I fear that I may be making a fuss about something that I cannot control, and I am a bit of a control freak! I recently was diagnosed with early breast cancer, with a tumour of about 8-9mm. It is ductal and invasive and oestrogen receptive. I am very unhappy at the prospect of a 5% risk of developing lympoedema after the Sentinal Node Biopsy. The nurses tell me that the risk is not high, but a 1 in 20 risk does not sound like a low risk to me - after all the risk of getting breast cancer according to some questionnaires was only 1.1% for someone like me but I still developed it! I am a naturally clumsy person, always dashing about, always scratching or cutting herself without even noticing it, mostly from being an active gardener - brambles, roses, sharp knives in the kitchen you name it. We were also looking forward to travelling more to exotic places - where insects will definitely bite me! So I see myself as an ideal candidate for developing lympoedema, unless I stop doing these things and wrap myself in “cotton wool” all the time. Is there no way of negotiating a way out of the Sentinal Node Biopsy - can they not check my lymph nodes another way?
Hi Lola
Of course you can choose to have or not have any treatment, no one is forcing you to do anything.
At the moment t I don’t think there is any other way to determine if the cancer has spread to the lymph nodes except by snb. I think ultrasound can give some indication but is not foolproof. So by not having the snb you risk allowing the cancer to spread.
Things have improved, when my mum had breast cancer 35 years ago snb had not been developed and there was no alternative to full node clearance.
But at the end of the day it is your choice.
Mary
Hi Mary thank you for your reply. I meant that I did not expect the consultant to force the sentinel node biopsy on me - just that i feared that there will probably be no sensible way to avoid it. As you say without it there is a risk that I will allow the cancer to spread - and I’m bound to worry about that too! I am interested in finding how others handled the dilemma?
Hi Lola
I had my SNB a year ago next week. My best friend had full node clearance several years ago and developed lymphoedema so this is something I was very concerned about.
Like you, I am a naturally clumsy person and if there is any kind of biting insect within 10 miles of me it will find me. I also react badly to bites and frequently end up on anti-biotics, even in this country.
For me, the risk of the cancer (which I already had) having spread to the lymph nodes was too big a risk for me to leave unchecked (despite there being no obvious signs of swelling/enlargement on the ultrasound) compared to the possible risk of lymphoedema (which I might never get).
A year down the line and my lifestyle has not changed - I’m as clumsy as ever but I am more aware of my arm and any cuts/grazes/burns etc. I still do my gardening (I’ve bought a good pair of gardening gloves but generally forget to use them!). I’ve been on three foreign holidays and carry anti-biotics with me so I won’t have to wait to see a doctor if I think any bites have gone funny - and I am more sensible now about using mosquito repellant which (unsurprisingly) actually does help (wish I’d thought of that years ago!)
I am aware of the risks and take sensible precautions that don’t impinge on my life, activities or my enjoyment of them with the knowledge that there was no spread to my lymphs and for me, the relief I had when getting the SNB results was worth it.
Good luck with your decision and treatment
Lu x
Thank you for your replies which are really helping me think things through/ come to terms with things. I am beginning to realise that all of my moaning is just part of the shock about having my life turned upside down - the routine breast screening appointment (that I nearly cancelled) was only on 25/7/14! And of course I am lucky that they caught the cancer at such an early stage. Unfortunately I am not one of those that feel comfortable handing complete control over the professionals. What is common practice today may change next week, next year, and like all of us with breast cancer it’s not an ideal situation knowing that a better way has yet to become established practice. The care I am being offered appears fantastic and I consider myself “lucky” but it is personalised in that it is addressing my cancer, not me and who I am, and I do realise that personalising it completely may not be realistic. As I have not yet met the man who will do the operation - a last minute shuffle to another consultant due to holidays etc - I have now made an appointment to explain my concerns to him - at least he will know in advance of the big day.