Lymphedema possible 9 months out??

Manu14

I had a lumpectomy almost nine months ago with four lymph nodes removed. My RO said that with that few being removed I probably wouldn't have any problems; so I never bothered to read anything about it.

Yesterday I spent a lot of time carrying and lifting a 20 month old toddler as well as doing some gardening. Now today my underarm near the SN biopsy scar is very tender; my elbow aches and I can't remove the ring on my finger because it is somewhat puffy.

Could this be lymphedema or maybe just an overuse of the arm? I'm hoping that a few days of babying the arm will return it to normal. Any thoughts?

hugz4u

Your RO is so wrong and uneducated like most docs about LE. Glad you found us here though. Go to stepup-speakout.org It is a website our girls made on LE. It will answer all your questions and if you are stuck keep asking here.

On that site you can find a qualified Lymphedema therapist in your state. Go and see them for an evaluation and a measurement of your arm. They will tell you if you have LE and they are the only ones that know how to drain your arm properly by doing MLD. Try and carefully remove the ring and leave off for the time being. You may have just overused arm but the swollen hand/finger makes me think otherwise.

Dont carry anything heavy like that until you get evaluated. Drink tons of water incase you do have LE, It helps move the fluid, Raise arm directly over your head and pump your fist slowly thruout the day if you can.(20-25 times) Elevate the arm about heart perhaps on pilllows but only if it is comfy.

We are here to help you.

You can get LE from one node gone.

Manu14

hugz4u: Thank you SO much for all your tips and the website suggestion. I'm going to immediately try some of the things and take some time to search around on the stepup site.

Neither the surgeon or MO ever mentioned lymphedema along the way; and as I said, the RO really didn't think it would be an issue for me. If it does turn out to be something I have to deal with, at least now I have a good source of support. 

glennie19

I had only 6 removed and was told that it was unlikely I would have problems.  And,, well,, here I am,,,

There is lots of good advice here and it has been very helpful !

LymphActivist

It only takes removal of one lymph node to disrupt lymphatic drainage of the breast, axilla or arm. See the lymphatic drain sketches by Suami at http://www.lymphactivist.org/breast_lymphedema-1....

The onset of
lymphedema after surgical breast cancer treatment may not occur until 7 months
(range 1 to 37 months). After a combination of surgery and radiotherapy, the
onset of lymphedema may be a longer 12 months (range 1 to 52 months), and for
radiotherapy only, 25 months (range 6 to 156 months). [Pierquin B,
Mazeron J-J, Glaubiger D. Conservative treatment of breast cancer in Europe: Report
of the Groupe Européen de Curiethérapie. Radiother Oncol. 1986;6:187-198.]

I heartedly agree with the previous advice you have gotten. Find a physician who understands lymphedema, and get an immediate referral to a qualified lymphedema therapist.

Binney4

Manu, I believe the figures LymphActivist is quoting are strictly for the women who were included in the single study he cited, so while they're representative they're a long way from being inclusive. There is no limitation on when lymphedema can show up after breast cancer treatment. I think the longest we've had here was a woman who was 23 years out from treatment when it appeared. Others have had it from the time of surgery, and many others during or shortly after rads. Experience tells us that heavy lifting, especially if it's an unusual activity for you, can trigger it, but so can many other things.

What all of us here are hoping for you is that this is just normal strain, and with some rest and time all will be well. Best to check it out, though, and if it does turn out to be lymphedema, please know we're all here for you. Tell us how we can help!

Gentle hugs,
Binney

Kicks

There are no 'hard amd fast' rules that apply.  For some, sooner - for some, later - for some, never.  It is possible to develope LE after ANY surgery (or traumatic injury) even if no lymph nodes are removed.  I have a friend who had minor, non-invasive kmee surgery amd developed quite severe LE.

In my case, mine presented about 9 weeks post surgery while about 1/2 way through 12 weekly Taxol.  Had had no rads yet.

Manu14

Thanks everyone for your insights and own experiences. Today my symptoms are somewhat better after resting it more and elevating it plus drinking lots of water as was suggested. It's still not normal though. I don't have another check-up for a month so I may call the office this next week to see what they think.

Binney4

Manu, if it is lymphedema, the quicker you get help the easier it will be to manage going forward, so by all means get a referral started this week.

Here are suggestions of what to do while waiting for an appointment:

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

Gentle hugs,
Binney

Anonymous

LymphActivist:

Wait, am I reading your post correctly?  If I'm 9 years post surgery I no longer have to every worry about lymphedema? I was told (very causally) that I should never use the arm on the side of the surgery for blood pressure or blood draws, IVs.  Am I incorrect?

Binney4

Whatnow, the study LymphActivist is quoting from was not even a "study" in the sense we think of, but the summary of some discussions about surgical interventions for breast cancer that took place almost 30 years ago (1986) in Europe. Thankfully, since that time there has been what many researchers call a "Renaissance of lymphatic research," and we have much better data now. Not enough, for sure, but we're making progress! (And consider: the bc survival rates--and therefore the long-term side-effect rates--have risen considerably over the past 30 years, so a report this old is virtually meaningless.)

What this "study" lacks (and what we still lack) is a universally-accepted diagnostic standard for identifying lymphedema, so every LE study we read must be considered based on their own particular definition of the condition. Drawing conclusions across studies, or even across reporting institutions as this article does, is therefore tricky and definitely subject to question.

So short answer: yes, you're still at risk, though most patients who develop lymphedema do so within a couple of years of their bc treatment. There is, unfortunately, no way of knowing WHO is at most risk, though there is some evidence in recent research in the UK (Stanton, et.al.) that some of us are born with more robust lymph systems that resist the development of lymphedema, while others of us have…well, we have lymphedema!

There is better research currently available indicating risk statistics by time out from treatment. It does not show any time that is risk free. Hope that helps, because it's certainly important to know our risk and decide for ourselves how we will deal with that on-going.

Thanks for asking! Hugs,
Binney

kira66715

One of the best actual studies followed women with ALND for 20 years and found that while most developed it during the first few years, there was an additional 1%/year so that 20 years out, the incidence =50%

Also, Jane Armer has been following women for over 10 years and she recently told me that the new onset has dropped at this point, but continues to happen, so she doesn't bring all the women in for measurements, but gets in contact with them once a year now, and brings in those with symptoms.

The risk is lifelong.

Bob, you should know better than to put false information out there! You've helped a lot of people, but as we all know, scientific studies require close reading to check their validity, and conclusions are often drawn in abstracts that are not supported by the studies. And medical facts that we "know" to be true, are often disproven win subsequent well designed studies.

I suggest this article as mandatory reading about the conclusions one can draw from the evidence:" The Truth Wears Off"

http://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer?currentPage=allhttp://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer?currentPage=all

Currently those of us who deliver health care are reconsidering our use of statin drugs. I've been in health care long enough to see the pendulum swing and absolute truths become myths. 

We've all seen the NCCN guidelines change. And this impacts all of us who have actually had cancer.

BoobsinaBox

Kira,

I haven't been around here much lately, so I just saw the article you posted the URL for. Very interesting, and helpful. I particularly appreciate the closing sentences. And I appreciate your reference to statins. 

Dawn

Amoc1973

Mine started 6 months past surgery. I regret not being more aggressive early on. See a LE therapist ASAP. If it is LE there is a chance to reverse it or atleast hault it from progressing.