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Old 07-25-2007, 12:46 PM   #1
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penybobeny HB User
Question Lymphedema

First, I appologise for posting here, I do not have BC, but I cannot find where else to post on this question and this is a condition sometimes associated with post-op BC patients.

I have what appears to be lymphedema in both upper arms and my entire left arm (my left arm and right arm look like the belong on two different people... and have looked that way for years)

I have pointed out to just about every Dr I see that my left arm is bigger (6cm below shoulder, 3cm below elbow and 2cm at wrist and palm, my knuckles actually dimple in on my left hand) and it is a firm swelling, it used to swell and be soft and sometimes go away, but now it seems to be getting harder. When I show it to a Dr they just say "hmm, that is unusual" then forget about it. I can no longer straighten my left arm completely and decided to do my own hunt for answers and came across lymphedema.

My question is... what kind of Dr do you see for this?
What can I do at home to try to make it more comfortable and useful?

Thanks for any help.
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Old 07-25-2007, 02:08 PM   #2
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Re: Lymphedema

I dont have the answer for you but wondered if you looked on an American Cancer Society site or just internet searched, "lymphadema" on ****** or dogpile or soemthing like that.

I was warned about lymphadema if they had to take out more lymph nodes but they did not.

I would wonder about a doctor that would just say, "hmmmm...........interesting!", when obviously there are discomfort and health issues.

 
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Old 07-25-2007, 04:18 PM   #3
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Re: Lymphedema

hi peny, from what i know about lymphedema, anyone can get it when there have been nodes removed..have you had some kind of surgery where nodes were removed?
there are people who specialize in lymphedema treatment..that is who I would seek out if it happened to me. I have had 32 nodes remove because of breast cancer, I am at a high risk for developing this..it can be caused by tight clothing, bug bites, burns..etc when the body is signaled there is an infection..I too would contact the american cancer society, and ask them who in your area is trained in treating lymphedema..
best wishes to you,
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Old 07-25-2007, 11:07 PM   #4
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Re: Lymphedema

Thank you for your responses... I have not had any lymph nodes removed, but have had severe infections in lymph nodes themselves that ended up either bursting on their own or being lanced.

I will contact the American Cancer Society and request the information from them.

Again, thanks!
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Old 07-26-2007, 01:09 AM   #5
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Re: Lymphedema

Quote:
Originally Posted by penybobeny View Post
First, I appologise for posting here, I do not have BC, but I cannot find where else to post on this question and this is a condition sometimes associated with post-op BC patients.

I have what appears to be lymphedema in both upper arms and my entire left arm (my left arm and right arm look like the belong on two different people... and have looked that way for years)

I have pointed out to just about every Dr I see that my left arm is bigger (6cm below shoulder, 3cm below elbow and 2cm at wrist and palm, my knuckles actually dimple in on my left hand) and it is a firm swelling, it used to swell and be soft and sometimes go away, but now it seems to be getting harder. When I show it to a Dr they just say "hmm, that is unusual" then forget about it. I can no longer straighten my left arm completely and decided to do my own hunt for answers and came across lymphedema.

My question is... what kind of Dr do you see for this?
What can I do at home to try to make it more comfortable and useful?

Thanks for any help.
hi. i have lymphedema in my leg. all they say is get support stockings. but my leg is now getting very painful. i have had alot of tests and they have found nothing. i would say a vascular dr. u should go to. i just went to one. i got a few tests and i dont know what the results are but the lady that did it (doppler on my leg for veins and arteries) said it looks pretty normal to me. grrr good luck in your search...

 
Old 07-26-2007, 02:46 PM   #6
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Re: Lymphedema

I have lymphedema although I only had eight nodes removed during bi-lateral mastectomies--7 on left, only the sentinel on the right. I had read all the literature and followed all of the recommendations to a T. It didn't keep me from having lymphedema. Mine is not as severe as some people get, but it is uncomfortable and sometimes painful.

Both my surgeon and my oncology said that lymphedema used to be more common but they're not as concerned about it nowadays since it's pretty rare. Well, I don't think it's as rare as they seem to think!

