Recurrence Risks

Riplee

Hello Everyone,

At age 29 I was diagnosed with bilateral DCIS. Left side was high grade comedo and the right side was a rare papillary dcis. I am also BRAC2 positive.

I am now 47 and over the past year my doc has been following a small lump in the right breast. In April 2017 the sono read "breast tissue, no sign of metastasis". This past Thursday I went back for a follow up sono and the report read "new 2mm x 2mm lesion suspicious for malignancy, may be fat necrosis" Birad 4a.

I am trying not to freak out, just wondering if anyone has experienced a recurrence or a dcis recurrence after so much time has pasted. Thanks so much for reading.

Moderators

What kind of treatments did you receive at age 29 for your bilateral DCIS? Did you do any prophylactic follow ups? Might be helpful to understand the full picture. Fingers are crossed that all is just fine!!

Riplee

I had a bilateral mastectomy and radiation only on the left side. No chemo or tamoxifin, it was ER+. I go for MRI annually. Last MRI was in Jan 2017. Thanks for responding.

Moderators

Ol, so you did have a mastectomy. Did they suggest that you have Tamoxifen, or any other treatment (prophylactically()?

KBeee

Hoping biopsy is benign. Keep us posted

obsolete

Hi Riplee, so sorry that a probable recurrence brings you here with us. I also had been originally diagnosed with grade-3 DCIS (conventional), and a fast growing 30mm solid & invasive papillary (palpable) tumor was discovered 1-1/2 yr later. Rather than an actual recurrence, it had probably been missed originally.. Your 2mm papillary tumor is quite tiny, thus you are fortunate that MRI found it. DCIS frequently is associated with papillary lesions. Best wishes with your treatment plan & surgery. Papillary thread:

https://community.breastcancer.org/forum/137/topics/785782?page=10#post_5087278

Riplee

Thank you so much for replying. I got the results and it read Benign Fibroadipose Tissue. Although I am happy, I am not convinced. They missed the first papillary diagnoses when I was original diagnosed in the right breast (it was re reviewed to papillary dcis) and this time the spot is smaller. They explained that it is just dense fat breast tissue but I don't understand why the sono showed a such a dark spot and reported it with posterior acoustic shadowing. There is still a lump there about the size of a gum ball and they said its just fat tissue. I am just worried that they missed something on the ultra sound core biopsy! Sucks..... Thanks for listening.

KBeee

You can always ask to have the lump removed for peace of mind. You also can ask for a second opinion on pathology

Riplee

Yes I know, I am trying to get the pathology slides reviewed for a second opinion but they want a letter from my doctor requesting this. However, my Dr. is confident in the findings. If I can't get my GP doc to request the second opinion I will have it removed. Thanks so much again for listening

KBeee

Frustrating situation. I do understand your frustration and am glad you're pursuing it. When I had my recurrence, the doc said he was 99% sure it was scar tissue, and the reason he did not say 100% is because he never does. My gut told me otherwise and I told him I needed to know 100% because my gut has never been wrong and I needed to sleep at night. He removed the lump 2 days later and it was a recurrence. I had not had it biopsied, but either way, if it is worrisome, trust your gut and get it out. Even if it is not troublesome now, you do not need the added stress of worrying if it is growing/changing, etc.

Riplee

Sorry to hear that you went through it as well. Yes I agree, Unfortunately our gut is usually right. It's two big for me to just leave it alone. Thanks again for your support, I really appreciate you taking the time to respond. I will keep you updated, hopefully with good news

Rubytoos

Get them to send the slides to Johns Hopkins. They have excellent pathologists and also a rare breast cancer division. Papillary carcinoma is rare and from what I have experienced, easily missed. No matter how confident your dr is they cannot refuse you a second opinion. If JH concurs that it is a fat deposit I think you can relax and spare yourself needless surgery.

Riplee

Thank you so much. I didn't think of JH I sent to Memorial Sloan Kettering in NYC, what do you think? I should have the results this week. I know it is rare, it's so frustrating. Do you think Sloan would catch it?

KBeee

MSK is a good choice as wrll

proudtospin

well i reoccured this past fall after being clear since 2008, i am now stage 4 with mets

I was originally treated with lumpie rads and did 5 years of an al now doing chemo at sloan

Riplee

Thanks...

Riplee

Oh No so sorry! Cancer Sucks!!!!! What type did you have in 2008? I am having Sloan do a second opinion but I am really concerned that the biopsy missed the small nodule. Grrrrrr

proudtospin

my original was dcis

Riplee

sorry... yeah I was good not worrying for 10 years but the last two years I always feel like crap, I feel like my body is trying to tell me something. Thanks again for responding. Jo