Anyone had DCIS high-grade diagnosis?

@chickenmom10 I am 9 years out from diagnosis and did letrozole for 5 years. At 5 years I did a Breast Cancer Index test that showed no further benefit from extending meds. Letrozole was very tolerable and no lingering side effects that I know of other than bone loss because I could not take Reclast or Zometa.

Thank you thank you so much for your comment. It was very encouraging. I am truly praying they don’t find anything else post surgery as I delayed a bit. Taking care of my mum in renal failure . I know of course everyone wanted me to take care of it right away but I wanted to spend every minute with my mum. She is now stable which thé doctors say it’s truly something they’ve never seen . So I’m grateful to that and can now focus on me .

Thanks for sharing you are inspiring woman to all. We can sure pass this disease. There is proof. My oncotype score was 20 low to medium and my ki67 was at 10 percent.

Hi @swirl, how did the MRI go? When will you meet with the oncologist to discuss the results? Thinking of you.

Hi Colleen. The MRI went well, thank you. It did show that the cancer is multicentric, however. Am waiting to hear from the surgeon to see if he recommends a mastectomy or if he can do lumpectomy and then mastectomy later if the marginals are not clean. I don't have any appt. with an oncologist right now. I don't want to have radiation or hormone therapy unless I must.

@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.

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!

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

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.