Dear charlotte, Of course you can ask! You can ask me anything and I will be completely honest. I haven't had any problems with my arm at all. I'm like you and love getting into the garden. We have a very overgrown and neglected garden, which we inherited from the previous owners, and before Christmas I was out chopping limbs off trees, pulling shrubs out and digging! Obviously I am careful always to wear gardening gloves so I don't cut myself, but so far so good. I don't think the risk of Lymphoedema is very high, especially if you remember a few simple rules about taking care of your skin. You also have to remember that you can't have blood pressure taken on that arm, or any blood tests or injections. Also I wanted to let you know that I didn't have any problems with arm movement at all. In fact my arm and shoulder movement was a lot better than when I had the sentinel node biopsy a month earlier! I was lifting my arm above my head the day after the op. There is nothing I can't do now that I could do before. I hope this helps xx Lily
Lily, can I ask, have you had any numbness or impairment in that arm? It sounds as though you didn't have any problems at all.
I'm worried by people saying they have long-term numbness, and by the need to take so many precautions against lymphodoema. I love gardening, and I have a fairly wild garden! I don't plant bedding, I wrestle with trees and shrubs. I don't want to give up that. Also, I write and do a lot of creative things, so I don't want anything to take away my ability to do that.
Very wise words from Lily there and so true.
Oh that is really good that you have an appointment with the consultant at least you will be able to get the information you need. We all know that feeling of how on earth do I get through this, but you do and you will xx
I understand the "this feels different". I felt that when I was diagnosed, I was born with SPina Bifida and had many ops during my early years, which I suppose I just took in my stride as they were part of me, but this was different, I had never experienced anything like this personally and it scared me, and in time you will have the confidence to get through this as well.
Remember we are always here for you, whether you want to laugh, rant or cry, you are in a safe place here with ladies who really get it.
Thank you - that's exactly how I'm feeling.
I now have an appointment to talk things through with the consultant.
Am still weepy and can't quite believe I'll get to the end of this or be as strong as you describe. I've already had to deal with a lot in my life, and I was strong in dealing with that and I've made it through (sometimes by the skin of my teeth) - but this is something different. Not better, not worse, just different. At the point where I felt I knew how to llve with the other issues, and felt confident about doing that, along comes this. More lessons to learn.
Dear charlotte, I completely understand what you are going through, as will everyone on this forum. We have all been where you are now, when the fear and panic overwhelm you and you feel absolutely beside yourself. Please believe me when I say that it will get better and easier. I didn't believe it but it IS true. And we are not really brave - we are just the same as you - having to go through things we don't want to, but we are still here and getting stronger everyday. You will too, and this will be a memory that doesn't consume your every waking moment. You will cope with your treatment and if you take each day at a time you will find it easier. I tried to keep as busy as possible and also made sure I did something nice every day - just little things like going for a walk in the park or buying a little treat. This may sound facile but it really helps. Keep coming here for support and don't make any decisions without talking to your bcn or doctor. They will explain to you the finer details of each treatment, and you will soon feel calmer and more in control. Sending you a hug xx Let us know how you are - we will always be here. xx Lily
I think it's really hitting me about the whole cancer thing right now. I'm crying now and that's the first time since this began. I don't know what to do for the best - overall, I mean. If I knew there would be a good outcome (in terms of the cancer and the side effects) I would go for it. But if there's a bad outcome, I'd rather just be me, as I am now, for whatever time I've got left.
And who knows? Maybe there's no more cancer in the other nodes (in which case I begrudge going through the op!) and then maybe radiotherapy will fix everything. Or maybe it will be yet more bad news. The uncertainty of all this gets to me, the feeling of being trapped and hurtling towards something I don't want. You brave ladies go through so much, and I feel like I've fallen at the first hurdle. Today I feel like I haven't got it in me to do any more.
I've had two people in the family die of cancer at about my age, and it just feels like everything is taken away from you, a bit at a time, while you suffer. This is really colouring my view of my own situation. But then I know someone else who had it and she not only survived but many years later, you'd never know she'd ever had it. Everybody's case is different. I don't know what mine will be. I don't want any of it.
I'm just an emotional mess today, and it's been building up - I don't see how I can have this op in this frame of mind. Yes, I'll call the BCN again, and I've been writing things down. I'm so afraid my mind will go to mush when I speak to her. I spoke to one of the lovely nurses here yesterday, and she was great and we were discussing factual, practical stuff - but I kind of went to pieces after that call.
A practical question: I'm worried about the after effects of the operation in terms of using my hand/arm. Has anybody got any advice about/experience of that, long & short term?
Hello charlotte457, I had an axillary node clearance last July and wanted to reassure you that it isn't as daunting as you fear. What, in particular, are you concerned about? If it is recovery time etc., my experience was that it wasn't as sore as the sentinel node biopsy. They will make an incision along the sentinel node biopsy scar so you won't have an additional scar at all. The only difference I found was that I had to have a drain in overnight but this was removed the next morning. I haven't had any sign of lymphoedema at all so far, and if it were to occur then there would be help available to deal with this. I know how scary it is to face more surgery, but I personally felt that I wanted to make sure, as much as I could, that any affected nodes were removed. As Helena has said, write down all the questions you have and hopefully your bcn will call you back today so that you can talk it through with her. You don't have to have any treatment that you're not happy about, so I hope you will be able to come to an informed decision about it. You could give the helpline on here a call - they are lovely and will listen and help you. Sending you best wishes and take care. xx Lily
I am so sorry that you are in this place at the moment, hopefully your bcn will call you back soon, she might be in clinic this morning so unable to call, She should be able to provide you with some more information
Can I suggest that you write down all the questions that are going through your mind so that you do not forget anything. remember there is a lot of misinformation on the internet and you need to ask the questions of the those who are the experts.
Let us know how you get on xxx
Hi, following my WLE & SNB I'm due for axillary node clearance on one side. I don't know if I can go through with it, and I'm feeling a bit lost and abandoned as there's been no contact or info from the hospital since my interview with the consultant following the last op. I tried calling my BCN (for the first time) and left a message, but haven't had a call back.
At the interview I asked if there was any alternative to the op, other than walking away, and was told no there wasn't. But in researching, I've found that (a) radiotherapy to the armpit is a possibility and (b) a study showed about a 1% difference in survivability between groups of women who did & didn't have ANC. That's only one study, and I don't have all the details of my own case or their cases, but if those were my odds, I wouldn't have the ANC.
I don't know what to do and feel I need more time. I'm just not ready for this.