Really concerned

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Fairchild
Fairchild Member Posts: 206
edited May 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

I'm trying to get well, but I'm really concerned.

I was diagnosed with pleomorphic lobular CA (HER2+), invasive lobular, and invasive ductal CA, stage 2A, a year ago. I had BMX and chemo, and I'm in the process of my Perjeta & Herceptin treatment now. I'm back at work and trying to get focused on rebuilding my life.

But the last couple of weeks have been so stressful! First I found a lump in my armpit. An ultrasound suggested that it's just scar tissue, but the radiologist (who is really careful) wants me back in 3 months for a repeat scan, and my ONC wants a biopsy then.

And then 2 weeks ago I slipped and fell, hitting my head so hard that I was knocked out and lost some memory around the time of the fall. My ONC wanted me to have a CT just to make sure my brain isn't bleeding, so I had the scan a week ago. No word from my oncologist about the results, which is really unusual for him. So a couple of days ago I checked the online portal to medical records and discovered that the CT report was posted. (Usually the doctor contacts the pt to go over findings first.) It said I don't have a bleed, which is good. But then it goes on to say:

"More focal low-attenuation within the right frontal lobe high convexity anteriorly. There is suggestion of some remodeling of the cortex, and this may be an arachnoid cyst."

I know that arachnoid cysts are benign, but they are also usually congenital. I have had a couple of CTs/MRIs of the brain before (due to various accidents) that were completely normal, so this thing is clearly not congenital.

I've messaged my ONC, but didn't hear anything from him, which is really unusual. Then called today and spoke to the NP. I asked if I shouldn't worry about it b/c it didn't sound like it was related to breast cancer. He said NO-- that it wasn't necessarily unrelated, and instead I should follow-up with an MRI to identify what's wrong more clearly. He was working on scheduling it.

Now I'm really worried. Between the 2 episodes, all in the last couple of weeks, I feel like I just can't outrun the CA. I still kind of doubt this is anything terribly wrong, but the sense that I need to be attending to these things, the endless doctors' appointments, and the sense of vulnerability are just driving me crazy.

Does anyone know how common my experiences are???? Did you have to go through all this testing, too? How likely is it that this thing is a metastasis? How are mets found in the brain? Any information would be great, b/c it's the not knowing and waiting that are driving me crazy! Many thanks!

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2019

    Sorry to hear about the rough time you've been having. Were you dizzy or light headed before the slip and fall?

    I had a brain MRI with contrast after my bone mets were found so I think that's the standard imaging modality. At least you have some prior data for comparison! The brain is constantly using lots of glucose which means it practically glows on a PET scan making that option much less reliable for detecting tumors inside the skull...

    The thing with lumps, bumps, and lung nodules in a cancer patient is that, once they are seen, you are on a call back schedule to track stability. First they check maybe in 3 months, then 1/2 a year or whatever depending on how things look. Even when it's likely to be benign, the anxiety is there. Let us know how it turns out.

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  • rockymountaingirl
    rockymountaingirl Member Posts: 78
    edited May 2019

    Vnrph is right; lumps and bumps and other oddities in a cancer patient always require followup. That is true even if it is virtually certain that the lump or bump or whatever is NOT cancer, and I know this because it recently happened to me. I had a very minor fall last month, a couple of weeks before I was scheduled to have a mammogram. As it happened, this was my first mammogram after completing treatment for breast cancer. The fall resulted in a big old bruise on my left breast, which is the one that had the cancer, and a hematoma in the breast. I was a little concerned that the mammo would hurt more than usual because of the hematoma, but it did not occur to me that there would be any other consequences. Boy, was I wrong. Even though I explained what had happened, and surface bruising on the breast supported my explanation, I was still told that I had to have an ultrasound. And, even though the ultrasound ALSO said "nothing to see here, just a hematoma," I have to go back in 8 weeks to have another ultrasound to prove that it's gone. Lesson learned; next year I will be extra careful not to bump my breast right before I have my mammogram. It sounds like your doctors, like mine, are being extra cautious. That is a good thing, except for the part where the stress of waiting for the "all clear" can make you crazy. I'm sending you a hug, together with instructions to be kind to yourself while you wait to get all of this sorted out. Do things that are fun and relaxing, and try not to worry too much.

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  • wallan
    wallan Member Posts: 1,275
    edited May 2019

    I agree. Anytime you have some kind of symptom and you report it or the doctor sees it, you will be scanned and monitored. Its the nature of the beast. I eventually learned to laugh about it but I must say the first few years after my first BC diagnosis were very anxiety provoking. I dreaded symptoms and I dreaded going to the doctor to be poked and prodded and scanned ....Again. And then when something showed up, to be scanned again..... sigh....

    Now, I am more relaxed about most symptoms realizing they are likely not cancer. Some one on these boards recommended writing down your symptom on a calendar and forgetting about it. If the symptom is worse or not improved in about 3 weeks or so, then go to the doctor. Be tested and scanned. And realize, most of the time, its not cancer.

    Welcome to life after BC. It will get easier and you are being looked after. So those are good things.

    Hugs

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2019

    My son is a radiologist, and he shared with me that one of the dangers of scans is the discovery of "incidentalomas," or completely benign stuff they weren't scanning for in the first place. I didn't know I had a cyst on my kidney until my first PET scan. I don't give it any thought, but I would have been fine never knowing about it.

    Not long after I finished treatment I accidentally pulled down my car's hatch lid onto my head--hard. It really hurt, and I got a goose egg. But the lump worried me, and I remember going to my husband and saying, "honey, feel this--do you think it's cancer?"

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  • illimae
    illimae Member Posts: 5,710
    edited May 2019

    It’s my understanding that only brain MRI’s are the scan for brain mets and sometimes they just can’t tell for sure the difference between blood vessels and other normal or benign things when they’re very small. My guess is that brains mets are unlikely at this time but since HER2 BC like to go to the brain, best to be cautious. Good luck 🙂

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