Extreamly nervous

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123am
123am Member Posts: 8
edited December 2016 in Waiting for Test Results

38 and high risk. Mom BCX2 bilateral age 49 pre and 55 post. Mom's sister 64 BC agressive kind. A lot of other cancers in the family for generations. Genetic testing on mom negative, tested for 32 different genes. Counselor says we are probably a family with an unidentified gene, as the research is just "scratching the surface"

Anyways, I went on Wednesday for mammogram and mri with contrast dye. I was told two weeks and either I would get a call or a letter in the mail saying see you next year. Well to my shock I received a phone call back from the clinic, 48 hrs after initial appointment, now for an ultrasound scheduled for next week. As the radiologist himself wants to investigate my left side further.

Kinda nervous here. Didn't expect them to find anything. Not sure what to think....... is it? Or is it not?? Are they being extra cautious bc of my family history..???? Why are they being so quick with calling me and specifically scheduling my ultrasound appt with the radiologist present?

😟

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    123am-

    We're so sorry for the worry you're going through! Hopefully your doctors are just being extra cautious and thorough given your family history, and it all turns out to be nothing. Please keep us posted!

    The Mods

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

    So I received a call today from my doctors office. She started off by saying we need to get you scheduled asap for an ultrasound bc of your test results. I told her the clinic already has one scheduled. So she calmed down, but then I asked if she could read me my results and she pretended she couldn't find then. I said that's okay I'll wait while you look. After a bit she "found" them. She said 8mm nodule centalized and deep, that's why I can't feel it. So I asked for my bi rad score and she completely evaded answering that question. Come to think of it she was very elusive in answering anything. My question for everyone is A) what could this nodule be? B) should I request a biposy if they don't want to do one? Or do you think they will do one anyways bc I'm high risk?

    Thanks

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2016

    I totally get your concern. My family history is rife with cancers of all kinds. Thankfully, my genetics testing came back positive for 2 gene mutations--I say Thankfully because my beautiful 23 yo daughter has the same gene mutations and she will have much better surveillance than I had.

    Whether or not you need a biopsy probably  depends on what they find or don't find on your ultrasound. I do not find it odd at all that the radiologist would want to do the U/S herself. After all, she is the only one who can interpret it.  When I had my (routine) mammogram, they wanted to do an U/S on the spot. After the tech did my U/S, she had the radiologist look at it immediately. Then the radiologist did her own U/S, after which we all sat down for a pow-wow--my mass was definitely suspicious.  In fact, on the official report it was BIRADS 5. I was scheduled for a biopsy 2 days later and the rest is history.

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

    Okay went for my ultrasound.

    Left side with suspected fibroadenoma. Seen on mammo and mri. Couldn't locate on ultrasound. Central located behind nipple and deep. was told I had a swollen lymph in my left side also, noted on mammo. Took u/s pics of lymph. Said she was fairly certain the fibro was b9 anyways and stopped looking for it.

    Right side they were not going to look at bc she was certain is was just an inflamed cyst. I push for the look anyways. She said oh theres a cluster "something" and noted fibro changes. ?????

    Then she said come back in 6 months for another mri unless I feel something change???

    I'm a little lost here..... how can they be so certain it's okay?

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2016

    hmmm, . Do you have a baseline mammo for them to compare it to? Was it a 3D mammo? It is a relief that they think it is benign, but if you are concerned, maybe you should push for a biopsy. A biopsy is the only way to know for sure what you are dealing with. You could always seek out another opinion with a breast specialist, also. Best wishes.

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

    Yes I had a mammo back in 2014 that they compared this one to. Not sure what type it is though.

    My aunt is a bit concerned bc hers was hidden too behind the nipple but she was older. She had a clean mammo and 6 months later it was 1.8 cm and agressive. (Er+ but she had a hysterectomy years ago)

    Also having the swollen lymph with prossible fibroadenoma, concerns?

    Should I ask for another ultrasound in a couple months? Or a biopsy by mammo? And the other side with the cluster of ? (I think probably cysts) should I have them biopsied?

    This is a specialized high risk breast clinic.....

    Thanks

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  • Wicked
    Wicked Member Posts: 141
    edited June 2016

    Make sure to find out your BIRADS score before asking for a biopsy. Sometimes insurance companies won't pay for it if it's not at least a 4. If you're okay with paying for it yourself, then it's a non-issue. I was able to access all my reports and images through the Patient Portal at my radiology center. Do you have this where you are? It might help for you to be able to see what's in the reports. No one wanted to tell me anything either over the phone, but I'm able to see all of it on the portal.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2016

    123, I wish I had answers for you, but follow your gut and get all of the information you can before you decide. I haven't dealt with swollen nodes or cysts myself. I had a benign lump in 2009; my BS said it was benign from imaging and physical exam.... She said do a follow up in 6mos. I couldn't stand waiting knowing it was inside of me, so I got another surgeon to take it out a few months later...and luckily it ended up being benign, but it had grown, so probably needed to come out anyway. Pls keep us posted! Good luck.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2016

    Like Wicked said, your insurance may not want to cover it, but with your family history and being "high risk", your surgeon can push the issue and probably get it done....I am not sure what my Birads was in 2009, but they paid for it, even though they thought it was benign. I have family history, also.

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

    good thing is I live in ontario so I have medical coverage. I'm birad 3. I'm just a passive person so I generally go with what the doc tells me. (Even if i dont agree) Hubby doesn't like what they said, same with my family. If I called in a month would they redo the ultrasound if I requested? I would like it out but if they can't see it on US how do they get it?

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

    Well I've patiently waited my 6 months (actually 7 but who's counting...ME) and had my follow up MRI yesterday. Again waiting for the results.....trying to be calm and keep busy.

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

    Waiting her with you. I'm in Ontario too. You are not alone.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2016

    Waiting is the worst. Keeping you in my thoughts.

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

    birads 3 again recommend 6 month follow up. Nodule size is the same but has changed to a plateau curve. Before it had below threshold enhancement. I hate waiting......... another 6 months :(

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