolve some swelling - get lymph system moving... Hope you find an answer soon - Take care

crystalphm

Jarris77, It probably is a form of Lymphedema that you are experiencing. They (studies) have found that people who have other family members with swelling are much more prone to LE after breast cancer surgery/treatment. . The reason was explained to me (basically) that some people have lymph super-highways in their bodies, and some of us have back-roads for lymphatic systems. So in our case, Lymph does not move easily and we swell even without Lymph nodes are removed.

I agree with you, I have a board certified LE therapist who never knows the answers to a question and I learn very little from her. And this is my 3rd one, all the same, they teach how to wrap, but not much else goes on with them. So I understand how you feel.

You can read on this forum of women who have blood drawls on their feet, but if you have leg swelling too, then I don't know the answer. I personally use my *best* arm for blood draws and blood pressure thinking that arm LE is easier to deal with than leg LE. But that said, I am not sure either.

I hope someone else joins this discussion.

crystalphm

Thinking Positive, Yes, certainly your swelling could be surgery related. You are doing the best thing you can, reading these discussion groups and learning!

juneping

After my surgery I just had this tightness At my armpit. I just thought its bc of surgery and ignore it. And I started exercise (yoga) and the tightness traveled from armpit down to my hand. Finally my index and middle fingers got fat. So I suspected it's LE and the LE specialist confirmed it. She also told me fingers are are hardest to unswell bc so many passages to go thru

Read about rebounding helped the lymphatic sys flow and detox so I bought a rebounder. And fingers are not swelling anymore. It does work.

mary625

Juneping--how much rebounding are you doing?

juneping

Mary - I rebound 30 min a day. I follow youtube exercise routine. There's a twin sisters...the beginners version which is only 20 min and I just add 10 more min.

Chloesmom

Not sure what to think if it's seroma or early Truncal lymphedema. A while after I'm up in the morning I can feel my sides swell at the level of my incisions in poofs that are about 3 in x 3 in. The pressure is very uncomfortable. if I take a soft ball and roll it over them for about 20 min I can milk them flat When I'm up the sta to swell again. My compression bra has a 3 in band on the bottom but the swelling is the 3 in directly above that so I am putting an ace wrap over the area and the bra on top of that or else it would look like a muffin top

The rest of my surgical site looks great. The swelling is all gone over the BMX. I'm nice and flat.

When I saw the doctor last week the chest was still swollen so the sides being swollen didn't look bad relatively speaking. The doctor was pleased. There is no swelling in arms.

Thoughts?

glennie19

Not really sure what to think.  Are you seeing your doctor soon?  I would want to get it checked out and be sure.

ThinkingPositive

I went in for my second chemo and asked my MO today..he said he did not think lymphodema...as surgical swelling can last for a long time.. but I would like to see a specialist anyway just to check it out. Who gives the prescription for that? I am led to believe that you can not just go see a lymphedema doctor without a prescription. They have a Lymphedema Center at my hospital..why would they made this so hard?

juneping

thinking - i didn't get a prescription when i saw the LE specialist. but i did see my BS first for a referral and she told me to try Sloan bc they have a complete program. so i called my MO (from sloan) who gave me a # to call for an appt.

so call first....

ThinkingPositive

juneping, thanks.. I will try calling and see if I need a prescription. I know that they are closed until jan 5, so there is another hospital that is closer to my home that has a lymphedema center as well, so I may give them a call and see what they may be able to do for me.

Lucy2014

I have read in different sites from sufferers and doctors that cold laser is doing good for lymphedema.

I am surprised that nobody has tried it yet

Binney4

Lucy, hello!

If you enter "cold laser" on the search page you'll find lots of past discussion here about laser use with lymphedema. Hope that helps. Have you tried it?

Be well,
Binney

Lucy2014

HI Binney

Thank you, I will look again. So far I have not seen enough posts about it and women using this treatment, I only come across posted complaining about L.

...some time later

I have read posts with 'cold laser' mentioned.

