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Lymphedema Pain in Arm Pit....

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

The pain goes down my arm and into my hand. It is on the same side I had 12 lymph nodes removed. Finished with all my treatments, chemo and rads. I am thinking it is lymphedema, but the dr did a scan and ultra-sound to check it out. I didn't have this much pain after my bilateral mastectomy! I can't raise my arm above my shoulder without it being so painful. He also said that it could be the cancer has returned in what is left of those nodes. Anyone else with this experience? Marianne

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

I had only sentinal node biopsy, two nodes removed with no cancer. Earlier this week in the shower I noticed a tender and hard "cord" from the area of the scar to just above my elbow. It's not so much painful, but it is tender - and hard. What the? And who should I report it to? I don't see medical oncologist until the 28th, but I do see radiation oncologist on the 8th. Is this something to worry about?

Suzanne

Wolfi's picture
Wolfi
Posts: 425
Joined: Aug 2009

Wow - when I read these posts I thought "Hmmm...sounds like what I've been dealing with lately".

I have mild lymphodema which I'm dealing with but in the past week or so I have had terrible pain in my arm from my arm pit to my wrist. The arm is tender to the touch and hurts a lot if I try to staighten it out.

I am thinking I may have just lifted something wrong and pulled a muscle but I can't think of anything I did that would have caused it. I thought about calling my GP about it but I see my onco next Wednesday so I'll mention it to him then.

I hope all of your problems (and mine) turn out to be nothing.

Wolfi

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Mariannemm - I only had the sentinel nodes removed on each side, not 12. But I know it is possible to get lymphedema even if you only have a simple masectomy with no node removal. I had to beg my doctor for him to refer me to see a lymphedema specialist. The swelling was 'only' in my fingers and I have skinny fingers and everyone seemed to sluff it off. I had pain in my fingers that felt like when you get a busted blood vessel, I had pain in my elbow, in my armpit, in my left breast and all along the left side of my torso.

I saw the specialist for six weeks and she taught me how to do the lymphedema massage, exercises I could do and she massaged that area to break up the scar tissue and tight fascia. A lot of my pain was from scar tissue and the tight fascia. They don't tell you this stuff when you get the MX all the potential other problems you can have! It HURT, but I can tell you that I am not in pain anymore. My doctor did do an ultrasound before he referred me to the specialist just to make sure I didn't have any blood clots.

How long has it been since you finished radiation and chemo? If he think it's metz. he better order some scans to rule that out! That would make me angry if he only mentioned it and then isn't going to do anything to rule that out! Grrrr. Doctors so often lack in the compassion and sensitivity department, don't they?

Bottom line, yes, it can be lymphedema. I would definitely get a PET scan or other scan to rule out metz. since your doctor mentioned it. If not, he can refer you to a physical therapist who can work wonders with the pain and mobility issue or an occupational therapist who specializes in lymphedema.

Doublewhammy, the same goes for you. Even if it isn't lymphedema, a PT or an OT can REALLY help with the pain. You don't have to live like this!

Best of luck, ladies. Don't live in pain. Keep pestering the docs until they give you a referral.

Much Love,
dh

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

I had lumpectomy and sentinel node biopsy 5/12/10, in the left side. I had radiation 2x day for 5 days starting 6/28/10. I complained to my surgeon a couple of days after my surgery 5/12 that I couldn't straighten out my hand without a sharp pain in my middle finger. The surgeon explained that the nerves 'get angry' when they are moved, and the pain was from that. By the time I finished my week of radiation, and had my arm over my head 2x/day, I couldn't bring my arm back down. My radiation onco referred me to the lymphedema specialist. I only had one lymph node removed, but I'm still experiencing pain and some swelling. It did get better after my first PT visits, but came back after a couple of weeks of stopping. I am going to be fitted for a compression sleeve next week.

