Thanks you all for your replies. I see my radiologist today so will decide then.
I've been reassured that the prognosis is the same whether I have radiotherapy or more surgery. There's even a clinical trial, POSNOC looking at exactly this issue. In the trial, patients such as us (early stage cancer, with one or two lymph nodes involved) received no extra treatment to the armpit. http://www.posnoc.co.uk
I am definitely having chemotherapy and radiotherapy (to breast) anyway, so that does influence my decision as I feel my system will be being blasted to kill any cancer. My question to my radiologist today will be how good would radiotherpy to my armpit be at killing off any cancer?
The one thing that leans me to surgery is then I would know for sure if there was cancer in any of my remianing lymph nodes.
Corrina - good luck for Wednesday x
I'll let you know how today goes!
its a difficult choice. they found cancer i one lymph node after I had a biopsy of a swollen lymph node they seen on the scan. the surgeoun more or less told me the Multi Disaplinary team recommende I have a Lymph node clearance and said the only way they could tell for sure if there was cancer in more lymph nodes was to take them out and examine them. I was reluctant t have surgery to romove my lymphndesbut decided to take their advice as did not want to risk leavin lymph nodes in which may have cancer in them. now Im waiting to get my result from the op on Wednesday and hoping they did not find too many infected lymph nodes . then might not need chemo and just be able to go ahead with Radiotherapy..hoping whatever you decide it works out well. please let me know how you get on take care x
Making this decision was definitely the hardest part of the whole thing for me. I had one node affected and my surgeon was against full clearance. I think, as you say in your case, there was some bias involved on his part as he is involved in research in chemo and rads being enough for fewer than three nodes. He passed me onto oncology and I had just got my head around having chemo when I met my oncologist who was horrified at what had been suggested and I was thrown into real turmoil. I think what made it worse was that I had such faith in my surgeon who had been brilliant with me from the initial breaking the bad news that it was cancer, then having to up (down?) grade me to a mastectomy and who went on to do a great job of my reconstruction. My faith was a little bit shattered in the whole system and it really shook me up. I ended up having chemo first and told my oncologist I'd spend the time thinking it through.
In the end I opted for the clearance and, in retrospect, I'm probably glad I did. It took a few weeks to get over the surgery but I'm back to normal now and almost a year later no signs of lymphedema. In the end the remaining 13 nodes they removed were clear so it wasn't necessary but I do have peace of mind that there was nothing left over.
My BCN told me that unfortunately with advances in treatment there will always be some people who have these decisions to make. Just a bummer that it's us hey?
Good luck with your decision and ongoing treatment.
Thank you so much for all your replies. I know every case is different, but it's reassuring to hear other decisions.
My consultant also works at Univeristy College London, researching and developing radiotherapy treatment, so I wonder if this is his natural bias. It is also his area of expertise! I've spoken to a nurse too, and will discuss with oncologist tomorrow as she may give me a different persepctive.
I want to be in control of my treatment and recovery, but decisions like this are tough with no medical training!
When I had my SNB, I was told that should there be Lymph node involvement they would take me back in for further surgery to take them out and I would still be having the radiotherapy.
When I was waiting for my mx, I met a lady who had microscopic cells in her lymph nodes and decided to just have the radiotherpay, as she was worried about lymphodemia. It was only years afterwards (she is 6 years post BC) that she was told by her Oncologist, that having radiotherapy on the lymph nodes carries the same risk of lymphodemia as having them out. She said, if she had known, she would have had them out, as she has always been worried that the cancer was still in them.
It might be worth checking if this is the case and whether it would help you make a decision.
So sorry to hear that things turned out this way. And you are right, it is such a difficult decision to have to make.
It does often happen, that once the cancer and the initial lymphnodes are removed (SNB), that results can change, as all the removed tissue is examined under the microscope.
May I suggest a couple of routes to help you make your decision:
Call the helpline on this site 0808 800 6000 and ask to be put through to a nurse, which may be able to advise you about the pro and con of either situation.
Perhaps also post on the Ask Our Nurses board https://forum.breastcancercare.org.uk/t5/Questions-about-primary-breast/bd-p/primarybc
I personally know the choice I would make - but then I am not in your position, as my nodes came back clear.
Either procedure has its risk - and it may be a question of weighing up the risks.
Radiotherapy only is less invasive, but I personally would question, whether it would get rid of the tumour.
Having a lymph node clearance increases the risk of lympedema and needs recovery time, but at least the cancer is gone.
Hence, in the short time you have - it may be wise to seek as many opinions of professionals, as you can.
I hope someone, who has had a similar choice to make will post in time - to also help with the decision making process.
Don't know if anyone else has had this scenario. Two weeks ago I had lumpectomy to remove 23mm Grade 3 IDC. They also removed two lymph nodes (which looked clear pre surgery).
I heard yesterday that they got clear margins around my breast tumour and my cancer is stage 2 (I was hugely relieved!). However, one lymph node had a 2.5mm tumour. So, consultant said I can either have surgery for further lymph node clearance or radiotherpay to the area (alongside the radiotherapy I would have had anyway). He favours radiotherapy, but it's my choice.
I meet my oncologist tomorrow to discuss.
I'd welcome any experiences/advice.