Wife headed for Lymph Node dissection of left Axillae at MD Anderson

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6/3/2014 3:07pm
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on June11. All due to literally "one" Mel cell in sentinel node biopsy. To say we have waffled back and worth on this is an under statement.

As her primary care giver, what should I be aware of and expect?

Thanks

Greetings,

Yes, been there and done that.  Its good to take a safe rather than sorry approach here.  When I had my wide excision done on my primary leision area, they did an exploratory check on the lymph nodes that did reveal the spread of the mel.  Upon going back for the surgery, it was discovered I had a very agressive spread and they gutted the area removing about 17 lymph nodes, of which about 5 tumors were found, with one already metastizing. The good news is assuming surgery goes smoothly, the recovery is not real bad.  I never even took a pain medication.  I did experience permanent nerve damage and perhaps the worst part was a drain they left in for a couple of weeks to prevent lymph build-up in the area.  This needs lots of management and having a rubber hose exiting your body is pretty icky.  There will be limited strength and motion for a while. The longer term effects of the surgery, now, almost a year later are really not bad, and have not limited my lifestyle much at all. Cosmetically, there remains an indentation from tissue loss, and scarring of course, but in such hidden location, it does not have much effect .  I still have one fairly substaintial tumor in the area that can be readily felt, and measured.  We use this tumor as a barometer for the effectiveness of the drug therapy, assuming if it shrinks, they are all shrinking, and when it grows, the cancer is progressing and new therapy must be explored. Best wishes for a smooth procedure, and positive outcome.

I had a complete dissection of the left axilla. In retrospect wasn't that bad, really.

Your wife will most likely have a drain in that site, which will need to be emptied and fluid levels tracked. My drain was taken out two weeks after the surgery. You would be a dreamboat of a husband if you could help her with that.

My surgeon was also a breast cancer surgeon, so I came home with a mastectomy bra. It actually wasn't a bad idea on her part because the bra came with a pouch to hold the drain in place. It also has straps that velcroed to make the bra easier to remove. She can also wear a sports bra and you can attach the drain to that as well.

She will probably notice some numbess near the incision site under her arm. This is not a bad thing -- consider it built-in pain control. The sensation will eventually return.

The first day after the surgery was the hardest but after that, it was all up hill. By the time I had my drain removed my pain level was at a 0.

Get familiar with a condition called lymphedema. It is a consequence of having lymph nodes removed. It just means her arm will be prone to swelling because the lymph nodes that would normally drain the fluids from there are gone. Some great web sites about lymphededema are here:

National Lymphedema Network

Lymphedema StepUp-Speakout

General Resources

Not everyone gets lymphedema, but the more familiar you are with its symptoms, the sooner you can get treatment, and the sooner you can get treatment the better the outcome. The condition is generally treated by physical therapists who have been trained in lymph drainage techniques.

I have mild swelling near my elbow and I do wear a sleeve but it has not affected my lifestyle. I just need to be mindful to not get any open wounds or bug bites on my left arm. Also, she will never be able to get blood pressure taken or get shots in her left arm again. The blood pressure cuff can compromise already compromised lymph vessels and even punctures with a sterile needle leave you open for infection.

If you have any more questions, just fire away!

 

 

 

 

 

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

I've had two lymphendectomies in my life, one at age 15 on the left, the other at age 62,  The second because of the results of a sentinel node biopsies that my case of male breast cancer had resulted in cancerous lymph nodes in my axilla.  The first because of suspected cancer in my left axilla that was thought to be a form of lymphoma and turned out after a major operation to "be nothing."  This operation was performed in 1956.  My melanoma when it showed up in 2012 was to the lung with unknown primary.  I have a crazy suspicion as someone whose family has had another example of unknown primary that showed up in the axillary lymph nodes with unkown primary, that what occurred at 15 was my first melanoma.  No way of proving that, no way of disproving either.  The pathological profession was working with rather primitive methods by our way of judging today.  The surgeons were not expecting melanoma to be showing up there as well and may have never have had the tumor tested for that strain of cancer. 

