Having lymph nodes removed from underarm

Thank you all for taking the time to give the benefit of your experiences.  I have spoken to my surgeon again and this conversation coupled with your comments have made me feel more comfortable with the treatment advised.  I think I can cope with the after affects, whatever they are.

Hi Sheilasjs, I had a mastectomy with Lymphnode clearance done 7 weeks ago.
I had a 3mm cancer in one Sentinel node at my first lumpectomy operation. 
I also had two lumps removed and a DCIS with multiple foci were also found which meant chemo and mastectomy.
At mastectomy, 20 further lymphnodes were removed, clearing levels 1,2 and 3. That was underarm and the upper chest near my shoulder.
Fortuately they were all clear, but it is a double edged sword, it also means they probably didn't need to be removed, but there was no other way of knowing.

Initially the site under the arm was fairly painful and required a drain in for 10 days, then I needed to massage it to remove a bit of a fluid lump there each day for a while.
I am now having radiation 1 week in, and the area has swollen up again, presumably with fluid.

I am seeing a lymphodema physio, have a sleeve and have to do lymph massage each day. My arm has swollen up a little on long days where I have carried bags of shopping with it, and it aches in the shoulder area at times.
I was very worried about lymphodema when I heard they had to be removed, my work and hobbies do not lend themselves to problems with that arm or wearing sleeves. I am seeing a psychologist to try and deal with the anger and depression issues that has brought up.
I can see I am going to have to live with this for the rest of my life.

My surgeon said that the risk of lymphodema was only about $20% after clearance, but the radiation Oncologist said that radiation increases that to approx 30% of patients.

Apart from the lymphodema issues, constant awareness of not having blood taken or blood pressure on that side is important. Being aware of insect bites and not scratching them, but using creams instead, treating scratches straight away and trying not to get the arm injured in any way is a problem for me.
I garden, am a dog groomer, have a horse, these things all carry problems, and I am not used to considering them.
Typically I have just lost two finger nails as a result of chemo side effects and it is on that hand.

I am sure I will get used to the added body care and concern, physio visits and self massage I will have to do but right at the moment I am chafing against it.
Physically though, apart from the radiation side effects I am now experiencing, it is not painful where they were removed, and it is not obvious except for a little hollow under my arm.

If you are one of the lucky ones who does not get lymphodema, it will just be the added vigilance in not injuring the arm that you will have to worry about.

My surgeon was not willing to take the risk of cancer being in the other nodes after the sentinel was shown to be affected, so she was adamant they needed to come out.
My cancer was reasonably advanced in that there were foci all through the tissue taken from two quadrants of my breast, and the main lumps were 3.2 and 2.2 cm in size, so that was also a consideration.
I am not a gambler so I did not dispute it, inspite of my dismay.
Maybe the radiation would have been enough, but as there is no way of knowing I erred on the side of caution.
Now I just have to live with it.

You just need to weigh up the known side effects of removal with the risk of not removing them and then decide what you can live with.
There are so many unknown factors that making an informed choice is almost impossible.

Good luck with your decision, Jennie

Sorry I am an idiot! Of course you are having the lymph nodes removed surgically!! So sorry, misread that bit. Rest all stands though!

I can't comment on how many lymph nodes will be removed (but you should certainly ask your surgeon) or on removal of the nudes by hormone therapy and/or radiation as mine were removed surgically. If you are concerned about lymphoedema, then you need to ask specifically about the incidence with that kind of treatment. The stats for lymphoedema caused by an axillary clearance are about 20% - 50% depending on how many nodes are removed. So you may not get it, but onset can occur years after surgery. That's the bad news. The good news is that when detected early and managed properly, it isn't that bad. I've had a lymphoedemic arm for over 4 years, I do wear a pressure sleeve, massage and exercise but I have no pain or heaviness, swelling is minimal and doesn't affect what I wear, and care is not onerous. The big question is how does the fear of lymphoedema balance with the fear of cancer spreading? I had one clearly malignant node and several others that looked extremely suss on ultrasound. I lost 17. No regrets. So I would suggest you ask specifically about how many nodes will be targeted and the stats for this type of treatment of the nodes before making what is ultimately your decision. It's hard though, just one more thing to have to think about. Take care.

Hi there Sheilasjs,

I am sorry you are faced with this.  I also had early BC with only one lymph node enlarged on ultrasound. (November 2016) After biopsy,my surgeon recommended all lymph nodes to be removed as he thought it wasn't worth taking a chance and having to come back for further surgery or risk not catching microscopic cancer spreading further. The pathology report came back showing 17 nodes were removed and two were cancerous.  (also had a lumpectomy at same time).  I had chemotherapy and radiotherapy.  So far have not really had any problems with affected arm apart from a bit of cording which has been dealt with by a lymphedema physiotherapist.  That was the right choice for me.  I felt the risk of not having it done far outweighed the risk of surgery complications.   Probably best to talk this over with your surgeon.  Be careful with your research as you can be bombarded with too much information which sometimes not up to date.  The BCNA can recommend appropriate sites for you.

Best wishes to you
Sue P