I have been dx (Feb 2012) with a mixed carcinoma in the right breast (lobular/invasive ductal) grade 2 5cm mass. I have to date had 7 chemos (3EC and 4 TAX) I am due to have an mx on Weds followed by RADS and Arimidex.
My question is this: given that I already have started my treatment plan which is not going to change. Is there any advantage in knowing my histology results post MX? I have just had a chat with the BCN and she tells me this is when they give you the ‘characteristics’ - the good and the bad. she has said I don’t need to know if I don’t want to.
I am not sure if I want to know or could face any more ‘news’. are there any disadvantages to my ‘ostrich approach?’
Thanks
WSx
I personally don’t think there are any disadvantages to your approach. My view is this - you have what you have, you are having the full treatment - it doesn’t get anymore radical, so what would you gain. I think you would only gain if you were having the lump removed, thereby leaving the rest of your breast behind. And even then my view is it may come back or it may not.
I never saw any of my test results, my team just told me what treatment I needed and I had it. The only point my treatment changed was half way through chemo when they said that they could do a WLE instead of MX which they did. I never saw any pathology report, histology report, scan etc. Nothing.
I wasn’t interested then and I am not interested now.
I hope this doesn’t sound blase because I really don’t mean to - I have days where all I think about is it coming back and worrying, so I am not being blase by any means, but I really genuintely don’t think you will gain anything.
Sam
I think it’s completely down to the individual - I had to know EVERYTHING! But if you don’t want to - then you don’t have to find out. And you can always find out at a later date if you ever changed your mind.
what extra info do they give exactly other than grade and size etc. is it info we can easily make sense off?
Hi Ladies,
Thanks, for your replies. Samlee, no your answer isn’t blase at all and it’s pretty much the way i am thinking too. Knowing the ‘results’ does not make any difference to my treatment plan and if I do get them I will be self referring to Dr Google and that will be very bad for my mental health as I do still feel very anxious.
Sandytoes- I think that is a great idea to find out later on if I want to.
Tommyticklemouse - I am not sure what she meant by’good/bad characteristics’ I’m assuming as you say: stage, aggresiveness, in my case poss mixed dx (lob/ductal% of) vascular invasion, lymph+/- (how many), chemo response as I was neo-adjuvant and maybe other stuff.
This is just off the top of my head what the BCN meant.
wsx
WS I was exactly like you. When I was DX, I didn’t want to know the finer details of my histology report and never asked for them. I know they sent them to my GP and he asked me if I wanted a copy and I said no - its not about burying your head in the sand I think at times you can only take in so much information and if you have a full treatment plan then its more important to concentrate on that and getting through it rather than worrying about your detailed results (thats the medic teams job not yours). I did get to the stage though when I wanted to know the ins and outs - when I had finished my treatment and was feeling well again I did ask more questions and to be honest it did frighten me a bit when I was told what I was told and of course being human I did the ‘google’ thing which is not advised! I now know all the ins and outs and have copies of my reports but I do not dwell on them but I do know that the treatment I had was the ‘gold standard’ for the prognosis and there is nothing more they could have done which is re assuring. However there are other ladies who I know need to know everything and feel that is the only way they can feel in control. We are all different and you should do what feels right to you at the time. You can always ask for info at a later date if you feel the need.
Dear Wintersocks
If you feel that you’re having the correct treatment, and don’t feel the need to know, then I would stick with that.
I wanted to know everything but found out that my cancer is of rather bad character! Now I know my prognosis (and yes, I committed the Google sin regarding a part of my diagnosis which wasn’t mentioned at the time of my second histology report and only noticed it sometime after getting the oncology report) I’ve found it difficult to switch off the thoughts of what the future might hold. I was okay during treatment but since that finished I find myself worrying a lot. I’m triple negative and they wouldn’t let me on the REACT Trial because of a possible allergy so there’s no more treatment. It makes it more difficult to cope with my job when I sometimes have to deal with disagreeable people and I just feel life’s too short to put up with them, but I don’t have much choice.
Perhaps ‘ignorance is bliss’ is the better option.
Best of luck with everything.
Saffronseed and Flori35.
Thanks so much for your thoughts, SS I think like you i will probably want to know the ins and outs at a later stage. I just don’t feel I can cope with it at the present time although I feel a bit ‘weak’ at not being able to do so. but that’s just how it is.
F35. No i don’t feel the need to know! I think like you I would find it almost impossible to switch off the thoughts of what the future might be. interestingly, I feel the same about the’ fall-out’ happening after treatment.
So, 'ignorance is bliss…at the moment. I hope you are both continuing to be well.
WSx