My left shoulder aches like crazy, esp now that the weather is changing. My fingers feel like they are going to sleep if I hold them a certain way (like for typing). My node incision will ache if I have the wrong kind of bra on, and the wire gets too close. If I get worked up or anxious, and my heart beats fast, my lumpectomy incision will ache. I have a definite loss in range of motion that we are trying to work back up to.

My fingers (esp my thumb) are very swollen in the morning. I can't see the veins in my left wrist anymore. That is a sign, my therapist said. My left side was smaller than my right, now it's bigger. Not by a lot, but just enough that I can't wear my bracelets, and my skin feels tight.

This is all from one lymph node removed. I've found that anything is possible, and likely, after this experience. Don't let them brush you off. I feel like my surgeon did, but luckily my rad onco got right on it. She said it was better to catch it early.

Take care and good luck! <3

Rague
Posts: 3282
Joined: Aug 2009

If you're waking up with swelling you might should ask your Lymphademologist about measuring for and getting a night sleeve. They are different than day sleeves and gloves in how they work - I don't understand how they're different but my Lymphademologist insists they do. The one I have is definately bulkier han my day sleeves/gloves.

From my experiences (and according to my Lymphe-guy) it can take a while to find the right compression as they come in different 'strengths'. For me, the 'heavy' causes more swelling while the lightest compression works best. They can be gotten in standard sizes or custom made and there are several different companies that have/make them.

New Flower
Posts: 3947
Joined: Aug 2009

Sorry for your pain. The good news is your oncologist has been checking it out. Ultrasound and Mamo should rule out cancer. I wish your doctor is wrong and I am surprised that he/she made conclusions without test results.
Lymphedema can worsen at any time. You just finished radiation that was a huge stress on lymphatic system Do not forget that armpit was radiated as well. I do not feel well tonight, please write PM I can share more detail about my case. My lymphedema has been going dawn with introduction of any new treatments. Oncologist always brush it off. You need ask your breast surgeon for reference.
I had 21 removed 10 positive. I do not have serious swelling but it has been very painful.
Hugs from lymphedema veteran,
New Flower

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

I had 22 nodes removed in June of 09. I had a lumpectomy. I have arm pain that is like a burning pain. It's not lymphedema. I was told it is nerve damage. There is parts of my arm that I have no feeling. The pain is under the arm pit and the burning is down the back of my arm. I also can not raise my arm above my head with out some pain. I hope your doctor is wrong about the cancer returning. Keep us posted.

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

It is so nice to know I am not alone! My dr hasn't said for sure what he thinks it is, that is why he had me do the nuclear CT Scan yesterday and the ultra-sound is on Monday. He said there are so many things it could be, but that these tests will give us a clear answer and a direction to go next. I have been done with rads for a month and I finished chemo at the end of June. I want this to all be done! I also have these weird marks on the arm that hurts, it looks like impressions from leaning on something but I haven't or really long and narrow dipples. They go from my upper arm to my elbow. Marianne

seof
Posts: 826
Joined: Jun 2007

I chemo, double mastectomy with expanders, radiation, chemo, reconstruction. I had 7 nodes out on the right side (Left side was preventative). 1st surgery was summer 2008, reconstruction Christmas 2009. I had some tingling and slight swelling after 1st surgery, went away. I had tightness under the arm (like wearing clothes with tight armholes) off and on. Doing excersizes would help. After the second surgery it has been better, but even now the right muscles under the right arm are tighter than the left. I can move it as much as I want to (I'm no athlete, so that's not a huge amount). When it gets stiff, I excersize it gently (do more raising it over the head, walking my fingers up the wall, etc) several times a day, and it gets better. I do wonder why it doesn't stay better, but it does not bother me enough to go to a physical therapist. I expect a PT who specializes in cancer survivors could help you with massage/excersize techniques that would relieve pain regardless of the cause. I would surely ask for a referral and check with your insurance to see if they would cover it as part of the cancer treatment.

Best wishes, seof

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