Lymph Node Dissection

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5/14/2012 7:00pm
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Replies: 16

Hi --

I'm going under on Friday to have all right underarm nodes removed after my sentinel node was positive for spitzoid cells.  What can I expect?  I know I'll have a drain.  Sorry for the vague/general question, but all I can find are lymphadema & other horror stories via Google.  Anyone care to share their experience? 

How does recovery compare to wide-excision + SLNB?  I only rested for 3 days after that one, although my incisions are still sore 3 months later.

Also, I am supposed to fly in mid-June... will that be safe?  I'll ask my doc of course... just curious now.

Thanks!

Blair, newly IIIA

washoegal - (5/14/2012 - 8:22pm)

Hi Blair,

I had same surgery, same arm.  Of course I'm right handed.  I flew home two days after the surgery.  The only problem there was with the TSA.  They were suspicious of the "lump" under my shirt, so in front of everyone I raise my shirt and announced I just had cancer surgery.  I bag was about 4" full of fluid and I think she almost lost her lunch!

Anyway, I was up and around  the day after surgery.  The drains are a Pain.  Sleep with your arm elevated, like on a pillow, that helps.  Other than being careful not to pull the drain out it's life was life as normal for me.  I had to have my drain in for 25 days because I would not stop draining, finally the doc pulled it out for fear of infection. 

Yes, I do have some problem with lymphedema.  I asked the doctor for an RX for a sleeve because we like to travel.  I got fitted as soon as my arm appeared to be normal size.  I didn't like the one I got so I ordered one on line that was a much more comfortable material.  I wear it only when I fly.  At the first sign of lymphedema I went to a certified lymphedema message therapist.  I caught it early and really have not had a bad problem with it since.  I do have chronic lymphedema in the breast also, which caused mastitis.  That was probably worse but easily cured with antibiotics by my GP.  That only happened once.  2 years out now and I cope just fine on my own.

One other hint.  When you get your drains out ask you doc to show you stretching exercises.  You will not be able to move your arm very high and will need to start slow gradual stretching.  these are easily done at home if you are show the proper way. 

If you take care of yourself, catch things early, stretch, etc. you should be just fine.

Yes, you can fly.  With or without your drains.  If the drains are out, I recommend a sleeve.  If the drains are in I'd recommend someone run "block" for you at the airport if possible.

Good Luck!

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

CarolA - (5/14/2012 - 11:25pm)

Hi Blair.    I think Mary pretty much covered all that I would say.   I had my total LND back in October '05.   I had the same issues that Mary did with some redness in my breast;  the explanation for me (after antibiotics) was that the lymph fluid was redirecting.   I also went for  physical therapy for range of motion issues (I didn't not get good enough instruction about stretching) and she was also trained in manual lymphatic drainage therapy techniques.   It was very helpful.   After all these years, only occasionally do I "feel" discomfort and wear the sleeve for a day or two.   At first, it was such a big deal;  but as with many things in life, I'm used to it and not so self-conscious, even wearing short sleeves with the sleeve.   I would think that wearing the elastic sleeve might be advisable for flying (I do when I fly and even when I take lengthy travel in the car, like 6 to 12 hours drives), but I would ask the doctor.  My sleeves were covered under my insurance.

My tips in prep for post surgery---button enclosures to start.  I bought a couple of very large t-shirts and cut them straight up the middle to become cardigan-like tops to wear over large cami-tops that I could step into, rather than put over my head. Elastic waistband slacks are easier  (you'll be one-armed for a bit)   I found sleeping in bed difficult for me, so I slept (comfortably) in a barcolounge with my arm elevated on the arm of it with an extra pillow.    The pain in recovery wasn't too bad, and I think I swtiched to just tylenol after a few days.   The drainage "bulb" is a nuisance (it might have changed after all these years, but there is a way to use a safety pin to secure the length of it to your garment).   Mine was removed in about 14 days, with the drainage diminishing enough. I would say that you might feel pings and pangs, nerve endings healing, for a while (for me it was months,honestly).    I do still have occasional numbness under my arm area, and I cannot feel the cool spray from deodorant

Just for the record, I did not do interferon after my initial WLE and SNB which revealed two nodes with small evidence of melanoma.   My left armpit area was monitored by ultrasound, and six months after the initial procedures, 29 lymph nodes were moved, none of which had evidence of melanoma.   

