Just got the call - DCIS

PurpleCat

They called a little while ago. It's DCIS. They said it's positive for two hormone receptors, which I guess is good? They didn't say anything about a grade, and I didn't ask. I'm going to do my best to put it out of my mind until I see the surgeon, hopefully next week. I think the news is about as good as it can be without being benign, and am going to hang on to that.

odat4me

Hormone Receptors are good I think because they can then treat it with drugs to suppress hormones. Sorry for your diagnosis. I was hoping for DCID but got IDC. But either way it is cancer and it needs to be taken care of. I found out the grade when the tumor was out.

Georgia1

So sorry, PurpleCat. Yes, I think ER+ is good in the sense that Tamoxifen or an AI would be helpful. Keep us posted when you have the full report.

PurpleCat

Thank you. I found that out when I asked the nurse if there was anything reassuring she could tell me to get me through the weekend. She said those hormone receptors were a good thing. I'm so grateful to have this forum, and will post again when I know more.

evsl

PurpleCat,

You going to be okay. When I got my result 10 months ago, this site helped me understand DCIS and its treatments. I was prepared to discussed my treatment to the doctors and went through it with less stress. Best wishes and keep us posted.

PurpleCat

Thank you, evsl!

DAmy

Hi, a little late response from me but it looks like we were diagnosed around the same. I haven't really posted much yet, just gathering information. I was diagnosed with DCIS, Hormone positive, grade 2. Doctors are suggesting a lumpectomy and reconstruction followed by radiation. I have the added problem that they found lymphoma as well but we are taking care of the DCIS first. How it's going for you? Take care, Donna

Rrobin0200

I am 1.5 years out from a DCIS diagnosis. The initial shock is debilitating. I cried for weeks. But, hang on to the fact that this is the better of the worse, if you will. It’s sucks, plain and simple. There’s no discrediting DCIS, as it is a diagnosis and it has to be taken care of. Because I was grade 3 and after my results of BRCA showed a “variant of unknown significance,” I decided that a BMX was the way to go. I had that along with reconstruction at the same time. I couldn’t be happier with my results and even though this is something I’ll never ever forget, it’s not in the forefront of my mind anymore. You too will get to this point, trust me. Once your treatment plan is put into action, you’ll find feel more in control. People on this forum told me the same thing I’m telling you... they were right.

Get adequate sleep, drink lots of water, take an anxiety pill if needed, and listen to your body and to what the doctors are telling you.

Best of luck. Take care and let us know if we can help you from afar.

PurpleCat

Hi Amy - thanks for answering, and I'm sorry you're dealing with this too, and on top of lymphoma! If it's of any comfort, a good friend of mine went through lymphoma treatment a couple of years ago and is doing great. I'm doing OK too. I saw the surgeon a few days after the diagnosis, and she said I should have an MRI because of my dense tissue. Waiting for those results was really hard. Up until then, I didn't think there could be anything more stressful than waiting to find out if you have cancer. This time I already knew I DID have cancer and that that we were looking to see just how much I might have hiding in that dense tissue, that years of mammograms hadn't been able to see. I was so thankful when the only thing that showed up on the MRI was the thing that had already been biopsied. I had my lumpectomy earlier this week and am now just waiting for the final report to find out whether the margins were good and also whether the original DCIS biopsy was accurate. If there was invasive cancer mixed in there, it seems unlikely that every single one of the biopsy samples missed it, but I won't breathe easily until I know the final results. After that, on to find out about radiation and/or hormone treatments.

Robin, thanks for sharing your success story! This is definitely the most anxiety-filled experience I've ever been through, and my doctor prescribed a sleep aid, which has helped. You're so right about feeling better once treatment has started. While there are still those unknowns about margins/second surgery, final pathology, radiation, tamoxifen, and perhaps other factors, I do feel much better knowing that it is out of my body. Today I got my first look at the incision and the dent, and it's not nearly as bad as I had feared. That helped my anxiety level too, as I'd come home with this absolutely huge pillowy bandage that covered the entire top half of my breast and I was imagining all sorts of things under there.

PurpleCat

The final pathology report came back, and it seems I've been upgraded. There is a small area of invasion, 7 mm. I've spent the past month feeling somewhat reassured; surely if it was anything but Stage 0, at least ONE of those little samples they got with the core biopsy would have revealed it! Nope. Somehow, even in such a small area, it was entirely missed. Now I have to go back for a second procedure to check a lymph node. This can't be happening. This was supposed to be the day I got the confirmation that it was DCIS, breathed a huge sigh of relief, and found out what combination of radiation/tamoxifen would be recommended. Now there's actually a possibility of chemotherapy on the horizon, and not only that, I probably have two more weeks of this waiting game before I can know what's ahead.

Fran68

oh PurpleCat that is crazy!!! I can’t even imagine. I’m waiting for my biopsy report and like you expecting if it’s bad it won’t even be That bad. I’ll be praying for you and for God to give you strength! Hang in there sister- we are all here for you

PurpleCat

Thanks, Fran. They said it happens in only about 10-15% of DCIS cases, that they find it's actually invasive. I knew this was a possibility but didn't realize how unprepared I was for that news until it came. I couldn't stop shaking. I"ll pray for you too! The waiting is so hard.

jo6359

purple cat and Fran- when I was notified of my diagnosis I found it to be overwhelming. The women on these threads are wonderful. They share their own experiences and provided support. I also ask my doctor for a prescription of Zanax. I took the lowest dosage prescribed and I used the pills for one week only. It did help me get over the initial hump. All of us have been through where you are now and it is an anxiety ridden experience. Keep us posted. And remember it's all doable.