More important for your consideration, I don't have the luxury of only using one arm for lifting, blood tests, etc.  So I just go ahead and don't worry about babying either arm.  Never have had a problem.  I obvious don't know for sure why I have been free to lymphadema but I also did not discontinue using both arms in exercise as soon as I could move them after surgery.  My exercise is swimming and I was swimming laps within a few days of surgery.  It hurt, but I didn't strain and exercised them prior to swimming by stretching as much as I could.  I don't know what the doctors would say about my approach but it worked for me, and the last lymphandectomy 11 years ago took away any option of favoring the "affected" arm.  Best of good fortune to you all as you move on

I've had two lymphendectomies in my life, one at age 15 on the left, the other at age 62,  The second because of the results of a sentinel node biopsies that my case of male breast cancer had resulted in cancerous lymph nodes in my axilla.  The first because of suspected cancer in my left axilla that was thought to be a form of lymphoma and turned out after a major operation to "be nothing."  This operation was performed in 1956.  My melanoma when it showed up in 2012 was to the lung with unknown primary.  I have a crazy suspicion as someone whose family has had another example of unknown primary that showed up in the axillary lymph nodes with unkown primary, that what occurred at 15 was my first melanoma.  No way of proving that, no way of disproving either.  The pathological profession was working with rather primitive methods by our way of judging today.  The surgeons were not expecting melanoma to be showing up there as well and may have never have had the tumor tested for that strain of cancer. 

More important for your consideration, I don't have the luxury of only using one arm for lifting, blood tests, etc.  So I just go ahead and don't worry about babying either arm.  Never have had a problem.  I obvious don't know for sure why I have been free to lymphadema but I also did not discontinue using both arms in exercise as soon as I could move them after surgery.  My exercise is swimming and I was swimming laps within a few days of surgery.  It hurt, but I didn't strain and exercised them prior to swimming by stretching as much as I could.  I don't know what the doctors would say about my approach but it worked for me, and the last lymphandectomy 11 years ago took away any option of favoring the "affected" arm.  Best of good fortune to you all as you move on

I elected to do this in February of 2012.  It all went fairly smoothly.  The JP drains were more of an inconvenience as I had them in for several weeks.  I did get an infection about 2-3 weeks post op.  I wound up back in the hospital on IV antibiotics which cleared it up,  2+ years later I have very few side effects.  I wear compression stockings or just compression socks when I fly or know I will be sitting for long periods.  On occassion I will get a little swelling in my ankle and foot but it never lasts very long.  I go to the gym 3-4 times a week with no discomfort.  Good luck!  Although it seems like the less easy path, I chose the surgery for my peace of mind.  Good luck!

Also had left axillary radical resection of lymph nodes in April of 2011.  Was able to work 2 weeks later when drain removed. I was very fortunate as you hear stories of lymphedema often following this procedure. I went for physical therapy as soon as surgeon O.K.d it  which really helped with mobility and swelling.

wish you the best!

Bruce

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

I had both arms done in 2012. I had nerve pain for about two weeks with the first arm, and the tube stayed in for about one week. The doctor said it should come out when the volume dropped to less than 15-20ml per day. I am a teacher and I decided to do the procedure during my march break so I wouldn't miss too much school, I also decided that there is no way I could teach with a tube sticking out of me, so I took it out at home. To my surprise the tube with the little holes was about 10 inches long. I don't recommend the do it your self home procedure. I ended up having to get the drain put back in by the end of the week and it took another two weeks for the level to drop down low enough to remove.  I went to a physiotherapist that had lots of back ground with breast cancer and lymph node surgery. Two years later I would say that my arm pits are not very pretty, but being 51 and past the shirt off phase of life I have learned to live with the look.  

I second the recommendation to start physical therapy as soon as you can after the surgery.  I really got poor discharge instructions after my surgery.  Basically for the 10 days following the surgery until my follow up appointment my arm hardly left my side. I should have been trying to gradually exercise and move my arm as much as possible during this time.   I didn't start physical therapy for a couple months after the surgery.  I still have restricted mobility in my arm as result of the surgery.  Fortunately I've only had occasional mild cases of lymphadema.