Time Period for developing lymphedema?

MostlySew

Kira, thanks for your kind words of wisdom....yes, worrying gets us all down. I will attempt to get this thing diagnosed early next week and will let you all know. It is a very st range area, not just the normal nerve pain etc.



And, I've enjoyed reading about the Hobie kayak. My husband and I also kayak, although not last year. Sounds as though one of those would do nicely for us.



Cats, great news on your path report....we love those kind of results!



Thanks again,

Lunakin

"staying lean and losing weight if you are overweight dramatically decreases risk."

 Yeah, my BS looked at me and said the equivalent of "Oh, no! You're thin. You're not supposed to get LE."  Or a seroma for that matter....

"Decrease" does not mean "zero risk."

Kay_G

My BS said the same thing. She said she had one patient develop lymphedema, but she was obese, didn't think I would have a problem since I am normal weight. Not sure about her saying only one patient developed lymphedema, with the percentages that do, she must not be following her patients to find out.

carol57

Kay, what you wrote just rang a loud bell with me.  My BS gave me a 1-3% LE risk with my SNB. I now know this was understating the risk, and I have been a bit conflicted over whether I should ask her to explain herself on that point. I saw her for follow up just once since my July bmx/recon, at the two-week mark.  Since then, all my follow-up care has been with the PS. I was instructed to make an appointment for a six-month follow up with the BS, but my heart just is not in it. I don't perceive any recovery issues that require her attention, I'm being seen by the PS as needed, and I now have my primary care doc on board for my LE management.  So, I have not made that appointment with the BS, which should be about now. 

But your comment that your BS must not be following her patients to find out her true LE outcomes is making me reconsider. If I don't see my BS, she will not hear about my LE.  Then, of course, I wonder if any office-visit note to file about my LE would even register in any kind of tally. Would knowing I developed LE prompt her to do better homework and/or more honest LE risk disclosure?  Very hard to say. I am sure PO'd about not being given adequate LE risk info, nor baseline measure, so a part of me really does not want to waste one iota of my time and psychic energy on this woman.  But...if knowing my outcome might help change her behavior?  (She's 3 hours away, so going there is not a trivial undertaking.)

I guess I'll mull this one over a bit.

Carol

Leah_S

I doubt if my BS knows what % of his patients get LE. I had a few f/u visits with him after surgery (don't remember how many) but after I was fully healed from surgery and post-op infection he released me to MO. I developed LE 2 years after surgery. I also had ALND, post-op axillla infection and axilla rads so I'm not surprised I got it - I'm actually surprised it took so long and is mild.

Leah

carol57

So...maybe we need to organize a post-card campaign to all our breast surgeons!  'Having a great time, wish you were here sharing my LE.'    Maybe I'm too much a cynic today!

Binney4

Hmmmmm! What picture would we have on the postcard? A therapist wrapping an arm? A lympher trying to eat dinner with a wrapped arm? A TSA agent doing a pat-down of a wrapped lympher? Kira's iconic butterfly with a swollen fist imposed over it?

Lovin' it!
Binney

Momine

I vote for a surgeon in scrubs trying to work with a wrapped arm. My surgeon claimed that only 1% of his patients got LE and that the low rate was due to his superior technique. However, when I stopped by the office with my sleeve on and mentioned to his assistant that I had bothersome cording and swelling, she acted as if I hadn't said anything and didn't even ask to inspect it. So I guess if you pretend it doesn't exist, then, ta-dah! it doesn't.

Binney4

So true! My surgeon still tells women he's never had a patient develop LE. Apparently I ceased to exist when my arm swelled.

Ta-dah is right! Magic disappearing patients!
Binney

LtotheK

I love it:  superior technique.  I am sure a hatchet job would be an added risk, but come on.  Removing nodes is removing nodes, therein lies the real issue.  And my doctor who is so fantastic...how is it he ended up removing six when he told me he would only remove up to three 

Anyway, reminds me of Cancer Treatment Centers ads.  They make it seem like they have some special arsenal, and it really does feel like preying on the victim.  Chemo is chemo, it comes in a bag, folks.  Wish it were more nuanced, but it just ain't.  And with the studies showing naturopathic interventions during chemo could be questionable in terms of their contraindications, I remain unconvinced there are any real ways around these very standard treatments at this time.

