Biopsy says no carcinoma--now I'm told 20% chance DCIS !?

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DeepWaters
DeepWaters Member Posts: 73
edited August 2018 in High Risk for Breast Cancer

Hi all! It's me, the stoic known as DeepWaters, back like a bad penny. LOL Well, I thought my current adventure was over but not quite. For those who don't know me, I'm almost 54 and at high risk for BC due to strong family history and numerous biopsies which have been required over the years. I have very dense breasts and have mammos and bilateral MRI yearly with the occasional US thrown in for good measure when needed. I have not been genetically tested.

Early this year I began to have right nipple discharge of a clear yellow fluid. Saw PCP right away and we moved up my screenings and I had mammo, US, and MRI on both breasts. They found areas of concern in the right breast (with the discharge) but also in the left breast as well. MRI guided vac assisted biopsies showed no cancer but rather: LEFT BREAST - Focal usual ductal hyperplasia with apocrine metaplasia, microcysts with focal rupture and chronic inflammation, acute and chronic inflammation. Negative for atypia or carcinoma. RIGHT BREAST - Intraductal papillomas, focally with usual ductal hyperplasia. Chronic inflammation associated with lobules. Negative for atypia or carcinoma.

The multiple papilloma explain the discharge (which stopped after the biopsies) and I thought I was good to go back to my usual breast health program. But alas, at my annual routine visit with my high-risk breast doctor, she reviewed the biopsy results (from MD Anderson) and she referred me back to the oncology surgeon (where I always feel like such an imposter patient since I don't have BC). The surgeon says DCIS can sometimes be affiliated with multiple papilloma and even though I didn't have "atypical" ductal hyperplasia", due to my high risk she strongly recommended excisional biopsy (lumpectomy?) of the area where they placed a clip during the biopsy on the right. She said based this on all factors in my particular case, she placed the likelihood of finding DCIS (or worse) at about 20%. Shocker for me! I really thought I was in the clear.

So, my question to you very informed and wonderfully supportive ladies…I have done my research and found that, indeed, occasionally even "usual ductal hyperplasia" (as opposed to atypical) and multiple papilloma can hide a bit of DCIS and an excision can result in an "upgrade" as the call it to cancer (seems downgrade would be a better term!). But I had 13 samples of MRI vacuum assisted biopsies through a 9 gauge canula (fat!). What are the odds they could take that much tissue and not identify any possible cancer if it was there? I understand maybe a thin needle biopsy missing some. But, to me, it sure seems unlikely in my case. That said, I don't want to be cavalier with my health either.

Thoughts?

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  • Lea7777
    Lea7777 Member Posts: 274
    edited July 2018

    15%-20% is the standard risk of cancer when excisional biopsy is done due to any kind of abnormality in the needle biospy. There probably are not odds out there for your unique situation, so the fallback is the standard. I would agree with your statement, "it sure seems unlikely in my case" with respect to cancer. I would follow the advice of the oncologist, but I tend to be risk averse.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2018

    personally, I’d rather take that section out and be sure one way or the other. Yes it’s possible it could’ve been missed with the biopsy. It just depends what your personal risk tolerance is. The discharge (even though it’s stopped) really bothers me. The average woman has a 12% risk of developing BC in their lifetime. Odds are against it happening, but look how often it does. You’re already high risk and at a 20% chance the odds are obviously higher. Just my $0.02.

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited July 2018

    Lee7777 and Lula73, thanks so much for your responses. They were timely indeed. I'm sitting here considering that I may not need the surgery. I am certainly wavering. But I guess if there is any chance there may be cancer I want to find it.

    As an update, the discharge has now returned so it seems there is, at the least, still a papilloma in that duct. I'm going to go ahead and have the ductectomy and just remove that whole area.

    It's so frustrating to just recover from the massive hematoma for the MRI guided biopsy (my whole breast was black!). Now here I go again. Sigh. I'll let y'all know how it goes.

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited August 2018

    Well, my excision is tomorrow. I'm not worried at all about that as I'll be under a general. I guess I should be worried since the last time I had a general (about 12 years ago) I had a near fatal seizure in the recovery room! But I'm not worried about that. What I am stressing over is the procedure early in the morning in which they place the radioactive clip or seed at the place where they marked with a seed during my MRI guided biopsy about six weeks ago or so. That procedure was not pleasant and I swear I still have a bit of PTSD over that! Plus my hematoma from that procedure is still tender and healing. So I'm not looking forward to that! Wish me luck!

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  • jenndenino578
    jenndenino578 Member Posts: 75
    edited August 2018

    DeepWaters =

    Good luck w/your excisional biopsy tomorrow. I had one 8 weeks ago, there was no cancer found. They did find some ADH (Atypical Ductal Hyperplasia) and a radial scar but they removed the whole abnormality. I go back in 3-4 months for a mammogram and they will repeat the MRI next year if everything looks okay.

    I made sure to take it easy for a week after the surgery, I told my husband and son I wasn't going to be lifting anything. They did all of the housework, laundry, etc. I didn't want to take a chance of getting a hematoma or other complication. I healed well, the scar tissue is still a bit lumpy though. I had a big reddish purple bruise at the bottom of my breast which cleared up in about a week and a half after the surgery. It wasn't that bad. I don't like touching the scar though, it makes me squeamish. I also have an abdominal scar from a surgery in 1979 that took years to heal.

