DCIS - What I Wish I'd Known (and took six oncologists over two years to find out!)

I had both invasive lobular and DCIS plus, atypical hyper dysplasia in 1 boob. 3 biopsies on 1 breast! I asked them to take both. If it’s sick, take it and take the other so they don’t have to worry about it coming back. Pathology results were done in both. The left breast had the 3 biopsies and cancer my right breast came back with precancerous masses. * if you find a cyst have it removed asap! DO NOT WAIT!** I know too many women who have died or are stage 4. Too many women getting breast cancer these days.

Thank you! You have confirmed what my oncology team has advised. DCIS is the most bewildering part of my diagnosis. But just because they call DCIS "stage 0," doesn’t mean it's trivial. The terminology can be confusing at first. I felt like a pest for asking my doctors so many questions, but we must be brave and make sure these experts explain things to our satisfaction. And patients need to understand there are no guarantees. Nature does what it does, and science tries to keep up. Researchers are still trying to understand what might turn a harmless DCIS situation into an invasive cancer. Another tricky thing is damn DCIS doesn't always show up in mammograms or even MRIs. My docs couldn't know the extent of it until after "lumps" were removed and sent to pathology for examination under microscopes. They successfully removed my stage I, tiny invasive ductal carcinoma with a lumpectomy, but pathology revealed that too much DCIS remained. A re-excision (2nd lumpectomy) couldn't clear enough of it either. When doctors said, "Well, now it's mastectomy time," I balked. Why not wait and see if it becomes "real" cancer? Well, in my case that's too much of a gamble. Hopefully soon, doctors will have better ways to detect DCIS before or during surgery. And they'll be able to determine which DCIS can just be monitored instead of removed because it might lead to a full-fledged invasive cancer.

I had high grade DCIS (with necrosis). It grew a great deal. I had to wait 5 months to have surgery (DMX with AFC) because of a covid backlog. In my post-op biopsy there was invasive cancer. Thankfully, I still had safe margins.

Thirty two years ago, I developed Paget's disease of the breast that required a mastectomy to cure it. My pathology report showed that all of my milk ducts were filled with high grade DCIS. Also, there were many areas of necrosis and several areas where the DCIS had started to break through the duct walls. The rash on my areola and the discharge from my nipple caused by the Paget's disease saved my life.

Not sure exactly when this video was done but I think it is great women to be sharing their personal dilemmas and experiences with oncologists in the treatment of DCIS; especially since it is increasing terribly at a fast rate. I feel there is much to be improved in the medical field in the treatment of DCIS; and only women speaking out and not just accepting conventional protocol in the treatment of this disease, that women can become more informed as to what is best for them; I am not saying to ignore your condition but to question everything and you make your choices.

Thank you so much for doing your videos. Your information is really helping me. My Invasive Lobular Carcinoma was also found by accident. I had a suspecious area on my right breast and the radiology department ordered a MRI. I am clostrophic and put it off for 8 months. During the MRI in July, a distorted area was seen on my left breast (the right breast has calcifications and I am having a 6 month MRI next week as a follow up). For the left breast a mamogram with contrast and an ultrasound was ordered which confirmed cancer. I than had a MRI guided biopsy--I had early stage ILC. In my heart I wanted to have a double masectomy, but mostly I wanted this cancer out of my body as quickly as possible. My surgeon's nurse called and we had a video call. My husband was also there. She didn't recommend the double masectomy but did assure me it is my choice. All my husband could say is that she really stressed the fact I should have a lumpectomy. I had a lumpectomy and 2 sentinel nodes removed. All margins were clear, so I am now "cancer free". After looking at my biopsy after the lumpectomy I saw there is also a 7mm area in my left breast and a different area in my right breast. I wish I knew in July what I have learned since than. Your videos have helped me tremendously as have a few groups for ILC. I have seen 3 oncologists and the last one is the only one I trust to know about breast cancer, and especialy how sneaky ILC is. My surgeon is very hard to communicate with and her assistant likes to make you wait 5 or so days before she calls you back. I'm not complaining, but I may make an appointment with another surgeon also. I do not want to spend the rest of my life worrying and having MRI's/mamograms. I am 66 and 2 1/2 years ago I was diagnosed with Ocular Malignant Melanoma. A very rare cancer. Sorry about the long message. I just want you to know you are helping many!!

Thank you for sharing your story. I was diagnosed recently with the Invasive DCIS, had a lumpectomy (I would have preferred a mastectomy) and I am slated to start radiation treatment. I am finding it very annoying that the Oncologists seem to make decisions without discussing this more in depth with me. Very frustrating. Thank you for your insight.

Your knowledge is astounding...

Everyone talks about the radiation, but not the effects of radiation-including death. My mom had breast cancer, but died from the radiation therapy. When that happens, is it counted as a death from breast cancer or as an effect of treatment? When we get the statistics of women who died of breast cancer, how many died from cancer vs. how many actually died from the treatment. That never seems to be discussed.

Thank you! Knowledge is power.

Thank you for your really important information. Very appreciated.

Thank you so much for this video❤

Thank you for sharing. Just starting my journey.

Thank you for sharing. I’m in the process of making decisions for my care and I feel the information out there for DCIS can be very contradictory. My biopsy notated necrosis and the name alone made me think it was a bad thing. I really appreciate you taking the time to explain ❤

I was diagnosed in 2015 with PLCIS ( pleomorphic lobular carcinoma in situ) It was zero stage at that time. I went to many second opinion doctors and had biopsies over the years. My current doctor performed a masectomy in July 2022. Im glad I had it because after the surgery they tested the growth and it came back as stage 2 cancer. Thank God my doctor was able to remove it all with clear margins!!! I did not have to get chemotherapy only radiation for 6 weeks. I chose to go flat and I am happy with my decision!!! I am blessed to be here because I know alot of women that have passed from breast cancer. Thank God for your channel it is helping me to stay encouraged and prepare for my second masectomy coming up in January.

Thanks for this so much

Thanks for wanting to help

This is so helpful. I was diagnosed with DCIS a few weeks ago. When they did the MRI last week, they were shocked. Altho the mammo & sonogram showed 2cm, the MRI showed 10cm! (Other breast is healthy). He said that this is something that would only be seen on the MRI. Oncologist/Surgeon said no way they can do lumpectomy. He said that there is necrosis. I was going to wait it out because he’d shown me the most recent research on DCIS and said that it shouldn’t be called cancer at all. And that in just 5 years from now, they’ll likely be treating this way different. But, for now, they don’t have enough info to change the standard of care much. I hate losing my (right) breast. I play competitive tennis. And from What I’ve read, this surgery (with reconstruction) really affects your right arm/shoulder! Can you tell me how long it was before you got back your range of motion/strength in your arm? Boy! I hope you get this, cuz I don’t see any comments here. And this is very well done and informative.)

Thank you for sharing this with us. 🙏🙏

I was just diagnosed with invasive ductal AND lobular carcinoma in the same breast, but this wasn't the problem child that got me in to the doctor... nothing found on the problem side, but this was shocking to me on so many levels. Still feel I'm not out of the woods for that problem side, but now going to meet 3 specialists on Monday to 'determine' a plan (should be interesting to see what they suggest.)