Hi, my bcn messaged my consultant she was fine, to say she had spoke to me and advised a face to face. The nurse should be fine, if your consultant mentioned the axillary clearance best speak to him or his secretary I would of thought. My bcn could not view my oncoplastics mdt information which is why I requested to see my consultant best wishes xx
Hi, it was a telephone call, my consultant spoke but a bcn was with her. Then I have seen my plastics consultant about my next surgery but wanted to discuss it with my breast surgeon so they arranged a face to face, hopefully then will be booked on list for surgery and will be informed of a date. My lymph nodes was clear and my tumour removed. Was your given any sizes or grades. It's just I still have an area of dcis to be removed, so want surgery for that now xxx
Hi I have had very confusing experience and please excuse the length but it is complicated. When I received the letter confirming diagnosis (3 weeks after receiving the diagnosis over the phone and 6 weeks after the lumpectomy) I was surprised to read that although cancer was only found in only one sentinel lymph node it had 'extracapsular spread'. I was given no further information and so obviously researched - it means that cancer cells have spread outside the lymph node. At about the same time I received the result (over the phone) of the Onctotype test which was a good low result. I was told to expect an appointment face to face with an oncologist to discuss treatment. Because of delays a special clinic was set up to catch up and nearly 3 weeks later I saw an oncologist who explained that because of the extracapsular spread it was advisable to have axillary clearance as well as radiotherapy to the breast axillary lymph nodes lymph nodes near the throat and tablet treatment. I was offered a date for the axillary clearance operation. Two days before I received a call from the surgeon who said that because the spread was 'micro', treatment by radiotherapy and tablet would be sufficient protection and the operation was cancelled. My breast nurse said that I would hear shortly about radiotherapy. I am still waiting to hear and I have chased for a date. It is now 12 weeks since my breast operation and I am anxious that it is all taking so long, particularly as the cancer had spread. I have started the hormone and biophosphate tablets. Can anyone put my mind at rest?
Hello ba1950. Your experience is similar to my mum. how many sentinel nodes did they remove initially?
besides this, I think you should call again for the radiotherapy treatment. Having said that, my mum had her surgery 7 weeks ago… and we are still waiting for an appointment to talk to a oncologist over the phone.
I am sorry to hear of the confusion over what the treatment should be, now that you have had your results. I think if it were me to whom the above had happened, I would be wanting some more clarity about why they are now recommending no surgery. From what you say, there seems to be variance of opinion between the surgeon and the oncologist about about what is the best treatment for you. Tricky one, especially against a background of the clinic subject to delays and measures to catch-up.
I am very lucky that my oncologist and my surgeon are of one accord about what is best for me, and it also conforms to what the NICE Clinical Guidelines and some more recent academic papers on the results of clinical trials for treatment of my type of breast cancer suggest.
I would phone McMillan and your GP and talk it through with them. I would also, first thing, phone the oncology BC nurse and the secretary of your oncologist and ask for an urgent appointment to talk things through face-to-face. Explain that you are complexly confused now, and that your confidence in the latest suggested treatment plan has been shaken and explain why.....
It is really important that you have full confidence that whatever your course of treatment turns out to be in the end, it is actually the best for you, based on the best up-to-date available evidence of successful outcomes for your exact type of BC and situation.
Don't be confrontational, try to be matter of fact, and make it clear that you are asking for help. It can help in awkward situations like this to write out a list of the points that you want to make and the logical order in which to make the points.
Wishing you all the best with this. Let us know how you get on.
I was also thinking, it could be that they never had an mdt discussion at first and booked you into surgery. Maybe after the mdt discussion they came that this was the best treatment for you.
At 3 week post op the surgeon mention how mum had to have clearance- didn’t book the surgery but said we have to wait for her2 results.
Post op 7 weeks, Got a phone call from the nurse who said they decided axillary clearance was not needed and only radiotherapy is needed with hormone treatment.
At surgery in April they took 6 nodes and could see that 2 had previously been cancerous before the neoadjuvant chemo and targeted therapy which gave me a complete clearance. No viable cancer left in tissues removed from area where lump had been nor in the nodes. They did not suggest axillary clearance.
I then got 15 sessions of radiotherapy to breast area from bottom of ribs up to above collar bone and to the axilla. Then 4 boost RT sessions to the lumpectomy wound area of breast.
Then back on anti HER2 targeted treatment every three week till end of March, Letrozole [for 5 yrs] and bisphosphenates [3yrs].