I made enough noise that my oncologist finally referred me for therapy for lymphedema assessment and treatment, if needed. It wasn't easy to get him to take my complaints about swelling, numbness, pain, nerve sensistivity seriously although I started bringing it to his attention early on. He seemed to think that it was just part of the healing process and would eventually get better. After 6 months it wasn't better. I finally asked him point blank if there is some kind of physical therapy that would help relieve muscle soreness, numbness, swelling and nerve pain in my upper chest and arms.

Assessment resulted in a diagnosis of lymphydema and a recommendation for therapy. The therapist specializes in treating lymphdema. I have been seeing her 2 x week for the past 3 weeks and the swelling and associated discomfort is improving. The nerve pain and numbness are another story--it's not part of the lympedema. I am now able to wear a bra and prosthesis all day long which is something I couldn't stand to do before. The bra hurt like heck before; and I was ready to tear it off after a couple of hours. The lymphydema doesn't ever go away--it just gets less or more comfortable from day to day. I have been instructed in a home program which has to be performed daily for the rest of my life. Also, I wear a compression sleeve on my left arm during the day while I'm active.

Be aware that the compression sleeve (or stockings, if the problem is in the legs) is not a cure nor is it even a treatment. The value to the sleeve is that it prevents the lymph from backing up in the arm instead of following the new pathway that it is supposed to follow. It provides some comfort while engaged in activities that would otherwise aggravate the arm--i.e., driving, golfing, typing, etc., etc.

It was explained to me, in terms I can understand, that the lymph drainage path in my upper chest and arms was distrubed by the surgery and by the node removal. The lymph gets dammed up which causes the swelling--that, in turn, can cause pain. If there's a lot of blockage, an affected area can get hard. This is referred to as "secondary" lymphedema. The therapy for this consists of redirecting the lymph from the affected areas onto new pathways so it can flow to where it needs to go. Your infected and/or burst nodes sound suspicious for lymphedema.

But, (wait there's more!!!) there's such a thing as "primary" lymphedema. I haven't taken time to learn anything about it because my problem is the secondary lymphedema--I tend to approach things on a "need to know" basis. You might want to investigate that also. I do not know how the "primary" is treated. My point is: you don't have to have node removal to have lymphedema, and it is not exclusive to breast surgery. Shaa47 has it in her legs--long way from the breasts!!

I don't really know what type of doctor you should see. Unfortunately, you almost always have to have a prescription for physical therapy of any kind; so you have to start somewhere. But, you could get that kind of referral and prescription from your family doctor or your gynecologist, I would think. When talking to the doctor, use the word "lymphedema"--and use it often. Don't ask the doctor what's wrong with your arms, tell her what's wrong. As with any other serious health issue, you have to be your own advocate.

Please keep us posted on what you figure out for yourself.

JRG

 
Old 07-27-2007, 03:25 AM   #7
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Jezzie25 HB User
Re: Lymphedema

I went to therapy because I becam obsessed with the thought that I might get it...I just had such strange feelings in my arm. My arm was measured and I got a sleeve. I was shown some exercises to do..... later I went to water aerobics at the university hospital and we did them there.(This hospital is not where I went at first.) I still do those exercises. I am sure most therapy clinics have certain exercises for lymph. Good luck

 
Old 07-27-2007, 09:11 AM   #8
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Re: Lymphedema

My thereapist says the she would like to get bc surgery patients two weeks after surgery, if that were possible. She says the earlier you get treatment, the better the results. Jezzie25, you were on the right track!!

jgore

 
Old 07-27-2007, 08:47 PM   #9
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penybobeny HB User
Re: Lymphedema

I found out that the Physical Therapist my husband sees (he goes to a different place than I) is a Lymphedema Specialist... so I might have a place to go soon.

I bullied my Dr a bit and let him 'discover' the obvious (he took my BP on both arms today... the cuff barely fit around my left arm and was too big for my right... ammmaaazzzzing) and now I am going for vascular studies and some dopplar... I will keep you informed as to what comes from it.