    I wonder what gave you a seizure...I was given Propofol, Fentanyl and some other drugs in my IV. I heard the anesthesiologist asking for the drugs right before he put the mask over my face. I have PTSD from my various surgeries over the years....never had a seizure after general anesthesia. I wonder what causes that? The only thing I had was a sore throat, I asked for ice chips when I woke up in recovery. Then my legs were very wobbly so I needed help getting to the restroom to urinate afterwards and I asked for a wheelchair to take me downstairs about 2 hours after the surgery. They gave me a lot of anesthesia and I felt kind of cr#ppy for the next 2 days. I didn't have any nausea though which was good. I think they gave me too much anesthesia for such a short procedure to be honest. I also had ice cream for 2 days because of my throat being sore from the tube they put down my throat during the surgery. I tried to eat some cereal and it was like eating broken glass.

    I had something called a "savi-scout" put in the week before the surgery. It wasn't radioactive though, it was an RF (radio frequency) chip which the surgeon was able to locate the area he wanted to remove. I think it's better than having a wire put into the breast. I think they are phasing out using wires for excisional biopsies nowadays the savi-scout is more accurate. It's like a micro chip you have put in your dog, I think. They did use a big needle (uncomfortable) to put it into the spot and they also had the ultrasound wand over the breast to locate the area.

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited August 2018

    Hi Jenn,

    Thanks for your quick reply and the good information! We don't know what caused the seizure but I'm told they did an immediate EEG in the recovery room and the next day the neurologist told us they saw dramatic seizure activity in both of my temporal lobes. My husband who was in the room at the time said I scared the ba-jeebees out of the hospital staff and that the Chief of Neurology and a number of hospital administrators were standing around for a while watching the action. The neurologist started me on two anti-seizure meds which I took for many years. I still take one of them. Anyway, the neurologist told me he thinks it might have been the reversing agent they gave me when I was slow to awaken. I was waking up, but apparently not fast enough to "clear the recovery room bed". Geez! Really? Anyway, I have informed the doctors for tomorrow NOT to give me a reversing agent and to just let me wake up slowly on my own. We don't know that is what did it, but no sense risking it just to clear a bed more quickly!

    Deep Waters

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  • jenndenino578
    jenndenino578 Member Posts: 75
    edited August 2018

    DeepWaters -

    Hopefully that won't happen again tomorrow. (the seizure). Sounds really really scary.

    I do recommend getting some ice cream to have after surgery, my throat was so sore it hurt to drink plain water. The ice cream felt great though. I didn't really wear a bra afterward, I had a large bandage over the incision area. I just put my shirt on afterward and got in the wheelchair and I doubt anyone even noticed I was braless as I was sitting down. I wore a shirt with buttons down the front and roll up sleeves. I got it in Kohls for $14.99. I also bought a sports bra also but unfortunately the X Large I ordered online was too small for me. The cups on the sports bra were practically non existent. I could not even close the front of it. I normally wear a size 40 C Olga bra. I should have gotten a nursing bra to wear afterwards, as they are really roomy and don't have underwire in them. I spent most of the first week lying on the couch watching television and surfing the net on my laptop as well as sleeping the first few days. So I really didn't need a bra. I did wear one when I went out of the house though. I have a few Olga bras which have very light thin padding in them and they are really roomy and comfortable but they do have underwire. I think I gained a few lbs. I want to try to drop about 10 lbs, if possible. I just hit 140 lbs.... I like to be about 130 lbs if possible.

    Anyway, good luck tomorrow hope all goes well.

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  • Druanne
    Druanne Member Posts: 295
    edited August 2018

    DeepWaters,

    MRI assisted biopsies are OUCH!! I had the same thing on my right breast in May......They poked me 18 times with that giant needle.....still a bit achy. They were investigating a 6 cm area that enhanced on my MRI. They took from the 12 oclock & 2 oclock positions and I am grateful they did! There were normal cells at noon and LCIS at 2 oclock. I have decided to have a bilateral mastectomy due to having a TP53 gene mutation, previous cancer on my left side, family cancer history and super dense breasts....My surgery is August 28th.

    Good luck tomorrow and NO SEIZURES!! :)<3

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited August 2018

    Well, I made it through the lumpectomy surgery under a general with NO seizures! Yay! So that is good. The radioactive seed placement right next to the clip (mammogram guided) was a breeze compared to the MRI guided biopsies on both breasts at the same time! On the MRI guided biopsies I had 13 samples vacuum extracted on EACH breast and was on that table for more than 2 hours! It was not fun and I won't forget that for a long time.

    But yesterday, the seed placement via mammogram and the lumpectomy under a general were not bad at all. I'm very sore today with an incision half way around my nipple (the areola). I don't see a dent in my breast but it's swollen so that is yet to be seen. Ice is helping more than any medication.

    I'm, of course, hoping for B9 results (again). Especially since I thought I was totally in the clear until they explained the need for yesterday's surgery to look for hidden DCIS around the multiple papilloma. My gut still says I'm in the clear so I'm not very concerned.

    Thanks to all of you who have been so supportive. I thought about everyone here on the forum yesterday while I was prepped but awaiting surgery. I thought about all the women who'd been right where I was and how hopefully in the future we won't have to undergo such barbaric procedures. There will be a better way in the future! Thanks again everyone!!

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited August 2018

    Sending you every good wish for benign results! Thanks for the update.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited August 2018

    Best wishes to you after your procedure. Your gut and odds are both in your favor.

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited August 2018

    Great news! The surgery went well. Very little pain in the days afterwards. Results are in-- B9 BINGO! So, while it's as I strongly suspected, it's always nice to have confirmation. After my follow up appointment with the breast surgeon next week, I'm back (finally) to my normal schedule of yearly MRI / Mammo / & US-as needed. I am ready for a lot of boring routine when it comes to my breasts!

    Thanks to everyone who was so supportive throughout this whole process!!!


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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    Great news Deepwaters.

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