Hi. I was 1B2 and had it In June.
As I said, I had more than sentinel nodes but I can find my letter to email to you if it would help to discuss with your surgeon? It is very personal to me but I know just how scared you are right now and if I can help at all, I will.
Sending all my love
Louise
Hi Deb,
I said I would get back to you about my trip to Oxford regarding lymphodoema.
It went very well and the lymph scan was useful. My lower legs are not affected and my right isn’t bad enough for treatment. However my left upper leg, which is huge, is badly affected and fluid is spilling over into my lower abdomen. I am a good candidate for surgery and have 85 per cent chance of about 50 per cent reduction. I am awaiting results of the MRI scan and then need to make a decision about the surgery which is a whopping 17k.
However, its important to recognise that it has taken 25 years to reach for me to reach this point. If i had my time again i would still have lymph nodes removed. They found cancer in five of them and if they had not been removed we wouidnt have known that had happened and I wouid be dead today.
Lymphodoema isn’t inevitable. Only you can decide what’s best but to me the threat of undetected cancer mets outweighs concerns about lymphodoema. The treatment of which will surely improve,
Karen x
Thanks Karen. I am so glad that you have help in view. I hope that you can find the money to do it for the sake of your quality of life. And I agree, that the lymphodama is preferable to dying early of cancer. I have found two research papers just now which back up what my surgeon has told me, that the conservative approach - sentinel node removal only - is not a great idea for more advanced cancers than 1B1.
Hi- it’s come up with a few: is it Debbie hunter working at East Winch?
It’s really not safe-this is a public forum open to anyone to see.
I would remove your fb id too- it’s better to give these details by private messaging the other person on this forum. You just don’t who looks on here and can steal your info.
Ah! I just found how to PM someone here!
Thanks for your concern.
I have encountered some very odd people on the internet so would never give my details anywhere public online. Private messaging is definitely safer!
Did it not show on your scans MRI and CT that it had spread to them? X
