DCIS
Comments
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@Frenchbee you’re not alone. This is my first time in this forum, and I looked for comments on DCIS. I also have a high grade DCIS diagnosis.
I’ve had two surgeries so far since diagnosis in May and I have another one 8th August, this time a mastectomy on my right breast.
i was also told this was “pre-cancer” at the early stages of diagnosis, and this plays a massive part of my self-consciousness- I beat myself up when I feel depressed and anxious- “this is only Pre-cancer, why am I so upset??? “
Im struggling with the changes to my body and coming to terms with my upcoming surgery.
i may be considered “pre-cancer”, and they may be trying to appease, but it only feels like they’re belittling your condition, and it makes you feel like you’re over-reacting.
Maybe this should be addressed within the medical field3 -
@MelCBusby
I'm so sorry for the long delay in replying Mel.
I had the mastectomy/diep reconstruction surgery on 10th July and just now resurfacing a bit.
I cannot agree with you more - I have felt quite isolated with this diagnosis and like I don't "belong" in the breast cancer world.
Yet the medical interventions that many DCIS patients must endure are sometimes at the extreme end of things - particularly the surgeries.
I have had multiple mammograms, ultrasounds, MRI, core needle biopsies, MRI guided biopsy, lumpectomy surgery, nipple shave surgery, mastectomy and now phase 1 diep flap surgery. I still have at least one more surgery to go plus a nipple reconstruction
Honestly - it feels like... a lot?
I am so so grateful that my mastectomy pathology has confirmed that (finally) I have clear margins - I know how lucky I am that I don't have to face chemotherapy and/or radiation like so many of our further advanced sisters.
I told my husband that I feel like I've been through a woodchipper after the latest surgery, and I just can't imagine the feeling that women who must then face chemotherapy/radiation must have. My heart just goes out to them so much.
I told my breast surgeon that the term "pre-cancer" or people saying it's not "real" cancer is very upsetting and invalidating to women like me.
I told him that I prefer to use the term Stage 0 Pre-invasive cancer - I feel like that is more accurate for my condition and what I have been through.
He said that the condition is certainly malignant - and that sometimes women find it more comforting to be told it's NOT cancer (because it's not yet invasive).
Personally - whilst I understand that may be comforting to some women, and particularly those women who have to undergo much less dramatic treatment - the condition either is or it isn't cancer. We can't change the classification to make people feel better.
Frankly, that feels quite paternalistic to me - just tell me what it is - I will cope with it accordingly. It's much more confusing and upsetting that some medicos and medical paper classifications say it is cancer and some say it is not.
Seems that some of the trouble is that the medical world itself cannot decide how to classify it - there is such a range of DCIS from a small Grade 1 lesion right up to the large Grade 3 lesions that you and I have. Perhaps they need to have sub-grades within the DCIS category to more accurately represent the particular diagnosis?
I can totally understand the struggle with changes to your body - so so much.
I am going to put up a new post about that exact issue. Again, I may be in a smaller pool of women with how strongly it has impacted me, however, I now feel more confident that there ARE other women out there who feel like me. I hope that posting raw honest feelings about this might help someone else feel less alone.
I'm also going to post about the mastectomy and diep experience (so far) to try and help those who are facing this too.
Please please feel free to reach out to me if you want to talk about the surgery at all - if there is anything I can do to help you, I would be so happy to do that.
Sending you so much good wishes and thoughts as you go through this awful thing.
T xx2
