Question on lymphedema risks

Leydi

I've been reading about lympedema risk factors and precautions. I'm a little annoyed that most of the advice is to use your "unaffected" side since that won't apply to me. My main question, however, is the following:

Are the precautions against cuts, punctures, etc. because: 1) an infection is more likely; 2) an infection has more severe consequences; or 3) both.

Like most people, I've had more minor injuries to my hands and arms than I could count . . .and none of them have ever gotten infected. Will that suddenly change after BC surgery?

doxie

The answer is #3.

The risk of LE is real and most of your doctors will minimize it. Mine is more truncal than in my arm. It has gone dormant as my breast and axilla have healed from radiation and surgery. My RO was willing to accept the blame.

I'm a klutz and seem to get cuts, scrapes, burns, and cat scratches all the time. I also had surgery for trigger thumb. Except for an infection around the stitches, which I also had after nipple reconstruction, I've not had any problems with my mishaps. I count myself lucky that I've a strong immune system. I'm slow to or forget to apply antibiotic ointment. I know others have not been so lucky.

exbrnxgrl

Don't forget cellulitis risks as well

SusanSnowFlake

I'm assuming that you don't have LE, in that case the precautions are what is known to possibly help but not completely effective. There's limited info. I had only 1 node removed I was fit, not over weight, and followed all of the recommendations according to my RO I had little to no chance of developing LE, but I did develop LE. There are woman that have multiple nodes removed, are over weight, sleep on their sides etc who never develop LE.

Small cuts will not hasten or cause the development of LE. If you have LE even a small cut can bring on a serious illness, cellulitis, but that seems rather random. People on this board have had serious burns and cuts and have not experienced cellulitis and others can't shake it. Like doxie, I've had cuts, scrapes and some pretty bad cat scratches but did not experience an increase in swelling or cellulitis. There is a new study that says it's Ok to get needle sticks after BC on the effected sides if you don't have LE but I would avoid it if at all possible.

If you have LE and even if you don't it is a good idea to treat cuts and small punctures as soon as possible by cleaning and using some kind of antibiotic cream. Avoid poison Ivy and insect bites but that, again, is kind of standard for most everyone.

I hope if you don't have LE that you don't develop it, but if you do, just know this, it is manageable.

SummerAngel

SusanSnowFlake, your RO mislead you. Radiation is a known risk factor for developing Lymphedema.

Leydi, I don't have a "good side", either. I was lucky enough to have no risk factors and have had no issues at all. I started off being careful about my arms but gave that up long ago. If I had any of the known risk factors (many nodes removed, overweight, radiation, cellulitus) I would continue to be careful, but I don't so I'm taking the risk.

Binney4

But SummerAngel, isn't avoiding cellulitis (which is, as you note, a lymphedema risk factor) one of the points of risk reduction practices?

Leydi, whenever the lymph system has been compromised (as it has for all of us who have been treated for breast cancer) there can be considerable lymph fluid buildup in the tissues before there is any obvious, measurable swelling. It's called Stage 0, or pre-cliinical, lymphedema. It predisposes us to serious infection from any skin break--even paper cuts or insect bites--which is why your Point 1 is a factor. Point 2 is also a factor because even if you aren't dealing with preclinical lymphedema, if you should develop an infection, that itself could trigger lymphedema because it can overtax the already-compromised lymph system. Repeated insults to the lymph system can also accumulate and trigger lymphedema--some of the women who have posted here have developed lymphedema a couple of decades after their BC treatment. It never stops being a risk.

As for "will that suddenly change after BC surgery?" as SummerAngel points out: not necessarily! Some of us have a more robust lymphatic system than others (though there's no simple way to determine who ahead of time). Like her, I had zero "risk factors," but I did develop lymphedema, possibly because my own lymph system may not have been of the robust sort. Or possibly because we really don't know what all the risk factors are.

Best bet is to ask for a referral from any of your doctors to a well-qualified lymphedema therapist, preferably before surgery. S/he can take baseline arm measurements for future reference and offer personalized risk-reduction suggestions. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

Hoping you never have to join our "swell" sisterhood!
Binney

Leydi

Thank you, everyone. Binney4 - your explanation especially helped me to understand how stage 0 comes into play with these issues. I'm still awaiting surgery but know that I will have ALND on at least one side and at least a SNB on the other side in addition to BMX. I'd rather know the risk factors as well as anything that can minimize the risk even though I understand that many women do everything right and still have lymphedema.

I just searched on lymphnet and there are no MLD treatment centers or therapists within 60 miles of my location. I'm hardly in the middle of nowhere!

Binney4

Lymphnet only includes therapist who have PAID to be listed! Try these instead:

http://www.nortonschool.com/therapistreferrals_for...

http://www.vodderschool.com/contacts/therapist

http://klosetraining.com/therapist-directory/

http://www.acols.com/find-therapist

The first in Norton School's list, the second is Vodder, the third is Klose, and the last in Academy of Lymphatic Studies--all good schools for therapists. Keep us posted on what you discover!

Gentle hugs,
Binney

Cinnamon68

Does anyone have any advice on getting the full lymph node removal when only one lymph node was taken out the sentinel and yes it has cancer but this STUDY is making me wonder if I need to have all them taken out and it I don't I would just do radiation and hormonal therapy. And if not and I get the all the lymph nodes taken out and they say there is more cancer the oncologist will want me to get CHEMO and all the rest of it RAD/HORM Therapy as well.

My surgeon her specialty is breast and melanoma cancer she does hundreds a year, surgery that is on the breasts. And my chemical oncologist the one prescribing CHEMO and Hormonal Therapy well they both have discussed the lymph node and they both want me to have the full removal of lymph nodes -ALN. Which can and most likely cause lymphadema and I'm not sure what to do after reading this study. I don't want to get the surgery if the radiation will kill the cancer and keep it a bay but on the other hand I don't want to not get it if there is more cancer and the radiation doesn't do enough and I back to square prolonging treatment and possibly causing myself more problems and possible lowering my survival rate.

So I'm just confused with this study the Z11 done in 2011 can anyone tell me the chances of the lymph nodes having more cancer if they are higher compared to not having anymore cancer invading the lymph nodes when one is found to have cancer?

I don't want to take a chance and don't get the right treatment plan but the treatment plans can be so scary and a bit much. It just seems like things have to get worse before they get better in order to KILL this EVIL WEED THAT WON'T STOP GROWING UNLESS YOU CUT IT OUT AND DOUSE IT WITH CHEMICALS!!

I suffer with depression and anxiety and OCD and I was in the hospital 2x prior to being diagnosed and now this. This has truly been the worse year of my life. I cry a lot and I'm angry and I want to go back in time and make all this GO AWAY and get a do over!!

I'm usually an up beat fun person, I'm a LEO, I'm the party starter and I love to dance and have fun, love music, people and children are drawn to me, I always get them dancing!. And animals we go to ZOOS, I've been to 19 different zoos in the USA our goal is to go to all the ZOOS in the USA. And we've gone to a lot of State Fairs we've been to IOWA STATE FAIR, WISCONSIN STATE FAIR this one we go to every year, MINNESOTA STATE FAIR this one we've gone to 2 years in a row and wanted to go to it this year but not sure about this year, OHIO STATE and Milwaukee Summerfest we go to every year. But this year we haven't done as much as we usually would because of all of this and I'm just not into it. My relationship has gone through a lot this year it's been very hard on my man, I'm surprised he still wants me in his life. We've been together for 13 years, not married but we are in my eyes. But with the hospital stays 2x for my mental problems and my body beating me up the RA/Lupus that has taken its toll at times and now CANCER it's been a rough road lately.

I was diagnosed with Rheumatoid Arthritis/Lupus and Ulcerative Colitis and other auto immune diseases that come in and out of my life. And I've had RA/ Lupus since I was 13 yr old and we think that I most likely got it through a viral infection when I was around 8 or 9 years old. So pain has been a part of my life and that's mental as well a physical and I not sure if my small body will tolerate the chemicals they want to pour in to chest. I've been on METHOTREXATE and I had to have it adjusted due to having severe reactions to it being to high of a dose. I'm more scared of the treatment plans then the surgery!!! I'm so scared and sad.

Most who know me aren't used to seeing me like this and its almost like they expect me to snap out of it and make myself be happy and positive or else it will kill me they say. Most don't know what to do but say, stay positive, eat healthy, find something to make yourself happy and this is all nice and most likely right but not always as easy to do at times.