So far all those I read seem to be positive about its use.

ciaogina

Hi! I had a bilateral mastectomy on Oct. 27, 2014, with TE, drains out after 10 days, healed well, and thought I was out of the woods. Was going to PT, doing exercises, etc...A couple of weeks ago my wrist (surgery side) looked puffy, couldn't see the veins as I usually did. PT couldn't tell me if it's def LE. It's all I think about. I do have compression sleeve and gauntlet. How do I know for sure? Forgot to mention that I had 27 nodes removed in a axiallary dissection. I am so upset that this is LE. I'm only 43 and have two young daughters. I'm a busy mom and it's in my dominant hand. How am i supposed to carry on and do normal things? Also, I used to play tennis. Not sure if I can anymore and am very upset.

Morwenna

It does sound like lymphedema, Ciaogina

Are you wearing your sleeve fulltime now?

My main swelly area when I had a flare up, was in my wrist and forearm, and also thumb and 1st 2 fingers.

If you can't see your veins as well on that side (can you see them at all?), and your wrist creases look different from your other hand when you bend your wrist, it most probably is lymphedema.

Another test is to try pinching the skin gently between finger and thumb, and again compare the skin fold thickness with the other side. Finally, press your thumb or finger pad firmly into the swollen area for between 5-10 secs and see if it leaves an imprint. Again, compare with your normal side.

Did your therapist measure circumferences. She should have done. It's not rocket science!

As I say, my swelling was quite localized, and for a few weeks I was advised to do a full wrap at night, and wore my sleeve and glove in the day. I did have a little pad to increase the localized pressure. That regime brought it down well, and now I wear my sleeve for vigorous activity, or when I'm working for long with my hands down, eg gardening, or from time to time just because my arm feels a bit more heavy or achy, and the sleeve really feels good!

When I go walking or hiking, I like to use a pole --- that keeps my hand a bit elevated and the underarm area "open", plus the gripping action works the muscle pump mechanism.

As I just saw your point about tennis, I wanted to add, I joined a dragon boat race team this year, all bc survivors. A number of us wear sleeves. We all do graduated weight training before paddling season starts, and this is most important! The best way to prevent lymphedema is exercise! But you must start low and build slow. Do not exercise to the point of ache, and start with a light load, increasing repetitions in favour of load increases.

I'm sure you can continue tennis, but don't go out at the start of the season and practice for three hours, especially if you don't train over the winter!

In my job, the biggest pain is my glove (I don't have a gauntlet because my sucky fingers swell!) I work in healthcare, so have remove it for hand hygiene for patient contact!

ThinkingPositive

Do most people that have a ALND almost immediately see someone for Lymphodema? No one ever mentioned this to me including the Breast Surgeon. Nor did she ever mention PT. Not sure if this is something that you only do if you have a problem or should everyone who had a ALND be wearing a sleeve/glove and seeing a PT? None of my doctors seem to be giving me any information. I saw my plastic surgeon again and had a fill and expressed concern about the side of my body being a little swollen near where I had mastectomy and he said lymphedema is usually in the arm and it does not look like I have it there..as there is no swelling. I have full use of my arm. Not sure what I should be doing. He said if I wanted a prescription to see a PT to let him know. Not sure what I am supposed to be feeling as the tissue expanders are filled.. does it feel like swelling to anyone? Or could that be lymphodema in my breast area ?? Just feel like no one is taking care of me and just passing me along.

Chloesmom

Feel the same way Thinkingpos. They say it can start anytime. Not sure how you distinguish between a spot in arm pit that is truncal edema vs post surgical swelling. Got my arm moving well and my chest looks nice ans flat but it's not improving near the sentinel node spot.

BS said he'd give me a referral to PT if I didn't get shoulder range back. I called office and asked for an Rx for lymph edema. Went to APTA website and looked in link "find a PT" for one specializing in cancer. Found a LANA certified therapist 45 min away. I'm letting HER decide how much activity I can add and how to manage this swelling whatever it is. I have read that if a sleeve isn't perfect it can make you worse. Don't want to take a chance!

