DCIS not sure how to feel
Long story so I do apologize. In Nov 2015 I took a massive step of having weight loss surgery. In June I went to see my plastic surgeon in Sydney for my pre op to having loose skin removed due to my ...
Forum Discussion
Hi Helen,
I'm sorry you are having such a tough time. I don't know how you change from private to public but you could check with your GP.
In regards to DCIS, There really needs to be a consensus with the way everyone talks about DCIS. I did listen to a BCNA webinar with Jodie Lydeker the topic being "Psychological impact of early breast cancer" Jodie is a psychologist who also has had breast cancer. After her talk there was open question time, and this very question came up about DCIS and is it cancer. There was an example of a woman who suffered PTSD from being told she didn't have cancer. Jodies response was if your being treated by surgeons, oncologists or radiologist you do have breast cancer. The CEO of BCNA Kirsten Pilatti agreed that we needed some consistency and better education of medical staff. The discussion was that by telling people DCIS is precancerous it is meant to alleviate your fears and make you feel better. Trouble is with DCIS you can often need a mastectomy and/or radiotherapy and I think some people get tamoxifen too. So to be told you don't have cancer you have pre-cancer is confronting and confusing and makes you feel like a fraud.
If you look at what DCIS stands for, "ductal carcinoma in situ" you have cancer cells that haven't made it out of the ducts. Once I added this information with the message from Jodie Lydeker I felt I could confidently say and not feel like a fake while saying it, " I had breast cancer". My DCIS (diagnosed Dec 2019) was big enough that I needed a mastectomy, I chose a double with no reconstruction from which I have fully recovered and very happy with the decision I made. My only issue in this whole episode was, early on trying to justify a double mastectomy (to the handful of people I told) for precancer. Now I'm comfortable saying I had breast cancer as far as I am concerned I did and so did everyone else diagnosed with DCIS irrespective whether its high grade or low grade or what size it is (after all it's not a competition) . The emotions are the same and there is overlap in treatments, surgery (lumpectomy/mastectomy, radiation, hormone therapy.....). Lets hope BCNA can raise this issue and the emotional impact it can have on some patients, with the medical teams that on the whole do such a fabulous job of looking after us.
Take care and all of the best with your recovery.
:smile:
I'm sorry you are having such a tough time. I don't know how you change from private to public but you could check with your GP.
In regards to DCIS, There really needs to be a consensus with the way everyone talks about DCIS. I did listen to a BCNA webinar with Jodie Lydeker the topic being "Psychological impact of early breast cancer" Jodie is a psychologist who also has had breast cancer. After her talk there was open question time, and this very question came up about DCIS and is it cancer. There was an example of a woman who suffered PTSD from being told she didn't have cancer. Jodies response was if your being treated by surgeons, oncologists or radiologist you do have breast cancer. The CEO of BCNA Kirsten Pilatti agreed that we needed some consistency and better education of medical staff. The discussion was that by telling people DCIS is precancerous it is meant to alleviate your fears and make you feel better. Trouble is with DCIS you can often need a mastectomy and/or radiotherapy and I think some people get tamoxifen too. So to be told you don't have cancer you have pre-cancer is confronting and confusing and makes you feel like a fraud.
If you look at what DCIS stands for, "ductal carcinoma in situ" you have cancer cells that haven't made it out of the ducts. Once I added this information with the message from Jodie Lydeker I felt I could confidently say and not feel like a fake while saying it, " I had breast cancer". My DCIS (diagnosed Dec 2019) was big enough that I needed a mastectomy, I chose a double with no reconstruction from which I have fully recovered and very happy with the decision I made. My only issue in this whole episode was, early on trying to justify a double mastectomy (to the handful of people I told) for precancer. Now I'm comfortable saying I had breast cancer as far as I am concerned I did and so did everyone else diagnosed with DCIS irrespective whether its high grade or low grade or what size it is (after all it's not a competition) . The emotions are the same and there is overlap in treatments, surgery (lumpectomy/mastectomy, radiation, hormone therapy.....). Lets hope BCNA can raise this issue and the emotional impact it can have on some patients, with the medical teams that on the whole do such a fabulous job of looking after us.
Take care and all of the best with your recovery.
:smile: