DCIS first follow up since surgery in September.

I had DCIS 16 years ago, and opted for mastectomy rather than lumpectomy. No need for anything else. I toyed with the idea of preventative mastectomy on the other side but unfortunately didn't go through with it. Cancer came back with a vengeance two years ago. Grade 3 - aggressive. Chemo, radio and now AI. And I have permanent peripheral neuropathy. I really really wish I'd rid myself of that remaining dense breast while I had the chance!

Hi I am 43 and work out regularly so definitely being fit helped in my recovery. I had my sister come and stay with us for two weeks as we have young children and we wouldn’t have managed - granted I had essentially two surgeries in one - DXM and reconstruction so your recovery will be quicker with just one procedure albeit it’s a major surgery - I would say first two weeks are the hardest when you are slow on your feet, drains in, and need to manage pain. I just took it very slow, rested a lot, listened to my body. Physically you will need help during that period doing basic every day things. The more you rest in those first few weeks the quicker your recovery will be. Follow the care advice, do your excercises and prepare your husband as best you can. If you make things easy for your self like have fridge full of drinks and fresh fruit and snack bars. Do not get constipated - that’s almost worse then the surgery pain so I had lots of smoothies with easy to digest light meals and very slow walks even just around the house to start. Getting the house organised and have your bathroom all set up with what you need - all in arms reach at hip as you won’t be able to reach up. In terms of essentials I found this girls blog super helpful - https://laurensyndi.com/2020/12/08/prophylactic-mastectomy-6-things-to-pack-in-your-hospital-bag/

Best thing I bought was the pregnancy shaped pillow - amazing support and comfort when sleeping and bags for the drains. Also treated myself to nice creams and shampoos etc. I would say by 6 weeks I was starting to feel more and more myself and very slowly started running again but like baby steps. We all recovery at different paces so listen to your body and don’t do too much as it will hurt. It’s time for you to out your feet up and hubbie to take care of you.

How did you have grade 3 DCIs? I thought all DCIS was grade 0? Or do you mean low grade , intermediate, or high grade?

I was diagnosed with invasive carcinoma of no special type (ductal) grade 3, Stage I triple negative breast cancer. In learning more about DCIS, I see that every surgeon and oncologist have various medical recommendations and actions taken towards surgery and treatment.

Because I didn't want to have the uncertainty, as you have stated, I opted for having a double mastectomy. It was the best decision I could have made. The fat necrosis is not an issue but a side effect from the surgery.
My oncologist said it will go away but do not stop either exercise or physical therapy for strengthening (and yes, it hurts but movement is good). Radiation was not required. However, chemo was recommended (4 infusion treatments) however, due to the size and margins, I opted out of chemo. Because I did not have to have radiation, I was able to complete reconstructive breast surgery without incident.

Subsequently, I think the uncertainty will persist because the thought of the return elsewhere is probably in the back part of my mind. Nevertheless, I will not let this impact my quality of life. I refuse to!

Not sure but I would speak with the professionals after your test and think about having a mastectomy if possible. I have heard of persons who receive radiation doing reconstruction, but it is stated that the results may not be favorable, meaning shape, size, and appearance may be irregular.

Best to you in your journey!

Thank you for sharing your story. We all have to hear what the doctors say, research on our own, and come up with what we feel is best.

I did speak with my oncologist and the surgeon both today. The surgeon gave me more information on the calcifications that helped clear up some of my concerns.

Goad you are doing ok.