Been diagnosed with lymphedema...

caya · 06-17-2009, 08:39 PM

Well, I've joined the group of "swell" gals, 2 1/2 years since my mastectomy.

I nicked my right ring finger chopping veggies on a Friday afternoon 3 weeks ago - immediately cleaned it, applied polysporin and bandage. Next evening we're out for dinner and I noticed my right hand was puffy. Called my breast surgeon's office Monday morning, got in for the next morning - yup, he confirmed it, but says it is a very mild case and thinks it is completely reversible.

I had my 2 hour appointment at the Lymphedema Clinic today at Princess Margaret Hospital (PMH) - very informative, the nurse/therapist also thinks it will be reversible. Got fitted for a sleeve/glove, which I only have to wear when exercising and flying.

Obviously not the worst thing in the world when I know what many on this board are going through, just thought I would update you all on my condition, hence the signature change.

all the best
caya

hutchibk · 06-17-2009, 08:46 PM

Well bugger. But the good news is that with lymph massage and manipulation it is reversible and manageable!

Believe51 · 06-17-2009, 09:58 PM

Drats Caya. Happy to know they think it is reversible and that you will be able to manage this with some effort. I have seen how hard you try to keep healthy and know this is no different. Please keep us posted with how you are doing with this though.

And remember, our problems whether big or small are just as important to discuss with others. No matter what we post, someone somewhere will have learned or gained appreciation from it.>>Believe51

Chelee · 06-18-2009, 12:22 AM

Darn it all...it's always something isn't it. I'm pretty positive that you caught it early enough by seeking medical attention right away & not letting it get out of hand so to speak. It shouldn't be too long before they get you back to normal. (Well as normal as it gets for us lucky ladies.) Hang in there.

Chelee

Pam P · 06-18-2009, 03:08 AM

Oh, swell, another thing to deal with. Glad it's minor & reversible. Be diligent about wear the sleeve, doing exercises, getting manual lymph drainage, bandage if recommended. Hopefully soon it will only need precautionary tending.
I've had lymphedema for about 6 years. It is a nuisance, but mine is muh worse = fibrotic tissue in the forearm is the mail stuck point. Started out at the effected arm 30 percent larger than the other, now can maintain between 6-9 percent and am okay with that. If I was more disciplined I could probably get it down more, but gave up the nightly bandaging= it was a drag. Would go back to it if things got worse though. I can't prove it but I think what triggered mine was an infection near my finger nail, a side effect when I was on taxotere.
Sorry to make this so much about me. I wish you a minimal change in your routine in your life with this.

Ellie F · 06-18-2009, 08:45 AM

Sorry to hear this has happened. It is so easy to cut your hand and trigger this thing off.I accidently burnt my arm on the oven at weekend and have been on pins ever since!
Hoping that you soon get it back to normal.I met a lady at the clinic who was given some preventative exercises to do following a cut, sting or burn and she had used them after a bad bee sting and prevented the swelling. I will try to get more information and post it.
Take care
Ellie

tricia keegan · 06-18-2009, 09:23 AM

Sorry to hear this Caya, it's scary we can get this so easily!
Thankfully it sounds like it'll be kept under control for you, my friend developed it just from sitting in her hot tub! She thought keeping her hand out would give her protection but of course it's her body temp too that caused the problem.
I really hope they can treat this with the minimum of fuss

BonnieR · 06-18-2009, 09:38 AM

I have a mild lymphedema in one arm. I scratched my arm terribly during my sleep and woke with it all inflamed and angry looking. The lymphedema specialist put me on a round of Cipro right away to ward off any infection. It was a lesson for me to keep my skin from getting too dry and itchy!
I got a little too much sun exposure once and that resulted in irritation too. It was easily sunburned.

Becky · 06-18-2009, 05:51 PM

Oh no. Well, I do know that many cases of lymphedema are reversible. I am so sorry you even had to deal with this at all. We all know this can happen and happen at anytime but it seems so unfair (especially that it happened to you dear girl).

Do what the specialist say so that it will be a has-been.

Hugs to you.