Good luck with your procedure.   You will be fine, jsut take your time recovering and do get some good advice for stretching (even if you have to go to Breast Cancer survivor groups, which is what I should have done from the get-go, as they were SO extremely helpful in suggesting the therapist with lymphedema training).

CarolA

Linny - (5/15/2012 - 7:53am)

I had a total LND back in January 2011 to remove the lymph nodes from under my left arm. Just recently I began experiencing some achiness in that arm which subsided once I started wearing my sleeve more often. Until this point I'd only worn it for flying. I was also getting lazy with doing my stretches, which didn't help my situation. Today the arm is feeling and looking good.

Yes, there are some horror stories out there with regard to lymphedema. Being diagnosed with melanoma is bad enough and then when you hear about lymphedema on top of that it's pretty daunting. It was also freaking me out until I heard from a breast cancer survivor who'd had a double mastectomy and a double LND and she had no lymphedema! She explained that those who get lymphedema are in the minority. Hearing that made me feel better, This same friend also recommended a stretching exercise to do starting after surgery which had no impact on the drain. I swear it helped with my recovery.

The surgeon who performed by LND was a breast cancer surgeon so when I came out of surgery the surgical team had put a mastectomy bra on me. It was great! It had a zipper in the front and straps that velcroed together at the shoulders. But the best part was that it came with a pouch for the drain! During my recovery time I switched between that and a camisole top with a shelf bra in it. The cami had enough stretch in it that the drain would stay in place reasonably well when taped into place.

I couldn't wait to get that damn drain out. Mine was in for two weeks. By the end of that two weeks I was able to move my left arm fairly well, though I didn't have full range of motion just yet. Pain was minimal. After a month it was negligible.

The area around your incision will be numb. My understanding is that it was done intentionally to help with pain control. Some of the feeling has returned but hey, it's my armpit -- the important thing is that my arm and fingers and just fine.

Since you will be flying in a month, I recommend seeing a physical therapist who specializes in lymphedema ASAP so you can get measured for a sleeve and get information on exercises and stretches. Getting the sleeve is important since you're going to be flying in a month. If you like color, there are some nice colorful sleeves made by Juzo which are very comfortable. And, if you like color a LOT, look at some of the sleeves made by LympheDIVAs. The therapist can fill you in on them. You need to be measured for a sleeve. Don't just buy one from the Internet or the drug store.

Once good exercise you can start doing right away and not worry about screwing up your drain is walking. The weather is nice so go and take walks. If you can work up a little exertion that's good (just don't start swinging that left arm yet)! Your diaphragm can act like a bellows which causes suction in side your body and you need that to keep those lymph fluids moving.

You're going to do just fine after your surgery.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Linny - (5/15/2012 - 10:43am)

One thing I forgot to mention is that you will no longer be able to have blood pressure taken on the affected arm nor will you be able to get any shots or have blood drawn from that arm. The affected arm will be at risk for infection, hence the "no needles" business and having blood pressure taken can aggravate your arm.

Always carry band aids and antibacterial ointment with you in case you get a cut or scratch on the affected arm.

You're going to want you consider getting a medical ID bracelet that states something to the effect of "No needles or BP in right arm". And these days they're far from the ugly chain bracelets they used to be. Your biggest expense will be the engraved tag, the bracelets themselves are reasonable, depending on where you buy them. Check out Etsy.com and eBay.com. If you're really ambitious, head to a local bead shop where thay can show you how to make your own.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

bostonguy - (5/15/2012 - 12:17pm)

Wow all of this information is awesome.  I am having my LND under my left arm tomorrow (Wednesday). I'm right handed thankfully.

 

Blair - Best of luck to you.  We're in the same boat and almost on the exact same time schedule.  We'll have to compare notes this weekend..

 

To the rest - thanks so much for sharing your stories.  I'm anxious about...well...just about everything as you can imagine.  I too am a traveler - I live in Boston but my office (as in where my desk is physically located) is in New Jersey, just outside NYC. I also have an office in Manhattan.  If at all possible, I would like to drive down (or take the Acela Train) to New Jersey next week, and it sounds like that should be doable if all goes as planned.  

I'm not one of those people who live to work, but I do admit that work is actually a nice distraction.

 

Thanks again.

Linny - (5/15/2012 - 1:31pm)

Hi Bostonguy! I would check with the doctor as to when it's OK to drive again. You don't want to be taking a long drive like that with a bad arm.

You're also going to need to empty your drain on a regular basis and keep record of how much fluid it's collecting. The train is the better option, but it's not too convenient in those bathrooms to empty the drain. Plus, they'll be filthy.

