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Anyone had DCIS high-grade diagnosis?

Breast Cancer | Last Active: Nov 11, 2023 | Replies (24)

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@jilly615

@prc73 I was diagnosed with high grade 3 DCIS stage 1 with invasive carcinoma in August 22. Had a lumpectomy with 2 lymph nodes & 20 doses of radiation. 72% estrogen - 2% pro. HR negative. My ki-67 score was 46, but no Oncotype results as my invasive carcinoma was removed during the biopsy so the lab said too small a sample.

The recovery from the lumpectomy was okay, compression garments & ice packs helped and not doing things too soon. Sleeping with a U-shaped pregnancy pillow saved my life for getting good rest, highly recommend one. (I loaned mine to my friend who just had a double mastectomy, she can’t imagine recovery without one!)
The fatigue with radiation didn’t start to edge into my life until middle of the 2nd week.. hitting a wall in the afternoon just put my on the sofa. Used extra large loose fitting tank tops around the house & under sweatshirts when I went in public. Skin was like a bad sunburn, the prescription cream helps a lot as does Aquaphor, that stuff is miraculous! Nipple turned black as ash, no kidding, then peeled. I religiously put the Aquaphor on twice a day and my skin recovered like I never had radiation. I had/have nerve pain & breast tenderness though finished radiation in December 22. Surgeon says part of it is inflammation of the cartilage on my ribs, still recovering from radiation. Can be up to 2 years after radiation for the nerves to mend completely for some. Daily exercises got all my mobility back in that right arm.

Cancer just takes a lot out of you no matter which avenue you go down. One day at a time and when you do make a decision, try to let it go and move on to the next decision. You can only make the best decision at that moment with the information you have. Hang in there, you will find your strength no matter what you choose.

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Replies to "@prc73 I was diagnosed with high grade 3 DCIS stage 1 with invasive carcinoma in August..."

Thank you so much for this. I rarely cry but your final comments brought tears to my eyes . I think because I am always doing things and on the go I am so terrified of being helpless . I have friends and family who would do so much for me but I’ve always been the strong one and just don’t know how to be vulnerable. Thank you so much for your advice about taking a decision at a time and I will invest in the U pillow you advised . Was there a specific brand you used and where did you get it.

@jilly615
Do you think the nerve pain was due to having the Lymph nodes removed? I also had 2 nodes removed and have had lots of issues with nerve pain and cording since that surgery, which was over 2 months ago. I have been in PT and it is finally starting to get better.

I am supposed to start radiation this Thursday and am really not sure what to expect at all! I hope the radiation doesn’t cause the nerve pain to return like it had been.
Also, so glad to hear the aquaphor helped you! I’ve already been using it in hopes it will help my skin not be affected as much.
Thank you!