Laurel · 06-18-2009, 07:49 PM

Boy, Caya, I am sorry you have to experience this, but I am truly grateful for your post. I am so cavalier about my scratches and cuts on my left arm. I've relaxed so much I don't even bother to clean them most of the time. I just keep on moving, cleaning, whatever I am doing at the time. Gotta stop that! Thanks for the reminder.

Hoping your swelling resolves quickly and never returns!

LAURIE · 06-18-2009, 08:26 PM

OH I wish for you super, super great therapy. Unfortunately mine just gets worse and worse, but they knew right away that therapy was not going to help that much. but hey, I'm ALIVE!!!!

Gerri · 06-19-2009, 07:08 AM

Caya,

So sorry to hear that you have this to deal with now. Hopefully early intervention will keep it under control.

I just want to add that this is why posting about these things is so important to others. Laurel was right, I too am so cavalier about the arm that I had my SNB. I always make sure it is not used for BP or needle sticks and thought I was doing the right thing. A few weeks ago I was at a bridal shower and noticed that I had somehow cut that arm and it was bleeding. I didn't give it a second thought, just dabbed away the blood and put a bandaid on it later that night. It started getting red and hot to the touch. I woke up in the middle of the night (three days later) and remembered the whole risk of lymphedema thing. My cut was still inflamed but it was starting to look better; I called my PCP and got an antibiotic anyway. I am hoping that I am in the clear since I haven't noticed any out of the ordinary swelling. This taught me to be more aware of taking care with that arm and to follow the advice I would be sure to give others in this situation....I'm even going to finish the course of antibiotics thanks to your post.

Thanks for posting this Caya. I hope you caught it in time and will be able to prevent further problems.

All my best,

BonnieR · 06-19-2009, 08:15 AM

I wear a little bracelet on the affected arm. Similar to a medic alert but smaller. Says "no needles, no BP" and has a little breast cancer ribbon charm. It also serves to remind me to take care with this arm. Not that I always remember to!

ETA: I also need to remember to only use an electric razor under my arms....

caya · 06-19-2009, 06:40 PM

Thank you all for your kind words. I've been doing my exercises the past few days, and when I dropped in on my mother this afternoon she noticed the swelling had gone down since she saw me last weekend.

And it is true that my little episode here is really a reminder to us all to be more vigilant when dealing with our affected arm. I was pretty good, but now I will be really careful... In fact, the lymphedema nurse warned me not to vacuum - her words to me literally were "Get someone else to do it, Caryn. It's just not worth the risk." I guess the DH and DDs will have to pick up the slack

BonnieR · 06-19-2009, 07:22 PM

Don't vaccum! Wow, some GOOD news about lymphedema!

Believe51 · 06-19-2009, 08:58 PM

Caya, happy to hear that things are looking better. I think that you should not be dusting or folding clothes either....(chuckling hard). Stay well Sweet Caya and keep doing what you are doing. Enjoy the weekend.>>Believe51

rinaina · 06-19-2009, 09:06 PM

Sorry this happened. It is a reminder to us all how important it is to try and avoid any trauma to the affected side. Caya, at least is is most likely reversible and a mild case. I thought back in February I too joined the Lymphadema club. I had swelling and pain in my right arm. Turns out I have a torn rotator cuff. I have been in physical therapy since then but first I was checked out at the lymphadema clinic at Glenbrook Hospital. I hope this problem subsides quicky and that it does indeed reverse itself. Take care.

Joan M · 06-21-2009, 07:31 AM

Caya,

Sorry to hear about the lymphadema but it was smart of you to go right away to check it out, which hopefully will help keep it under control.

Joan

Believe51 · 06-25-2009, 02:05 AM

Just checking in to ask how are things going for you?? I hope you are going easy on the daily chores and not pushing yourself. Sending you a hug and a smile.>>Believe51

caya · 06-25-2009, 07:48 AM

Marie, it is so sweet of you to check in on me, with all you have on your plate right now. I'm doing okay, continuing with the lymphatic drainage exercises which were demonstrated to me at the hospital clinic.
The swelling is still confined to my right hand, and it it is not too bad. If I can contain it to just the hand, I will be happy.

I really am trying not to do the repetitive arm chores like vacuuming and ironing... hey, I have orders from the lymphedema nurse

Sending hugs to you and Ed.

all the best
caya