DCIS & hidden invasive

Bogie · January 2012

Hello,

I am new to this forum, but found it helpful while scrambling through to get support. I was diagnosed 10/1/11 with dcis grade 3 stage o. Due to the high grade I opted for bilateral mastectomy with reconstruction. I am two weeks post op. My surgeon reassured my family I was cancer free. On Christmas Eve I received a call that the cancer was more advanced than they knew based on the pathology report. This threw me into stage one. I am now waiting on results to HER2 test results. 8 biopsies, 1 MRI, 1 Ultra Sound, and 2 Mammograms and this invasive carcinoma was missed. Is this common?

If I didn't have microcacifications show on original mammogram, this malignant high grade tumor would have never showed up. My surgeon said it was probably there for 2-3 years. Huh? I get a mammogram every year. Now I'm afraid of chemo and or radiation.

Anyone going in for bilateral masectomy, please treat your back/chest and arms like they are glass or you have a broken back. Learn how to teach others how to get you in and out of bed. You can Not do it alone. I tore my insision in the hospital just trying to lay down on my own. I had no muscle control. I wish someone had told me this at the time. It's causing problems healing and may have to have it restiched the surgeon said. If I can help someone else to pass on helpful hints I will.

Bogie

chrissyb · January 2012

Hi Bogie, welcome to BCO. Yes to your question, at biopsy they state one thing and then it can turn into something else after surgery because what they take at biopsy is small. Did you have excisional or fine needle biopsy? If it was fine needle, the docs often qualify your dx saying pending surgery and full pathology.

Sorry to hear that you torn some of the incision and yes again, it's always good to pass on knowledge in the hope of helping someone else.

As far as doing chemo, that will be up to your doc and you. Are you going to do the Oncotype test? A lot of women do that to find out the percetage of help chemo will be to them. Good luck with everything.

Love n hugs. Chrissy

Blessings2011 · January 2012

Bogie - today I met a woman who was dx'd with a 3 cm area of DCIS. She had a UMX a few weeks ago, and that 3 cm of DCIS turned out to be TWO tumors - DCIS of 1.5 cm, and IDC of 1.5 cm. It was so hidden that none of the diagnostics picked it up. It only showed up in her surgery.

Bogie · January 2012

hi Chrissy,

I had both core and fine needle biopsy on microcacifications.. Dr. will do oncotype test if the HER2 tests positive.

Hi Blessings,

thank you for sharing. sounds like the only sure thing is a path report. If I have to have chemo I will stay strong and do it. Not sure if I will and can work sigh....during treatment.

Bogie

CookieMonster · January 2012

Hi Bogie,

I was diagnosed with microcalcifications on my very first mammo EVER. Had a core needle biopsy which showed DCIS only. Also had a pre-op MRI and ultrasound. Had a lumpectomy and there in the middle of a large area of DCIS (bigger than the mammo indicated) was a small 1.1 cm line of IDC. Basically the cancer was caught early enough that it had JUST begun to go invasive.

Did your surgeon say anything about wanting to do a sentinel node biopsy (or other node biopsy)? That's where they'd check to see if any cancer cells have slipped out and into the lymph nodes (one of the first places you'd see them outside of the breast).

Also, I think you'll get Oncotype if you're HER2- not HER2+. You'll also probably get ER & PR info as well.

I think it's pretty common to have IDC inside an area of DCIS.

If your margins from the BMX are clear then you're not likely to need radiation, but HER2, ER, PR, and Oncotype will likely indicate whether or not you'll need chemo. That and the SNB if you get it done.

I hope that wasn't too confusing. Feel free to respond here or PM me if you have other questions.

Good luck to you!!

chrissyb · January 2012

Bogie,

I'm not surprised that your surgery showed more than the biopsies as the little that they take with both those that you had really only take the smallest amount and the mamo, US and scans cannot see everything either. Here's hoping that your Her2 test comes back negative.............I'm keeping my fingers crossed for you. Deep breath, you can do what ever you need to do, you are stronger than you think. As the saying goes, you may not like it but all your have to do is turn up.

Love n hugs. Chrissy

Bogie · January 2012

Hi Cookie Monster,

I had 5 lymph nodes removed on one side and they came out clean. My ER/PR =positive

still learning about HER2 test and what comes next.

I'm 2 weeks post op and developed a reaction to something, and incision is hurting again feels like a tight wire pulling underneath. Last week it was fine. Need to pack on Aquaphor plastic surgeon said since I reacted to Neosporin.

I will sit on here all night if I don't sign off now. Your responses have help educate me and made me feel better that this new dx can occur after surgery. You are all guardian angels!!!

Bogie

chrissyb · January 2012

Sleep well Bogie. Glad you are feeling a bit better about things.

Love n hugs. Chrissy

momofthree2011 · January 2012

Bogie,

I highly recommend the book "The Breast Cancer Survivor's Fitness Plan" by Carolyn M. Kaelin, M.D., M.P.H. It gives a workout plan for anyone who had a lupectomy or Mastectomy. Stretching techniques etc. It was really helpful to me after I had my bmx.

Take Care,

Debbie

Chantal10 · January 2012

Hi Bogie, this site has been so comforting to me in general. I have my bilateral mastectomy tomorrow early morning and I am nervous to get the results of the pathology back for the same reason you describe. I hope it is "only" Dcis, but the MRI suggested an area that might be more invasive in one area. My lymph nodes will also be tested and I will get expanders put in for reconstruction all in one shot! I already know its homone receptor positive. Im grateful as you mentioned that it as been detected relatively early, it was my first mammogram (i am 40) and like you I had no lumps (no family history). I have microcalcifcations throughout my breast that can not be felt at all. This is all surreal to me still. I have 2 young children and a lot of living to do!

Question, did you keep your nipples?

Thanks for listening!

Bogie · January 2012

Chantal,

If you get this before you go into surgery just stay calm and remember you are there to rid this disease. Have the nurses show you how to do everything, drains and to teach your husband how to get you in and out of bed. Line up lots of help meals, kids, house cleaning. Have your husband take 1-2 weeks off work to be your caretaker, best thing we did. I took anti naseau in and felt fine after anestesia. I found it easier to sleep in a recliner with drains in for two weeks.

Good positive thought and don't worry about test results till you have to. One thing I have learned, one step and one day at a time. This is the only way I could stay on course with all the tests.

The drains and expanders were not as bad as I thought. Take deep slow breaths after surgery and cough it feels tight but is good for you and will loosen my surgeon was right.

Best of luck, you'll do great !

Bogie

Bogie · January 2012

chantel, that was not even an option, nipple sparing since the cancer was so closer in the ducts. I'd rather be safe then worry about that. If it bothers you talk with your reconstruction surgeon you have options there.

Kd6blk · July 2012

I had DCIS and later they did aSNB taking out three nodes. I have two nodes withITC Mastectomy is in two weeks and I wonder if I will have a hidden cancer too.

owlwatcher · July 2012

I can sympathize with you about the reconstruction pain.on another note my surgeon said that even though the biopsy says one thing she said until the whole specimen is out of our body and examined they cannot say for sure what is in there. Thank you for being articulate about your feelings your thoughts help me validate my feelings about my journey.

DCIS & hidden invasive

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