Do I need to have my lymph nodes removed?

I had a mastectomy 2 weeks ago (left breast) and a sentinel node biopsy. When I went back for the results last Wednesday I was told that 1 of the 3 nodes removed was affected and they have recommended that I have a node clearance now.

My biggest fear is that I am an active person (only 45) and obviously there is the risk of damage to nerves during the operation and also lymphoedema in the future.

I am not worried about the surgery itslef as I have recovered very quickly from the mastectomy.

Any ideas? I thought taht the follow up chemo that I would be getting and possible radiotherapy would deal with any spread of the disease.

Hello langdon

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June, moderator

Hi there,

I am not sure if this will help.

I have just had a second diagnosis of breast cancer. First time around 2/4 nodes were involved and I had a clearance.

I had a SNB on Saturday and they did the clearance there and then, so I now have no lymph system on either side!!!

Like you I worry about the future but I can reassure you that following the last clearance (2 1/2 years ago) I suffered no ill-effects.

I think if there is cancer there, it needs to come out.

Hope this helps.

Good luck, Rattles x

Hi Langdon,

In answer to your question "Do I need to have my lymph nodes removed? my answer and what I would do is yes, most definitely yes, I had 13 lymph nodes removed so far have not developed lymphoedema there is some nerve damage feels slightly numb but that seems to be getting better and I use exercise my arm daily.

Out of the 13 taken out only one was found to have cancer but we already knew the cancer had spread onto both lungs from my original dx at age 43 back in March 2011, I did 6 x neo-adjuvant chemos, followed by full mx with aux clearance. If I was told that I had cancer in only one I would still have let them take all 13, my view is get rid, cancer is sneaky and loves to hideout in the lymph nodes, and thank god you’ve caught it early enough before it could spread.

Sorry if this seems a bit strong but if you can avoid a lifetime on herceptin cause thats what I got to do take herceptin by IV every 3 weeks for life or until it stops working and I’m lucky that herceptin works for me.

Hoping you make the right decision.
Sending love and light
Sarahlouise xx

To reassure you - I had mine removed five years ago when I was 44. I am very active, I run, I swim, I garden. I take sensible precautions, and still do exercises on a daily basis to prevent lymphoedema. So far I’m fine. I have several friends who have had BC, and they are all fine too.

To echo what Roadrunner has said - mine were removed a year ago and I have full range of movement, I garden and horse ride.

There have been a number of clinical studies done on Axillary Dissection vs No Axillary Dissection for Women with 1-2 affected nodes, attached is a summary of findings and many clinicians now question the need for radical
axillary surgery in these circumstances.

jama.ama-assn.org/content/305/6/569.full it has also got a list of papers on the subject which you may find helpful.

mskcc.org/news/magazine/july-2011/study-leads-new-recommendations-surgical-treatment-breast
This is from Sloan Kettering in the US explaining the current thinking.

Good luck!

I had no choice in the matter, I woke up to find because the sentinel node was affected, that they had removed them all while I was under.Meant only one op and I probably would have said yes to clearance anyway…no nodes means no underarm radiotherapy which is one positive thing.
Best of luck with your decision.
Mary M

Dear Langdon

I had 15 cancerous lymph nodes hence I had full clearance with clear margins. I have been fortunate not to suffer much but I do take care of myself. I enjoy yoga and swimming and feel this is very helpful. My surgeon told me that although it is called “full lymph node clearance” not all my lymph nodes will have been removed - the deeper ones outwith the required margins will still be there. This helps to avoid lymphoedema as my lymph system will still be able to operate albeit with much less lymph nodes.

Wishing you well.

Jeannie

Dear All

Thank you for your time in responding to my post - your comments have been very useful in helping me to make a decision. It is particularly good to know that so many of you have had lymph nodes removed but have not suffered the side effects.

What a wonderful forum!

Claire

I was worried too.

Dx 4 years ago with 3 of 24 nodes involved, I had a clearance too. It’s never bothered me at all. I have full movement, have never worried about any activities and my life has gone on as normal.

It does ache sometimes when I’m doing my weights, or if I take my grandkids bowling, but my life really is just as before. I have adjusted.

Mal x

Just jumping on to say I had level 3 clearance and did have cording and a lot of stiffness afterwards - but I exercise (pilates, swim, garden,) and its better all the time but I had to be really really focussed on the exercises at the start even tho they were not pain free!
N