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All the things that weren't breast cancer

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.

Heather

Comments

  • purplecat
    purplecat Member Posts: 226

    You read my mind! I was just coming back here to update my other thread and saw this first. My summary: you can definitely have changes 4 years after radiation treatment that look suspicious on mammogram and MRI but come back as benign. I had to have a biopsy in May for visible/palpable changes to my radiated breast, and it came back as various kinds of radiation damage, all benign. I had to have another biopsy on Monday for changes spotted in my annual MRI, and this came back as other kinds of radiation damage. So, for anyone who needs assurance that not all changes in a radiated breast are cancer, even 4 years after treatment, here it is. Thanks for starting this thread!

  • moderators
    moderators Posts: 7,884

    Yes, we agree, justkeepswimmin -- great idea for a thread!

    After an initial breast cancer diagnosis, it can feel like another diagnosis is just around the corner and any health concern is "it". We appreciate you sharing that while it can always be tempting to jump to conclusions, taking a breath, investigating thoroughly, and remembering alternative outcomes are possible can result in better news than initially assumed.

    So, thanks for that insight and we hope this helps many others who are here and worried!

    --The Mods

  • ctmbsikia
    ctmbsikia Member Posts: 752

    Hi. What a crazy ride that is! Glad to hear no cancer.

    I've had one post treatment biopsy that was benign and was on the 6 mo schedule for awhile. I just spent $100 co pay for an orthopedic doc to tell me I have a plantar fibroma on my foot. Also benign, but it was a growth and once you've had a diagnosis there's no telling what these growths or other things showing up on tests may be unless you get checked.

    purplecat-I read the other thread where your results are benign. Wooo hoo!!

  • krose53
    krose53 Member Posts: 74

    What a journey! Interesting that I found this today It's my 5 year cancer anniversary I also happened to have a chest X-ray for for shortness of breath with exertion . Just saw my results, that indicate vague opacity with suspicion of infiltrates Not really sure what this means. The advice here is what I needed.
    Trying not spin out of control.

  • maggie15
    maggie15 Member Posts: 843

    Opacity with infiltrates can be caused by inflammation or infection as well as cancer. If X-rays show worsening infiltrates over time (maybe after treatment) they will usually do a chest CT which shows the lungs in much more detail. This process took about 8 weeks in my case. I hope things work out well for you.

  • purplecat
    purplecat Member Posts: 226

    Heather - in my giddiness over my own good news I completely blew past the fact that you have absolutely been through the wringer! I’m so glad everything has turned out well for you so far, and send good vibes that you’re about to get a good long break from all medical scares. Thanks for sharing your story. People definitely come to this forum to seek out symptoms similar to their own that turned out to be nothing, and although there’s no substitute for a consult with the doctor, sometimes just knowing that someone else experienced whatever-it-is without getting a cancer diagnosis is enough for the moment. Just being able to dial down the panic enough to function until the appointment is sometimes all I need.

  • JustKeepSwimmin
    JustKeepSwimmin Member Posts: 3

    Thanks Purplecat! Yeah, it was so much that I don't really know how to live anymore. There ought to be a manual! 😂 So glad your results were benign. 🥂 I'm not a poster, I'm more of a lurker, but I figured my story would probably help someone.

    I'm seeing my oncologist today, I'm going to ask her when the heck I get my energy back!

    Krose53- those findings are commonly found with inflammation. I work in health care and we're finding there are so many people with asymptomatic covid these days, it could be something like that. Until proven otherwise... not cancer. 💪

    Heather

  • krose53
    krose53 Member Posts: 74

    Thanks I appreciate the support and words of reason

  • purplecat
    purplecat Member Posts: 226

    Justkeepswimmin (great username, btw) - I wish there were a manual too. Even though my original diagnosis was optimistic and treatment was successful, the years and months since treatment have not let me forget for long that breast cancer and its treatments made some permanent changes to my body — and my mind/heart/sense of self too. And it's hard to relax and forget about it when you have to wonder if every tiny thing is going to turn out to be a recurrence. I've often heard it said that women are strong through diagnosis and treatment, do what we have to do, and then struggle emotionally afterwards. That's certainly been true for me. I sought out a therapist a couple months ago because I felt like I couldn’t tolerate any more of the scanxiety I knew lay ahead. That was helpful, and she also put me on to Gilda’s Club support groups, many of which are now available online. You might find those things helpful too.

  • XfitMama2
    XfitMama2 Member Posts: 18

    this thread was just what I needed right now.


    sendin healthy non-cancerous vibes to all.

    -xfitmama2

  • joules44
    joules44 Member Posts: 52

    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

  • mnsotamom74
    mnsotamom74 Member Posts: 28

    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!

  • heatherpsalm34-4
    heatherpsalm34-4 Member Posts: 50
    edited February 9

    I currently am waiting for CT scan as lymph nodes in my neck are suspicious and there is a new one on my collarbone. So I’m assuming it’s cancer! Also had cellulitis on my chest earlier this month, treated with strong antibiotics and cleared up, except for area pcp says is contact dermatitis and may have started the cellulitis. Of course now I’m petrified it’s skin Mets! Any encouragement out there?

    NOTE: Edited by Mods to remove photo. Posting pictures of symptoms is prohibited per our Community Rules.

  • 7of9
    7of9 Member Posts: 474

    Great post! Heather...in your pocket and hoping for good results!

    Just got back from Disney and did wonderful massage/ spa day. Cancelled my physical therapy and booked last minute vacation instead. Best 2 grand I ever spent. Their masseuse did a wonderful job working on my back/ left shoulder that was so tight from rads and hunched at desk jobs. Almost 2 weeks...pain free! We trucked all around 3 parks plus Disney Springs. 3 yrs of discomfort, to night aches, to scans, xrays...fell on ice in December on same shoulder. Tore something, after 4 months of colds, a stye on left eye, a double sized salivary gland removal surgery on upper left neck...such a lovely 2+ inch visible scar ( vitamin E and surgeon cutting on slight neck line it has faded much more than I ever expected)...but all of this crap happened on my left cancer side...after the fall I refused to go in....3 weeks of I should turned into not so bad and exercising at rec center walking 2 miles a day...not cancer! Vacation and pampering yourself is the answer!

  • ack1984
    ack1984 Member Posts: 1

    Thanks so much for this thread! It helped calm me down when I was having my most recent scare. I got diagnosed with triple negative breast cancer in 2022, and several months after treatment I found a small lump in the back of my neck. I freaked out, of course. My docs sent me in for an ultrasound but said they weren't worried about it. When I got the results, it said the lump was not a cyst and was "hypoechoic." Googling this led me into a quick spiral, I called my oncologist while she was playing tennis (😬). They said they would watch it, and six weeks later it hadn't grown. I went to get it removed, but it was gone. So… who knows!? But it wasn't cancer!

  • moderators
    moderators Posts: 7,884

    @ack1984, hi, and welcome to the BCO community! We know that searching for medical terms on the internet can make you feel anxious, but we're glad to hear that this thread provided some comfort during such a difficult time. Finding stories and experiences in which the outcome does not always lead to cancer is truly reassuring. Thanks a lot for sharing your story too!

    Again, welcome! We're looking forward to hearing more from you soon.

    The Mods