Is this even possible...?

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KNardo88
KNardo88 Member Posts: 54
edited July 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi everyone, I'm hoping that maybe someone has some insight or experiences to share that might help me make sense of this all:

Here's the backstory: I was DX'd 4/25 with Stage 1A IDC in my right breast, ER+ (20%), PR-, HER2-, Grade 3. I'm 27 years old, and after my DX I also learned I am BRCA1+. I then had several tests and scans done: Bloodwork, CT Scan, MRI, and Bone Scan. All these tests and scans came back clear. I sought a 2nd opinion from Dana Farber in Boston, and went forward with receiving treatment there. On 5/20, I had a BMX with TE placement and the final pathology after surgery revealed tumor size of 0.9cm, LVI absent, and negative nodes (0/7). However, based on my young age, the high grade/aggressive nature of the tumor, and my BRCA status, I began adjuvant chemotherapy on 6/23. I'm receiving AC every 3 weeks, for 4 rounds. After that, I'll start taking Tamoxifen for the next 10 years.

Cool, right? Okay. Here comes the crazy:

My upper right leg hurts. Not all the time, and not badly, but I've been hyper-aware of it since right after my surgery. I've mentioned it to my doctors, and no one is concerned, except for me. I'm REALLY concerned. You know where my mind goes? Bone mets. It's in my femur. That's now my first thought when ANYTHING hurts, anywhere. Stomach pain-- it's in my liver. Back pain? Obviously it's mets to the spine, or my lungs. I just coughed! Obviously now stage IV.

I know these fears are "normal", and I am actively seeking out professional long term mental health care as a result of this, but is it absolutely maddening and clearly getting to my loved ones as well.

I probably shouldnt even be asking this question, but is it even realistic, based on all my information above, to be seriously concerned that I have mets?!

I'm going absolutely insane. I can't be asking for scans every week because my leg/stomach/back/eyebrow/toe/whatever hurts, but I find myself needing CONSTANT reassurance.

Thanks for reading...


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  • pupmom
    pupmom Member Posts: 5,068
    edited July 2016

    Anything IS possible, but given your stats, the probability of mets is very low, in my completely non-medical opinion. When I worried about such things, and my docs reassured me it was nothing, I listened to them. This approach has gotten gotten me through almost 5 years, post diagnosis (with no progression). Trust the professionals is my advice!

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  • Lou10
    Lou10 Member Posts: 332
    edited July 2016

    When you talk to your doctor(s) about new pain or other symptoms, it might help to ask them what to do if the problem persists. Having a potential follow-up plan may provide a bit of comfort.

    Also bear in mind that your body has been taking a beating since treatment began and you're still in the thick of it. Hang in there.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2016

    I agree.....listen to your docs. Your bone pain could be from the chemo...are you getting neulasta shots? This can cause bone pain and aches.

    Believe me I know it is gut wrenchingly difficult sometimes to not worry about progression, but given you had clean scans not too long ago and the docs aren't concerned I'd ride that wave for awhile. Take care ((hugs))

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  • KNardo88
    KNardo88 Member Posts: 54
    edited July 2016

    I'm not getting Neulasta shots, as my regimen is not dose-dense

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  • VLH
    VLH Member Posts: 1,258
    edited July 2016

    First, I'm so sorry that you're having to face all this, especially at a young age. Just a thought...have the doctors ruled out a DVT problem? I ask because my active, athletic friend had pain issues an extended period after surgery and it took a panicked trip to the ER for the problem to finally be properly diagnosed.

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  • KNardo88
    KNardo88 Member Posts: 54
    edited July 2016

    When I mentioned this the very first time to the Oncology Fellow who works alongside my Oncologist, she did bring up a DVT, but the other symptoms of a DVT didn't check out. She didn't actually do any testing for one, but based on the vague leg pain being the only symptom I was presenting, she wasn't worried about that...And wasn't worried about the pain in general. She said it's pretty typical for someone to get random aches and pains in various areas following a major surgery, especially if they are now relatively sidelined from a normally semi-active lifestyle. Not that I was an athlete by any means, but my full time job involved being on my feet all day long and suddenly I was largely off my feet, out of work, while recovering for weeks on end. I took that as an acceptable answer, as she also told me that the cancer wouldn't have just jumped from my breast to my leg like that... I trust my doctors, but I can't get my racing mind to stop agonizing over the most obscure and "far-fetched" possibilities. I would feel a lot better if the leg pain had gone away after I returned to work...

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  • Brightsky
    Brightsky Member Posts: 45
    edited July 2016

    I agree with everyone here. Trust your oncologists and BS. They know the red flags. I say this after I had serious trust issues my my PCP who was a resident and ignored a lot of my symptoms that finally led to a breast cancer diagnosis. It was so hard at first but eventually I put my trust in them. Cancer is a roller coaster...I fluctuate between "I'm fine" and "I'm not fine". Every little ache and pain...my first thought is cancer. When you take a concern to your doctors, allow them to put your fears to rest. If my doctors tell me not to worry about it, I don't. That's not to say I don't find new things to fret about :-) That seems to be my new normal. Take care.
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