Hi I am new here and I wanted to ask for help I have been diagnosed with breast cancer and have had a biopsy on the nodes and a blood test and they came back clear but the Dr is saying I need to have some nodes removed I have read up on this and concerned about lymphedema the breast cancer nurse said that they will only take out two and then at the end of the conversation she mentioned four being removed. Do they need to come out, the 9mm cancer is at the bottom of the breast and is nowhere near the nodes! Also has anyone had the same op and had no problems with lymphadema. I go into to have a pre-op assessment tomorrow as the operation has been brought forward. It all feels so rushed and out of my hands. Thank you in advance.
Hi veggiepie
I am really sorry you have been so worried about this op. I think the answer is yes, you do need to have a few lymph nodes removed in order to check whether the cancer has travelled to the nodes, as a fine needle biopsy (I assume that is what you had done earlier) could miss some cancer cells. It’s really important to know whether there is cancer in the nodes, it will determine your treatment plan and your prognosis. I don’t think the position of the lump makes much difference. The risk of lymphodema is higher when all the lymph nodes are removed - I had all 33 removed after the 5 sampled were all positive, and have had no problems with lymphodema at all. I don’t know the figures on the lymphodema risk with a sentinel node biopsy, but your onc should know and should explain the risk as part of your discussion before you give consent for the op.
finty x
Hi Vegiepie
You should be happy to be having this op now and not five years ago. Then All nodes were removed as a matter of routine. It was thought this was better than taking a few, testing ,then having to go back in. As a result far more people treated with BC ended up with lymphedema than now. All mine were removed and they were all clear. I have lymphedema but I’m happy to know I’m Ok.
I sometimes think we worry too much about side effects. I’ve been on tamoxifen so I know about those. By having nodes removed they will find out things that may save your life.
I also know that I’ve just got my five year all clear and I’m very glad the Medics did what they did.
I’m sorry this seems a bit harsh I don’t meen to be.
Good Luck I hope it is only 4.
Chinook
Hi veggiepie
Is it a sentinel node biopsy that is being suggested? I had this 3 weeks before the wide local excisions and this procedure involves only minimal nodes being removed. You say you’ve had a clear result from a node biopsy already, so not sure how this works. I had one node on left and three on right removed, all clear, which made me more confident in going for conservation over bilateral mastecomy - I had 2, but small and hormone receptive. I also had 3 months in which to think about it as I suffered a bit from overinvestigation and lost of tests and waiting for results. It sounds as if you have good signs. Also I think some places don’t offer sentinel node biopsies as surgeons have to be trained. We only have one in our area so far, but I feel its worth pursing, rather than having lots of nodes removed unnecessarily.
Good luck and take care
Sheila
ultrasound, FNA and core biopsy of the nodes is around 70% accurate, however a sentinel node biopsy which usually removes between 1 and 4 nodes is over 95% accurate.
the reason the nurse maybe says 2 or 4 nodes is that they do not know how many sentinel nodes you have until they open you up and put the blue dye in… there is a some evidence which suggests they should take a minimum of 4 nodes altogether and these can be a mixture of sentinel nodes and a random sample.
how they do the sentinel node biopsy varies across the country eg at my hosp they have been doing it during surgery for at least 7 years… although this may not have been standard across the UK… some units do it a few days before and some send you for your blue dye injection just prior to surgery… but as chinook says this hasnt always been the case and previously they would just look at a random sample of nodes and not the sentinel ones which are the most likely route that any cancer cells would travel… and prior to this they would normally have taken all the nodes.
the risk of lymphoedema increases with the number of nodes you have removed… some people have all their nodes out and never get LO and some people have 3 or 4 removed and do suffer from it, but its much less likely… and there are certain things you can do to help minimise the risk eg trying to prevent getting cuts and scratches or getting infections in the hands and arms, not using a wet razor when shaving underarms and not carrying heavy laods or causing lots of stress and strains oin your arms on the affecred side.
good luck making your decision i know its not easy and lymphoedema is a real pain in the butt.
Lulu xx
ultrasound, FNA and core biopsy of the nodes is around 70% accurate, however a sentinel node biopsy which usually removes between 1 and 4 nodes is over 95% accurate.
the reason the nurse maybe says 2 or 4 nodes is that they do not know how many sentinel nodes you have until they open you up and put the blue dye in… there is a some evidence which suggests they should take a minimum of 4 nodes altogether and these can be a mixture of sentinel nodes and a random sample.
how they do the sentinel node biopsy varies across the country eg at my hosp they have been doing it during surgery for at least 7 years… although this may not have been standard across the UK… some units do it a few days before and some send you for your blue dye injection just prior to surgery… but as chinook says this hasnt always been the case and previously they would just look at a random sample of nodes and not the sentinel ones which are the most likely route that any cancer cells would travel… and prior to this they would normally have taken all the nodes.
the risk of lymphoedema increases with the number of nodes you have removed… some people have all their nodes out and never get LO and some people have 3 or 4 removed and do suffer from it, but its much less likely… and there are certain things you can do to help minimise the risk eg trying to prevent getting cuts and scratches or getting infections in the hands and arms, not using a wet razor when shaving underarms and not carrying heavy laods or causing lots of stress and strains oin your arms on the affecred side.
good luck making your decision i know its not easy and lymphoedema is a real pain in the butt.
Lulu xx
HI veggie pie,
sorry its all felt like such a rush. I had 13 lymph nodes removed a year ago and was really worried and am still really worried about lymphadema - I searched forever for something to show how to contribute to preventing it if you are lucky enough for it not to develop immediately - look up The Haven and they have a great leaflet that tells you what to do and not to do and best of all exercises - much better than anything else I’ve found in a year of looking. The good thing is it now makes me feel a little more in control rather than just waiting in dread of lymphadema…
in the end the medical team need to help you make a decision about the balance of risks , ie removing some nodes with lymphadema risk versus survival if not removing nodes…
very best wishs Nicola
Thank you all for the information, it is the sentinel nodes as the nurse mentioned this on the phone, I go today for the pre op assessment and so I will talk more to them. I appreciate you have all gone through your own hell and also that you took the time to give me advice. Stay well. Veggiepie