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DCIS first follow up since surgery in September.
Diagnosed with DCIS stage 0, grade 3. No lymph node involvement, lumpectomy, 5 weeks radiation. Very dense breasts. Had two consults both said lumpectomy, radiation, Anastrozole.
Yesterday had follow up diagnostic mammogram. I knew something was up as they kept calling me back for more scans.
They found "fatty Necrosis" under the lumpectomy scar.
That breast always hurts especially when I work out.
The other breast- now they see three areas of calcifications that they believe are benign, but they can change. This was not what I expected.
Another mammogram in six months and MRI.
I'm now second guessing myself as to whether I should have had a DMX instead of lumpectomy because of the breast density. I am having major anxiety regarding having to be "worried" all the time that my breasts are cooking up cancer.
Not sure how to process or prepare myself for the next exam. I hate knowing these calcifications are now in my other breast.
Anyone else go through this uncertainty?
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I don’t know anything about what you describe, but I hope you’ll get others who chime in. I can understand your concerns. Sending positive thoughts your way.
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1 Reaction@flowergal
That must been a shock, when you think your on road to recovery.
Did you ask if you could do the MRI now? With dense breast I think it would be reasonable to ask for MRI. If OK, then a mammogram in 6 months.
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1 ReactionThat is a good idea, perhaps I will ask if that can be done now. I am having terrible anxiety over this, as I was told DCIS - no problem- just a blip in your life nothing more.
thank you both for the response.
Hi I’m so sorry for your anxiety - it’s so hard. I have extremely dense breasts and had extensive grade 3 DCIS in left breast and opted for DXM. Between the ultrasound & diagnostic mammogram I then had an MRI due to extremely dense breasts and this informed decision for mastectomy. I would ask to prioritise MRI now because extremely dense breasts don’t always show everything on mammogram. Then you have the fullest picture possible.
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3 ReactionsHi, thank you. That is exactly what I'm going to ask for.
May I ask how your recovery from DMX was? I have no family to help me except my husband. Wondering how long before you could function fairly well. I probably won't do reconstruction - soon to be 69.
Thanks for replying.
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2 ReactionsYes I am. I was supposed to get a lumpectomy and radiation after chemo but surgeon recommends mastectomy because there's a lot of microcalcification in the breast, although the tumor is gone. I'm going to have the mastectomy and your post has reassured me I'm making the right decision. I also have dense breasts.
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3 ReactionsI 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!
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5 ReactionsHi 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.
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2 ReactionsHow did you have grade 3 DCIs? I thought all DCIS was grade 0? Or do you mean low grade , intermediate, or high grade?
Some facilities use grade 1, 2, 3 instead of low, intermediate, high grade. The American Cancer Society explains how these can be interchangeable.
All pure DCIS is stage 0, though. DCIS with a break through, or invasive ductal carcinoma are given higher stages.
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