Topic: All the things that weren't breast cancer

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned — Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 16, 2022 08:48AM

Posted on: Nov 16, 2022 08:48AM

justkeepswimmin wrote:

I thought I would post for those people who are searching for stories similar to their own symptoms. It's terrifying having those things pop up on scans that might be cancer, your head goes to all the worst places. Anyway, here's me.

I was diagnosed triple pos stage 2-3 BC in Dec 2020, one node was positive on scans and confirmed by biopsy. I went through six months of chemo with herceptin and perjeta (none of which worked according to pathology), mastectomy to flat and ALND (5/18 nodes, so now stage 3a) and then hysterectomy and oopherectomy (three surgeries in three weeks) and then rads and Kadcyla. In total, 18m of treatment.

Early in the journey I had a full body CT and bone scan. The CT showed a 14mm mass in the lung and my oncologist thought I was stage 4, queue the serious/sad faces in clinic. I had biopsy the same day chemo started: It was cancer, but not breast cancer: lung cancer. A slow carcinoid. BOGO cancer: good news, weirdly.

Did I mention I'm vegan, a marathoner, and have never smoked? 🙄

I also had a genetic workup: Lynch Syndrome - puts me at risk for colon and uterine cancer.

May: MRI of right (non-cancer) breast showed what they thought was more cancer. Had US, Mammo and MRI and they decided it wasn't worth biopsying. 'Not cancer' but we'll follow up in six months.

Sept 2021: colonoscopy because of Lynch: one polyp found, 'precancerous' - not yet cancer. Now I get colonoscopies yearly.

After I was done chemo and radiation I had another CT scan 'to check on the lung thing'. Now it showed that mass and several lung nodules, enlarged mediastinal nodes, and a mass in my liver. In the words of my oncologist, "It looks like cancer is everywhere." More sad faces aimed at me. Had a MRI of the liver that showed it was some other benign thing (frankly after they said 'not cancer' I stopped listening). For mediastinal nodes and lungs they decided to do nothing and rescan in three months, after Christmas. Meanwhile, a fellow called me and said, "We have to biopsy your mediastinal nodes urgently." I asked who the heck he was, where is my oncologist ('not available'), and I called my radonc. He reviewed me at tumor boards and decided to scan in three months. I fired my always-giving-me-sad-faces medonc and got a new one.

Meanwhile a resident palpated my neck and decided I likely had cancer in my neck too because it was really prominent on my left (cancer) side. New onc palpated and said, "That is weird, but I don't really palpate any nodes so we'll check at that scan in a month. Don't let it drive you crazy over the holidays!"

It totally drove me crazy over the holidays.

At the Jan scan: neck normal, lung nodules stable, mediastinal nodes reduced: so likely not cancer, 'but we'll check again in July'.

Physio: neck is muscle that is pulled down from the tightened fascia from the mastectomy+rads, my left shoulderblade is also winged out because of this pulling. But not cancer.

Feb: Routine mammogram of healthy breast (right) showed increased calcifications in a different spot than the thing they had seen before: had two mammograms, one of which had computer-guided biopsy (March) which was negative. Not cancer.

July scan: lung nodules stable, everything else negative, so likely not cancer. They think it's damage from rads.

August: persistent yet intermittent hip pain started, and didn't go away. At three months of this I asked my family doc for a scan, which recently came back normal. Not cancer. Greater trochanter pain, thanks Anastrozole!

So all that to say: I have, in various times in my treatment, been told that I have cancer in my left breast and lymph nodes (true). But also have been investigated for cancer in my liver, lungs, mediastinal nodes, hip, neck, colon and right breast, none of which was (yet).

Getting back to life after preparing to die so many times is really strangely difficult. My recurrence risk is high, so I know that spectre is looming and may return at any time. I don't know how long I have. But for now, for today... I'm okay, and I'm enjoying my time with my kids and husband. It feels like bonus time.

So, "don't borrow trouble." Until proven otherwise, it's not cancer. ❤


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Nov 21, 2022 05:33PM joules44 wrote:

Purplecat I can’t even! I am 4 years out from treatment and my right breast, the one that was radiated and had the lumpectomy, suddenly looks and feels different. My oncologist’s urgent care clinic had me in immediately and did a manual breast exam and found nothing. I am scheduled for a diagnostic mammogram and ultrasound next month, the soonest I could get in. meanwhile im spiralling out fearing the worst. I am so happy to see your post!! Intuitively I feel like it’s radiation damage but it seems illogical to show up now. Im gonna hold on to your story and hope for the best! Thank uou

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, ER+/PR+, HER2+ Chemotherapy 10/15/2018 Taxol (paclitaxel) Surgery Lumpectomy (Right); Lymph node removal (Right): Sentinel Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Femara (letrozole)
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Nov 21, 2022 06:17PM mnsotamom74 wrote:

Heather, this post is Exactly what I needed. I don’t come on much because I have severe anxiety and I literally will read someone’s symptoms and within a day I have those symptoms. I’ve been having sciatic pain on/off for almost three years. I’ve had pet and ct scans and ct shows bulging disc and degenerative disease. New oncologist wants me to have an MRI.. boom.. I’m so scared that I can hardly stand it. So I came back to these trusted boards to find some inspiration and I see this post right off. Thank you. I needed this right now. God Bless You!

Dx 10/25/2018, DCIS/IDC/IDC: Cribriform, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Surgery 11/5/2018 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 1/7/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/4/2019 Hormonal Therapy Arimidex (anastrozole)

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