Why not take it easy for a few weeks and get yourself healed up? smiley

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

kluft - (5/15/2012 - 2:23pm)

Hi... I had my LND on May 1st. on my left groin... . All lymph nodes clear!!! I still have the drain and quite a bit of bruising... I did travel this weekend to a melanoma symposium in Seattle and did ok.. I din't drive but spent much of the time in Back seat with my leg up with ice.. Any suggestion for ways to decrease the swelling...??

I am certainly getting better and am looking forward to heading back to work...

Good luck with your LND tomorrow.. All the information can be overwhelming at first..at least for me... but so helpful.. and what a wonderful community of brave men and women...Karen

blairashley - (5/15/2012 - 6:54pm)

Wow -- I was so surprised to come back to all of these awesome, thoughtful responses!  Thanks so much everyone.  Your advice & stories are much appreciated. Wish me luck on Friday.

BostonGuy:  Good luck to you tomorrow!  Do come back and let us know how it goes.

Blair

Bruce Davis - (5/15/2012 - 8:36pm)

I wish you the best this Friday. Had radical resection of L axilla in April of '11. I was able to wander around the hospital and visit a friend that was having hip surgery the day after surgery. I was fortunate to have the drain for only 2 weeks and go back to work@ that time. Also fortunate with a little lymph edema in arm for a couple weeks and then it subsided, never to be seen again. I suggest you stick with P. T. When the surgeon allows it if possible. Due to a port for interleukin 2, complicated nodule excision on L shoulder and insurance I wasn't able to stay with P.T. And I'm paying for it now.

Good Luck this Friday. Keep the faith!

Presently it's "Don't give up."

bostonguy - (5/20/2012 - 11:00am)

 

Hi everyone,

 

The lymph node dissection on Wednesday went well and I'm doing fine in my recovery.  I have the JP drain and while it's annoying, it's not that bad.  I'll reconsider that after I have it pulled out, which I know is not a pleasant process.

 

The surgeon indicated to my dad that he did not see any signs of anything else in there when he did the lymph node dissection.  Of course, it's the pathology that really counts and that won't be back for another week or so.

 

Thanks again for all of your support.

 

Blair - I hope you're doing ok post-op!

blairashley - (5/20/2012 - 9:53pm)

Hey bostonguy! I came back to see if you'd posted and it sounds like you're doing well! Me too. Yeah, the drain is completely awkward, but it could be worse. After 2 days, my fluid seems a little bit like gelatin. It's still draining though, so I'm not too concerned. Let us know what your path report says and I will report back, too! Take care.

blairashley - (5/22/2012 - 10:00pm)

Just got my path report back -- I'm NED!  Doc took 11 nodes... all negative.  :D

bostonguy - (5/23/2012 - 10:19am)

Congratulations on getting good news! That's great! You must be feeling better today than you have in weeks.

 

Did your doc say what your next steps are?

blairashley - (5/31/2012 - 1:44am)

Did you get yours back??  How are you hanging in there?

Just got drain out -- thank goodness. Hated it so much! Next steps for me are a discussion with a medical oncologist regarding Interferon (I'm NOT doing it though). Then follow ups... forever!

bostonguy - (5/31/2012 - 11:16am)

No results yet.  They told me it would likely be 2-3 weeks.  I have an appointment on Tuesday and I just called to see if the results are in - only preliminary, not finalized yet.  I was told that I should have the results by Tuesday.  So I live in limbo a bit more.  I also hope to get the drain removed on Tuesday....hopefully it's a really good day.

 

I did have a good appointment with dermatology last Friday.  They told me that they do not expect the pathology from the lymph nodes to show anything else.  They also told me that my biggest risk was another melanoma, not a recurrence this existing melanoma and the lymph nodes.  I'm also not likely to do interferon (for a few reasons, not the least of which is that it doesn't increase survival and I also have Crohn's disease).  So it looks like I'll be getting scanned and skin checks every 3 months, which, given that I am already at least Stage IIIA, is the best case scenario.

 

I did feel relief after the Friday appointment with my dermatologist. I am doing a lot of praying that the pathology comes back as they expect  - NED.

 

COngrats on NED and Congrats on being rid of the drain!!

blairashley - (6/3/2012 - 12:31am)

Wow -- best of luck to you on Tuesday!  Sure feels great to get the drain out.  Weird that your results are taking so long, but every hospital is different.  I'm sure you'll be fine!!  Good thoughts!!