I had lung cancer diagnosed 5 years ago and was able to obtain from NICE booklets on both information for patients and guidelines for the medical profession. When diagnosed this year with BC I assumed I would find the same publications available for breast cancer. Evidently they are not. This surprises me since breast cancer always seems to get most publicity. I am very keen to find reliable information on who is/ is not a suitable candidate for sentinel node biopsy. It just does not seem to be available, although I have found some on American sites. The worrying thing is they are clearly not followed here in my experience. How can one find such information?
hi there Sarcath
for sentinel nodes try: nice.org.uk/guidance/index.jsp?action=byID&o=11026
for other NICE guidelines for BC I found these:
nice.org.uk/search/guidancesearchresults.jsp?keywords=breast+cancer&searchType=guidance
hope they help.
There are definitely NICE guidelines for Breast Cancer. They were updated in 2002 and first produced in about 1999. They are called Improving outcomes in breast cancer
they are a bit long but I found out a lot from them. I gave my copy to my GP when I no longer needed them in my house - she had told me she knew nothing about breast cancer so I thought she should read them
Mole
NICE guideline CG41 is what you need.
Hi Quisie and Dahlia
And thank you. It helps but this does not answer all the worries thrown up by the guidelines - I have just located some notes I ran off and I see they are from cancerweb.ncl.ac.uk/cancernet. I believe it is American. Looking further in my notes from breastcancer.org ( must be suffering from Chemo brain with all this confusion - comes from not having anything explained or discussed at the clinic, I think ) and this is what really worries me. Women with any previous surgery that could have caused changes in normal lymph flow - likely after my lung surgery. Previous chemo - had that too. Women over 50 - that’s me by a long way.
I was given this procedure without proper discussion - just a printout of the details - it is only since the op that I found all this other info which is really worrying me. Attempts to discuss it with breastcare nurses and surgeon have got me nowhere. This why I had hoped to find something more specific from NICE. I have even wondered: Do they put you in trials without consent?
I am so confused. They only took 2 nodes, both positive, still no mention of clearance. Chemo after 5 weeks + radiotherapy. So I really don’t feel I know where I stand. My tumour was fairly large 3.6 cm ( missed by mammoram )
Anyway thanks to you both
Sarcath
Hi Sarcath
I’d suggest writing down all the questions you have and giving them to your consultant. Take someone with you to the consultation. Maybe you could phone the helpline on BCC for guidance before you do this.
If you have had a sentinel node biospy which showed cancer in your nodes then eventually yes you should have node clearance but it may be that you will be having chemotherapy first before more surgery. Yes there are NICE guidleines (currently being rewritten) but what you need I think is proper attention and explanation from your own medical team…information from the internet is inevtiably not specific enough,
Good luck and best wishes
Jane
Hi Sarcath
Sentinel node biopsy - this wasn’t available when I was dx Jan 2003 but I believe it is now common accepted good practice. This procedure has been available in the United States for about 5 yrs. When I had my WLE I was told the surgeon would be sampling some of my lymph nodes. I was so ignorant I hadn’t a clue I had lymph nodes in my armpit. The bc nurse showed me a diagram and I really didn’t have any questions as I think I was still in shock at the dx as I didn’t have a palpable tumour - it was found on my 3rd, 3 yrly mammo. The surgeon sampled 8 nodes and 3 were found positive for cancer. I went back a month or so later for total axillary resection, and they found another node positive. So, 4/18. I then had chemo and rads.
I, like Jane RA, would have thought with spread to your nodes, that total axillary resection was a given. I would be asking why not. If it has spread that far, it could also have spread to distant organs (liver,lungs,bones,brain) and you should have scans. After my surgeries and as I started chemo I had a liver scan, bone scan and chest x-ray. Thankfully, all were clear.
As far as clinical trials go, I was on a trial of a new drug for Crohn’s many years ago. My gastroenterologist explained the risks and possible advantages, and then I signed a form agreeing to the trial. However, some people had serious adverse effects, although I didn’t, and the trial was halted after 3 months. The good aspect of being on a clinical trial is that you are monitored much more closely with frequent blood tests and scans. For people in the US who either have no medical insurance, or it is inadequate, the drugs and tests are free.
Hope this has been helpful.
Take care,
Liz.