Kay_G

I am surprised to hear so many with BS who seem to think none of their patients get LE. Mine knows I did. I wonder if she now tells her new patients she has had 2 patients get LE. I do like her. She took a lot of time with me. She answered all my questions and was very caring. I do really wonder about that comment though. I don't blame her for the LE, I also had a level2 ALND and then rads, and had cording before I even had the sx, so it was bound to happen to me I think. And it happened very quickly, about 4 weeks after sx. I wonder if she really thinks she only had one patient develop LE or if she is trying to have her patients feel positive about it or what the deal is with the comments though.

carol57

Postcard should be a montage of photos. The center photo should show a circle of linked arms, and oh, 60% of them should be wrapped arms. Photos on the perimeter of the post card should be of a wrapped arm trying to eat dinner as Binney suggests; Momine's idea, only the surgeon should look astonished at the sight of a wrapped arm in the OR; maybe a view of a grandmother cradling an infant in two wrapped arms with gloves; an isn't-that-sexy pose of a woman in a negligee with her night garments sticking out all over.

Momine

How dare you? I will have you know that my surgeon is a very great man, the god of breast surgeons, seriously! He is actually a very fine surgeon, but in his own estimation he is even greater. I think a big ego is a bit of an occupational hazard for surgeons.

As for chemo etc, I completely agree with you. I am in Greece, and many people asked why I did not go abroad for treatment. I didn't because I realized that much of the treatment is pretty standard, and I would rather deal with this from the comfort of my own home, with my doggies and dh by my side, than from a motel in Minnesota or whatever.

Once I am done with rads, I will probably consult with a couple of docs outside Greece about follow-up both in terms of hormone treatment and monitoring, because there the variation seems to be greater.

carol57

Momine, I think the breast surgeons sometimes just don't want to believe that the lifesaving work they do can result in the unfortunate collateral damage in the form of LE.  And, they don't follow up for LE monitoring, whether by design (such as in my case, where my care was given over to the PS) or out of ignorance of signs and symptoms of LE.   Maybe ego is all tied up in pride of wonderful outcomes, and LE is just not consistent with that wonderful outcome they want for us.

Leah_S

My surgeon never discussed the LE risk - BC nurse talked about risk reduction. As I said before, too many risk factors to avoid it for me. I know the latest research (which came out after my surgery so is only interesting on an academic level) says there doesn't appear  to be any survival advantage  to ALND if axilla rads are done but, quite frankly, I had as much cancer removed from my nodes as from  the tumor in my breast so I'm glad the ALND was done. My own suspicion - once you start treating BC, unless you're dealing with DCIS, you're at risk for LE. The percentage may help you decide on tx options but it's never 0%.

It's awful. LE is awful. But cancer is worse.

Leah

Kay_G

Yes that's the way I look at it too, Leah. I had mine in August, so that was out there, and I did know it. But I still let the BS do the ALND because I had a palpable node per Chemo and I wanted it removed. Even now knowing I got LE, I am still glad I had it. I think you're right in the case of my BS Carol. She certainly comes across as humble, but I think she hides the ego well.

kira66715

So, my breast surgeon was all about cosmesis, and didn't care how much she traumatized the tissues to achieve it--and we argued about this constantly prior to surgery--and she told me I had a 7% chance of LE.

When I got LE, she told me "It's like diabetes, it's chronic, I send you to the LE clinic and my job is done." I said "That's like an endocrinologist sending a patient to the diabetes educator and never seeing them back. You don't abandon your patients." But she did.

So, now it's three plus years later, and I work in a rad onc office, and I see one of her patients, in a sleeve and glove and she said to me in greeting "Oh, Dr. X said it's so good that I'm coming here for radiation because you know EVERYTHING about lymphedema!"

And I said to the head rad onc, "Now why is it that I know everything about LE?"

Now I'm a resource. Before I was just an unfortunate outcome.

Kira

Southamptonmom

Okay Ladies! I had surgery in November. Developed severe cords from my hands to my waist (both sides). Finally getting relief, and I developed LE while the LE specialist was on Vaca. I was able to wrap my hand and feel I have it under control. I knew something was going on because of the "heaviness" in my arms/hands when I wake up. I had some tiny little blister on my right palm that was itchy, and it caused the friggin LE.

Here is my question: I am looking for an electric razor that actually works. I've already bought 2 of them. Any suggestions?????

kira66715

Southhamptonmom/Rose,

We've had long threads on the razor issue--many women find electic razors chafe, and use multibladed ones carefully, other women have found that trimmers are a better bet.

We have a page on stepupspeakout, but I don't think the links work anymore:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Shaving_under_our_arms

So sorry about the LE--but good that you have the tools to manage it. AWS compromises the lymph system--the cords are deep collector channels and they're out of commission.

Hopefully it settles down soon.

