Just diagnosed 7/31, waiting for staging. Terrified.

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lauawill
lauawill Member Posts: 8
edited August 2020 in Just Diagnosed

After a chest x-ray on 7/28 for something else entirely showed a mass of about 2.5cm in my left breast, I've now had a mammogram with ultrasound, a biopsy of the mass and a nearby lymph node, and a breast MRI. The biopsy showed invasive ductal carcinoma and cancer cells in the lymph node. When the care coordinator called yesterday to discuss the MRI results, she said there were "other areas of concern," including the sternum, spine, ribs, liver, nearby lymph nodes, and a distant lymph node. The care team meeting I was supposed to have tomorrow was changed to just the medical oncologist. I will have a bone scan on Thursday and a CT scan on Monday, August 10.

I'm terrified. I spent all night last night learning about stage IV metastatic breast cancer. I think the cancer is already in my liver and bones. Because here's the thing: I went in for the chest x-ray because of unexplained chest pain that my primary diagnosed over the phone as costochondritis. After six weeks the pain wasn't going away, so my primary, who works out of a clinic without x-ray capabilities, sent me to urgent care for the chest x-ray. The tech and PA at the urgent care facility both went white when they saw the mass on film. By the time I left that urgent care I already had a mammogram scheduled for the next morning. The chest pain has subsided somewhat, but now my lower right side aches -- where my liver is, right? -- and occasionally I get a twinge in my lower ribcage. My neck is so stiff I can't turn my head all the way to the right. I'm sure some of that is psychosomatic, but all of it?

I'm really scared. I'm 50 years old, I have been in excellent health my whole life, and now this. There is a history of breast cancer in my family so I suppose I shouldn't be shocked. I know people with stage IV metastatic breast cancer are living longer than ever and even though it's incurable, it's not unmanageable. And I don't even know for sure that it isn't stage III and they're just being overly cautious.

I have a friend who was diagnosed with stage IV about four years ago, and she is doing well. She runs 5k races regularly and did a triathlon a couple summers ago. So I know it's possible. But I'm so sad and anxious and depressed I can't deal with things. My thoughts keep spinning and spinning. My husband and daughter (age 21) are being as supportive and positive as possible, but we are all brittle and snappish with each other right now. And nobody's getting any sleep.

Was the "staging" part this awful for everyone? Will it get better once I have a treatment plan? I'm so angry and confused.

Comments

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2020

    I don't understand how distant mets can be determined from just a breast MRI. I hope you get more helpful information at your other appointments.

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2020

    Hi there, lauawill. We're so sorry you find yourself here, we know this is hard to process. Especially when you don't have very many answers! But we're here for you every step of the way. Hopefully your scans will shed more light on what you're dealing with, and you;re able to come up with a plan.

    The Mods

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    It doesn't matter if you have family history or an inkling this diagnosis could be coming, it still hits you like a Mack truck for a good few weeks. I thought I would never stop crying - healthy my whole life and no family history. The sense of unfairness really doesn't help to add to the medical issue.

    The Radiologist who did my second set of biopsies used the same terminology about 'areas of concern' on imaging, however she mentioned that while she was poking at one of those areas of concern with the biopsy needle. My CT scan had come in at that time, though, and she didn't elaborate on what the areas were, but inevitably it had picked up the mets in my lower back/pelvis (which they then waited for the bone scan to confirm while still working me up for surgery).

    I can sense the panic in your post and I know mine probably read the exact same way last October. If it is Stage IV at the very very least you can be thankful that you aren't having significant back pain or something hasn't fractured yet. If its not, well, that is worth a lot of celebration in itself.

    As Jana said, if it turns out the first way, feel free to take your time and then come join us de novo ladies on the Stage IV De Novo thread.

  • Gamb
    Gamb Member Posts: 599
    edited August 2020

    I just want to say that cancer sucks!!! The ladies on these boards are so knowledge and kind, I could not have done this without all of you.

  • lauawill
    lauawill Member Posts: 8
    edited August 2020

    It's Stage IV, already in the bones. I'm waiting for a CT scan on Monday to confirm the liver. If all goes according to plan, I will start chemo next week. Four rounds every two weeks for 8 weeks, and then weekly for 12 more. This seems very aggressive to me.

    I've progressed from terrified to horribly, horribly depressed.

  • moth
    moth Member Posts: 4,800
    edited August 2020

    hi lauawill, sorry that it's been confirmed. It really sucks.

    4+12 sounds like the AC + taxol protocol which many of us here have had.. If you have tumor hormone marker results, consider adding it all to your sigline, and then join the monthly starting chemo threads as well as the de novo.

    It gets better. The horrible terrified feeling does settle a bit, especially once you start treatment.

    It's a pretty standard opening treatment, esp for a de novo. One thing I want to gently warn about is that most, not all, but most stage 4s are in some type of treatment forever. Might be oral might be IV, shots...might be chemo, hormone therapy, immunotherapy... but most of us are on something.

    Best wishes to you

  • edwards750
    edwards750 Member Posts: 3,761
    edited August 2020

    So sorry you got the dreaded news. While I am not Stage IV my sister was although not de novo. She endured tests, scans and drugs constantly. It definitely takes its toll.

    The Stage IV ladies can and will be a godsend for you. Only they know how you feel and can offer sage advice about drugs and tests.

    This forum has been my lifeline since I was DX in 2011 with Stage 1b, Grade 1 IDC. Fortunately I am 9 years out this month although I know there are no guarantees.

    Keep the faith and keep us posted.

    Diane

  • lauawill
    lauawill Member Posts: 8
    edited August 2020

    Stage IV, bone and liver mets, and the CT scan showed something in the pleura of the lungs that hasn't quite been pinpointed yet. I started chemo on Tuesday, 8/11, and actually feel better now than I have in weeks. I think I didn't realize just how lousy I'd been feeling until I started treatment. I'm in a limbo phase of sorts. Feeling great after the first chemo round -- a little nausea, but mostly pain free for the first time since mid-June -- but knowing that the worst is yet to come.

    Thanks for all the support, gang. Just trying to stay positive and remember that today is not the end, and neither is tomorrow.

    Laura

  • moth
    moth Member Posts: 4,800
    edited August 2020

    Laura, glad you're feeling ok after your chemo start. The bone mets thread and liver mets thread are both pretty active, with lots of info and support. Lung is quieter but it exists as well. Come chat with us :)

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