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Lymphedema: Evolving Research Lifts Restrictions

Watch out for insect bites and sunburn.Don’t have blood drawn or blood pressure taken on the affected side.Wear loose-fitting jewelry.Don’t carry heavy bags of groceries.Which of the guidelines above was considered a risk reduction factor for lymphedema 10 years ago? Which is still regula...
3/18/08 3:37pm

Oh dear! Oh dear! The good news with the bad! How many more woes are in store for us women with breast cancer? I never thought cellulitis could be life threatenening.As for avoiding medical procedures,does that include breast reconstruction as well? Perhaps an electric razor or cream/spray would be best for removing underarm hair.PJ please help.

 

Yours dejectedly

Cressida

3/18/08 4:25pm
Oh, Cressida, don't despair! It sounds worse than it is... Of course you can still have medical procedures when necessary on your affected side; just be sure to tell whoever's doing it that you've had lymnph nodes removed or are at risk for lymphedema. Of course, if it's reconstruction, they'll KNOW that already! Cellulitis should only be life threatening if you do absolutely nothing about it. If you let it get so bad that your arm is swelled up like a balloon, and is red and hot, and you've got a raging fever. Please, I would hope you wouldn't mistreat yourself that way... I myself use an electric razor for shaving - I always have. And, I have/had lymphedema, and have had plenty of burns, cuts, scrapes, hangnails, etc., on my affected arem, with no ill effects. So, be sensible; but don't be afraid. Live your life with joy, not anxiety; at least that's my theory, and it's worked so far! Best wishes- PJH
3/19/08 5:49am

Arm exercise does make my lymphedema worse, but I've learned to wear my compression sleeve to the gym.  When I do that I don't have problems.  I have flare ups when i do too much repetitive activity with my affected hand or arm, which unfortunately includes typing, a big part of my job.  I've learned that it's much easier to prevent a swelling than get it back under control.  It's also important to see a certified lymphedema therapist.  There are so many advances in the field that regular PT's usually don't know the best techniques.  

 

To Cressida, I was worried when I had to have surgery on my affected arm, but it turned out fine.

 

Phyllis 

3/19/08 4:09pm
Thank you,PJH & Phyllis. It helps to know a bit more about whatever we are dealing with but it never helps to panic.I'm going to have my last chemo on April 3 & I guess I want to put everything behind me once I'm done with the radiotherapy.But that is being totally unrealistic. I do some light exercise to prevent lymphedema.
3/19/08 5:26pm

I was walking with a fellow Vixen who was carrying bags on both arms, and she told me that the new finding are exactly that: carry on!

You are the ROCK.

XO

Marisa 

3/19/08 5:42pm
Great advice, Vixen - let's all CARRY ON. Not as though nothing has happened - but as though NOTHING CAN STOP US. Certainly not fear. Not with all of us banded together. Confidence is powerful... - PJH
Anonymous
Anonymous
6/18/09 3:52pm

I did weight training 2x week B.C.(before cancer) having started - to wart off osteoporisis and found it very empowering; I stopped after bilateral mastectomy & lymth nodes removed on one side for fear of getting lymphodemia. I'm very encouraged by what I am reading and now plan on resuming. My question - should I get wrap or use compression bandages during lifting to minimize my risk, and can I gradually work back up to heavy weights?

6/18/09 5:39pm

Hi - I've been told to not work to exhaustion or pain when lifting weights; and to do more reps of lighter weights, rather than fewer of heavier. You might want to speak to someone in your hospital's physical therapy department about this; they should be able to help you. Good luck - PJH

Anonymous
Anonymous
6/19/09 10:04am

Do you think wearing a compression bandage when lifting weights will lessen risk ?

6/19/09 12:21pm

It couldn't hurt - but I couldn't say for sure if it'll help. PJH

Anonymous
Wisconsin Grammy
7/26/08 10:10pm

PJ, what advice do you have for patients who have had both breasts removed regarding blood draws and/or taking blood pressure?  I had sentinal lymph nodes removed on both sides.  That increases my risk for lymphedema to 40%.  Will I increase my risk even more every time I have one of these procedures done?  Should I offer my ankle?! 

7/27/08 6:43am

Gosh, I really don't know... if you just had sentinel node, and no further nodes out, you really should be OK using your arms for blood pressure/blood draws. If you had more, then yeah, you might want to ask them to take it somewhere else, but as for blood pressure, I think you have to use your arm. Either one of those, though, isn't a HUGE risk; there's more problem with things like repetitive motion, or working to exhaustion. Best advice would be to talk to someone - physical therapist who's a lymphedema specialist, preferably - who REALLY knows the answer for women wuch as yourself with a bi-mastectomy. Good luck - hope you don't get it - though if you do, well, you deal with it, just like the rest of this stuff we deal with, eh? Mine comes and goes... but it's usually not an issue. Cheers! PJH

Anonymous
Bonnie
4/23/09 3:51pm
Hello, PJ, I see this article was posted some time ago, so this will be of no help to the woman who asked about it, but perhaps it will help others. I had bilateral mastectomies, one with only a single node removed and one prophylactic, and developed lymphedema on both sides (arms and trunk), so I'm a firm believer in taking precautions against lymphedema after any breast cancer surgery. Being bilateral, that means blood draws and IVs in the foot, injections in the thigh or hip, and blood pressure taken on the thigh or lower leg. For blood tests, have your doctor write "Draw from foot only" on the lab order sheet. For IVs needed for tests, be sure to call ahead and request that someone be there who is capable of doing it. For IVs during surgery, request that the anesthisiologist do it -- they're good at it! For regular blood pressure checks on your leg, check with your local fire department as to whether the EMTs there can do it for you on a regular basis so you'll have a record -- blood pressure taken from the leg runs higher, so you will need to establish your own baseline in order to know if it's trending up or down. None of this is easy, but if it prevents or postpones lymphedema, it's well worth being proactive. Cassie
4/23/09 6:27pm

Thanks so much, Cassie. Advice well worth reading and following. Appreciate you adding your wisdom here - PJH

Anonymous
Whadya do to your arm?!
5/25/09 3:30pm

Thanks for the tips regarding Lymphedema.  I have Lymphedema in my dominant arm/hand because of the need to remove many, many lymph nodes during my mastectomy.  It was scary at first, now I'd say it is more annoying than traumatic.  I wear compression class 2 sleeves, class 3 gloves and class 2 gauntlets AT ALL TIMES (except showering or sleeping--which I do in my trusy blue Reid Sleeve).  As a middle school teacher, I wasn't sure what to expect, but three years and counting (yeah!), the kids are great.  Manual lymph drainage, as well as laser therapy has helped through my Lymphedema Specialist.  Here in Florida, the heat is probably the hardest part of wearing compression garments.  I'm toying with the idea of the Lymphediva fashion sleeves...but, I am still looking for fashions that I can wear that are loose-fitting, light-weight and not low-cut (port scar & bra inserts tend to be noticeable in low cut tops.  Ideas?

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