lymph node removal - would love some advice

I was diagnosed with stage 3, grade 3 breast cancer following a mastectomy in August 2016 and had sentinel lymph node removal. Two were found to be positive. I have just finished chemotherapy and am due to have the rest of my lymph nodes removed (intermediate stage they call it) in two weeks time. Whereas the chemotherapy was a no brainer given my diagnosis, I feel like the surgery could go either way. If they find positive lymph nodes then obviously I'll be glad I had them removed, but if there aren't any positive lymph nodes (which my doctor suspects) then I'm at risk of lpyphodoema for the rest of my life and the operation - as I understand it - will have been pointless. I'm 47 and don't mind about losing my hair etc, but being fit and active is really important to me. So...

1. I would love some advice from women who might have been in this position.

2. can anyone recommend a good doctor where I can get a second opinion on the lymph node removal.

Thank you!

x

22 Replies

oldest โ€ข newest
  • Hi Sash

    I completely understand your concerns, I too am worried about lymphodema (my surgery is due June/July). It seems to be a tightrope in terms of having lymph nodes removed or not. All I can suggest is that you push for a second opinion, I believe this is something you are entitled to. Good luck Caroline xx

  • Caroline, thank you! I've just reached that place myself thinking it would be good to get a second opinion. Just not sure where to try? I'm at the Royal Marsden and they have a pretty conservative approach to removing lymph nodes from what I understand... xx

  • These days they give you a nuclear injection prior to the operation so the surgeon can pinpoint with much greater accuracy. Before they just would strip out all the nodes and women suffered dreadfully.

  • Hi sashbash. I've just had exactly that decision to make. Just out and about but will reply fully later x

  • Hi Kazzerp, let's discuss! I'm also trying to find out if there are any tests I can do privately to establish whether my remaining nodes are clear...

  • Hi there. I had mastectomy last August and finished chemo 6 weeks ago. I had sentinel and 1 other node affected . I had exactly the same questions as you and clearly wanted to avoid any further surgery if at all possible. I was told about the POSNAC trial which is about the possible unnecessary removal of nodes. However this splits you 50/50 into two groups, either surgery or radiotherapy so you may end up in a group you don't want to be in so i declined . In the end after much thought and discussion I opted to have the clearance. I personally needed the peace of mind to know that there was nothing left. Luckily my results came back all clear. I did for a fleeting second think..bugger I needn't have had the op... but I am glad I did. I have been told today too that I won't need radiotherapy either so am well pleased. Lymphodema is obviously a concern but again it's pot luck(5% I believe) and I can do all I can to minimise my risk. I think it's great if you can get a second opinion too but at the end of the day you will have to decide what's best for you physically and mentally. Best of luck , let us know what you decide Karen xx

  • First they have to locate the nodes and they are tiny. I have never heard of any method of checking short of surgery, unless they can do a keyhole job, after the nuclear tracking. Maybe.

  • Can i just say, i had lumpectomies in October 2013, during the surgery 3 nodes in my right arm tested positive for cancer so all were removed, my left arm was clear so I've kept those, i too was concerned about Lymphodema, and 20 months ago after visits to GP ended with a biopsy due to dry flaky skin on my right breast, i was diagnosed with excema, but my consultant who did the biopsy looked at the breast and said you've got Lymphodema, a visit to the clinic soon followed where i was diagnosed with breast Lymphodema in both of them, my understanding now with Lymphodema is that no one knows who will or won't get the condition, some get it soon after surgery some not for many years, and until i was diagnosed i didn't even know you could get it in the breast area, however things work out for you, I wish you well x

  • Thank you for sharing your experience. Are you aware of anything you could have done to avoid it, and how debilitiating is it? Would it have made any difference to the decision that you made to have the surgery? Sorry, I'm so full of questions, and it's really helpful just to be able to talk about these things because I feel like I'm on my own here....

  • Hi sash, I was told on the Thursday morning that I had breast cancer, in both of them, lumpectomies the following Wednesday, I'm sure at some point i was told about the risk of Lymphodema, especially in the right arm, but it something that didn't really register with me due to the shock etc and the quickness of surgery, i kept it moving regularly, but i didn't even know until I was diagnosed, that it can occur in the breast, but that's a difficult part of your body to keep moving, am I glad I had the surgery..........YES!!!! If i hadn't, I wouldn't be posting this reply now, health unlocked also have a lymphodema forum, LSN may be worth looking at that

  • I have lymphoedema in my right arm after lymph node clearance (27 but they only took as many as they could get out -they said they were very sticky) and all were affected. This was 7 years ago. I had chemo and radiotherapy. I did my exercises religiously for 6 months and then thought I would stop doing them. Not long afterwards I started with the lymphoedema. It could have been coincidence and it would have happened anyway but my message is to carry on with the exercise a regardless.

    I haven't found it too debilitating so far except it is a nuisance using creams and wearing a compression sleeve every day. You do get used to the sleeve and it becomes a part of you.

    I cannot comment on having a second operation on lymph nodes because I was never in that position. All I can say is if it was me I think I would prefer to be safe than sorry but do get a second opinion. Good luck to all of you who have to make that decision xx

  • I had all my lymph nodes removed , had 28 and I had a spread in 27 .. This was 7 years ago .. And have never had any lymphodema ....I feel if you continue to always do the exercises they suggest , and massage as they instruct , you should be ok .. Xx good luck xx

  • Mandy, that's good to know... so glad you've had a positive experience...xx

  • I had a mastectomy with 18 lymph nodes removed. 4 were positive. Did my arm exercises religiously and have taken good care of my arm - no lifting, no blood pressure taken on that arm, no blood taken on that arm etc. My diagnosis was over 6 years ago and no lymphodema! I'm never complacent as it can occur at any time. Good luck with everything x

  • I started swinging my golf club after two weeks, was back on the course doing the short shots after three weeks. I've had blood taken from the 'bad' arm twice ( because they couldn't find a vein anywhere else), and once the silly nurse put a tourniquet on the arm! I gave her what for, but not before she did it ( it was just before chemo and I was hyped up on steroids, so didn't think). Anyway, I am aware of the complications, but so far so good for me. And good luck for your continued freedom from it Liz1.

  • I cannot comment from own experience as didn't have nodes removed it have radiotherapy, but I do know 2 people who have lymphodema one had all nodes removed and didn't have radiotherapy, the other had a mastectomy no nodes removed but had radiotherapy, I had no nodes removed and didn't have radiotherapy, I didn't get lymphodema, now I have heard that radiotherapy increases your risk of it, I think you should look at all the info you can, are you having radiotherapy as well?

    Good luck with your decision

  • Hi i had lymph node biopsy and 2 of the 3 were cancerous had my mascectomy on jan 26th no more cancer in lymph nodes gone in the boob and the ibc was clear having radiotherapy from next week to help prevent it from coming back just make sure when you have yr op do the exercises religiously i know its a pain but it works it gets easier big hugs Xxx

  • I was told there be lymph node removal but am unsure how many we have ! I had ten removed and 5 were cancerous. This was in 2010 and I developed lymphoedema in 2012 and wear compression sleeve. I am used to it. I swim to help but it has not reduced size much ๐Ÿ˜ˆ๐Ÿ˜ˆ but I have worked for last six years only having two periods of sick with cellulitis requiring iv antibiotics. Good luck with your journey. ๐Ÿ‘๐Ÿ‘๐Ÿ‘

  • Sashbash, I've only just read this, so you may have already decided on a plan.

    Based on experience I would be asking to have a CT Scan before they remove your breast. Just in case. They didn't scan me and they should have before deciding on my incorrect treatment plan!

    If it's any help, I had just two sentinel nodes removed and so far, there is no signs of having any issues with lymphodoema. My lymph nodes were clear anyway my cancer had spread via the blood.

    All the very best. ๐ŸŒบ๐Ÿ˜˜

  • Hey jac so sorry to heat you didn't get your scans! Did you find out why not? You poor love, my heart goes out to you. Pm me if you wish as I'd like to know how you get on but totally understand if not. Thinking of you and sending big hugs ๐Ÿค— xxxx

  • jacbowden, thanks... I've got a second opinion in the diary now for monday (the surgery is scheduled for wednesday)... but i've had all the scans going - CT, MRI PET etc I think and have been told that surgery is the only way of knowing whether my lymph nodes are affected. (I've had two positive sentinel nodes taken out at the time of the mastectomy 6 months ago)... hope you're ok? it doesn't sound good that youve had an incorrect treatment plan. the only advice i can give is that you're entitled to a second opinion on the NHS and it's always worth getting one... Good luck x

  • Hi Sashbash, I'm sure if you've had all those scans etc, they will be fully knowing what they are about. I'm in Australia and we have public and private health cover ( but somehow we still end up with huge 'gap' costs). I think my 'team' were simply being lazy or negligent. What I have read since, they should have known that my type of cancer is one of the most aggressive and advanced and prone to spreading but still they didn't order a scan to see what we were dealing with. I'm going to Sydney for a second opinion, however they have no cure for metastatic cancer so we really do have to look out for ourselves, which is the bottom line.

    I hope you are healing well and not in too much discomfort.

    Take care. ๐Ÿ˜˜๐ŸŒบ

You may also like...