I started FEC today - 1 of 6. Then radiotherapy (19 over 4 weeks) followed by Tamoxifen for 5 years. You can probably work out the staging for yourself if you read Dr Susan Love's breast book, mine was stage 2 but only because I had 1 lymph node afffected, otherwise it would have been stage 1. I was originally told chemo would only give me an extra 3% survival chance (this was by the surgeon) and then when I saw the oncologist 6 weeks later he said 5% to 10% extra, so I said I'd have it. Oestrogen positive is good, gives you the additional preventative of hormones.
The waiting times are the worst I think.
Being to oncologist this morning. Confirmed what I already knew re tumours. Am now facing chemotherapy (6 x FEC), radiotherapy (15 over 3 weeks) and arimidex for 5 years. Was a bit hesitant about chemo when he said it improved my chances only by 6% and left the decision to me as to whether to go ahead. So took the plunge and hope I don't live to regret it. He was very clear in explaining the course of treatments and it was a positive experience. I now wait for an appointment to see the chemo nurse for further details and and date to start. Would not give me a stage for my cancer though when I asked. He said there are too many different ways of staging. So its wait for another letter!
I'm also someone who likes to know everything but the trouble is that there are a lot of unknowns in cancer treatment so I can't say I ended up feeling that I did know enough. It's also very difficult to take it all in. Five years later I probably know all I needed to know when I was first diagnosed, sadly a bit late in the day
Thanks for the comments so far. I have got the booklet refered to and found it useful. I am glad to know I am not the only one who seems to want to understand all the info going. I have two friends who have gone through breast cancer in the past few years and though they are wonderfully supportive I seem to approach things differently in wanting to understand everything. I am taking a friend with me on Wednesday although not my usual one who is very good at taking notes! Will let you know how I get on with the oncologist.
These aren't really questions that any of use patients can answer but it sounds to me like the path report might be talking about margins and area around the tumour, for example I had a tumour that was 3.5 cm in total but the core of it appeared smaller. I think tumours have sort of tendrils (which is how they have their blood supply I think) which they want to remove with the core of the tumour so in order to get clearances what they need to remove is actually bigger than the heart of the tumour if that makes sense.
It may also be that one of the tumours was in 2 smaller lumps which they see as one larger area of DCIS.
I think perinodal is the tissue around the lymph nodes.
Anyway I would ask the oncologist about the details. It doesn't sound to me like things are worse than you've been told if that helps at all but ask them on Wednesday and don't leave until your sure you understand and maybe take a friend whos got a good science head, notebook and memory.
I'm fortunate as my brain is like a fascinated child with almost all info and so's my fiance so we just kept on asking questions until the oncologist made a break for it.
I am sure you will receive plenty of support and advice from our many forum users, but in the meantime you may find one of our publications a useful read. I have given the link here to the booklet called 'Understanding your Pathology Report' which may help answer some of your questions?
This can be either downloaded or ordered from this website.
Can anyone out there help me and give me some support?
I had a modified radical mastectomy on Sept 8th. At my post op appointment I was told there were 2 areas invasive ductal carcinoma of 1cm, grade 3 and a large area of DCIS (7cm) plus 1 lymph node out of 13 was cancerous and I was oestrogen positive. I would need chemotherapy and radiotherapy and was to be referred to the oncologist. My appointment with the oncologist is on Wednesday (Oct 1st). Since then I have been going back to get the wound drained and asked the BCN if I could have a copy of my pathology report which she wiling got for me. This has confused me as I have tried to tie up the report with what I have been told. The report seems to say to me that I had a Icm tumour of invasive ductal carcinoma, grade 3 with DCIS surrounding it making the tumour 3cm. There was another tumour of 1cm of invasive ductal carcinoma, grade 2. There was also an area of DCIS of 3cm of intermediate to high grade. The lymph nodes were enlarged (one being 2.5cm) and one cancerous. Peri-nodal soft tissue infiltration was noted, but I am not sure what that means. I am worried that my cancer is a lot more serious than I have realised so far as I have generally been quite positive and have felt very well over the past few months having recovered from a bad bout of depression earlier in the year. Am somewhat apprehensive about my appointment this week and what the future entails. Sorry so be so long winded. Please help if you can. Thanks.