I was diagnosed with grade 3 BC but I was not told the stage or type is that normal ? I am 48 and was referred for a mammogram due to family history. My mother had BC and my sister was diagnosed September 2013 . hers was grade 3 and at stage 2a. She has had a mastectomy and radio/chemo so she has been really through it like many of you.
My sister went through genetic testing and she was told today that she was negative for brca1 & 2 which has shocked me as I genuinely expected this to be positive. Could it be wrong or could I have the gene and not her?
I have to go back on the 8th September to see the consultant and will have an ultrasound on the 11th- is it the ultrasound which will provide the stage?
Any experience you have will help as my sisters experience has been very different to mine same hospital different consultants.
They cannot give a definitive stage and grade until pathology can test a tissue sample, ie after your op. You might want to ask for the pathology report at that point.
As far as genetics are concerned, they have not discovered all genes that can cause bc so just because you can be tested negative for brca1 and 2 does not necessarily mean your bc is not genetic. This is what happened to me. I have a family history of bc. My mum was negative when she was gene tested 30 years ago, as was I when I was tested last year but it would not surprise me if by the time my daughter is tested perhaps in 20 years time that they would have discovered more and she is found to carry a different bc gene.
Has your mum been tested and have you been offered it? Do you have a date for surgery?
My mother also had bc back in 1982 and my aunt (her sister) died of bc in 1976. On top of that, my mother has had a number of aunts and cousins who had or died of bc, so my sister and I were checked with regular mammograms from the age of 35. Unfortunately, my type of cancer was nor picked up (lobular!) so I was eventually diagnosed at age 50. I have also been tested for the BRACA genes, and my results were also negative. My daughter is going to be screened from the age of 35 because they suspect that there must be a genetic link, but they’ve just not found it yet! They have retained some of my tissue so they they can test for any subsequent genes connected to bc which are discovered in the future.
I have completed my treatment now and have never been told the stage of my disease, although I suspect it is stage 2a since my nodes were clear. I am now pushing for a mastectomy since I was only offered a WLE on diagnosis.
I had my appointment on Tuesday - I have to have my ultrasound on Thursday and I have my biopsy for the centinel node planned for the 23rd Sept - the waiting between appts and results is stressful and all i think is that the delay between diagnosis and surgery means that the risk of the cancer travelling increases every pain I have I think thats the cancer travelling to my lungs and liver … I have not had an appt for the plastic surgery consultant yet - my target date is 2nd October but realistically cant see this being met as I hope to have a DIEP at the same time as the bilateral masectomy - but again I have no idea yet if am to have radio/chemo which will mean that I cannot have the DIEP all of this what if’s is making me so anxious but I try to put on a smily face for my children as I dont want them upset. I spoke to the genetist yesterday who has said that they only test for BRCA1 / 2 at the moment and would take my case to the team meeting on Thursday for me to be tested for the gene I will be giving him some blood just in case they said yes - but will ask for my daughters to be screened early too - the thought of them going through all of this…
Thanks for replying Mary & Ann it is easier to air my thoughts here rather than to my sister who keeps crying and cant get over the fact that I have IT too
I had WLE and sentinel node biopsy, followed by chemo (fec75) and then radiotherapy. I had to have 2 surgeries because my first WLE didn’t give clear enough margins.
I know it’ll be hard for you to believe this at the mo, but all the feelings you are experiencing at the moment will pass. I was so scared that I wouldn’t see Christmas ( I was diagnosed in November last year) when I was first diagnosed, and was so terrified of what lay ahead of me. Once I had my treatment package in place, and commenced my treatment, it was so much easier. The chemo wasn’t as bad as I expected and the rads have been a total breeze with only slight discomfort. You will feel tired and it’s not a walk in the park, but it’s so doable.
As I have said, I am pushing for a mastectomy now and through this whole experience, it’s my one regret that I hadn’t insisted on one from the start.
I’m sure your sister will be there for you every step of the way, and you can always turn to this forum for help and encouragement. It has been a great comfort for me, even if I don’t post very often.