Has Anyone Else Needed 3 Biopsies to Figure it Out?

JustJenn72
JustJenn72 Member Posts: 6
edited June 2016 in Waiting for Test Results

I've had a mammo ...2.ultrasound...a tomograph....core needle biopsy....vacuum assisted biopsy and now scheduled for an incisional biopsy. All since mid January and still not a conclusive answer....only that they want to be sure. While that's not necessarily a bad thing.....I'm tired of the worrying and waiting. I just want to....is it? or isn't it?

I go annually for my mammo and have since 30 due to a significant family history. Many times I get called back for an ultrasound and it always turns out to be nothing.

My last one was April last year because of a massive lump which turned out to be simple big ugly cyst. This past January...not quite 10 months later...I start having bloody discharge from my nipple.

They did a mammo....nothing.....ultrasound....nothing......tomograph....bingo there's something there highly suspicious of DCIS....clustered microcalcifications.....rated birad 4. Immediate core needle biopsy that day within the hour.

Results come back completely benign but the radiologist recommends an MRI. Apparently I also have the worse density for breasts possible. MRI finds the same clustered calcifications no masses.....area affected is 3 cm by 9 cm. Next recommendation is repeat biopsy but vacuum assisted.

Vaccum assisted biopsy done....sclerosing adenosis in the samples but they only obtained 4 calcifications. There is indication of lobular fibrcystic changes. Ok....not great but I know that's benign so I'm ok right?

We want to do an incisional biopsy now....take a golf ball size from the area with the lesion. I ask why...everything came back benign. I'm told the clinical findings....the imaging and the benign findings are discordant. We feel the need to keep going until we are certain we can tell you it isn't.

I've done a lot of reading and everything suggests the core needle and vacuum assisted biopsies are pretty accurate.

Has anyone else been through this? Several biopsies to get a yes or no answer? From what I can understand it's rare that incisional would change the diagnosis given there have been two other biopsies.

Any information....experiences ....input....would be helpful. I tend to worry less when I understand things....good or bad


Comments

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2016

    My Original Girls were like bags of rocks. Extremely large, dense, and fibrocystic. My Radiologist was amazing. Early biopsies showed DCIS and IDC. In total, though, I went through 8 different diagnostic tests to ease HER mind (and mine)  that she had identified all the cancer in my breasts. I was very glad she did.

  • JoniB
    JoniB Member Posts: 346
    edited April 2016

    justjenn72 - I went through two biopsies in January. The radiologist wanted a second biopsy stating the first was discordant. I was not happy to have another biopsy since my first was benign. The second was a core biopsy under mri. They took 19 samples and found the cancer in the later ones (4 mm in size - tiny). I was told I was lucky to have a radiologist who insisted on more testing. I am.

  • JustJenn72
    JustJenn72 Member Posts: 6
    edited April 2016

    Thank you blessings. I am grateful my health professionals insist on continuing to investigate even with benign results because they just seem to feel something isn't right.

    Unlike you...initial biopsies have shown nothing of concern. However I must admit....my gut has been telling me otherwise since day 1 when I had the nipple discharge. Obviously the doctors feel the same way. I'm optimistic that even this last biopsy will prove benign.....but now I have the fear of "what if they miss it....find it later....then what?"

    I chuckled when you described the originals as bags of rocks. Those sound like mine. Large....lumpy....dense....which is why I always got called back after screening mammo for ultrasounds.

    It's been explained to me that these types of breasts can tend to hide things.

    Anyways....thank you for the response. I couldn't agree more that I'm glad they are persistent in testing to put their minds at ease and mine

  • JustJenn72
    JustJenn72 Member Posts: 6
    edited April 2016

    thanks Joni. I guess even with 2 biopsies a third could potentially find something not benign. It's just been so frustrating and a long haul.....tests ....biopsies.....appointments. I just want to know....yes or no. If no...wonderful.

    If yes....that's ok.....then I move forward with whatever needs to be done


  • suzydthatisme
    suzydthatisme Member Posts: 28
    edited April 2016

    I went/am going through the same thing.  They picked up an 'architectural distortion' on my screening mammogram.  It was rated birads 4C, which is pretty scary.  My initial core biopsy was benign but the radiologist and pathologist agreed that another core biopsy should be done with a larger gauge needle as they weren't convinced that they got the area.  The second core was more extensive - it took an hour and a half but the radiologist said she was convinced she had gotten the right spot.  In that sample they found a small area of ADH and radial scar, so now I need an excisional biopsy - I'm currently waiting for the surgery date.  I know it's a huge pain to have all these procedures but I'm thankful that they're doing their jobs so well - this may have saved me from more extensive disease down the road.  They aren't particularly worried - it doesn't appear to be a red alert situation - they said it should come out, though.  Good luck with your situation!