Kira

Kay_G

Southhamptonmom, not sure where you are going for PT, but there is an exercise program at Penn for women with LE or at risk for LE. It has to be under really good control before you can start. I believe the program is 4 sessions, one per week. There is also an LE class as well. I did the class and hopefully will do the exercise program soon. Waiting for my doc to okay it. I have heard good things about it. When I went to the class, several of the women were getting their PT elsewhere, but were coming for the exercise program. Just FYI in case you're interested. It's at 37th and Market. I thought I might be able to do the program in the suburbs, but apparently the exercise program is only done there.

Binney4

South, hello!

As Kira points out, many of us have found the usual advise about electric shavers to be a bigger problem than a good multi-blade razor and careful shaving with plenty of warm water and soap. Putting the razor through the hot rinse cycle in your dishwasher helps keep it from carrying too much bacteria. If you nick yourself (with either type of shaver) wash the area and apply topical antibiotic, and be sure to keep an eye out for any sign of infection. If you suspect trouble get help from your doctor or urgent care  AT ONCE. Mention lymphedema and cellulitis, because it doesn't always occur to them. Keep us posted, and do let us know how we can help.

Be well!
Binney

Momine

Good to know about the electric shaver. My dh told me the darn things don't work, and I was really scared to try one anyway. Now I won't waste my money.

I am not very confident with a regular razor, so I will probably use those creams. Right now I am still chemo hairless. 

Southamptonmom

Thank you for the info!

JoanneJohnston

My sister has a friend who developed lymphedema after kneading bread.  It was a number of years after the surgery.  I think we get a little lax after a while, but upon hearing this, I try to be a bit more careful.  I was advised by all my oncologists, to never have any shots, blood work, blood pressure etc, taken in that arm. (EVER).  So, I don't.  2 years and have been lucky so far.  Good luck to all.

Joanne

PS... I Pluck

Southamptonmom

Okay ladies, ready made S-M-L, or custom gloves and sleeves? I'm going Monday to get fitted. I have a feeling they won't have a choice but to do custom. My fingers are very long and thin. I never fit in women's gloves unless they are loose and stretchy chenille.

Binney4

South, here's a page about proper fitting of compression garments so you'll know how to make the judgement call:

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Some of us have had problems with fitters being sloppy about fit in an effort to get old stock off their shelves, so just be aware!

Do let us know how it goes. Be well,
Binney

Kay_G

With the fingers being open, you might be okay. The custom fit have issues too. I just had my old custom fit glove working well, now my hand keeps swelling with the new one whether I insert a foam pad or not. Grrrrrrrrrrrr!

garnet131

At both the fitters I saw, I felt that they dismissed OTC sleeves because they'd much rather sell me a more expensive custom. Even after she had just looked at my arm and said that it didn't look way out of proportion (i.e., top much larger than bottom) that would call for a custom. grrrr...

And that was at the second ("good") place where I at least felt listened to and cared for. I vowed to never go back to the first place--the best description I can think of for it is dehumanizing. 

Then had the fiasco with the "stiletto-fingers" second glove that caused a flare in less than 2 hours.  Now I find myself dreading the thought that I'll have to replace the current ones in less than 6 months, though all the guidance I've found here will certainly help. And you've given me many more options to investigate online.

Found myself really "hating LE" and the foreverness of it as I walked up the stairs at work today...guess I'm on the wrong thread. 

Garnet131

Southamptonmom

Garnet131, Doesn't matter what thead you are on if you need to vent!  Don't know what I would have done without all you ladies (and gents now and again).

The first shop I went to for camis, bras, prosthetics, the owner pushed off an older bra, and it pissed me off enough to tell her I was not buying from her again. I bought 4 coobies, and the older one had a metal clip in the front that hits my port. Then she tried to sell me the same old surgical camis for the new year.

I hope this new place doesn't mess with me on Monday!

Kay_G

Garnet, looks like you and I are in the same situation. The PT ordered me an inexpensive custom glove first because I was still doing rads and he thought it would be too big when I was done rads. The sleeve was. Now he ordered me a jobst glove and sleeve. The sleeve is fine. He told me he ordered the glove and sleeve the same compression. He said I might really need a higher compression sleeve, but if that were the case putting a piece of foam inside the sleeve would fix it and he'd order the higher compression in six months when I need a new sleeve. I already have a piece of foam for the old glove, that one was working perfectly with it. But my hand is swollen with the new glove whether I put the foam in it or not. Very frustrating. At night I use the new Solaris tribute and my hand looks good in the morning. I am at a loss for what to do with the new glove, but I see the PT on the 12th so I will see what he says.