Thanks for all the replies... oh, a stupid question... the sleeves... are they Latex Free?
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Old 07-28-2007, 04:14 AM   #10
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Re: Lymphedema

Hello Peny

I just happened by this post, but may be able to offer what the lymphodema trapist can do. I have lymphodema severly in my leg as the result f cancer surgery where many lymph nodes were removed. The swelling goes from thigh to toes.

I had a total evaluation done by a therapist at a rehab who is a certified specialist in lymphodema. we are both fortuante to find these therapists because they are not a dime a dozen in their speciality and must take many hours of additional courses to get the certification.

She took about 12 comparison measurements between my two legs and recorded them. She explained that it would take eight weeks of daily massage and special exercises and then a remeasuring of all comparison points would be made. At that point, another 4-6 weeks of very specific massage and exercise on particular points would be made. When it was determined that the leg was as least swollen as possible, a garment maker would come in and measure for a compression hose for the bad leg only. That garment was then to be worn 24-7. ( Insurance would pay for one, I would have to pay the cost for a second one so I could wash one, wear one).

I thought long and hard about it. I decided not to go the course at this point because in thinking honestly within myself, I knew I could never follow through on weraring that garment all day, let alone all night, especially in warm weather. I do need to let you know that I think the garment would be a wonderful help. For me, however, the surgery for the cancer was extensive and a muscle had to be turned from my chest and stomach down into the leg to save it, It has left me with a large bulge in the groin area and infection sets in easily when the area is squished even if I wear panty hose for a short while like to a wedding or something. Otherwise, I would have gone for it.

Also, when my leg has become infected with cellulitis from the swelling, my doctor always hospitalizes me. I am put on an antibiotic drip and the leg is raised by in the bed and held up like that for at least three days. The swelling comes down, the antibiotics do their job and I am good to go until it crops up again. If your arm develops cellulitis, I would question why the doctor is not doing the same for you. Cellulitis is a common thing when dealing with lymphodema and should not be left untreated lest the infection spreads throughout the body. Oral antibiotics are not as effective and the affected body part truly needs to be steadily elevated to help reduce the swelling.

If my leg is swelling badly, as it often does, I work to prevent cellulitis from developing by resting in bed with the leg up on 3 pillows and icing it. It is a pain in the neck, quite frankly, but does bring relief and avoids infection setting in.

Good luck with everything. Get a script to see that therapist! I would also contact my insurance company and simply ask them to refer you to a doctor who is experienced in treating lymphodema. Many oncologists are certified in more areas in than one and see patients for things other than cancer. You might also want to contact a reputable oncologist's office and ask if there is a doctor in the group who can help you.

Good wishes. Lymphodema is a tedious and ongoing condition that does need to be addressed.

reachout+

 
Old 07-28-2007, 11:51 PM   #11
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Re: Lymphedema

reachout-

Thank you for the reply.

My infections (lymphnodes that have become infected then burst or have been lanced) have occured since around 1989 (I remember the year because I was pregnant with my daughter when the first one happened under my left arm at the armpit) though I did have one under my jaw at age three that they called 'cat scratch fever' and lanced.

Since then I get them about three times a year under both arms and in my groin (painful lumps that grow to about the size of a wallnut then burst or get lanced) and this spring had my first one behind my left ear... ugh!

I have a strangly compromised immune system... I do not run fevers and my white blood count does not elevate no matter how bad the infection. (In 1996 I had PID with a rupture and 3rd degree peritonitis... there is even a name for the condition when the infection circulates around the abdominal cavity but I have forgotten it... anyway, my tempature never went above normal and my white blood count was well within normal range... as for pain, I thought I had severe heartburn! The ER was about to send me home when they decided to do an ultrasound and the tech noticed a large mass and alot of free fluid... the mass was the ruptured falopein tube and the fluid... ugh... well, they opened me up and were in shock.)

Any time I get cellulitis or an infected lymph node they put me on z-pack and tell me to apply warm compressess until it bursts... thats it.

BTW, I agree with the idea of wearing a sleeve in hot weather... it will probably drive me nuts!
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