Need to go to one that specializes in this. Anyone can teach you shoulder range and stretches. BTW i didn't mention that I'm an experinced PT myself and am clueles.

daisylover

I think PT has been crucial in my recovery. Originally, I went to a PT in a center that had a Lymphedema clinic. That therapist just seemed to do regular ROM and strength building therapy with me. Helpful but not enough... Then, I found a specialist who does MLD through someone on BCO. It has helped immensely with the swelling in my side. If you can get a personal recommendation for a breast cancer specialist from someone in your area, that's the best thing. Getting MLD makes a huge difference in my comfort and feeling of well-being. No one really seams to diagnose truncal lymphedema... just when it's obvious in the arm. I did not have reconstruction to know how that feels. Hopefully someone with that experience will answer. PT, if covered by your insurance, seems worth trying. I pay for my current PT out of pocket but it is worth it. (She is out-of-network.) I just needed a prescription for general PT both times... No one really seams to diagnose truncal lymphedema or want to treat the swelling on your side... just when it's obvious in the arm. It seems like many try to avoid dealing with it. My surgeon at DF connected me with a prior patient (who speaks publicly about Lymphedema) instead of a medical professional...

ciaogina

morewenna--I'm guessing it is LE. Totally sucks!!!! I hate this! I feel like I can't do anything. I didn't ask for this & I know no one does, but why can't we just go through the cancer, chemo & surgery & be done w/it???? Wearing the sleeve & glove make me feel so self-conscious. It's not fair!!! Haven't we been through enough?

Morwenna

Well, yes it does suck. And I do get fed up with people asking "what have you done to your hand/arm, or even "where can I get a glove/sleeve like that?" (I usually say, oh I have some issues with my arm swelling, or, I had treatment for cancer, depending on how forthcoming I feel at that moment)

It's not the end of the world, but it does make it harder to "move on", as we are all told we should do!

But I look at the ladies here who are struggling with metastatic disease, and tell myself, suck it up, it could be worse!

maryna8

Hi, all.

Going to throw in my experiences. Had Rt. Mastectomy surgery in Feb. '14. Oncologist prescribed PT in September after chemo when I complained of arm pain. I also suffered a partial tear in my Rt. rotator cuff over the summer, and had the pain of carpal tunnel before any of this. I was having really bad pain in Sept. and couldn't really do the exercises. The PTherapist said I did not have lymphedema. A couple of months later I was still having a lot of shoulder pain, back pain and pain going down my arm. My GP ordered more PT and this time I am able to do it better, and I have less pain, but still have the shoulder pain and tightness and the pain down my arm and wrist pain with activity. I had to have some fluid drained from my surgery site last week, and someone told me that means a bigger risk of lymphedema. I am so confused at this point not sure what to think. My wrist hurt before, hurts worse now. My shoulder hurts from injury, but also have the tightness of the surgery scar, and some neuropathy from the chemo. I don't know how I will ever get the proper diagnosis. So far I have seen the GP, the MO, an orthopedic doc and a neurologist. None of them had answers, just offered drugs. I am going to ask my PTherapist to re-evaluate me for lymphedema and see what she says.

Just wondered if anyone identifies with any of this, or has any info.

Best wishes!

Mary

Chloesmom

PT measured my hand and arm on both sides today. Every 5 com. They were even so no lymphedema, but feel heavy from surgery. She said to find a landmark like freckle 1/2 way between wrist and elbow and likewise in upper arm. And measure those 2 places at intervals to see if the size fluctuates (assuming I don't lose it gain weight). Then you can see if it is lymphedema. She taught me how to massage the lymph areas myself EG when on an airplane. Very gentle like patting a kitten.

ciaogina

maryna8---yes--it's like a carpel tunnel pain for me too. Maybe it's nerve pain we are experiencing. My pt did take measurements and my onc., said no it's not LE. I was literally obsessing over it. But my PT, PS and onc are telling me to stop. It's just difficult to see my wrist not looking like it used to. They basically said this is your new normal, not LE. To wear the sleeve when I feel I need it, massage, and lift weights and to stop obsessing. It is hard to do since we are the ones living with it. I think it's the measurements that tell us if it's LE, so yes, I agree with Chloesmom, to take measurements and do the massage. I am confused though, as to how lifting weights is helpful, but lifting something heavy can trigger it.