Hello everyone, I have recently been diagnosed IDC, Grade 3, two-foci. I’m having surgery later this week (Thursday) but I am still concerned about the need for a full ANC (all levels removed) as recommended by my Con. One abnormal-looking node was identified with ultra-sound and an FNA sample was taken and found to contain some cancer cells. I believe this was in the slipper area of the breast so Level 1. This rules out SNB. I am worried about the risk of lymphodaema and that the risk increases if all lymph nodes are removed. I can’t help thinking that if chemotherapy (which I am likely to have as part of my treatment plan) is supposed to destroy every cancer cell in the body, then surely it would destroy any stray cells in the remaining lymph nodes? I have spoken with my BCN and she suggests I speak with my Con just before surgery to see if I can opt for a lower level instead. Would welcome any thoughts you might have. Thanks in anticipation and sorry it’s such short notice!
Hello Elma55
Welcome to the forums, this must be a very difficult time for you. I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Hi Elma. I had a mx and ANC 3 months ago. There is a risk of lymphoedema wether you have one or all removed. My view would be to ‘throw everything at it’ and give yourself the best possible chance the cancer cannot spread and also to put your trust in the bs and the team. Good luck and hope all goes well on Thursday xx
I also had a bad lymph node found on ultrasound so skipped the SNB. I also ended up having them all taken out although I did ask about them leaving some.
I wish there was a chemo that could always kill every single cancer cell in your body. Then we wouldn’t need surgery, radiation or hormone treatment and there would be 100% survival.
The majority of people do have a response to chemotherapy, but often it is only partial. The chemo shrinks the cancer, but it is still there. However some people do a complete response from chemo in their main tumour and some ever have a complete response in both the main tumour and the nodes. If this happens the prognosis is greatly improved.
But they can’t predict in advance which people will respond to chemo and of these whose response will be complete.
Thanks Melrose15 and BlackSwan for your helpful comments. I think I know deep down that the risk is a small price to pay given my circumstances. So good to be able to share this with you, thanks again!
I dont have a personal experience of this (will be having SN biopsy in 2 weeks) but my mum has had bilateral breast cancer and so had lymph nodes removed from both sides. On one side she has developed lympodema (she was treated 11 years ago)and the other side (treated 3 years ago) she is absolutely fine. From what she has told me, treatment has moved on alot since she was first diagnosed and when she was treated 11 years ago the radiotherapy was pretty extensive and may have contributed to lymphodema. The more recent treatment was much more localised and this arm is completely healthy.
My mum in the beginning got down about her lymphodema (only because her right arm is larger than the other one and find it difficult to find clothes) but to me I don’t notice it. She has to wear an elasticated sleeve to help minimise fluid build up, has treatment every so often but other than that she can forget about it has full use of her arm.
At the end of the day she is glad that she had the lymph nodes removed as it has given her peace of mind which she wouldnt have had and at the end of the day lymphodema is a small price to pay for this. Even with having lymphodema on one side getting it on the left side was not a major concern for her 3 years ago when treated again.
So I guess I am saying go with it, good luck and the chances are you’ll be fine and even if you do develop lymphodema in the future it is not the end of the world.
Hi Elma I had my lymph nodes removed and a lumpectomy in November 2012. I asked them about leaving the good ones as I only had 3 bad ones that they had found in advance of my op, but to be sure it could not spread they took them all. Just be prepared for not being able to move your arm very much afterwards. You will get exercises to do and it is better if you try to do them as often as possible. If you are like me you will think your arm will never be in full use again but it is amazing what you can achieve in a matter of weeks. In the end I think removing all is the best and it gives you more peace of mind for the future. I have now had 2 ops, chemotherapy and just finished radiotherapy. Good Luck for Thursday. If I can help you with anything during your recovery or before Thursday just contact me.
Vi
Hi elms, I had wle and full ANC on 18 th June, had 2 nd wle yesterday, no probs with wle. At first arm feels wired after ANC exercise is everything, I have a sunburn feeling on inner side and back of arm which is slowly resolving and it can be difficult to get comfy in bed, but have been assured that although arm will probably always be numb sunburn feeling ill go and it is much better. Under my arm ivac completely numb and I’ve been told that’s forever. To be honest it’s a small price to pay , all lymph gone I had 4/25 positive so no brainer for me, you soon get used to it. Obviously you have to be careful as a risk of lymph oedema I’ve been referred to clinic before I might have any problems, so far so good touch wood, opefully after chemo radiotherapy won’t cause problems, but if does il deal with it then. I took advice of surgeon and I’m glad now it’s over, good luck it’s not the nicest of procedures but for me I had to do it x
Thanks laura_c, Vicowie and Lols, feeling much more confident about full ANC following all the positive feedback from everyone.
Hi Elma,
Im another who’s had mx and full anc (5/12) and like everyone has said, its the numbness and the burning sensation thats the worst, but the burning bit does go. I would recommend doing the exercises religiously as it really helps. Im 2 months on from surgery and have 100% movement back and a lot less numbness. Keep the arm moving but dont over do it.
Good luck
Sound advice artemis17, thanks!
Just thought I’d update for the benefit of anyone looking in…so glad I took everyone’s advice and agreed to full clearance (actually level 2) as I had 12/15 positive nodes. Resulting CT and bone scans were clear so no spread detected. Regained full movement in ANC arm although still numb in underarm area due to surgery.
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