Anyone had DCIS high-grade diagnosis?

Posted by prc73 @prc73, Oct 22, 2023

Hello has anyone here had dcis high grade 3. What was your experience? Did you have surgery? What was recovery like? I am multifocal With calcifications field like 14cm across So lumpectomy is not an option. I have already had several opinions and they all concur. I kept thinking maybe i could sit and wait but that field seems rather large . They say I may most likely not need chemo or radiation but it will depend on post surgery results.

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@jilly615

I think being the 'person in charge' of your family/work/life makes the physical adjustment for cancer really uncomfortable. Asking & accepting help has never been my strong suit either, but when you are so tired & do accept the help, it does get easier... especially since it means so much to the people helping you. They know they cant do anything about the cancer itself, but this aspect of it really makes them feel better, according to what my friends and family have told me. I am working on being graceful to accept it.

It won't let me post a link here to the pillow I bought, but the description is below. I bought it on Amazon. Type in maternity pillows & it pops right up. I went with the 55" since I am 5', but my friend who is using it is 5'6" and it works for her too. Any style like this will work if you find one cheaper. I liked I could wash the pillowcase. The grey color pillow case is couple dollars more, who knows why. I went with the cooling jersey type as the idea of hot velvet would NOT help me sleep! I added a semi-flat pillow to the top of the pillow in the beginning when I need to be propped up a bit more. You'll find what works best for you.

AngQi Pregnancy Pillows, U Shaped Pregnancy Body Pillow for Sleeping, 55 inch Maternity Pillow for Pregnant Women with Cooling Jersey Cover, Grey $51.99/49.99

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I appreciate you so much for those inspiring words .I guess I had not looked at it from their point of view as well.The pillow will be of huge help and I too am one who needs a cool one.

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@jilly615

In my case, it could be. I had 2 incisions, one for the nodes & one for the tumor, close to the same area. The docs believe the nerve pain seems to be a combination of scar tissue at the surgical sites & perhaps continued healing from the radiation. I had a bit of the nerve twinges in the few months after radiation, but nothing like this. It was just every once in a while. This new sensation started 10 months after radiation. They did a CT scan of the arm & chest to be sure it wasn't some sort of blockage, they found nothing more than scar tissue at the site, which for me is close to the chest wall. I am doing exercises & lymphatic massage to help things break up and keep the fluid moving. Icing the arm is great for nerve pain, just numb it right up!

I think radiation is mentally tiring because you have to go every day, except weekends and its a constant reminder you are a cancer patient. Barely takes 30 minutes from when I got there to when I left. I felt no different in energy level until into the 3rd week when the afternoon fatigue began to hit.

Keep up your PT exercises after your skin feels better. I found it helped to ease the soreness a bit. Can't imagine what my scar tissue would have been like without doing them. And I can not speak highly enough about Aquaphor. Even my surgeon was surprised at how great my skin looked. I started right after surgery and continued for 2 months after radiation every night. I bought some cheap tank tops a few sizes too big at Wal-mart to throw away after, so I wouldn't ruin my favorite pjs, as the Aquaphor will leave a bit of a grease stain.

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Thank you for your response. Our situations seem similar as far as the 2 incisions near each other.
I had the lumpectomy and then the sentinel node surgery. I didn’t have clear margins after my lumpectomy though, so they had to go back in the same incision and take more out. But the sentinel node surgery was the one that kicked my butt!
I am so glad that they only found scar tissue when they did your CT scan!
Thank you for all of the great suggestions.
Take care!

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@prc73

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.

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Hi just to also say so worth getting an pregnancy pillow for post surgery recovery - a friend kindly gave me this one https://momcozy.com/products/momcozy-pregnancy-pillows

And honestly it’s amazing!! I have to fight my little boy for it as he wants to sleep with it too 🙂 good luck x

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@gillbell84

Hi just to also say so worth getting an pregnancy pillow for post surgery recovery - a friend kindly gave me this one https://momcozy.com/products/momcozy-pregnancy-pillows

And honestly it’s amazing!! I have to fight my little boy for it as he wants to sleep with it too 🙂 good luck x

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Fantastic this is awesome. I truly appreciate the recommendation.

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