  • JustJenn72
    JustJenn72 Member Posts: 6
    edited May 2016

    Good luck to you too Suzy. Had my excisional biopsy last Thursday and it went well. Not as much bruising as the vacuum assisted and core needle done before but I've got a grapefruit on one side and the other is like a watermelon lol

    Needless to say the girls have been flying free since last Thursday. Don't mind my humour. If I can't laugh I'll cry. I've found the process very frustrating and emotional. I'm not sure if I fear the unknown can be measured right now.


    How long has it been for you since the very first tests? My symptoms developed mid-late January. Imaging and initial core needle biopsy early February. MRI done early March. Second biopsy, vacuum assisted this time....end of March. And the excisional biopsy May 12. I get the results May 30th.

    Please let me know how ou make out Suzy


    Cheers Jenn

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    Jenn, I had a core biopsy in December and it came back benign so the surgeon and I made a date in January to take out the lump anyway. It was done in a side room, not an operating room so just local freezing. Turns out that the lump was malignant!! They went back and checked the core biopsy and Ooops, it was malignant too!!! Stupid considering I was already a breast cancer patient, they should have looked MUCH harder and not assumed anything. My surgeon was HORRIFIED to say the least as now I'm stage IV.

    So pursuing it is a good thing, and the best lump is a lump in a jar. I had left one job and started another and found out I was stage IV two days after starting my new job. I had just bought a car, as well, once I found out it was "benign". Sigh......now I have a car payment (my other car was paid off) and a new job!

    The only cool thing in this whole debacle is that I got to see the lump. Looked like a tiny human heart with crap hanging off it like arteries. I had thought during the original ultrasound that I saw vascular activity to the lump on the monitor when she turned on the colours so I was surprised when it came back benign and told my DH that I'd really dodged a bullet!

    7 years ago with my initial diagnosis I had a bloody discharge from my nipple. Turns out it had nothing at all to do with my breast cancer. I think it was just the universe making the doctors look closer...

    Good luck, sweetie!

  • stephincanada
    stephincanada Member Posts: 228
    edited May 2017

    Hi Jenn,

    Did you know about the high risk screening program at Princess Margaret Hospital in Toronto? If you are eligible for the program, you get an annual MRI and mammo. Given your dense breasts and family history, this might be a good idea for you in the future. Best of luck with this round of testing. I, too, am waiting for test results and am beside myself with worry.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    I would think either London or Hamilton would have a similar program...no?

  • stephincanada
    stephincanada Member Posts: 228
    edited May 2017

    Hi Barbe1958,

    I don't know about London and Hamilton. I am in the high risk program in T.O. and have been impressed with the quality of care. I am so sorry to hear about your diagnosis and wish you all the best.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    Steph, you're in Kitchener, though, wouldn't London or Hamilton be closer than Toronto? I used to live right in downtown Toronto and walked everywhere, so when I have to drive anywhere there I HATE it!!!!!

  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    "It's been explained to me that these types of breasts can tend to hide things."

    Similar story here. I also have a family of history of cancer. My original diagnosis was early March and here I am still waiting to hear if they think they found everything from the tests. i don't think there is a scale big enough to measure my level of fear and anxiety at this point.

  • stephincanada
    stephincanada Member Posts: 228
    edited May 2016

    jenn33214,

    I feel your pain the radiologist told me today that I most definitely have cancer and that it "blew up" over a very short period (I am closely monitored due to family history). I am waiting for the lumpectomy and biopsy results and am shaking with fear. I took an atavan this morning, but the pill I took this evening doesn't seem to work as well. any other suggestions re: anti anxiety meds or techniques?




  • barbe1958
    barbe1958 Member Posts: 19,757
    edited May 2016

    Magnesium. Seriously. I started it last Fall and have gone through HELL since then and been able to react appropriately. Financial, 2 job losses so two new job starts, DH with basal cell carcinoma, DH lost his job first day I started rads for stage IV recurrence and so on. I am amazed and stunned that I am handling it all so well and the only thing I can think of is the magnesium. Please give it a try. I don't remember how long it took to kick it, but one day I thought, "wow, I'd normally be ballistic by now!" I just use what I found at Walmart and the suggested daily dose. Apparently 90% of us are magnesium deprived.

  • 123am
    123am Member Posts: 8
    edited May 2016

    Hamilton has high risk screening clinic out of St Joeseph's, on Charlton Ave. That's where I go.

  • stephincanada
    stephincanada Member Posts: 228
    edited June 2016

    Hi Jenn,

    Here is the website that gives information for the high risk screening program in Ontario:

    https://www.cancercare.on.ca/pcs/screening/breastscreening/OBSP/highrisk/

    Unfortunately, it seems that breast density does not play a factor in getting you access to MRI's in Ontario. I understand that in the United States, having dense breasts is one of the factors that makes a patient eligible for MRIs.

    Something must be done about this in Canada!!

    Stephanie

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